Welcome to our research blog on the effects of arthritis on your life. We are running a number of parallel projects of which this is just one. The purpose of this Blog is to help us frame the questions for a number of future projects by finding out a bit more about the kind of things that patients and carers of people with arthritis consider to be important.

Over the course of the next couple of months we will be launching research blogs into the group of conditions which are Arthritis. In particular we will be looking at Osteoarthritis, Rheumatoid arthritis, Septic arthritis, Juvenile arthritis, Still's disease, Ankylosing spondylitis, Gout and pseudogout. Please get in touch with me if you would be keen on contributing to any of these studies as we are always keen on talking with patients about their conditions.
We are particularly interested in the impact of arthritis

• Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?

• What is the history of arthritis in your family? Do you suffer from any other conditions?

• What treatments do you use?

• Has you diet had to change? What other lifestyle impacts have there been? Mobility issues for example?

• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?

• What do you think of the information available about arthritis? How would you like to see support for the

I look forward to reading your comments and, of course, thank you very much for your input.

Best wishes
Belinda

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Belinda | 18/05/2007 14:25:00

Thanks for dropping in please start blogging in the empty box below

Lyn Gottschalk | 27/06/2007 10:10:00

Hello! I am Lyn, the co-owner/moderator of a arthritis/autoimmune disease support group on yahoo - RA-Factor. I just added your Blog to our links section at : http://health.groups.yahoo.com/group/ra-factor/links Here one can find MANY links to arthritis sites, medication links, and just about anything to do with having the many types of arthritis. I myself have RA, which I was diagnosed with at age 27, and am now 52. Along the way I gathered other diagnoses to push me way over the 3 disease limit! ;D I also have OA, Fibromyalgia, CFS, TMJ, Sjogrens Syndrome, Raynauds Syndrome, Deg Disk Dis., herniated disk,migraines, peripheral neuropathy, RLS, ulcerative colitis,and have had bouts with pericarditis and costochondritis. I have a right TKR and THR, and a right fused wrist. Many replacements are on the table again also. I became RF positive after the first 8 years. I am also considered drug tolerant or drug resistant, in that I have been on every single dmard, and biological except Orencia which is going for prior auth right now. My RA continued unabated, and I have been permanently disabled since 1992 ( date I was approved for SSDI). I am also involved/co-edit the autoimmune and chronic disease newsletter on yahoo ( ai_cd). I live in Green Bay, WI., alone, divorced with 6 cats, a parakeet, a support dog, and have a wonderful home health aide which makes life possible and bearable for me. My only avenue of support , being disabled and homebound at present...IS online support groups/boards/blogs, so I am very happy to see this project! Sorry for being so long-winded, but this is actually my standard "intro" to new members on our group, so I thought it would make a decent summary of "me". Thanks for inviting our group here! I do have to tell you , that this small area is very tough to write an intro like this on...hope this is what you wanted, and that there aren't a bazillion typos!!

Mark F. 6/27/07 | 27/06/2007 16:31:00

Hi, I'm Mark and this is the short version. • Firstly what kind of arthritis do you have? Osteoarthritis When was it diagnosed and at what age were you then? 2004 I was 47 what is the history of arthritis in your family? Limited. I go not remember if either of my parents had any arthritis. Do you suffer from any other conditions? Chronic Pain with acute episodes, RLS, Hypertension (due to pain) Sinusitis, Left knee pops out of joint now, Arthritis in my r shoulder (Rebuilt in 1983), Mood disorder. I am unemployable due to my pain which is affected by the weather and from fighting the Veterans Administration and Social Security. • What treatments do you use? Medication, exercising, meditation and try to stay busy. • Has you diet had to change? I eat healthier now. Not as many Carbs and taking vitamins. What other lifestyle impacts have there been? Loss of employment, Loss of family members, loss of friends, social life is zero and I have become some what of a hermit because I can never plan on an activity because I have great pain w/weather changes (barometric pressure changes) Mobility issues for example? I now have 3 braces on my left knee, one brace on my right knee, an orthopedic shoe wedge, and a cane. • Have you ever had or been offered Arthroplasty? Drs say no more surgeries! Could you tell us what was involved? • What do you think of the information available about arthritis? Information about the condition is pretty straight forward but there is nothing out there that prepares you for the secondary effects of you condition, how to cope with people who do not believe that you are in pain and think you are faking it. How would you like to see support for the condition improved in your country? Focus on the complete individual and not just one aspect of the person. While how the disease progresses my be intriguing to the doctor, the devastative affect the medical condition has on the person who once was very active in their community but due to their condition the person had to move away from friends, family members no longer visit, loss of employment and loss of hobbies. All this needs to be addressed. I have had l knee problems from 1977. While in the USAF my l knee started hurting and the doctors diagnosed the condition as chrondromalacia. A steady and gradual slow down of activities until the knee ‘blew up.’ Now I have lost my home in Florida, Moved into my sisters home in Georgia, to seek medical care from the Veterans Administration in Alabama, having my BNL hate me, had to camp out through a winter, because I was homeless, trying to make new friends in-between episodes of sever pain and try to have some what a normal life

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peterjones 27/06/2007 17:45:00

i suffer badley from gout in my ankles and am currentlylooking for a diet sheet that would help me eat the correct food so to ease my problems so i would be very intrested

TeresaW | 28/06/2007 13:28:00

I have (or had) Osteo Arthritis in my right hip, it was diagnosed nearly 2 years ago, although I have had pain in my hip for over 10 years, thinking it was muscular problem. I now know it was the common symptoms of OA. I was 46. I am the third generation to have had OA in the right hip, and it is believed it is due to mild childhood hip displasia, though it was unknown at the time. For most of the time I was treated with NSAIDS, Ibuprofen, which was quite effective, also cortisone directly into the joint, very painful but did help for a few weeks. Eventually ended up combining Ibuprofen and Paracetamol during the day and using Dihydrocodeine at night. Nights were always the worst. At first the symptoms could usually be walked off, but at the time of diagnosis this had long passed and walking any distance would make it worse, hence the need to finally visit my GP to find out what was going on. Walking became very much an issue, and pain management was not good in my job, so eventually had to give up work, to be able to manage it better. I had a THR in March of this year, a full ceramic joint without cement, which meant that, unlike those with cement, I could not walk on it for 6 weeks, while allowing the bone to grow around it. This was difficult, as I had not been told this before the operation, and because at the time I lived in a first floor flat, I could not go out for those 6 weeks due to the steep narrow stairs. (I am now in a ground floor flat and life is much better) The operation itself involved being numbed by epidural and sedated, and a deep incision in the thigh, about 14 iches long. I was awake immedieately after and was well cared for, while confined to bed for 3 days, being allowed to sit in a chair for a short while on the third day. I was then shown how to hop with a frame, and once my confidence had grown I was put on elbow crutches. I must say here, my right foot and knee swelled to enourmous proportions, and was becoming uncomfortable for a while but this is normal after a hip replacement. It only lasted the 6 weeks but I am told it sometimes goes on for months. I managed to come off painkillers on day 4 after the op, just taking Ibuprofen, though some continued with them much longer. I must say, though the operation is painful to begin with, it is nothing like the gnawing grinding pain of the arthritis, and you feel the benefit right away. I couldn't find much information online from UK sites, at least not in laymans language, except for the ARC site, but even then the information was basic. I gained more knowledge from US sites which seem to be more forthcoming in their information for arthritis sufferers. The information I received from the occupational therapist at the local hospital prior to the operation, was the most valuable, in that she showed us the exercises we needed to do before and after, helped us with adjusting our walking aids to the correct height, and advised what adjustments we would need to make at home, for instance raised toilet seats and bars, height of chairs and bed etc. Now it is just over three months since the THR and I am walking unaided around the house, and almost ready to walk unaided outside..though my brain is still telling me that I have the old worn out hip, and wants me to walk like it! I am slowly getting my life back and feeling more confident about the future. I have had the familiar pain in my left groin, but at the moment I am hoping that it is just my pelvis realigning itself, as it was normal on X-rays, and it is getting better. I still have full mobility in that joint, so I am not worried for now. I almost have full mobility in the new joint which has surprised me. There isn't much I can't do that I couldn't do before, though I have to be careful with turning. I can just about reach my toenails to cut them, not well, a bit ragged but I can get there! Practise makes perfect. So for anyone facing a THR, don't worry, you will be fine, and recovery is really easy compared to what you have to put up with now. I just think its a shame that a hip has to have deteriorated to a certain unbearable point where your quality of life has to suffer, before they consider replacing it.

ciamcindym | 28/06/2007 13:51:00

I was diagnosed with OA when I was 27. It affected my hands. Besides being a little achy it didn't slow me doooown at all. By the time I wan 40 it had "spread out ward. My shoulderss, wrists, elbos, neck. Then I was also diagnosed with moderate OA of the knees.. I was a worker in a nursing home and was ask to slow down or change jobs. I was started on an antiinflamitory. By 45 my back was badd. . I changed to a desk job, didn't like it then went to home health care. Thinking that would be easier. At 50 I was forced into retirement. I was approved for SSI disability on the first try in less than 3 monthsl Less than one month after my retirement I received home health care. I am now 57. I have had three back surgries. carpal tunnel on both wrists. I am on oxycontin for pain control, plus an nsaid. I have to use a cane. By x-ray, ther is no major joint (and most smaller ones) that aren't affect by OA. I have had peopple get up and move when sitting next to me, because of bone noises, the grinding and popping. They have o ffered knee surgery, but in my mind it is to close to my last beack surgery.



Vaughn | 28/06/2007 14:18:00

I was diagnosed with RA at the age of 36. At the time I couldn't walk and I was in so much pain that I needed relief bad. I wish that initial diagnosis had been correct, but alas, it was a misdiagnosis and I did not have RA, I had Wegener's Granulomatosis. I have a blog on Myspace talking about my experiences in detail under myspace.com/vaughnsizemore. If you're interested, please read it and leave your comments. Where I come down with arthritis is I have several similar symptoms, they're just from another source.

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Teresa | 28/06/2007 16:14:00

Hi, I dont think they really ever told me what kind of arthritis that I have. I had polio when I was a year old. I remeber when I was real small they would have to carry me to bed because my legs hurt so bad I could hardly walk and they said it was arthritis due the polio. I'm 47, with post polio syndrome, I am having to deal with cronic pain in all my joints. I had cracked my right clavical in high school by the time I was 22 they had to remove it because it moved around and the bone disintigrated. I cracked my right clavical in 2000 and after a rescection an inch and a half of it has disintigrated and they now have to remove my left clavical. I have to have injections in the spine for the arthritis in my neck, and the pulling on my shoulders dont help matters much. I have been in pain all my life, I moved to the deasert to Las Vegas, due to the weather here I haven't had to have too many meds but I am now disabled because of the cronic pain and I know it is only going to get worse. At least I dont have to have the injections out here in the deasert. I dont know what eles I can do.

gonexango | 28/06/2007 16:38:00

I have degenerative arthritis in my neck and lower spine since my early 40's. I am now 53. It runs on my mother's side of the family.Along with 3 back injuries and a knee injury while working as a RN I was in a great deal of pain.I also have fibromylasia. I am now pain free, thank God! Mangosteen, the patented formula, is the only one I trust. Gives me better pain relief than Vioxx, Celebrex and many others. Onl;y a few onces a day keeps me well controled. May go to website; bwhary.gomangosteen.net for more info.

B.C. | 28/06/2007 19:27:00

Hello. I am 71, female, and have osteoarthritis for about ten years, it has sort of crept up on me! Mostly affected in my back, and knees, but my fingers are slowly being affected and getting painful. My mother and also my grandmother suffered from arthritis, my mother having a hip replacement at the age of 70. I have months when I am painfree and mobile and I forget about it. Then, las has just happened for about a week or so, I wake up in the night in pain, and also stiffen up. I make sure that I keep active as much as I can, and walk the dog every day. But I notice my walks get shorter when I am in pain. I have also had one episode of pseudogout in my knee. My doctor will give me any pills I want, but I would rather be in control myself, so I only take painkillers as and when needed. I realise, especially on reading about other people on here, that my arthritis is not, as yet, chronic. I would dearly love it to remain so, but what I do not understand is the radical change I suffer, going from normal to painful. It always take me by surprise.

Barbara Blackshear | 29/06/2007 12:39:00

Hi, even though I have suffered from sacrolitis for many years, main symptom being sacatic nerve pain since 1999, I was not actually diagnosed until August 2006. I have Reiter's Syndrome. Apparently my disease didn't fully show itself until July 2006 and my doctor at the time couldn't figure out what was wrong with me. I was in extreme misery! It wasn't until I started telling him about my shin on my left leg going numb did he decide to finally do an MRI. When he got the results he clicked to what was wrong with me even though I had a case of Uvietis a year before, which is a known symptom of this disease. I am still suffering from the disease almost a year later even though I have been on treatment. I have personally changed my diet to leaner meats such as ground turkey and chicken and I stay away from red meat. Since doing this I have noticed that my symptoms have improved, a little. I am currently 30 years old and even though I hurt I joke about how when you turn 30 is when your warranty goes out! LOL. I cannot do like I have done before. Before this ugly disease fully rared its head I was able to do anything that I wanted to. Climb latters, lay on the floor, sit on the floor, lift a 100 pounds and so on. I cannot do that any more. If I lift anything heavier than 10-15 pounds it aggervates my condition and I will suffer a flare up which means that I am reduced to being in bed. Most days I walk with a limp or waddle because my hips hurt so that I can barely lift my legs to walk. I am currently on Azulphidine 2500mg everyday(misspelled?), methotrexate 15mg once a week, Naproxen 500mg daily, hydrocodone 5/500mg even though it doesn't help much at times, folic acid 25mg.

John Dowbiggin | 29/06/2007 13:36:00

Hi, I have Arthritis in my right knee and hip. The knee showed itself about 11 years ago and I think stems from a heavy fall in took in a shower about 15 years ago and never had it tended. The hip as shown itself more recently - last 3-4 years and the fact that I am massively overweight has been a big factor. I have been taking Glucosamine (sometimes with Chondroitin) for a couple of years now and this has made a bid difference - most of the time I don't have any problems now and can manage to walk upstairs properly rather than one at time. Cold and wet weather seems to make a big difference (my doctor has arthrisits in both knees which kill him in this country but he is retring to Spain where he says he has a lot less problems). The only medication I take is Ibuprofen (tablets and gel applied topiclly) on the odd occasions I feel to much discomfort or have a lot of activity planned.

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Fay D | 29/06/2007 13:51:00

I have rhummatoid, osteo, and osteoporosis in the spine. raynauds. I am wheelchair dependant, on morphine for the pain have shrunk 4 inches because my spine has compacted and the rest of the vertabrae are I quote of very poor density. The osteo arthritis runs in the family even my grandchildren have been dianosed with it. effect on my life have to be dependant on others and not being able to do the things I want to do.



Joyce Cox | 29/06/2007 14:03:00

I am 66 years old and have arthritis (osteo) for as long as I can remember. It it not so debilitating as some of the other people who have written in but affects my feet, hands, knees, elbows, neck and hips to varying degrees. On good days I don't notice it too much probably because I have learned to live with it but on bad days, apart from the pain, I feel quite tired and not in the mood to do anything very much. I had never mentioned my joint pains to my GP and was not aware that the diagnosis had been made until I was invited to test a drug which helps keep the blood pressure down while controlling the pain. The tablets I was testing had a very positive effect on me, keeping me painfree and feeling good.

john marshall | 29/06/2007 15:19:00

i have been diagnosed with osteoarthritis in my spine,not long after a car crash.i have had it now for 10 year,and it affects my daily life in a big way.I cannot get out of bed without a struggle and i find it hard to walk distances.I have had every painkiller conceivable,from cocodamol to right now gabapentin,and tramadol/The latter seem to keep th pain to a dull roar,which is a lot better than before.It is a daily struggle,but its something you have to get used to,if thats the right way to put it.

phyllis b | 29/06/2007 15:20:00

I was diagnosed with osteoarthritis in my left hip after three or four years of intermittent pain and discomfort in my groin, back and hip joint. The symtoms began to get worse, I found I started to have trouble walking, stiffness and pain. At first the hospital said it was my back causing refered pain, but an exray showed deterioation in my hip joint, and that my right hip was also not in a good state. I found that at my first visit to see a specialist at the hospital they were not keen to replace the hip joint as they felt I was too young at 50 for this surgery because of the limited life of the new joint and also revision was more complicated if the new joint wore out. By this stage my life was totally changed from being a very active and sporty person I found I was struggling to walk 20 yards. I went back to the hospital and had to be very firm in saying I did not want to wait till I was older to have the operation as I wanted to live my life now and not have this constant pain, lack of sleep and depression that comes with all of the above, by this time I found very little help from any medication. Luckily this time I saw a different specialist who was very supportive of my views. I had THR on my left hip in January and was amazed at the difference it made to my life in a few weeks. I made sure I did all the exercises they gave me and went walking every day Within two months I could almost forget I had a false hip. Unfortunately my right hip had got alot worse so in November04 I had a THR on the right side, this time an oxinium replacement rather than a ceramic one, the oxinium replacement they hope will last as long as me!! LETS HOPE THATS A LONG TIME! I would recommend to everyone to have that replacement either hip or knee and if the doctors try to put you off be very firm and insist you want the operation now while you are young enough to enjoy life. Three years on, life is so much better, no more pain - what a joy! I am playing alittle golf and tennis no squash I am afraid but so good to be able to be active again. I am hopeful I will continue to have a good quality of life for the next ten years or so and if I need further surgery in my seventies and it is not so successful I will not mind because in my fifties life was so so much better. All I can say is GO FOR IT!!

Anthony J. Martin | 29/06/2007 15:47:00

I have suffered with Arthritis for the past twenty odd years. I am now 74, but keep going. I have a chair life which I try not to use all the time. Although it is painful it is imperative that one does not allow ones self to seize up. Keep a cheerful disposition and you will overcome many trials.

Penny Mullis | 29/06/2007 16:48:00

I have had osteo arthritis for over 2 years now following osteomyilitis in my right foot when I nearly lost my leg. THe subsequent za; of extra strength antibiotics for 7 weeks, saw off the infection but left my ankles very stiff and they simply don't work very well! I find when I rest too much and also first thing in the morning I am very stiff and difficult to get limbs moving. I take 3to4 paracetamol a day and without these could not function as I run a guest house and am up and down stairs all day. However, I find keeping moving helps and I consider myself lucky to have both legs and only some bone missing in my foot. Exercise helps and swimming is better but I don't get much time!

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Jan thomas | 29/06/2007 16:58:00

I'm not sure that what i have is arthritis, as it began the day i tripped and twisted my knee, which is not how arthritis usually starts in my experience. I have no family history since I was adopted and have nomedical records of my biological family. I have a severly disable knee which is very painful and will not take my weight; the other knee is just painful, as id my back, sometimes my hip and my right arm, but not particularly at the joints. since the NHS dhas done nothing fo rme other than refer me to a phsio who tried acupincture and a TENS machine, neither of which worked, then offer me a knee replacement, which my GP said was not very desirable since they don't last and I was young to have one. Now I just take whatever pain-killers I can get - the nes he prescribed were withdrawn as dangerous just after I got them! I find I can move better if I take steroids 9 peprednisolone) which they will give me for my asthma but not for the knee, so I just lie about what I use them for - with 10 taken 4,3,2,1 over 4 days plus painkillers I get a few days mobility- do this opnce a month - found the program on the Johns hopkins website and have more faith in US doctors than the NHS lot.

john smith 29/06/2007 | 29/06/2007 18:11:00

I suffer from arthritis in my shoulder and base of the spine.The shoulder was diagnosed in 2004 and received an operation to relieve the problem but unfortunately things are back the way they were and i'm ongoing physcio for this problem. The arthtitis in the base of my spine was diagnosed 14/04/2007 and there is nothing that can be done for this problem.I've been told that if I don't lose weight I could end upin a wheelchair but I also have a heart condition which makes it hard to exercise so you can see the problems I'm having.I have just recieved an appointed for the pain clinic(aug 2007)) which may help with my walking difficulties and can start excercising



robdor | 29/06/2007 18:48:00

I am 63 years of age & married. I was diagnosed with osteo arthritis about 5 years ago. This is in my spine & hip it manifest itself following a viral infection, which for many months was not diagnosed. It has left me with pain, tiredness & sometimes exhaustion. I have recently participated in a 6 week self management course. Expert Patient Programme (EPP). run by my local PCT. This is a good course & well worth attending. I have now trained as a tutor & am about to deliver the first session of the six week course starting next week.

kathy alexander | 29/06/2007 19:28:00

I was diagnosed with rheumatoid arthritus after having my second child when I was 33years old. I wouldnt take any medication as I was feeding her. Then I became pregnant with my 3rd child and the arthritus went away. It came back 5 years later worse then ever. I had to give up my job. I joined the arthritus association and followed their programme. I gradually got better. Now I am working pt. and only take glucosamine. I joined a gym to keep me active and am now quite alright. I wouldnt take the doctors meds. too many side effects. I do avoid certain foods and fizzy drinks.

Gillian Miller | 29/06/2007 20:04:00

There is no history of RA in my family yet I developed it 15 years ago (it took a week to go through my entire body from 2 finger joints) & my late brother developed gout! I had a young child aged 5 and a toddler aged 15 months and have never received any help from anyone to look after them. I saw the most useless rheumy you could ever meet, he put me on methotrexate then told me I could have children whilst taking it!!! My next rheumy put me on hydrochloroquine which made me very ill. She also told me for nearly 2 years that I was in too much pain before diagnosing fybromyalgia & Reynolds Disease. The most important thing is to have a good diet, low acid and to find supplements that help support the NHS medication. It may be worth excluding various items from your diet to see if it helps eg grains, milk products or red meat. Many people have food intolerances which will cause or aggravate the condition. My sister-in-law has a rotating diet because she found that it improved her RA dramatically as she has lots of intolerances. Keep moving (not necessarily 1 mile brisk walks) but try to rotate all your joints a couple of times a day. If not, you stiffen up which makes you worse. Pace yourself especially when you feel good and don't try to overdo it. As for support, don't make me laugh. I've had to fight for everything the whole time and now my husband has MS and found getting treatment are actually worse for neurological conditions, few neurologists and a vaguer disease which will leave you in a wheelchair so why bother to help? I discovered a few years ago that an underactive thyroid probably caused these illnesses. (My mum has a condition where her thyroxine has to be in her body in excess to absorb it. My doctors continually told me that my blood was the top end of normal until I doscovered that they were testing T4, not T3. I now take thyroxine, probably not enough but I cannot persuade them to send me back to the consultant!)

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Maureen | 29/06/2007 20:45:00

I have osteoarthritis, had thr & tkr, I also have Charcot Marie Tooth disease a neuro muscular dis with club feet so I am used to surgery which has beem very sucsessful, I have taken dichlofenac an anti inflamitary 30 years, also co codamol for pain occasionaly. Despite all this I lived life to the full, worked 35 years in nursing & midwifery , married & brought up a family.

Peter E D Coates | 29/06/2007 20:55:00

In my late fifties, about 20 years ago, I noticed that after a game of squash, I felt discomfort in my ankles. My GP referred me to an orthopaedic specialist, who advised my to give up squash, as the cartileges in my ankles had thinned, causing the discomfort I exoerienced after exertion. I was told this was osteo-arthritis. As I grew older, it became rather uncomfortable to walk any distance, but I have always been able to walk as far as necessary in order to live a normal life. I have never felt the need to take any pain relief measures. I have since had 2 DVTs in my right leg, and as a result the discomfort of walking has lessened in my right foot. More recently, as a result of steroid treatment for a kidney problem, I have developed mild type 2 diabetes, and this has slightly numbed both my feet. A couple of years ago, I consulted another orthopod who specialised in treating feet, and he would not countenand any kind of operation, but I was provided with surgiacl boots, which are a help. I still drive, and care for a wife who has developing Alzheiner's dementia, so it is fortuunate that I am still able to walk around the supermarket, and move about the flat. I no longer have to do any gardening or lawn mowing, so my life style has been adjusted to my mobility problems, which I now scarely notice.

Doeidea | 29/06/2007 22:04:00

Arthritis - hmm - I seemed to have developed it a few years after having two ribs removed during renal surgery. I was born with cystinurea and have had some 13 or 14 operations to remove the cursed stones. The ribs were removed to facilitate entrance to the kidneys. Which might have helped the surgeon but it seemed as though the arthritis just zeroed in on the thoracic area and that is the way we met. In addition to Arthritis and Cystinurea I have blockages in the heart, high blood pressure, high cholesterol. A new event has appeared in the form of numbness down my left side whenever I get cold, stressed or just whenever. The neurologists I have seen seem united in this being of migrainous origin. I take numerous medications, but for pain relief I take dihydrocodeine and add a couple of paracetamol just to make the darn things work. I am restricted in what pain relief I can take as a result of my other health problems. However, I do take citalopram to help with the depression. The heart problem is in the form of two blockages which gives rise to lots of angina. The angioplasty failed miserably because the location of the blockages and the diameter of my arteries really didn't want to co-operate. I go to the gym twice a week and give a feeble attempt at keeping mobile. I feel I must keep moving about or I will just seize up. Diet can be a problem as I have a diet for renal disease (very low protein, easy on the calcium) which makes it difficult to follow any other diets. However, I am a firm believer in fish oils and take suppliments. In the past I have attended a pain clinic, they tried injections in my spine which resulted in various areas going completely numb. Then one day the injection actually stopped the pain. My cup ranneth over - momentarily. The doc informed me that they could make me pain-free permanently but the risk involved was that I could end up paralysed. Never having been much of a gambler - I passed up on that opportunity. The next offer of pain relief came in the shape of a TENS machine - nice feeling not much pain relief. I spent 12 months housebound, because I couldn't walk far with the numbness in my left side and chronic back pain not to mention the angina which seems to plague me. I looked more like quasi modo when I tried to walk. I was awarded disability living allowance earlier this year - I am 59 now. My own fears prevented me from applying sooner as I was turned down 10 years ago and found the experience then humiliating. Thankfully, this time I had help with the forms and I am now able to get about in a mobility vehicle, which has given me a whole new outlook on life. I can cope with the depression if I can get out of the house. The hardest thing I find is trying to stay positive about things, and above all trying to stay mobile. The arthritis seems to be spreading to all my joints now, the pain some days is unbearable. Like most people it is worse in wet weather, that is when the whole cacophony of aches and pains all join forces in an attempt to make me give up. The hips, knees and shoulders aren't quite as bad as my spine but they still let me know they are aching.

Sue Price | 29/06/2007 22:16:00

HISTORY I have osteo arthritis in a number of joints (spine, both knees, hips and ankles). It started following a discectomy some 17 years ago which resulted in on going back pain and a neuropathy in my right sciatic nerve. I was diagnosed with osteoarthitis in my spine about 2 years after this. This of course reduced my mobility and I reduced my exercise, ate more because I was bored/ scared/ unhappy and my weight ballooned (to 24 stones at one point!) DRUGS I am a pharmacist so I am on my feet all day for 8 to 9 hours a day 6 days a week! My pain is moderate while I am busy through the day and can be well controlled with mild analgesics such as co-codamol 8/500 and codeine 15- 30mg. I do take the maximum dose of co-codamol (8 tablets) every day as it keeps the pain tolerable. (I can't take NSAID as they cause gastric ulceration, PPI don't help me with this and misoprostol causes me to bleed vaginally all of the time I take it!). Evenings / night times become excrutiating when I sit down, so I tend to hobble about - and take major doses of codeine! I have been through the pain clinics (for associated neuropathic pain) and suffered weird adverse effects to everything they suggested. Actually, I was OK on nerve blocks, but the benefits only lasted for 4 - 6 weeks post injection. The only options left are to escalate up the analgesic ladder to morphine/ strong opiate. I'm trying to hold back on that one so I can use it later in life. (I am 47). I do believe the evidence base for glucosamine and take 1500mg a day (good quality though - don't ever buy the cheap stuff!). I also take fish oils daily (EyeQ) but that is more for my mental function than anything else. EXERCISE I find that exercise helps - at least mentally!!! So I walk the 2.5 miles to and from work 3 times a week, walk for 20 minutes with the dog every morning (i.e. 7 x a week), swim for 20 minutes once a week, see a personal trainer for an hour a week and try to work out at home (cross trainer, exercise bike and weights) for 30 - 45 minutes a week. As a result of this exercise and sporadic sensible eating I now weigh 18.5 stones. Still way too much - but a significant drop from my heaviest! I do get a lot of joint pain during and after the exercise, but as I 'only' have OA I don't think I am making the damage worse. And I am extremely strong and flexible with good endurance. I have been to see physios who all recommend exercising within limits, sitting down and resting when it hurts, etc etc. If I listened to their advice I'd not be very active, so I choose to ignore it. My GP has also cautioned me to slow down - but can't provide me with any real evidence base for this, so I don't! My experiences with the GP aren't positive. He is a rheumatologist specialist and just wants to probe until he gets answers. So I avoid him like the plague. I do work closely with him on a professional level, but never get trapped into talking about me!!! LIFESTYLE My OA does impact my lifestyle. I find driving difficult. I don't like sitting down and I avoid housework and gardening! (I don't like housework or gardening so it is a good excuse). I prefer to spend my leisure time exercising / reading / studying. DIET I have not noticed that changing my diet affects my arthritis in any way whatsoever. It does have a significant impact on my exercise tolerance. When I eat sensibly my performance is much better than when I stuff myself with processed rubbish. So I try to live on unprocessed foods as much as possible. High fibre, low fat, 7-10 portions of fruit and veg a day, oily fish 2 to 3 times a week, plenty of (reduced fat) dairy produce etc. PROGNOSIS I have been advised by my GP that I will need knee and hip replacements at some stage. I am determined not to have them. I had orthopaedic surgery on my spine and although it saved my bladder and bowel function I do not want to repeat the experience at any costs!!! So for now I am refusing referrals to the orthopaedic surgeon. My GP also wants to fiddle about and look in more detail at my spine. But really what is the point? They can't actually DO anything. So again I am refusing to go for scans, X-rays, assessments, etc. I can't see that I will be able to work till normal retirement age. But can't afford not to. So we will have to wait and see what happens. Who knows I might die of something before then anyway!

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Gill Atkinson | 30/06/2007 08:25:00

I have OA but have it under control with diet, I do not eat:- Tomatoes, Potatoes,Oranges,Plums,Peppers & Rhubarb. There is a book about 501 Natural Cures but i got my diet from a dietician friend who was testing it out, it was not easy at first but you soon get used to it and not all the items affect everybody. i ommited them all from my diet for 18 months and then tried them all 1 at a time to see if there was any reaction. Now I can have the odd Potatoe, the occasional pepper but the others give me an almost immediate reaction.I was taking Codydromal and Diclofenic which caused a Hiatus Hernia so I was pleased with the diet because I take nothing now, not since my hip replacement in 1996. I am healthy and eat a very healthy diet with occsional treat and enjoy life. There is hope out there if you have the determination and will power to give it a go, so good luck.

Susie Main | 30/06/2007 11:08:00

I have "wear & tear" arthritis, according to my doctor. It started a few years ago, when I was in my mid forties, and affects mostly my hands, ankles, knees and hips, particularly the right hip. My doctor told me that supplements such as Glucosamine, chondroitin and MSM, together with Omega 3-6-9 oils are the best things to take for it, and I do think they help. I'm nowhere near as badly affected as many of the other people responding to this survey, but it does have a fairly major impact on my life, as I used to do animal rescue work, and still have a large family of those animals who'll be with me for life .. 15 dogs, 33 cats, 6 sheep, 12 equines, 2 pigs and numerous birds of various types (mustn't forget the mouse, though I think even with worse mobility problems I might just cope with him!) Looking after them involves a lot of physical exertion, and I worry about how long I'm going to be able to cope with really heavy tasks like mucking out ... already my husband has to empty the barrows for me, which means I have to adjust my days not only to weather vagaries but to those times when he'll be home from work. Exercising the dogs has taken a new development in compensation for the pain & stiffness if I walk too far: instead now we tend to play with a throw & chase toy much more than before .. fun but I miss the variety of going out on walks. Riding is also very much restricted ... I wouldn't begin to think of riding any horse which wasn't bombproof, because I can no longer cope with the added pain if I come off and am badly jolted.

Joan | 30/06/2007 11:33:00

I have been fortunate up to a point as although have vague aches; and pains during my life I was never diagnosed as have arthritis. However in recent years I have had a number of falls some of which required treatment of fractures (both hips fractured and humerus recently fractured in four places) leaving me with residual arthritis, particularly in the right knee. No treatment has been offered so I have succumbed to pain killers. I am 81 years of age, eat well and try to keep active.

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Michael Pattinson | 30/06/2007 18:42:00

I suffer from various forms of arthritus, osteo & rheumatoid & spondylitus, the problems gradually crept on me, I became vividly aware of the problems about 16 years ago when i was 50 years of age. I was referred to a nurse at Sandwell Hospital, whom explained i had arthritus of the spine, and gave me a leaflet describing various excises. I was prescribed various Ibuprofem,and a number of other tablets at times, I was told nothing could be done, when all i wanted to know what should i take and do to try and delay the condition worsening. I was advised at one time to cut all red meats out, eat more fruit and vegs, and to exercise more.It is rare now when i report the condition, though i did so 2 months ago, i was told to expect it at my age, and frankly in my area there seems to be little assistance for arthritus sufferer's of my age group, or surely my doctor would inform me differently? I would like to see more advertised help advise for arthritus suffer's, and advise sheets or booklets offering advise, etc. I'm lucky that I'm not yet crippled by arthritus, though the conditions are definately worsening, in my fingers, neck and shoulders, and knee's and feet. I walk daily with our dog, and use Thermal Care pain releiving heatwraps, and have started to take Glucosamine Sulphite after browsing heath shops sites.I gave up persuing assistance from my G/P long ago, except the once 2 months ago. I used to knock finger and thumb on the toilet cystern to straighten them when they locked, it worked, though the last year the pain is continuous.

Gary Thomas | 30/06/2007 22:17:00

I am 53 and have always been sporty ie Football, Rugby,Golf,Badminton and squash. I also spent some time at sea with the Royal Navy. With all of the injuries I have sustained I now am feeling the effects of Arthritis. I am an above knee amputee and have had a fair share of falls,my current one breaking my left wrist. My right knee really is sore along with both wrists. I certainly don't look forward to the damp and cold weather but I chose not to continually take pain killers

Alison | 01/07/2007 10:51:00

I have RA. It was diagnosed 5 years ago. I also have heart failure which was brought on by the anti TNF drug I was on. I was diagnosed with osteoporosis recently. My Mum has it too. Life changes-- humongous. I lost my job and now depend on my husband to look after me. Some days I can barely walk or the pain in my joints is so bad I don't know what to do with myself. Because of the heart failure I can't take any RA drugs so depend on Prednisolone and a farily strict Diet routine. I have found Rosehip tablets have eased the pain in my feet.

Ann | 01/07/2007 23:40:00

I was diagnosed about 20yrs. ago. I have spondilytis in my spine and neck, I also have arthritis in my hands. I used to take anti-inflammatories but cannot take them now so have to rely on pain killers. I take meptid tablets for the constant dull ache in my spine, this at time makes walking very difficult and then I tend to swing one of my legs when walking. Sometimes I cannot grip things with my fingers and the knuckles are swelling up. I take Cod Liver Oil Capsule and extra pain killers and have my life style to suit. My mother had arthritis which resulted in her having two replacements hips which she had for 15 yrs. and was marvellous after. I also have a sister with arthritis in her knees, also one of my sons has the same. I have had other illnesses besides the arthritis, I have just learnt to adapt to the pain in my joints and carry on living.

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Wendy | 02/07/2007 00:33:00

I was finally diagnosed with OA about 7 Years ago. I am 49 now. The degeneration started on my neck, then to shoulders (right one repaired somewhat 4 years ago), now all down my spine, which refuses to bend for the lower 5 vertibrae, it is in my left foot and just over the last 2 days my left knee has started. I know that I have all the symptoms relating to Ankolising Spondilosis, even down to the dry eyes, but the test showed me 97% certain not to have this form of arthritis. My mother had arthritis in her spine, my father had it in his hips, both my daughters have knee problems. I can't take NSAIDS as they cause gastric bleeds and severe gastric pain, so I rely on bloody-mindedness and Tramadol when it gets to a point where I can't go on. I lost my job and am unable to work due to chronic depression and chronic pain. All that keeps me going and gives me joy is my wonderful family.

Jayne | 02/07/2007 14:44:00

I was diagnosed with osteoarthritis in my hands and wrists 3 years ago when I was 44.

My maternal grandmother had rheumatoid arthritis. I have degenerative disc disease of the spine and spondylitis.

In the past I have taken Vioxx until the scare and diclofenac which caused stomach problems which I now have lanzoprozole for. I take gabapentin, tramadol and tylex now for pain relief.

My lifestyle has changed in that I cannot walk very far, the crutches I have I cannot use because of the pressure on my hands and arms. I have an ergonomic mouse, keyboard, chair and desk to cope with or rather help with the pain and stiffness I have after using the computer for a while. I go to the gym when I feel up to it. I eat plenty of fresh fruit and veg, along with oily fish only occasionally. I like to knit, which I can't do for long.

I would like to see a more effective treatment for arthritis sufferers especially those of us young enough to still want to enjoy our lives, children in particular.


Hilary | 02/07/2007 14:54:00

I was diagnosed with osteoarthritis several years ago and told I was too young for hip replacements, given codydramol to help with the pain. I take glucosamine daily to help as well. Looking back it started in my hands when I was a teenager, my feet when I had my children in my late twenties, my hips started in my early thirties and got to the stage where I couldn't even turn over in bed for the pain.I have found that I am much better in warmer climates and so my husband and I are going to take our retirement in Cyprus where hopefully I will be able to delay the need for replacement hips for some time to come

tina adamson | 02/07/2007 15:03:00

I have osteo-arthritis, mainly in my knees, but also in my fingers, left foot and the base of my spine. There is a history of rheumatoid-arthritis in my family, but I am thankfully free of that. I've had aches in my knees for many years, as do my children, all in their 30s. By the age of 46 the pain was severe and I neede a left knee replacement. They would not do this until I was 50. I am now 59 and there is definitely something NOT RIGHT with the replacement knee joint. I saw the GP who sent me for an x-ray, which shows 'sever osteo-arthritis'. I have a hospital appointment in 7 weeks time.

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John A | 02/07/2007 15:04:00

Have had problems with knees, a hip, as a result of a sporting youth for some years - Ive recenly had my hip operation and as yet have had no pain whoopee

Ruth | 02/07/2007 15:20:00

In 1985 I began to have trouble with certain movements and with pain in my right knee. I think that this all started in 1943 when I slipped the cartilage playing netball. I found it impossible to sleep on either side and the only way that I could get comfortable was to sleep on my back with a cushion under my knee,. this, of course, gave me backache too!!

I took Selium and Omega 3 fish oil, generally salmon oil, for many years. I tried acupuncture, which helped my back but my knee not at all. I walked with a stick for only part of the time and could not get into nor out of a bath, I have only showered for years. About 1999 I finally had the joint Xrayed and went onto a hospital waiting list. Some four and a half years ago I had a knee replacment. I should say that every since 1985 I have swum twice a week and the effect on my thigh muscles was such that physically I recovered very quickly from the operation and was driving in six weeks. All in all it took me 12 months to get back to my old self.

Now my left knee is troubling me and with all the publicity about MRSA and other hospital infections I have not asked for an Xray and I am hoping that it will last me out. I will not take anti-inflammatories as they aare only palliative not curative and I would end up with a stomach ulcer as well.

I also have trouble with my right ankle and five years ago had two frozen shoulders at the same time. It is a great pity that any treatments seem to have side effects, so I stick to alternative medicine as far as possible, and good old paracetamol.

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Jackie | 02/07/2007 15:36:00

I developed OA over the last 20 years, since I was 45. It is not in the family. Meanwhile I was found to have high blood pressure, and compromised kidney function. The doctors busy themselves saving my life from these life threatening problems, and sort of decide to play down the affects of OA. My feet are the worst affected and my mobility is getting worse. Some toes are rigid and my balance has been affected. The pain is constant, sometimes like a low level toothache and sometimes almost unbearable. But it is always 'on' in the background. My knees occasionally let me down and going downhill is difficult and painful. Shoulders, elbows. wrists and hands are periodically painful and I have spondylitis in my back.

I was always very active but because I no longer go for walks I have gained a huge amount of weight, which compounds the problem with my joints. I cannot do housework and cannot always stand (up) to cook a meal. I can no longer garden. I eat very healthily and I have tried all the suggestions about cutting out tomatoes etc, taking cider vinegar and they didn't work for me. Now I take Glucosamine & Chondroitin, Omega 3 & 6,Vit C, Selenium, Collagen, Chromium and CoQ10. I have resisted taking pain-killers because of the side effects, but lately I have started taking Co-codamol at night, and it seems to have made a difference otherwise it takes me an hour to 'come round' every morning. Reading other entries makes me realise how badly some people are suffering. I seem to be split in two... part of me is becoming more and more disabled and yet somehow despite this I would say I am surprisingly fit. When I am having a flare-up I am unaware that this is what it is, as it goes on for a long time and just becomes life. It brings with it a depression as well. Then suddenly it eases up and after a couple of days I realise I am feeling less pain than usual and am no longer having to crawl upstairs. And my mood has completely altered and I am holding my head up properly. There appears to be no rhyme or reason to it, the weather seems to be immaterial. I just wish it was possible to obtain holistic medical treatment on the NHS. I am very tired of being mended in bits, like a piece of patchwork.

Michael Stanbury | 02/07/2007 16:58:00

Hi my name is Mike and I suffer From Rheumatoid Arthritis that was diagnosed 15 years ago which should of been sooner, but i was not given a blood test only Votorol tablets,then a nurse at Doctors suggested i had one after that i was put in hospital for few weeks on a drip which helped and i was given solphersulferene tablets and leflutamide, this was all fine for about eleven year till i got pancreititus.(I do not drink)so i think this was caused by the tablets, also i had to have my Gaul bladder removed. Then I found that i have got Bakers Cysts at the back of both knees which is common with people RA, they can only drain these except for sever casses.Because of my stomach they have put me on a drug called Enbrel which I inject twice a week and i swear it has made me a lot better. I hope that this has given people will the same or similar problems to me, an in-site. I would also like more support from the government for people who cannot work because of this illness(you are fit one minute and ill the next)to get extra help. MY Mother had RA as well from early 50s so is it hereditary!.

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Nameless face | 02/07/2007 18:37:00

I was infomed last year that I do not have arthritis. I was told that I have an illness called Fibromyalgia and that I had been misdiagoned. All my medications had to be changed and I can look forward to growing syeadly worse ass there is no treatment and no know cure at this stage. Heck no one even knows what causes it! but it affects everysingle part of my body except my bones.

Marilyn Cooke | 02/07/2007 19:24:00

I had a hysterectomy in 1991 when I was 33yrs old.A few weeks later I was having problems with most of my joints and was in a lot of pain,it took quite a while before I was diagnosed with osteoarthritis.I seen quite a few different doctors but no one thought it was linked to my hysterectomy.I knew it had to be as I didn`t have joint problems before,eventually I was prescribed HRT,within a week of taking this I was moving around again and was feeling so much better.I still had problems with some of my joints mainly my hands and feet,also my knees(I had cartlidge removed from my right knee in my early twenties).Over the years it has got gradually worse and have been on medication and have had a few steroid injections in my right elbow which have worked short term but doesn`t last for long.I had one of the sesamoid bones in my right foot removed earlier this year as I couldn`t walk 50yds without getting serious pain.I now have more problems with my foot following that operation.I take meloxicam,co-codamol,premarin on a daily basis now and have a lot of problems with cold and damp weather,I dont really feel co-codamol works that well in treating the pain and my doctor is not much help so just take what I am given.My mother has osteoarthritis but it didn`t affect her until she went through the menapause so she was in her fifties when it started bothering her.I am not overweight so my weight doesn`t affect any of my joints and I dont have any special diet.This is the first time I have been involved in any kind of survey to do with arthritis and have found reading other peoples experiences interesting.

Elizabeth Griffith | 02/07/2007 22:39:00

I was diagnosed with osteoarthritis about five years ago. It has had a profound effect on me in that I am not as mobile as I would like to be. although I am by no means bedridden. I do get out and can walk unaided, but it is sometimes painful and very tiring. I have two young sons(17 and 14) and would like to do more with them, like running around with them playing football when we are on holiday and I do try, but it is often to no avail if I am in a lot of pain. Even when I am not in pain, I end up with pain the next day if I overdo it. This saddens me and I often do not try to do things because I dread the pain. I bought a contraption called a 'PainGone@ pen, which when clicked on the point of pain emits tiny electric impulses, sending a message to the brain, which in turn sends out endorphins to the point of pain and this works very well. The blurb with the pain pen claims that if used often enough, it gets rid of the pain completely after about three weeks, and I must admit it has worked wonders on my knees. I have very little pain there now. I use it on my neck where I have spondylosis and it is very good there too. I would reccomend it to anyone who does not like taking pills, as it is all natural and lessens the risk of stomach ulcers often associated with pills like Ibuprofen. I hope in the future it will do as promised and get rid of all my pain.

brian | 02/07/2007 23:00:00

I have not been diagnosed as arthritic.

It is my opinion as the a number of joints are disfigured that I do have. The joint normally swells and I encounter some discomfort. It is mostly when someone like a child grabs my hands I feel it most. I am experiencing a problem with my knees and the bottom of my foot this was treated with an inflamitry drug . but have not gone back to doctor as it only eased the pain I am 6 9 .

I take one JOINTEASE a day and this seems to help .Isuffer more when Ifirst get up or after sitting a while.

My mother who recently died at 88 suffered with more severe pains towards the later years.

My Aunt who is 74 recently had knee operation for a new cap. both my mother and aunt have other problems

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Phil | 02/07/2007 23:36:00

Hi This is Phil

I am now 46 I was diagnosed with Ankylosing Spondylitis when I was 18 it has had a big impact on my life and employment has been very difficult. Many people do not understand the condition which causes stiffness and severe pain especially in the morning getting better later in the day. Often this is seen as lazyness. Many Drs do not understand the condition fully and the pain it can bring. Getting benefits to help with the consequences of the illness is difficult and requires perseverance to get medical evidence from Drs who know about how the illness affects you. This i think is because of the rareity of the illness. I have had various treatments mostly drug therapy I have tried voltarol Keflex and salazopyrin. The Salazopyrin worked for a while but had to be stopped due to side effects the drug can cause liver and blood problems. The AS has been severe and I have had to use a wheelchair to help get around. I have been using froben recently and this has been quite successfull I am a singer and I have been to performing arts classes where I was encouraged to stretch and try some movement. Movement seems to be the key to this illness. Although I am still quite ill morning time I can now get about better although still stiff can be slow and there is a noticeable distortion of my spine and posture. I also have some complications affecting the stomach and bowel apparently this goes with the AS and I have to take regular rest. When i have severe pain I use Tramadol which works but can make feel a bit doped if used too often.

I am a little overweight due to long periods of disability and being less active and this is taking some work to overcome. I realise being the correct weight for height will help with pains.

I am not as mobile as others my age find stairs difficult and tiring.

Also cannot fit comfortably in many cars due to pain stiffness in spine and also bending is an issue so getting in and out is difficult so have to look for a higher or bigger car. We got a better car with cruise control and I find that this helps with pains in my leg and I can drive better now.

I cannot pick items myself at the supermarket due to bending issues so need a helper when I shop.

I am isolated at times as cannot take part in many activities guys do.

I find the bath difficult as I cannot lift myself up and out I now have a bath lift but this is a larger NHS model which means there is only room to sit in bath so cannot lie back and relax. So mostly use shower with seat and rails.

Due to medications and stomach problems and the fact that I seem also to be intolerant to Lactose we are constantly working at healthy diet I eat stir frys rice etc a lot. I do find that fish oils and fish products are good and help in a feeling of well being.

I used to live in very poor damp conditions due to the difficulties of getting work and adequate income to afford decent housing. The illness was much worse then and led a cycle of illness depression and worsening circumstances. Thankfully a few years ago a professional person kindly rented us a very decent house at reduced price so we could afford it and things are looking up now.

I have tried various herbal stuff such as glucosomine etc but usually do not persevere with these due to costs as they are not on NHS.

I dont know what Arthroplasty is.

I think that there should be a lot more support for young people with Arthritis as it is seen as an old persons illness. AS should be more recognised as the serious illness it is and young people should be given the help they need without so much of an uphill fight.

Thanks for this opportunity

Phil

Robert Bain | 03/07/2007 01:39:00

Hi, my names Robert and I'm sero-positive Rheumatoid Arthritis. It was diagnosed in January 2000 and I was aged 35 at the time. In the beginning I suffered from very sore hands, wrists, feet, ankles and shoulders then it affected my elbows and neck whilst trying to do my job as a fisherman.The funny thing was it mostly affected my right side of my body. I eventually came ashore to see the doctor who prescribed various pills over a three month period all of which had no effect, I then saw a locum doctor who sent me to the Rheumatology department for investigation and the rest now is history. I have also had steroid injections into my elbows, ankles,knees and shoulders which in the beginning gave me some form of relief for a few months but in the end I'd only get a few days relief.I also have had both knees aspirated of fluid and injected but now they don't trouble me at all (the only two joints that don't bother me)In the last couple of years its affected my right hip as well.The biggest regret is that the doctors made the decision for me to give up my job which I loved but with hindsight it was the right decision as I have a very aggresive form of RA. To my knowledge nobody else in my family has ever had RA, I'm just the unlucky one. Yes I suffer from other medical conditions which are IGA Nephropathy (kidney disease) attributed to RA and I also suffer from Vertigo (not a fear of heights) but due to the blood vessels in my neck being pinched due to the arthritis and this causes me to be light headed and dizzy. I have been on various different therapies from sulphasalazine to methotrexate, I've also tried all the anti-tnf's i.e. humira, enbrel and infliximab all to no avail and currently my medications are: - Rituximab infusions(research drug for RA), Dihydrocodeine (painkiller, 8 times a day at 3 hourly intervals, even through the night) & paracetamol(painkiller maximum 8 per day ),nabumetone(anti-inflammatory),leflunomide(RA drug), senna tabs & Docusate(stimulant laxative),Stemetil(dizziness) and Orlistat(weight control).I also have my bloods checked every 14 days along with my blood pressure.The last 3 years has seen me regularily stay in hospital (almost every 3 months I'm admitted) with some stays lasting 5 weeks at a time.Currently I'm voluntarily on a low fat diet to try and keep my weight under control as my mobility is very poor and exercise is almost non existent due to pain.Currently I use a crutch to go very short distances i.e. from car into house 10 yards or so and vice versa due to the excruciating pain, I also use a wheelchair when the need arises and I have to use a pulpit frame to mobilise around the house, however I only get access to the living room, toilet and bedroom all other rooms are out of bounds as my pulpit frame can't enter them as its too big. I also have a carer who helps me with my washing and dressing as my wife has to work to keep the house and family afloat.My wife does it on the days the carer dosen't come in.I've had to give up driving which was very hard and have become abit housebound now. Arthroplasty, well so far I have had my right elbow replaced with a stainless steel joint which has been a great success, however I did suffer some nerve damage (pins & needles and numbness down my arm to my fingers)during the operation but its a minor thing to live with and the joint is pain free.I stayed in hospital for 2 weeks to undergo intense physiotherapy and rehab.I'm now not allowed to put any weight at all on the replaced joint which makes things pretty difficult with regards to my mobility.I'm currently awaiting surgery to replace my left elbow and also to have a triple arthrodesis of my right ankle.There is a wealth of information available on the internet, some very good and some not so good and at the rheumatology clinic (50 miles from my town)newsgroups and forums are also great ways of gaining information, however there isn't any help groups available in my area to provide fellow sufferers with support and advice. I think that there has to be more support for younger people as its practically non-existent. I used to think that arthritis was an old persons disease but now know that it can happen to anyone and at any age.I also don't like the stigma that gets attached to disabled people, especially when your in a wheelchair. More support should also be made to the carers, family carers etc who have to help look after us, something which the UK government fails to provide.The biggest help that this country could provide is to ban postcode prescribing which sees people in certain areas banned from getting the drugs that could help them, I'm just thankful that my rheumatologist prescribes what he sees fit in order to help me regardless of the cost.

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Vickie | 03/07/2007 03:26:00

I was 44 when I was diagnosedin 2003 with osteoarthritis in my knees. I worked close to my house at the time and could wsalk there with just my white cane. At the berginninning of arthritis, I wondered whether I was just lazy and didn't want to walk. I had a job answering the phone at the front desk of a residental philility for the blind and multihandicapped. This went on for a while. Then when it was time to see my primary doctor, i went and saw a nurse practitioner. That's when I fond I had OA. She said glucosamine/chointon when I asked what could be done so that I would keep some of my mobility. I take that relidgeously and when needed ibuprofin. I also use a heated beanbag. Thoe things help me, but that doesn't mean I wouldn't like to see a cure.

J O Agbalaya | 03/07/2007 04:56:00

Thank God I have not been diagonised as having OA or any arthritis. However I do take Seven Seas joint care rojoint formula to relieve the minor pains i ocassionally suffer in my knees. I hope this will help to check any development of arthritis.

Rachel M | 03/07/2007 08:37:00

I was 19 when I was diagnosed initially with Psoriatic Arthritis but later Rheumatoid Arthritis. I am now 30. There is no history of Arthritis in the family but it must have come from somewhere. I had previously suffered (and occasionaly still do) with mild Psoriasis hence the initial diagnosis. I have been on a variety of drugs over the years including sulphsalazine and lefludomide. I am currently on Embrel injections alongside Methotrexate. I take naprosyn as a pain killer. Initially the arthritis started in my feet and hands. I have had 4 joints replaced in my fingers and a Synovectomy to remove imflammed tissue from my hand. I am now being referred in order to have surgery on my feet due to them becoming more disfigured and causing further problems.

My knees generally cause problems and I have had to have them syringed a number of times to remove fluid. They will require surgery in years to come but fortunately not yet. Other joints effected include my elbows and my arms no longer straigten.

It has affected my life in terms of having children as when I came off my drugs to try and start a family my arthritis went into overdrive. This coupled with a fertility problem ment we have to give up trying fairly quickly to avoid further joint damage.

When my arthritis is particularly bad it affects other aspects of my health. The most recent period resulted in my hair thinning as a result.

My Husband and I have recently moved into a bungalow to avoid having stairs. However, at the moment with the current combination of drugs I seem to be having a good patch. My mobility is the best it has been for a long time and my hair is currently thick and long. I have made changes such as a higher car (easier to get in and out of) and it is also an automatic ( much easier).

Arthritis hasn't affected all of my life and I hold a good full time good and have a good social life. I have to remember not to overdo it when I feel so well or I suffer later. I have good friends and a great husband who all make a big difference through understanding and assistance. We also manage to laugh about it on occassions - the fact I am turning into the bionic woman with my joint replacements!

Unfortunately I still find that information for younger people with arthritis is lacking. It is still geared for older people. Also, in the area I live - Christchurch, there is a huge demand for rheumatology services due to the number of older people and therefore the resources are thin.

Also I think it can be an invisible disease. Nobody can tell just by looking at me that I have arthritis (unless they notice the scars on my fingers). I have a disabled badge and get the dirtiest looks off of people when they see me getting out the car. When my mobility's bad and I have a stick or am limping then they can see why I am using it. But often my walking isn't too bad (although can't walk too far) and also I need the wide space to open my door fully to make it easier to get out. I have been challenged on many occasions as to whether the badge is mine. I actually avoided getting a badge for some time due to being afraid of such reactions and am disappointed that my fears have proved true.

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Anne W | 03/07/2007 11:53:00

I was diagnosed with rheumatoid arthritus when I was in my early thirties. I had problems as early as my 20's.

I also have tendonitus. I have been informed that these are both inflamatory conditions.

I have had long periods without problems and fortunately the only real problem is my neck and I suffer with vertigo which I have not been able to solve.

I have not been able to take medication due to a stomach problem.

The good news is that when I was diagnosed I bought a book about diet and excluded beef from my diet. This had a huge effect and my consultant was astonished at the results.

I now do not eat any dairy or meat and follow a wholefood diet and the results for me have been miraculous. I also take glucosomine and chondrin.

I recommended this to a lady I met recently and she had tried the same diet and has e-mailed me to say thank you for the improvement she had had.

I do not say it will help everyone because I do not know that but it has changed my life. Hope it may be of some help to others.

Angelika | 03/07/2007 13:07:00

I have been diagnosed some 3 years ago with RA and have also had my gall bladder removed about 2 years ago, after a severe inflamation, which meant that I had to go into Hospital very quickly, due to the very strong pain that I experienced.

When I was first diagnosed, I spoke with my sister, who is a homeopath and she told me to instantly change my diet. I followed her advise, read loads of dietary books and have been eating fresh fruit, tomatoes and avocados, as well as loads of berries and fresh nuts ever since. I drink only fruit juice (fresh) and no alcohol, no fizzies and very little coffee or tea, due to the caffein that they contain. I never eat anything with white flour in it, only whole grain bread and no dairy foods, except the occasional low fat yoghurt without sugar. I take no sugar, just a good sweetner (the type without Aspartame) and take cod liver oil, glucosomine, omega oils, vitamin C, D and E plus a multivitamin and red clover tablets from the health food stores. I also take the Methotrexate (3 per week) and on Folic Acid as prescribed by my specialist.

I also try and swim at least once a week (about 1 mile at a time) and run about doing my usual work in the office and at home. I am divorced with two grown sons still living with me (not doing much to help) and a cat and two rats (tame). I don't think about my RA and mostly I don't feel much at all... my joints in my fingers and my shoulder do hurt occasionally, but since changing my diet, I don't have any more inflamation of the wrists or in my feet or knees. I am practically as good as before and am now 59 years old. I really advise you all to check your diet!! It is what you eat that creates a lot of the problems...and..most of my food is organic.

I will keep you posted as to how I will progress with this...

Eileen Kynes | 03/07/2007 13:42:00

On reading other people's stories, I feel very lucky. I have been diagnosed with OA in both my wrists and thumbs but despite the constant pain, it does not disrupt my life too much. I am unable to take anti inflammatoies and rely on strong painkillers. I have been offered a wrist fusion but am very reluctant.

Specialists kept asking me if I suffered from psoriasis. Apparently, it is linked to arthritis in only one part of your body. I always said "No" but now psoriasis is starting to emerging all over my body. It's not too bad at the moment but I dread the thought of it getting worse.

My mom has really bad arthritis I am unsure of what sort) and is confined to a wheelchair. Her feet and knees are badly deformed and swollen. She can't lift her arms and has no quality of life.

George Davidge | 03/07/2007 14:05:00

Hi My name is George I am 62 years young. Cockney,chirpy,saucy & extrovert. I am all of this whilst I have arthritus in every joint apart from lower spine. Imagine how unsufferable I'd be if I was fit. We my wife & I have lived with pain since about 1975 or so. I have just (8 wks ago) had a knee op & it has helped a bit. I moved from London to the countryside of Worcester to help get the muck of London out of my lungs, unknowing that worcester (they say) lays in a valley that encourages damp air which dont help the joints 1 bit. I have had to stop work as I could'nt walk. (9 months ago)I now have it in my neck which causes a weird form of vertigo. In the past we tried going without red meat for about a year. (did'nt appear to help). We tried a non dairy diet. (did'nt appear to help). We tried white vinegar drinks, we tried the french toast, we tried rice instead of potatoes now that helped a bit but was it boring!!. We have tried for about 30 years to find a dietary aid & nothing much has helped, we got lots of books & thought that maybe the next thing to try is "eating the blooming books" who knows?. Our suffering is caused apparently by wear & tear . Who said a little hard work wont hurt you. All the diets have cost a fortune, & dont help much. My dear old dad never lived half as well as we do & never had a twinge in his life, (The muck of London got his lungs tho. I take the Glucosomine & cod liver oil etc & that seems to maintain it at a reasonable level. You can see from my attitude I hope that we dont let it get us down too much. we find that laughter really is the best medicine. If your enjoying what you can, you will get by.

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Jeff V | 03/07/2007 14:32:00

Hi, I was 32 when I was told I had "early changes" in my shoulders and hips, later told it is rheumatoid. At 35 I was diagnosed with osteo in both knees. Historically there is both forms on both sides of my family.

I also have Raynauds, Carpal Tunnel, myalgia, polyarthyalgia unkown origin (PUO),arthralgia, plantar fasciitis, ulna neuropathy and the doctors think I have a variant of (FMF) Familial Mediterraean Fever.

The effect on my life has been considerable. I was on the fast track to becoming a senior manger in a multi-national wholesale company but have been unable to work since Nov 2000. The nature of the work is heavy manual mixed with usual managerial responisbilities and I get fatigued too quickly to be useful to anyone. I find noise/vibration to be very uncomfortable and my body tends to "sing" to the tone of a car engine or a musical beat which is painful and iritating.

I tend to drive as little as possible, I find walking difficult, the first 50 steps or so are OK then each step becomes progressively more painful. Any physical activity wears me out incredibly quickly and takes me ages to recover from. I find sitting in one position for too long painful.

I have seen rheumatologists, gastroenterologists (ulcer caused by medication), dermatologists (rashes on legs), reflexologists, podiatrists, chiropodists, faith healers, reki healers, dieticians and physiotherpaists. None have really healped I take large doses of anti inflammatories plus pain killers plus sleeping tablets and a drug that reduce the recurrent fevers. On top of this I use neurofen gel and take cod liver oil.

The only thing that makes any difference is the weather, warm and dry is wonderful, cold and damp is hell.

Tony | 03/07/2007 16:46:00

I have osteoarthritis, mildly. I am 73 and it is much better now than it was years ago. I take glucosamine, chondroitin, collagen etc. It is very rare that I resort to pain killers. When I do I take 1 paracetymol and 1 ibuprofen together as that combination does not upset my stomach so much as ibuprofen alone. I also have a bio-lamp but have not used that for a year. I still take part in dog agility with 4 dogs and drive all over the British Isles to get to shows and training.

Queen A'mina | 03/07/2007 19:21:00

My experience with arthritis comes from the clients that enter my office with complaints of pain and stiffness. After a 3 part session of colon hydrotherpy, they most often report a relief of the tension in the joints. It is amazing water a little detox can do. For anyone with arthritis, I always suggest a whole body cleanse starting with a fast and a 3 part colonic irrigation session and a gradual change in diet.

Queen A'mina

Certified Colon Hydrotherapist

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Janet | 03/07/2007 20:29:00

I have osteoarthritis in my spine, hips, right knee, left jaw and both feet. My spine is twisted and my right hip is painful when I turn on my right side in bed. The OA was first diagnosed about four or five years ago but no treatment was offered other than painkillers. I take Glucosamine Sulphate and calcium for my bones but no special diet. My back can trap nerves and cause pain in all parts of my body, legs, feet, neck, shoulders, but this is usually temporary and responds to paracetamol. Last year I had a prolapsed womb so had a hysterectomy. Now I have a prolapsed bowel and take laxatives daily, Movicol, to keep the bowel as light as possible. I think this causes quite a lot of pain in my lower spine. I am coping with menopause, hot flushes, insomnia, forgetfulness and mood swings. I have varicose veins too. Neither of my parents have OA but my mother has a twisted spine, as do two of her sisters. None of them receive any treatment for this condition. I would like to have some physiotherapy and advice on exercises etc. I do not work but look after my parents and elderly aunt. My Dad has cancer, bowel and liver but is coping well with treatment. Mum has a heart condition and low platelets (blood). My aunt has diabetes, gloucoma, gout, high blood pressure. I am able to take them to their hospital visits, do some housework and shopping trips. I am 58 years old and have two sons, 27 and 37 years of age, no grandchildren yet. I live with my husband and we've been married 38 years.

Tom Baxter | 04/07/2007 10:11:00

I have never taken part in a " blog " before, but with Arthritis so common now, anyone that is a sufferer should be voicing their fears and lifestyle hold ups that can come from the constant pain. I have arthitis in my spine, ( base and neck ) it seems that the pain is worse when i'm in bed as i can't find a suitable sleeping position. Even the smallest of tasks can be painfull and some days when I feel good, I will potter about the garden, but then the pains come back. I take prescribed medication and when I do nothing, they seem to keep the worst of the pain at bay,but it is so easy to upset that ballance by the slghtest activity.

Diane Lowe | 04/07/2007 10:51:00

I was diagnosed with osteoarthritis in my knees and ankles as well as spondylitis in my neck in 1999 when I was 39, although I had been complaining to my GP about my right knee since I was aged 18.(He told me to get a dog and do some walking and also to go everywhere my bike). I now know this has worn my knee joints even more. I also suffer from high blood pressure and dyspepsia which means my doctor does not prescribe any tablets that are likely to upset my stomach, I therefore only take co-codamol when I get a lot of pain. I also take Zantac for my stomach problems. My mother has alzheimers but she also has suffered from arthritis since the age of 12. She has had a hip replacement and her knee is deformed but because of her mental state my sister and I along with her GP have agreed not to have this operation performed on her. My father died 9 years ago from stomach cancer, he also suffered from dyspepsia. Two of my children both have pain in thier knee joints. I drive a motability car and without it I would be housebound as I cannot walk any distance without considerable pain. If I go shopping I use an electric wheelchair supplied now in a few stores, but I am limited to those stores only. I have to restrict myself because I still find it frustrating when I can't do the things I used to do eg decorating, going for long walks. I tried taking Glucosamine Sulphate as I have heard it can be helpful but it just made me sick so now I take Cod Liver Oil tablets and I have noticed a slight improvement. I also take Evening Primrose Oil which helps control my mood swings and hot flushes as I am starting the menopause. As I am only 47 I cannot even begin to think what the pain is going to be like in another 10 years. One thing that really annoys me is living on benefits but still having to pay for my prescriptions!

postmanpat | 04/07/2007 10:53:00

I have had arthritis for the past eight years. I am now 72 years of age and while my spirit is still as young as ever my joint especially the right hip and knee are not what they used to be. However I still do not do so badly. I used to get quite a bit of pain but since taking Glucosamine, Chrondrotin and msm and also Celedrin tablets I have seen a marked improvment in the flexibility of my knee particularly and get little or no pain now. I also use Glucosamine and Emu Oil Gel morning and night externally. If i do a lot of walking or gardening i do find a tuba- grip bandage round my knee very helpful


Jan | 04/07/2007 12:56:00

I have been diagnosed with 'arthritis' in joints my spine, elbows shoulders, knees and thumbs and gout in my right big toe. I have my painfree days thanks to the medication I have been prescribed but flare ups, when they happen, are excrciating and debilitating. People tend to be skeptic when you tell them of the pain you are suffering. It isn't like measles, chickenpox etc. There are no outward visible signs of the acute pain. It is only when deformity of the fingers and toes ttake place in the later stages of rheumatoid arthritis that one is believed by the general public. Even then they have little or no concept of the level of pain suffered. There is a history of both rheumatoid and osteoarthritis in my family.

Alicia56 | 04/07/2007 13:22:00

I was diagnosed with osteoarthritis in 2003. Having had to take time off from work with a bad back. My father suffered with arthritis although had no treatment for it, his hands were just all knotty and he suffered with bad backs for many years. My doctor just said that noway would I be offered a hip replacement as I am too young. He gave me painkillers which were subsequently found to cause heart problems, and told me to exercise alot. I find that walking...even to the shops causes me lots of pain and I have been in tears at times when I get back home. Everyone seems to think that because i am overweight the4n I should grin and bear this pain and exercise more. If I stay home and just 'potter' about I feel a fraud as I am not in alot of pain, but if I do go out I make sure i take all my painkillers and paracetamol and ibruprofen. I hate taking tablets so try to manage without them, at least then when I do need them they seem to work better. I recently got a car and where people said this would be worse for me then I find it much better as I am getting more exercise as I can do things in short bursts. I recently had a visitor to my home and we did alot of walking as I then didnt have a car, and I took my painkilers for the week.... it took me a month to get back to the level of pain that i normally incur. I am therefore loathe to walk too far too often. I am at the moment looking for a job I can do from home because I am finding it extremely difficult to manage on Incapacity benefit. I did try for mobility but as I am a very independant person and prefer to struggle to do things myself I didnt get anywhere. I have also now got little lumps forming on my hands and fingers around the knuckles, and on my feet. My left elbow is rather painful and my left hip is also beginning to get painful at times. However I do not let this stop me doing things I really want to do, I will just suffer the pain afterwards. At the time I was diagnosed with the arthritis I was also diagnosed with diabetes, everything seemed to come at once.

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ELIZA JANE BROWN | 04/07/2007 14:39:00

i was diagnosed with osteo arthritis in my mid thirties ,it affects my back,hips,knees,neck,wrists and hands.the pain is really severe but i have yet to find a pain relief that actually does help,my father also suffered greatly with this and was almost a cripple before he sadly died. I WOULD BE GRATEFUL OF ANY SUGGESTIONS THAT WOULD HELP.

Val | 04/07/2007 15:48:00

Hi,

I have suffered with Osteo-Arthritis for almost 15 years now, and there are days when I can hardly walk through the pain.Unfortunately because I also suffer from Asthma, I am limited to what I can take for the pain.Paracetamol, regular, then on occasions I have had Co-Codomol, but I emphasise that at that time I am NOT taking Paracetamol, because you cannot mix the 2. However, with teh Co-Codomol, I sometimes get Constipation, so that's another pain t deal with. I just wish someone would invent a drug or homeopathic remedy to ease what has been the bain of my life for 15 years. ...............Val

val | 04/07/2007 16:21:00

have had considerable pain for many years(atleast 15yrs). my gp at the start diagnosedas "I suppose its osteo-arthritis". when i became ill in 1996 with a number of complaints i had a new doctor who referred me to a number of specialists who diagnosed--thyroid problem/asthma/knees that had crumbled and needed to be replaced/hypertension and a possible heart problem.i was put onto vast amounts of medication including steroids which made my weight rocket up in the hope of stopping the asthma (it did not work). because of the other problems i was told i could not have the joint replacements as i would probably not survive anaesthetic. i am in continous pain for which i receive medication(not very successful). i use a wheelchair when going out as i can only walk the distance to the car. i do sometimes get very depressed but most of the time i "grin and bear it"

cindylee | 04/07/2007 16:39:00

I now have severe OA in my low back, and spinal stenosis.

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MRS M ILLIDGE | 04/07/2007 17:26:00

I was diagnosed with osteoporosis in 2006 and take alendronic acid. Do not know if it is of any benefit will have to wait until the next bone density scan I suppose.

I have taken glucosamine for years but dout if it does any good. I

I just hope the condition does not deteriorate too much as I get older but seeing my mother suffering now I don't hold out much hope. Got to keep busy now as may not be able to do much when I am older

 

Sue | 04/07/2007 20:28:00

I was first diagnosed with arthritis in my lower back after I had my first child in 1983. But luckily this hasn't got any worse .... yet. I do get occasional back pain but nothing too serious at the moment .. touch wood!! But after suffering with knee pain in 2000 I WAS diagnosed with osteoarthritis. At first it was okay but then about 2 years ago it began to get very painful and by early last year it was becoming more and more difficult to do certain jobs about the house. It was also affecting my walking and got extremely painful. Last October I had a total knee replacement. I'm 54 and am told i'll probably need another in about 10 years time. But at the moment the knee is pain-free, the only problem is getting down stairs, as it's still a bit stiff. But i'm sure i'm beginning to suffer arthritis in my hands and lower arms. I type all day and am noticing they are starting to get painful ... so i'm gonna have to keep an eye on them I think. As far as I know neither of my parents suffered with arthritis.

fushia | 04/07/2007 20:30:00

when i was 21years of age i was involved in a road accident.it very nearly cost me my life.i am happy to say i live on ,however during my stay in hospital ,due to the op ,replacement of right femour bone ,to mend my leg and traction,i was told that i would in later life get arthritas.well getting older came faster than i anticipated.after having my first child at the age of 26 i started to get back problems ,then after my second child age 31 my back went completly. the base of the spine being damaged ,fused and knitted together.a few years after this my right knee started to swell and i guess it has just got worse from then on. in 2002 i had a total knee replcement and leg extention ,right leg again.i now get very painfull hands and have cervical spondosyse..through lack of being able to get around as i would wish i am putting on wieght,something i really hate.i also have sevear hearing problems,astma and sensative skin.while the medication does help to a degree, self help is the greatest thing you can do for yourself.keep your intreasts going.try nightschool classes and get out of the house.in spite of my poor health i do a course for icing cakes,it is very rewarding and something that can be done sitting or standing.

christopher john chattaway | 04/07/2007 22:59:00

4/7/07 22.32

I have osteoarthritis in my whole body. I was first diagnosed when i was about 40y old, i am now 52.I have been told by my doctor that it probably stemmed from a slipped disc i had in my thirties.I first noticed something wrong when as an avid D.I.Yer and radio-controlled model maker, that i was losing my grip on tools when my fingers would just lock up. I had a blood test done for RA (i thought they tested for everything- apparently not.) which was negative- then another for osteo which came up positive. My back and knees were getting worse so i had a full body x-ray which showed i had it in all my joints. My mum and dad are both passed away and i never see the rest of my family so i cannot say if anyone else has had this problem. I find cold-or hot-weather can affect me quite considerably and early mornings are worse when my joints are very stiff. I do find gentle exercise can be helpful. I am grossly overweight-6 ft tall and 21st 8lb which i know does not help much, but i have tried for 4-5 years to reduce this by going to the gym three times a week- all to no avail. occasionally i get a trapped nerve which can affect me in several ways such as - always wanting the loo, feeling i want to be sick all the time,severe pain (worse than normal) in my back,shoulders or hip, or, as i have at the moment, very bad sciatica in my left leg. my continual medicine has always been ibuprofen and paracetamol with codeine, the latter has now been changed to the much stronger tramadol. my diet has only really changed for my weight problem and does not seem to have made any difference to my arthritis.I have plenty of devices that help me daily such as a walking stick,raised toilet with bars, also for shower, bottle and jar openers, most electrical kitchen gadgets and a steering wheel knob for my car. I avoid stairs at all times where possible, but if need be i go up one step at a time. I hope this has been some help. cheers.

MR.C.J.CHATTAWAY.

Ruth | 05/07/2007 01:56:00

I was diagnosed with Ankylosing Spondilytus 11 years ago although I have had symptoms for much longer than that. As a complication of the rigidity caused in my spine I had a slipped disc which gave me sciatica in both legs. Unfortunately this went undiagnosed for 6 years so although I had surgery both sciatic nerves were badly damaged and I still get pain in them. I was 32 when I was diagnosed and as my father has AS I obviously wondered if it was hereditary which of course it is. I have 5 children only one of which was born after the diagnosis. I often feel guilty about that as I may of passed pain on to my daughter. Two of my 4 sons have the white blood group HLAB27 which means they have a chance of getting AS - I will just have to wait and see.Although I can walk I am very limited on what I can do. I cant walk too far. I cant play games with my daughter that involve anything too strenuous. I have problems with housework.I take anti-deppresants as depression goes hand in hand with this type of arthritis. I also take lithium. Gabapentin to help with the nerve pain in my legs but it causes my feet to swell so i have to take diuretics. I also use a fentynl patch which is synthetic morphine so I am basically a legalised drug addict.

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Susan | 05/07/2007 08:47:00

Hi, I was diagnosed with Rheumatoid Arthritis at age 40 after suffering for many months and feeling like perhaps I was going crazy because the pain seemed to "travel" so was very difficult to explain.

I was fortunate to have very good medical treatment and doctors who, although they did not believe in my ideas, humored me and worked with me, while I continued to do exactly as they recommended, they tried to answer all my questions.

Sadly the medical community often does not believe that Rheumatoid Arthritis can be a result of dietary choses, or that our thoughts might have some effect on our health.

These are the areas that I questioned mostly and in my own experience these areas do make a major differrence.

While I followed the doctors regular type of treatment (medication) my health continued to deteriorate and my limitations became great.

With the definite threat to losing my fingers due to inflamation I dug right into nutritional healing and this turned my health around.

My disappointment is that doctors are not telling people that others do get great benefits from diet and lifestyle changes, I know many people outside of myself who have recovered (they are not cured, we still have RA, but we can live comfortably with the disease)

There is no RA in my family so I was somewhat shocked to get this diagnosis.

For anyone who would like to learn more about how I treat this disease, I share that information at http://www.LivingWithRheumatoidArthritis.com

Hilary Watkinson | 05/07/2007 10:02:00

I developed osteoarthritis in my right hip about 10 years ago when I was 50. I had a strong family history of OA with my mother and her family strongly affected. I had a right hip re-surfacing in 2003 (privately) and have not looked back since. Apart from some minor aches and pains which disappear on mobilising, I am fine and do not take any regular treatment. I tried Glucosamine and Chondroitin with no obvious effect and wear a magnetic bracelet also with no obvious effect.

Helen Wilson | 05/07/2007 10:43:00

I have RA. It was started in 2004 - I can even pinpoint the day! I was aged 48. Neither of my parents have arthrisitis, but my maternal grandmother did. At the moment I am on Enbrel, Methotrexate, folic acid and predisolone. I eat a healthy diet. Mobility is an issue - I can only walk a short distance without pain and am a bit 'wobbly.' I have had to change my lifestyle because of the arthritis - don't cook much because I can't lift pans, peel potatoes, open cans and jars etc. I buy clothes without fiddly buttons and use a laptop for writing. I had an operation on one of my feet to straighten two toes. I have a very gooe rheumatologist and the support I receive from the hospital is excellent

Helen Wilson | 05/07/2007 10:43:00

I have RA. It was started in 2004 - I can even pinpoint the day! I was aged 48. Neither of my parents have arthrisitis, but my maternal grandmother did. At the moment I am on Enbrel, Methotrexate, folic acid and predisolone. I eat a healthy diet. Mobility is an issue - I can only walk a short distance without pain and am a bit 'wobbly.' I have had to change my lifestyle because of the arthritis - don't cook much because I can't lift pans, peel potatoes, open cans and jars etc. I buy clothes without fiddly buttons and use a laptop for writing. I had an operation on one of my feet to straighten two toes. I have a very gooe rheumatologist and the support I receive from the hospital is excellent.

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Carole | 05/07/2007 11:12:00

Hi everyone, just been reading all your comments. I guess I am luckier than many of you as my arthritis doesn't affect my quality of life very much...YET. I was given a positive diagnosis of OA in my right knee earlier this year after many years of discomfort in both my knees and my hips, but have lost over 4 stones in weight over the last four months and it has really helped me a lot. Apart from being in a lot of discomfort when the weather is cold and damp and having a certain amount of stiffness in my joints (I put that down to my age, I'm 62) I manage to cope quite well with the minimum amount of pain relief, but my younger brother and my mother have both had one of their hips replaced.....so I guess that might happen to me eventually, but I'm not thinking about it too much. I still work part-time, mainly on nights and I have quite a physical job and I try very hard not to let the OA interfere with that, and TOUCH WOOD, I've never had to take time off sick because of it.

Gillian | 05/07/2007 11:22:00

Hi I'm Gillian, I'm now 38 but was diagnosed with RA at the age of 23, while in my early second pregnancy. It started in my hands and the dr who diagnosed me was great, he had me refered to a specialist right from the off. Its due to this early diagnosis that I believe I've been so lucky in finding the correct treatment for me. I've been on methatrexate for most of my time as an Ra patient, although they originally tried me on sulphasalazine which didnt work. Had a break from the meth when trying for our 3rd child, who was rather elusive and took 23 months to fall for, due to the effects of the meth, but got there in the end with a little help! I've since been back on the meth, been on a steady 12.5mg weekly until 2 weeks ago when my rheumy put it up to 17.5mg due to ongoing problems with my hips, apparently not the Ra, whoo hoo!, but something inflamatory nonetheless and very painful. Thats actually been the hardest part for me is having my mobility affected. I still feel 19 inside and have a young family, and its very frustrating to be affected by something that dictates that I cant move or get about as I'd like to all the time. Family history wise there is only one uncle, Mum's side, who is badly affected, although we are an auto-immune family, Mum is diabetic and sister has Hashimotos (hypothyroid), Dad is hypoglycemic. I deal with with well, so I'm told! I'm a very positive & happy person. I wont let it get me down very often and refuse to give in! I've always said that 'Ra lives with me, not me with it'.

Rob McClintock | 05/07/2007 11:42:00

I have Post Myalgia Rheumatica, which I am told is not rheumatism but a Viral form of Arthritis, which attacks the muscles where they attach to the joints, not the joint itself. It is also intermittant, and attacks and clears up again with a period of months in between. It is the most excruciating pain I have EVER experienced. The only way to control and/or prevent it is Prednisolone (Steroids). I also suffer from Emphysema and Chronic Bronchitis (I am 71 years old) and in a way this is a good thing because I am prescribed Prednisolone for my chest condition, and am therefore constantly treating the PMR condition. I would prefer to be totally healthy, but at 71 I don't think there is much hope of that.

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Stephen Baker | 05/07/2007 11:51:00

I have Ankylosing Spondylitis, I seem to cope quite well with it.

What I don't like is not knowing what your day is going to be like. I do try and do as much as i can when i have good days.

Mobility is a problem find it hard to walk any distance, thank the lord for motorablity with out them I would not be able to some of the thing's i do.

We must all keep smiling thing's could be worse

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TRACY | 05/07/2007 12:11:00

HI I have rheumotoid arthritis which i found out about two years ago due to right hand swelling and my finger was stuck bent over.I have been on various medication but now on steroids only problems is you put weight on.it affects day to day life especially on bad days as it gets hard trying to get dressed go upstairs to toilet fastening your coat and jeans. sometimes i get very depressed as its annoying when elderly people can walk faster than you.plus its a bad effect from the steroids as your either very happy or very down. only people who understand how it feels is people with ra.i went to a support group only problem was everybody was 60 years and over im only 36 and felt very out of it.there should be support groups for younger people to attend.another bad point is i got banned from the gym as my knees kept swelling up so went to drs to see what i could do about it and she told me to walk. i have a mobility car at the moment but they are going to take it back as i can walk which is what the dr told me to do but dla says i shouldn't be allowed it as my condition has improved since i got it. so please be carefull if on dla as they follow you about.which gives me more stress which causes more inflamation so now i need more medication so i cant win you get told to walk and get into trouble for doing it.

Pat | 05/07/2007 13:14:00

I was diagnosed with osteoarthritis about 4 years ago when I was having trouble with my left knee. I have an operation on the knee where the surgeon shaved it as he said that osteoarthritis in knees is like a piece of cloth frayed and that is what causes the pain. (Also he gave me a disc of my operation!!! not something I look at much). I feel that it is now coming back as the knee keeps swelling up and also I cannot kneel on that knee as it is very very painful to do this. I put some gel on my knee when it is sore but I do feel that unfortunately it needs to be looked at again. My other knee also causes me problems but not as much as the left knee. I try not to take too many painkillers as in the beginning I was afraid that I was becoming addicted to them. If the knee is knocked it causes me to shout out as the pain is like a knife going through my knee. I also get a mild form of gout, which my mother gets quite frequently and I was interested to see that someone was saying that they cut out oranges and tomatoes from their diet which is what my mother was told to do so I think I will try this and see if it helps my knee.

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Wayne Keegan | 05/07/2007 13:50:00

what kind have i got? well i have Arthritis
in my spine which is the result of a car crash i had in 2000. this restricts my movement a lot but the worst way it affects me is that it means i cant play with my children the same as a more able bodied father can. more distressing than any pain i can assure you.

i also suffer from gout in my feet, left thumb and left elbow.

when this flares up in my feet all moving around just grinds to a halt for 4 or 5 days (if im lucky) and no ammount of madication can get rid of the pain. you just have to litereally sit, grin and put up with it.

i can handle the pain its the disruption to family life i find hard to bear.

Chris Titley | 05/07/2007 13:55:00

Arthritis mainly affects my finger joints. I take Glucosamine with chondroitin and high strength Cod Liver Oil to help keep it comfortable. My sister is paraplegic and requires my help to get dressed. One of the main difficulties we experience is pulling up trousers etc as this puts quite a strain on the finger joints. It's a case of don't think about discomfort you've got to do it. Sue (my sister) is a great inspiration as she gets up and goes no matter what and is always so positivedespite the bad days. We live a day at a time and do as much as we can enjoying as much as we can. I am priveleged that apart from the arthritis I enjoy good health and am able to get out walking the dog , visiting relatives and having the grandchildren to stay.

Michele | 05/07/2007 15:44:00

Hi I'm Michele. I suffer from fibromyalgia and was diagonised about 10 years ago. I'm 40 yrs old and have quite an acute condition. Unfortunatly I had to leave work about 4 yrs ago as I was no longer able to do my job. My husband has had to give his job up about 2 yrs ago to become my full-time carer as I can no longer dress myself or do much around the house. With 4 teenagers in the home it makes things hard for them as I'm not able to do the things for them that there mates take for granted. I am on butrans patches 20mg, gabapentin 1800mg a day, ibubrofen 1200mg a day, tamazepan 10mg a day and citalopram 10mg a day. As you can see I'm on a lot of medication but at times I still need to be hospitalised to receive more pain killing injections. I also use a tens machine which has been really great. I've had physio, hydrotherapy, accupuncture, you name it I've tried it. I try to take each day as it comes and dont like to plan to far in advance as I can never tell what I will be like from 1 day to another. At moment I'm trying hard to get back on my feet as I'm expecting my 1st grandchild any day now and I want to enjoy my grandchild to the full. my husband has been an absolute godsend and I really dont know where I'd be without him. He sits up all night long with me if I'm having bad time yet still manages to keep going the next day to make sure kids are looked after and do all housework as well. Its a debilitating illness and gets me down at times especially when my kids are doing things and I'm unable to go support them. At times I'm in wheel chair but mostly I try to get around just on crutches. As a side effect of the fibro I also suffer from irritable bowel syndrome, tmj and migraines. I do my best not to let it get me down but its hard especially when I've had bad night but hopefully with my 1st grandchild due any day now I'll have plenty of reason to smile.

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lelysmum | 05/07/2007 15:56:00

I am 67 years old and have arthritis of both hips, I was told this by my doctor after he sent me for an x-ray. I was hoping he would arrange for me to have hip replacement as my pain is there permanently (like most of you I would think) and the painkillers don't have much effect - I was on Indemethicin and when they appeared not to work the doctor increased the dosage only I found that I was having very frightening "funny turns" and these too increased after the dosage was increased so I (wrongly) stopped the medication until I had had 6 weeks without a turn then I went and told my GP my conclusions.

I have to tell you that I was on this medication for several years and my doctor was aware of these turns but when they increased in number (with the increased dosage)he sent me to the hospital for a brain scan and bearing in mind neither of us even thought it might be the pills, they couldn't detect anything and the hospital doctor surmised I was starting with epilepsy! - which I wasn't but this is what decided it for me. I had to do something as I was so frightened, I don't know why or how I made the connection but when I did I took matters into my own hands.

The doctor put me onto soluble paracetamol 3 times a day because taking them like this is supposed to have some residual effect, though in all honesty they barely touch the pain and I find I need them more during the night!

I cannot walk unaided and even with a stick I can only manage about 50-100 yards before I need to rest, this has resulted in a considerable increase in weight as I cannot exercise and I now also have compressed discs in my lower spine. I am extremely lucky however to have a wonderful husband who cooks, cleans, does the garden, washes the car and of course all the decorating in the home.

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Rebecca | 05/07/2007 16:42:00

I have had arthitis for several years now. I have osteo arthitis. The medicine i am taking now is mobic. It seems to work pretty well. I can not take a lot of the older medicines. They upsed my stomach. The help with the pain of the arthitis though. I can take the newer medications and they work really well and i have no stomach problems. There really is not any arthitis in my family. Just the common aches and pains. My arthitis mainly affects my knees and legs. I have had laposcopic surgery on my right knee. It helped a lot. If i do not eat red meats and sugars my arthitis does not hardly bother me at all. Another thing that has helped me is exercise. I have been going to curves for a year now and that helps a lot. In my opinion you can control the pain with diet and exercise plus the medication.

jACKIE | 05/07/2007 19:04:00

I am affected by osteo-arthritis in my joints. It started in my thumbs, now I have it in one hip and a knee. I take Co-codamol 3 times a day which helps. At night I am OK because I purchased a Tempur mattress but trying to get up in the morning is not good. I cannot function until I have a painkiller. No help has been offered, just pain killers.

Lin | 05/07/2007 19:08:00

I suffer with arthritis in my neck and shoulder due to an accident i had, I was on painkillers for a long time, i did not want to be on painkillers for the rest of my life so decided to have acupuncture, which was not for me, hence i live every day as it comes. I do take painkillers now and again, I take cod liver oil capsules as well. I find that mornings are the worst part of the day my joints ache and the pain can be unbearable, but once i get going its not so bad. I find that having a healthy diet help as well.

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Patricia | 05/07/2007 20:09:00

hi, I am to see a specilaist in Septembe to see what type of arthrirtis i do have, it affects both me knees and is not helped by my job which can mean me kneeling on a cold floor at times, the weather seems to have an effect on me as well, the cold and rain seem to make it worse, the medication that has the best pain relief for me is Diclofenic. I usually take co-codimol if I need to and if that doesn't work I take the Diclofenic, I also take Omega 3, and chondroitin and Glucosamine, and have recently started taking calcium tablets, I have noticed a big improvement since taking the calcium and hardly ever take pain killers at the moment.

TonyPony | 05/07/2007 20:30:00

At 61 years, in 2001 I, one day, stopped my running round the block due to a pain in the left hip. The pain increased over thje newxt 2 or 3 years and I noticed the left leg getting shorter and I developed a distinctive limp.

Following an x-ray in 2005 I was shocked to se the wear at the joint 9Arthritis) and immediately asked for a pair of walking sticks from the hospital. Within a month or two my consultant agreed that I needed a replacement hip.

Exactly on the last day of the 6 months by the time the NHS had to complete the op I went in and had the new hip.

Fantastic!; was sitting up in bed eating lunch one hour after and walked out of the hospital the next day. With care can now do most of what I used to do although have stopped the running round the block. After a year I now get the occasional pain at the insert if I overdo the gardening and other work.

My advice is to respect the enormous cost and high quality of the new hip and treat it as you would do a precious family heirloom. A second replacement of the replacement is not something that you want to aspire to achieve.

Take care! make the most of what these wonderful achievers have provided for you but do not abuse their endeavours by overdoing it. You have to re-appraise your life and resign to a more sedate life; the more wear you give your new hip so the sooner you will regret.

TonyponyX

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revdrewjames | 05/07/2007 20:32:00

I was diagnosed in 2000 when I was 38 with RA. I had previously been misdiagnosed with bursitis 10 years previously due to pain in my hips. I had had severe pain in my ankles and one knee also, but had no idea that I had arthritis.

I also have systemic lupus, sclero, fibro, asthma, adrenal hyperplasia, a history of pseudotumor cerebri, chronic allergies and severe treatment resistant depression. The depression may well be related to my lupus and/or fibro. I know I've had at least symptoms of lupus and joint pain for at least 20 years. Altho I wasn't diagnosed until 2000, I had searched for a diagnosis and many doctors had been stumped.

I take Celebrex and Lyrica as preventatives and Vicodin for pain, in addition to Provigil for energy and Cyclosporin for the lupus. I can't take OTC NSAIDS because I've had bariatric surgery.

My mother had arthritis, probably RA, but I don't know for sure. I had always assumed it was osteo because she was older: she was 42 when I was born, so most of the time that she was complaining she was an old woman. However, she told me that she had such severe arthritis pain in her hands shortly after I was born that she couldn't work my diaper pins, yet she didn't have much arthritis again until I was in my teens and she was in her late 50's. I'm not sure about RA, but I know that lupus flares are often triggered by the hormone surges of pregnancy.

The arthritis is worst in my left knee. I fell about a year ago and tore my ACL and the cartilage there. When the surgeon went in, he found that there was far more RA damage than had shown up on the MRI. When the surgery healed it left scar tissue, and the knee has remained stiffer than the right one.

I have more pain in the winter than the summer even here in Santa Barbara. I'm fine in the house, but I have trouble walking and have to resort to a wheelchair if we're going anywhere that requires a long walk. We keep one in the van. I have put off going to Europe because I can't walk well enough. We're remodeling the bathrooms this summer and I will install handicapped grab-bars in the showers, too, because my balance is somewhat impaired.

There is a wealth of information available on the Web, but it isn't all terribly user-friendly. Some of it is overwhelming. I've found a lot more info on Osteo than RA. I'm sure I can find out virtually anything I want to know if I look hard enough, though. It's a matter of deciding that I want to educate myself on RA as thoroughly as I have on lupus -- and I've been lazy about doing that because it hasn't been my most serious issue.

In the last two years it's become much more serious, so I'm getting more motivated to go looking for info.

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Vickie | 05/07/2007 20:57:00

Hi, I'm 32 and was diagnosed with Palindromic Arthritis about 5 years ago. This arthritis flares up, and I can go months without any pain. When I am having an attack I can't lift my arms up to brush my hair and I have to wear a brace on my wrist as it 'gives way'. My fingers also swell up and become very stiff so I have to take off my wedding ring. I have problems with my knees anyway and have had to have 2 operations to move the ligaments and bones and have pins put in them, and when I'm having an attack they hurt loads as well. I currently take celebrex tablets when it flares up but I don't find that they do much good. I've been given loads of different tablets and none seem to do the job!!!! I find that the pain is very bad at night and I lay awake for hours sometimes trying to get comfortable and get rid of the pain my shoulders and fingers. I still work full time, and just get on with my work and try to block out the pain. There is a history of RA in my family but only in my grandparents.

Rose | 05/07/2007 21:41:00

I am amazed how many of you are out there with the similar problems to me, especially those of you with fibtomyalgia and asthma, just thought I was a bit of a freak with them in one go.

I have fibromyalgia for about 11 years I can cope if I get the rest when needed. The arthritus has got worse as the years go by both my father had it and my mother has it very badly.

I Have had lots of toes and bunions straightened and a new joint instead of the base of the right thumb, although steroid injections are staving off the prospect of the left thumb at the moiment.

Reading the blogs has helped thanks all of you

Alan | 05/07/2007 22:41:00

I have Ankylosing spondylitis which was diagnosed about 17 years ago, but I can remember having problems when I was in my early 20's which I dismissed as muscle pain. I have taken a muscle relaxant and painkillers all day every day for at least 15 years and often overdose on these (not the Paracetamol though!) as I really need stronger medication but I get severe headaches with patches and other stronger painkillers. I have tried Acupuncture - no difference. I can't walk far and get tired very quickly. I must lie flat for about an hour in the middle of the day otherwise I feel really ill by late afternoon - even sitting down is no good. The pain is with me all the time - even lying in bed. Most of the time it is in my lower back accompanied by a dreadful 'dragging' feeling, but quite often it goes all the way up and into my neck and I get a feeling of pressure in my head. It can also go round into my ribs. I have mild sore eye problems which I have been told relate to this problem. At times I have had been bedridden for up to three weeks, barely able to get to the bathroom because movement is so excruciating. I try to keep to a healthy diet and luckily, although I get 'fed up' with it, I am not prone to depression which must make things very much worse for a lot of people.

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mary | 05/07/2007 22:58:00

hi ive been diganosed with Reumatoyd arthiritis it has affected my life somewhat i am in constant pain my mother had this disease and like me it affected my hands, knees , feet and shoulders i had trouble getting about without pain i have been givin dmards and painkillers these have help get rid of the stiffness tho the pain can be very severe my worst days i have trouble even getting of the sofa and it can get you down but i try to lot let it take over my life tho it is a struggle sometimes i also suffer from spondilitis in my neck and the bottom of my spine . hope this is of some help , regards mary



Vanessa | 05/07/2007 22:58:00

I have battled with Arthritis since 1990. It is in my spine and i have had one disc removed and 2 years ago had spinal fusion. There is no real history of arthritis in my family. Ithas drastically changed my life. I was working as the manager of a dried flower workshop when it really struck a physical job that was demanding and active. i am 6 ft tall and was slim and very active married with 2 daughters. The arthritis has left me walking with crutches and using a wheelchair. For six years i was at home and really letting the arthritis win, but one day i decided to fight back and with the support of my wonderful family have managed to get myself back to work and now i am PAto the owner of a contract cleaning company and i love it! I have taught myself to use a computer and also do the accounts for the company. Everyday is a battle with pain but the busy i am the better i am so i just keep going. I wont let it take my life away again. I just keep taking the tablets and laugh at life when ever i can

Chris H | 05/07/2007 23:35:00

I have Adult Onset Stills Disease. I was 45 when diagnosed in March of 2006 after being ill off & on for a couple years. None of the many doctors I saw could determine what was wrong until I became very ill & hospitalized & a Rheumatologist diagnosed me. My mom has osteo-arthritis & I have a grandmother who possibly has RA but because of her age & dementia it has never been confirmed. At this time I don't suffer from any other conditions except for cold sores. I currently take Cyclosproine for the disease, Hydroquinone & Piroxicam for pain, Restriol for sleep, Xanax for aniexty, Hydroxizine for itching, Lexapro, Previcid, Premrin (hormones), Prednisone when needed, Cortisone cream for the rash, fish oil caplets, calcium, I try to go to pool therapy 2 to 3 times a week & walk when possible. Since the illness I've tried to eat better, more fruits & vegtables. My tastebuds have changed some & red meat is no longer part of my diet it bothers my stomach. I am not currently able to work nor do many of the things I used to prior to the disease like backpacking, hiking, sports, cleaning the house, yard work, sewing etc. my joints and my body pay the price if I over do it at all which has been extremely hard because being a type A personality I did a lot of things. It has certainly made me learn that I have to pace myself. I realize my old life is gone & I need to move forward with this new life god has placed before me but change is hard. When I was diagnosed there wasn't a lot of information about AOSD compared to the other types of artritis so that means there also isn't as much research being done as there is with more common diseases nor new & quick advances in treatments. Currently they treat AOSD with the same things used in Rhematoid Arthritis. I live in a medium size city & I saw many doctors that couldn't figure out what was wrong. When I got the diagnosis I was surpried to learn that many doctors don't even know what it is so in my area there isn't muchv avaliable in the way of information. I do try to attend the arthritis support group but they aren't even familiar with it. It's hard to live with a rare condition people don't understand. Because of my limited abilities, pain & the illness interfering with my life most of my friends & co-workers have slowly drifited away. I'm lucky to have a supportive family & realize there are many people in the world worse off than I am but that doesn't make it any easier. There is an online support group for AOSD www.stillsdisease.org the website has a lot of imformation about this disease & the support group is wonderful. It seems new people are being diagnosed daily so my hope is that there will be more research, information and treatment options in the future.

 

Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?
• What is the history of arthritis in your family? Do you suffer from any other conditions?
• What treatments do you use?
• Has you diet had to change? What other lifestyle impacts have there been? Mobility issues for example?
• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?
• What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country?

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Chris H | 05/07/2007 23:35:00

I have Adult Onset Stills Disease. I was 45 when diagnosed in March of 2006 after being ill off & on for a couple years. None of the many doctors I saw could determine what was wrong until I became very ill & hospitalized & a Rheumatologist diagnosed me. My mom has osteo-arthritis & I have a grandmother who possibly has RA but because of her age & dementia it has never been confirmed. At this time I don't suffer from any other conditions except for cold sores. I currently take Cyclosproine for the disease, Hydroquinone & Piroxicam for pain, Restriol for sleep, Xanax for aniexty, Hydroxizine for itching, Lexapro, Previcid, Premrin (hormones), Prednisone when needed, Cortisone cream for the rash, fish oil caplets, calcium, I try to go to pool therapy 2 to 3 times a week & walk when possible. Since the illness I've tried to eat better, more fruits & vegtables. My tastebuds have changed some & red meat is no longer part of my diet it bothers my stomach. I am not currently able to work nor do many of the things I used to prior to the disease like backpacking, hiking, sports, cleaning the house, yard work, sewing etc. my joints and my body pay the price if I over do it at all which has been extremely hard because being a type A personality I did a lot of things. It has certainly made me learn that I have to pace myself. I realize my old life is gone & I need to move forward with this new life god has placed before me but change is hard. When I was diagnosed there wasn't a lot of information about AOSD compared to the other types of artritis so that means there also isn't as much research being done as there is with more common diseases nor new & quick advances in treatments. Currently they treat AOSD with the same things used in Rhematoid Arthritis. I live in a medium size city & I saw many doctors that couldn't figure out what was wrong. When I got the diagnosis I was surpried to learn that many doctors don't even know what it is so in my area there isn't muchv avaliable in the way of information. I do try to attend the arthritis support group but they aren't even familiar with it. It's hard to live with a rare condition people don't understand. Because of my limited abilities, pain & the illness interfering with my life most of my friends & co-workers have slowly drifited away. I'm lucky to have a supportive family & realize there are many people in the world worse off than I am but that doesn't make it any easier. There is an online support group for AOSD www.stillsdisease.org the website has a lot of imformation about this disease & the support group is wonderful. It seems new people are being diagnosed daily so my hope is that there will be more research, information and treatment options in the future.

 

Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?
• What is the history of arthritis in your family? Do you suffer from any other conditions?
• What treatments do you use?
• Has you diet had to change? What other lifestyle impacts have there been? Mobility issues for example?
• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?
• What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country?

Sharon | 06/07/2007 00:24:00

I have Osteo Arthritis of the right hip. When I was a child (2) I had Perthes disease. This for the uniniciated is where in effect the top of the femur turns to chalk and most children used to have to have hip replacements in their early teens.

I was lucky - did not feel like it at the time - and mine was found early.JUst hopsital for 3 months with pop on from toe to waist and traction. Then either a wheelchair or crutches with a sling so my foot never touched the ground for another 3 months.

After I was told OK at 5 you can walk normal now - my mother wrapped me in cotton wool. No dancing, gymnastics, fun - no lie I did have lots of fun - just with limitations. Had to get Dr approval at 13 to go horse riding.

Then when i'm 20 I start to get "twinges" my dad had OA in his left hip really bad so I knew it mas mine playing up - but I had been told at 9 that it would not bother me till i was 65. Could not be serious..... WRONG.

It was back with avengance.Ruined my 21st!!! I was imagining the worst. Here I was in my prime and my hip had gone. I would be one of 5% that did not take OMG the end is nigh!!

Got to see Dr 10 months later. Guess what where hip should be there was air. Dr obviously missed bedside mannor class and freightened the lide out of me. "Yes I would need a hip replacement. 10 weeks, 10 months or 10 years ... but I needed one!!! If i was 40 they'd whip it out now!!! See you in 6 months".....

So scared I think i actually made pain in my head. My life as I knew it was over. I was so scared I took my mum to the next appointment. Had the X Ray and gave it a long hard look before I put it for the doctors.. Could not see any more "air" but what did I know... This could be it. Whipped out then a life in a wheelchair from my 40's......

Different Dr. Just certain things I can't do... Skiing - water or snow. Snowboarding.. or jumping out of an aeroplane - with or without a parachute!!!Said I'd have to cancel jump on Tuesday then!!

went back in another 6 months and just got measured for an insole for my shoe as right leg about 1/2 inch shorter. Paid for privagte health care with only firm that would take preexisting condition. Went about my normal life with the Drs advice of "if it hurts - STOP IT!!" in my mind always.

9 years passed no treatment then the twinges. Got some stroner anti-inflamatories and painkillers. They lasted for about 6 years then we had to increase both drugs again.

Then Feb 2006. Twinges as usual, then woke up one morning and KAPOW!!! could not put my foot down. The pain was excruciating. Could not go to work, could not sleep, sit down stand up... I was a wreck. 11pm I phoned the triage of my local A & E, asked if I came in could I have some crutches and what the waiting time was.

Told possibly could get crutches but no guarantee and waiting was about 3 hours. Sweat was dropping off me and I could not reat so said no way. Long way to travel if nothing could be done. They suggested the local drop in centre that was nurse led - that would be open at 8am. They would be able to give me crutches.

So I went 8am waiting for them to open. Again the nurse I got obviously banged her head getting out of the wrong side of the bed and then sucked some lemons before staring work!!!!

No I could not have crutches they were for people who needed them---- HELLO -- MMMMMEEEEEE. Anyway she spoke to boss nurse and she said give them to me. She did not fit them up so were toolow so I was getting no benefit so did it myself as I "walked" up the hill.

Got appointment with my Dr and went to die in peace. Saw my Dr who sent me for X-Rays gave me some Dihydrocodene - did not touch the sides!!!. Still no better in a week so sent me to A & E where they again took some more X Rays - Karma Sutra page 147 was one of positions I had to get into. Pain - wow had to be taken 4 times to get it right.

Luckily there was no fracture but in his words "it's not very cleaver and won't last much longer!. Gave me some Tramadol as well and sent me away.

After a few weeks went back to work part time and was still taking the full medication. Just work and home was all I could manage. See I'm also a carer for my wheelchair bound mum so caring for her was a no no. We struggled through. Her dressing me and me dressing her.

Hair was a no no as well. Just about get in a ponlytail but wash - forget it. Eventually I got back full time and pain eased for me to do "normal" things.

Can't do inclines of any level. Stairs - well if it's good i give em a go. Went to Athens and with the aid of some patient friends and drugs. I climbed the Acropolis. YES ME!!!!!!! Found the disabled access coming down - but I can always say I did it!!!

Then Saturday - woke up and again I had twinges. Since the Feb I had been taking my anti inflamatories daily and managed - sometimes having to use the crutch in work. But I got on with life.

It's gone aqgain!!! Now on Oxycodon. can't do anything. Bend, Stretch, walk, lie down, sit down. Everything is an effort. Pain is there constantly in one form or another.

There's the little man with a jagged edged saw who saw's away at my bum.

There's the heavy throbbing pain in my foot and ankle.

There's the white hot Excalibur being put in at my waist aright through to my foot.

I could go on. I'm 40 in March but I'm not giving in. When I am in pain like this constantly with n o or little breaks then time is up. but i've not done too bad I suppose.

When i feel better I'm going back to the gym

that will "oil" my joint and give me a little extra life. I'm very obese and have major other ailments, but this arthritis is the one that impacts daily.

I sound like a rattle when i take my pills. But I'm getting on with it.

Daily I can't get shoes and socks on. Lost almost all inward rotation. Only gets up about 1/2 way to knee. Can suck the big toe of other foot - sorry is that too much information?

Life goes on. We have to get on with it. They say that God does not give you trauma's etc if he thinks you are not strong enough to cope with them.

Well just call me Atlas!!

Until the next time.

Atlas signing off - at last you say!!!!

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Lynn | 06/07/2007 00:40:00

I had an accident with some sliding doors that shut on me causing me to be unable to walk I was 29 at the time the hospital operated on me with microdiscectomy but I later found they removed more than part of my disk they also removed part of my vertebra which had crumbled I was diagnosed with Osteo Arthritis I was sent to see an Occupational Therapist whom I still see I am 36 now along the way I was also diagnosed with Soft Tissue Rheumatoid Arthritis mainly in my hands they swell & I cannot hold anything I am taking a drug called Sulphasalazine for it & I have started to feel more in control of this now I also have had a Dermoid Cyst on my Ovary which they removed along with the ovary & now they have found another one on my other side so I am waiting to find out if I have got to have more surgery, I suffer with fibromyalgia also, I can only walk with to sticks they have been adapted for my hands so they fit well or my hands swell, I suffer with severe depression due to these conditions for which I have to take mood enhancers Dolsulepen I also take diazapam, paracetamol, Tramadol, Diclafenac, sulphasalazene, Pregabalin, & a Cholestorol lowering drug as I also have Diabetes type 2 & I am over weight but this last 2 weeks I have lost 9lbs so I am trying to keep it up with swimming as this is the only exersize I can do & I also have injections into my back to help with the severe pain, my skin is a moteled complection which my pain manegment specialist told me is due to the chronic pain I suffer, I am married with 2 children 15 & 19 but as I used to be a Gymnast & very lively my life is so different now my marriage has suffered over the past 17 years we have been married so much so I sleep in a single bed in another room. Well thats me I was encouraged though to know that I am not alone as I read some ofd your stories so Thank You all.

 

albert monaghan | 06/07/2007 11:00:00

i have found that, if i take my meds regular, and put up with pain.use aids to dress, use scooter to ride/walk. get around.there is no help anywere i have seen /found except self/help.pain killers do help. but, do not stop leg/knee from giving way, dumping me on the floor!!!!! also when, talking to ppl or strangers, because they cannot *see* any visable disabilty, they assume you are conning *the state* so now i do not discuss my disabilty with anyone except my doc, and ppl in similar circumstances.so my advice to anyone with osteo arthritis is, put up with it, try to continue a normal life as possible,because apart from your doc, no one listens. yours mr. a. monaghan

Malcolm H-T | 06/07/2007 12:03:00

I have had Osteo Arthritis for several years and its impact has been variable. 13 years ago I had a stroke which left me with right sided hemiparesis so the impact was reduced as i was imobile for a long time. As I became more mobile via a wheelchair and a powerchair the effect on my left hand became more discomforting and as I used the hand to self propel it was a problem. Last year i was offered arthroplasty to my left thumb which sadly did not work first time so it was repeated and it is much more comfortable but as it is my only working hand I struggle after long periods of use. As to the rest of my body I take Arthrotec for Cervical spodylosis, am asthmatic and diabetic treated by tablets. But, I genuinely believe that the impact is minimal on my life because i wont recive limits and for as long as i am able I will stick to the truth that life is not pain free.



unlinkedstudent | 06/07/2007 12:28:00

I'm 43 and have had psoriatic arthritis since 1998. However, it took 2 years for it to be diagnosed. I also have nail and pustular psoriasis (which meant for 2 years I had no skin on the palms of my hands). I have regular 3 monthly check-ups and found that whilst methotrexate did help (once diagnosed) and made a huge difference, i.e. I could get down the stairs again, I decided to come off it due to its side effects. I control the psoriatic arthritis by having a holiday in the sun in the winter, and by watching my dairy intake. I also have gynae problems and have severe, dense adhesions. I find that a big problem is that although I am fully mobile during the summer (albeit with some pain), I experience chronic pain in the winter and no amount of painkillers help; just rest for say three days on a flare-up occurring. I have gone self employed as a result of my condition and it is extremely annoying that I am 'borderline' for DLA, as I am fully mobile in the summer months, albeit with some pain.

I have a fantastic rheumatologist but would like to see the NHS funding patients with psoriatic arthritis to go to the Dead Sea for treatment, which other countries do!

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Meg | 06/07/2007 12:41:00

Have arthritis in my spine diagnosed about 8 years ago following a severe bout of Sciatica. Haven't seen a doctor about it since then as I was told at the time "just learn to live with it!" by an extremely rude doctor! I treat myself with alternative medicines as I find these work whereas prescribed drugs don't.

Pamela Turner | 06/07/2007 14:16:00

I have osteo-arthritis in my left hip and knee, and maybe in my right knee although that has not been x-rayed. I have had a bunion on my left big toe for over 25 years but it wasn't until I started having trouble with my hip and knees and saw a physiotherapist that she told me that it was as a result of my left leg turning inwards from my hip downwards. The problems in my knee amd hip were made worse by the fact that in 2003 I broke my leg, and had a "pin " put in my femur, fixed with a plate and screws in my knee. I now have a lot of pain, especially at night,and find that co-codamol eases it best.When I last had x-rays on my left hip and knee I was told that I had no cartilage left in my knee, and if the pain got any worse I was a candidate for a knee replacement, but I will soldier on, as I live on my own and when I broke my leg, good as friends and family were, I was alone much of the time and got very depressed at not being able to get about.

Pam Turner

John Parkinson | 06/07/2007 14:33:00

I have Osteo Arthritus in my knees I strted going to the doctor with pains in my knees when I was in my early teens, I am now 59. I have had to Arthroscopi's which did not help. On my last visit to a Specialist which was a complete waste of time it appears that if you are not crippled there is nothing wrong with you. You cannot see pain. I have been on a 3 week residential Pain Management Course which was very informative and you did get to talk to people who understood what you were going through. There are only 7 of these centres in the whole of the UK taking appx 6 people at a time. Both of my parents had Arthritis my mother still does but theres is rourmatoid. I take Dihdrocodeine and Tramadol I am afraid I have never heard of Arthroplasty

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Dorothy Granville | 06/07/2007 18:25:00

I have osteo arthritis in the fingers, hip and knees. I have lived mostly in Spain since retiring last year and have found the climate of the Costa Blanca has helped enormously. I have learned to swim and have taken up Flameco lessons. My fingers are much more supple and my knees and hip are less painful.

When I am back in the UK, especially now with all the rain, all the pain returns. Get yourselves off to the sunshine folks.

Malcolm S | 07/07/2007 11:39:00

Hi I have Gouty Arthritis.

I was first informed of this in the late 80's early 90's.

I suffer from a swelling painful right toe to swelling joints in my thumbs, which does some time make my work painful to do as I am a Nurse.

It can takes up to two weeks for the swelling and redness to go away and it is very painful at times

I take at this time Allopurinol 300mg twice a day and Ibrufen 600mg three times a day.

I also have high blood presuure and high Cholesterol but at this time these are under control.

I do have a diet of sorts as I keep clear of crustations ie Lobsters Crabs wilks ect.

Some times the Arthritis comes on and i'v not eaten the fishy food , so whether now other food is effecting me i'm not sure.

I do know that whenI visit warm countries for a holiday my Arthritis does not trouble me.

regards

Malcolm

BRIAN | 07/07/2007 12:29:00

I have had osteo arthritis since I was in my early thirties. I am approching 60 years of age and as a result of oesteo arthritis I have had four operations, one on my left shoulder, two on my knees and one on my right foot. With the exception of my left knee the other operations have improved my life considerably.

My left knee is always painful and often my leg collapses. Doctors tell me I probably need an artificial knee but they feel thhat I am too young and therefore will have to put up with this condition for the foreseeable future. I have learned to cope with it.

The only medication I take for osteo arthritis is Arthrotech and this helps with stiffness in my joints very well. It has no affect on my left knee so I occasionally take pain killers if it gets realy bad.

My son is in his early thirties and he has developed osteo arthritis. Like me at his age it is not too bad but he often comments on what he can look forward to as the years go by

Sally | 07/07/2007 14:49:00

I am 45 years old and 2 years ago after contracting a nasty virus, which put me in hospital for a week, I started suffering from Psoriatic Arthritis. I had had a bout of psoriasis several years earlier but this time all my fingers, wrists , ankles and toes swelled and were very painful. My mother has rheumatoid arthritis and my paternal grandmother developed psoriasis after my grandfather died but had never had it before.

I have been lucky to get a consultant who listens to me and trys lots of treatments. I have had physio and hydrotherapy which was good. I have recently started weekly injections of embrel along with small and hopefully reducing doses of prednisilone, and various painkillers depending on the level of pain! (Everyday, rough day and oh my god days!) One of the most useful treatments I have had was attending a Pain Management Course. It took 8 weeks and didn't alter the pain, but was brilliant for helping me get my head round it and try to explain to my friends and family how it was.

Mobility on good days is fairly good on bad days really bad. But I can do more than I could and know that I am lucky in that. There has been talk of possible joint replacement in my feet and fingers, but hopefully with the embrel this may be a long way in the future, we shall see.

Taking poorly and then getting this came totally out of the blue and made me feel very sorry for myself to begin with. But now I realise the virus could have killed me but it didn't. So I should make the most of my time instead of being grumpy. I have good support from my family and the NHS so I am better off than lots of people. The best advice I was given is 'Stay positive there is always someone far worse off than you' and it is true whenever I go to physio, my GP,or one of the clinics I always see someone and think I'm not as bad as that! Theres probably someone looking at me and thinking the same!!

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jak57 | 08/07/2007 21:25:00

Yes I do have this problem, I have had it for approx 10+ years, I have found at times to be the bayne of my life, the drugs I'm on is a lot, I have been told by my gp that if I don't behave myself (doing things I'm not supposed to do) the reason because when there is a job what I know I couldn't leave it someone else like cutting grass at my old address I love the smell of cut grass, the gp said mmy next pain killer is morfeen (sorry about the spellings not my strong point)so now I have learned to take a step back, I know when I went to see my dentist I have a rather big ulser under my gum he found when he x-raid me, he couldn't believe I couldn't feel it lol, so there are advantages about having the amount of drugs I do take,origenly I went to see a pain consultant I was in a right mess and thought my life was at an end at 46 I'm 57 now well he gave me what he turmed wet acupunture he had a massive needle he put the drugs in down my spine I couldn't immagine the amount of this wet acupunture at 42 points, I didn't think at first that it had worked but I went back 4 weeks he only did 36 and each time it got better I was able to straightening my bodyI was on loads of drugs back then and I was able to tell him where the pains were coming from, he was my life saver, everthing was going on fine working as a chef in a residental home I really loved that job, well I had a problem with my back and had to go on sick leave, the doctor said that I was to take 3 months off, after 1 month I was wanted wanted back at work I felt ok, so I went to work for a trial to see how I faired, I knew within 2 hours I had made a drastick misstake but me being me I ignord the problem it was really hurting, a couple of days later I had a relapse, I couldn't get comfy having to continuall moving my drugs didn't touch me I was in a right job I tried quite a lot of different drugs I was in so much pain I was swetting and wetting myself, I tried the drugs I'm on now, I had to take them every 1 and a half hours over 24 hours 2 days later I was just starting to not feel all the pain, I was on my way to recovery, the dr. told me that under no surcomsense would not to work and that I was told to behave that's when he said my next drug was morfine and I had to have something in resurve, it was abomb shell that took me aback and 6 months later I had sorted that problem saying that I would do the things that I was saving for my retirment, I'm ok now sure I have pain all the time but it's controlled by my drugs thank God, of course with the amount of drugs I was taking had side effects the worse one being constipation really bad constipation and with the damage down there with having no pelvic floor it could take me hours to get shut really not any exaduration, so I have now drugs to help sofen the stools what a great time I was having when I went away for more than 2 days I hqad a real problem to expell to gunge I used to rupture blood vessels well I went on holiday to the Eden project I was away for a week It was a bus trip (not doing that again) I just could not expell the feases at all, I knew mum had some suppositives she had some glysalyn ones she put 5 up and arround the stools, then we waited for them to work 2 hours later I was on the loo bunged the toilet up oncew I got everything out of the intesteens over the next couple of days, havn't been on holiday since then, At the moment I'm going every day (I don't know of a time when I was 'normal' previous to that) but things at the mo is fine, I have mobility problems my right leg was dead from my knee downm so sometimes I fall because my balance was in question, I'm not letting my body win I'm not ready for for the slippers and pipe brigade, I don't make any appointments till the day as I never know if I'm going to be able to attened anyway it goes at time in hourly problems I have found though if I get a really bad day or days that a joint helps me a great deal so I have one ready for just in case, I don't take on a regular basis because I thought thatit wouldn't be so effected if I did, so I leave it until I really need it somone makes me one up when I need to have a back up, I have stopped smoking now it will be 3 year in October I'm stopping now don't want to bore you......Regards.....Jackie

joani carter | 08/07/2007 23:03:00

I am 59 years old and suffer from fibromyalga, osteoarthritis and sciatica. All of which seriously affects my life in particular fibromyalga as this affects my feet. On bad days I cannot walk at all because of pain on putting my feet down which is compounded by arthritis of my knee and spine.My medication is Meloxicam an anti-inflamatory and Tramadol for pain. I also take Omega 3 and Glucosamine. I also have high blood pressure for which i take Ramipril daily this has reduced my blood pressure somewhat. Overall I have learned to live with my aches and pains (let's face it no-one wants to hear someone constantly moaning do they) I had surgery on my shoulder 10 years ago because of pain due to arthritis which made a huge difference to my quality of life. When able I do exercise to try and keep as supple as possible. Sometimes I must admit I feel fed up not depressed but just generally fed up when I always seem to be putting pills to in my mouth just to keep going. Still it could be much worse so normally am thankful for still being around.

MARGARET McKENZIE HALLIWELL | 09/07/2007 00:12:00

I have the beginnings of a genetic form from my fathers side painful joints, especially my knees, but as i say it is only beginning, but i know the pain my dad went through, my gran always knew when her knees were playing up, at least there is more help out there since her day.

Roger M. | 09/07/2007 02:16:00

I live in Southern England.

I am a 60 year old male and have spent most of my life in manual work Even when a company diorector a few years ago I was active in production hands on.

My original trade of hand typesetting meant thaty I spent a great deal of my early working life standing in one place with little freedom to move around. This work was followed by a brief period of garden work, followed by time in a different area of printing and management until I again returned to garden work.

I have been told that the combination of standing, heavy garden work and a period of semi-deskbound management has contributed to the osteoarthritis that I suffer and have for the last 8 years.

My main area of arthritis is the lower back which causes me almost constant sciatica. I also have arthritis in varied degrees in my hands, feet, shoulders and neck.

My main treatment has been co-proxamol and since withdrawl co-dydromol. These tablets cause me to suffer constipation and also tiredness (I do not know to what degree the tiredness is due to the tablets or the pain.)

I am unable to take any anti-inflammatory due to a stomach disorder, however, I can, under severe attack, use voltarol suppositories. They do not give me stomach pain like tablets would.

My intake of tablets varies for 4 to 8 a day.

Although now unable to work I keep fit.

I can touch my toes and am generally active but a current knee injury is making me less able to stand or sit for any length of time.

I sometimes use a tens machine but not for too long a period as the effect reduces. I have had physiotherapy, massage and osteopathy with varied short-term benefits.

My sciatica is worsened by driving and I often develop a numb big toe which feels like my toe has gone through my sock. This varies from numb to a pain like an applied burn.

Coffee consumption makes things worse and I detect a link also with sodium. The condition seems worse if I have got cold and wet or in summer with high humidity.

My father suffered with arthritic hands as did my mother.I also have the hereditory defect known as Vikings syndrome in that my finger suffer shortenig of the ligaments anmd it results in my fingers clawing and pulling out of shape. I physically resist this with work, excersise and splinting.

My main treatment has been to vary my excercise during the day. I suffer pain some nights but am rarely kept awake. I purposely wait until tired before retiring to bed. I have an orthopaedic matress and have to avoid a draught to my neck.

I also suffer a little carple-tunnel syndrome in my right hand and tend to get pins and needles easily in bed. I have had mild gout on a few occasions.

My knee problem was brought on by a near accident and looks likely to be cartiledge problems and I await surgery, however it messes up my geometry and causes me less mobility

I have had help and advice via a pain clinic but this has not proved helpful.

I hope this is of use to others.

Roger M..

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Ian Clarke | 09/07/2007 02:28:00

I have suffered pains since I was a child and I remember that, at about 5 years of age, I was told that these were growing pains. Of course, now, it is known that children can actually have arthritis. I was eventually diagnosed when I was 33, however, even then, the doctor told me that she was unsure as she felt I was too young. It was in 1987 that my arthritis was finally confirmed by a rheumatologist, however, he never made any connection to my psorriasis, but, a few years later, after a rather expensive consultation with a Harley Street (London) consultant, it was finally put together with a very simple look at my hands and, in particular, my nails. I have psorriatic rheumatoid arthritis and I have also been told that I will probably NOT end up in a wheelchair, however, the condition is likely to continue to deteriorate. Not very satisfactory.

Cyndamarie Gunn | 09/07/2007 10:05:00

I had issues with arthritis all my life, being born to a 13 year old child, with no prenatial care, My bones and things did not deveolope properly. Combine that with Obesity issues as I got older and I was always in pain. I was fortuate to have Gastric Bypass Roux en Y, surgery. now I weight 10 stone approx. and Still suffer with arthritis pains, but it is easiler managed with a change of lifestyle. I soak alot in the bathtub to keep my bones from aching, I take codliver oil and glucosomine, and keep active as much as possiable.

Kay Harris | 09/07/2007 10:18:00

I was diagnosed with Rheumatoid athritis some 8 years ago and was prescribed athrotec (spelling) which I took for approx. 3 weeks but the tablets gave me stomach problems so I stopped taking them. I take nothing at the moment but the pain in my finger joints and especially my big toe is sometimes excrutiating..... I don't believe in taking drugs and believe that letting nature take its course is a better option. When the pain is bad I do take paracetamol...

Malcolm Hirst | 09/07/2007 11:29:00

I have Arthritis but I have no name for It! My Doctor did not specify what type?

I played a lot of sports untill the age of 42 and have trophies for Football & Tennis.

Now I have problems walking, my Knees are in a bad state and my back is really painful at times.

My physiotherapist told me my right knee cap has siezed up and my left one is nearly as bad.

I also have Arthritis in my neck and shoulders and my right arm extending to my finger tips but it's not to painful in my neck and shoulders.

Because I could no longer play any sports and my social life was severly curtailed, I became depressed. When I had to stop work, my world virtually collapsed.

I am on various types of medication and have

Magnetic straps on my knees, back, arm and a Magnetic bracelet for my wrist.

I must admit that these do really help but the cost came out of my own pocket and they are not cheap.

And Finally; Great words of comfort from my Doctor a few years ago.

As he wrote out a prescription for Buprenorphine,

he said, and I quote,"Get used to it, this is your life from now on." SOME LIFE!!!!!!

Mary | 09/07/2007 12:16:00

I was told some years ago that I had "wear and Tear" arthritis, and was given anti inflamitories. These gave me violent stomach pains, and I was just told I would have to put up with it. Eventually some six years ago was sent for a full body scan. It was found I had Osteoperos. I was put on a drug called Fozemax, which I took for many years. I once went to the doctors with pains and heaviness in my arms and was given Steroids. On reading the leaflet I noticed it said could cause eye problems. My husband called the doctor that morning, and he said I was to go to the optican, as I do on a yearly basis, as my mother had Glaucoma. The optician advised me not to take Steroids of any sort. So now I am not on any drug of any kind, as I stopped taking the Fozemax as I was getting chest pains, and shortness of breath, and in the leaflet with this drug, it said to stop taking it if these side effects happened. I saw a doctor who just told me to carry on with the tablets. But the breathing difficulties carry on, and I have a lot of problems getting a doctors appointment, so I have now given up trying. I get on with my life, anf put up with the pain. I can't walk as far as I used to do because of back pain, but I still do some knitting, as although it causes a bit of pain in my hands, I think it helps to keep them bit supple. I always look on the bright side and think this helps in life.

Maria Fortunato | 09/07/2007 12:56:00

I was diagnosed with Osteoarthritis on my knees at the age of 19. I hate taking medication so used ibuprofen and paracetamol for pain relief. With a reult of OA my knees kept on popping out of place and at the age of 34 I had investigative sugery to look at the knees and got them scraped to smooth them out. This helped for a couple of years but soon it was back to normal This was in South Africa.

I am now 47 and 8 years ago I came to the United Kingdom. I have carried on with my life as normal as possible. I have not taken medication and not been to the doctors to treat my joints. There are days when I have to crawl up the stairs as the pain is so intense. OA has affected my hands wrists, neck, feet etc. I have excruciating headaches which comes from the pain in my neck. Everytime I turn my head I hear the scratching in my neck and many times this starts the headaches.

I also dont believe in taking drugs as they then mess with your stomach and liver, and I would not want to have that to battle with too.

I notice that when I eat more fruits and vegetable and keep away from fizzy drinks (diet coke) I feel much better, and as soon as I start on the fizzy drinks I feel more pain.

Because my knees are so badly affected, excercise is very difficult to do and this has affected my weight and with the added "bonus" of going through the monopause my weight is increasing and my knees are hurting more. But when the pain gets bad I take ibuprofen

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Ray | 09/07/2007 12:56:00

I have very mild rheumatoid artritis in my fingers and ever since I started taking olive oil capsules on a daily basis it has not deteriorated so much so that I was able to got back to ten pin bowling which I hadn't been able to do for three years. My mother had severe rheumatoid arthritis from the age of forty and eventually was crippled by the disease so I hope I can keep it at bay for as long as possible



Val | 09/07/2007 14:27:00

Hi I had arthritis diagnosed in my mid forties and at that time it was in my neck it eventually improved after I found a doctor that told me I could be treated.In my fifties I was diagnosed witg Osteopenia and given drugs but they just made me feel bad,as a person that prefers the herbal route I tried MSM , general vitimin ,strong calcium, mineral supplements and of course my trusty Garlic oil capsules.The MSM certainly eases a lot of the aches and pains and it also helps to boost the system against some diseases.Just lately I badly hurt my head and was x-rayed for a broken spine but luckly it wasn't but it did find out that I had the rare double cervical ribs and that was probably the reason for my initial neck pain as one was seen to be fused on one side.I do keep up to date on all of the vitimins around today but this formula seems to work for me.I only visit the doctors when all I try doesn't seem to work but I do tell him what I am taking and luckly he understands my dread of drugs.

Sharon | 09/07/2007 14:40:00

I have arthritis. I fell about 2 1/2 years ago and before that had no problems but when I fell I cracked both knees. I went to see my doctor who sent me to the hospital. The hospital took one look at me and said I had pulled the muscle in one leg and wouldn't do any xrays. It took about 6 months to get xrays done and by then the damage to the knee caps wasn't treated and the arthritis was easily seen. I have only seen a consultant/specialist twice in that time and I have not been tested for RA. Both my parents suffer/ed from Arthritis. Besides my knees I have problems with the nodules on the finger bones which make knitting and typing sometimes painful.

I was prescribed arthritis medication but that gave me a bad stomach so don't take it and rely on ordinary painkillers which don't do a lot for the pain.

I have limited movement and also suffer from depression following PTSD and I also have Polycystic Ovarian Syndrome.

hels | 09/07/2007 15:34:00

i have suffered with djd for about 40 years. about 9 years ago i was told by a consultant that he could only offer me the pain control clinic & that i would probably need a wheelchair in 6-12 months time. i was so very lucky to find an excellent osteopathic physician who has kept me walking & relatively pain free with a combination of treatment, diet & vitamin & mineral supplements & i can never thank him enough for this. what is so shocking is that about 3 years ago the NHS cancelled all contracts for osteopathy in this area & replaced the services with a hospital assessment clinic some distance away & physiotherapy, which quite honestly, as well as trebling (at least) the time before any treatment is offered, doesn't actually help except maybe to alleviate symptoms for a few hours. when the PCT was asked why this service had been terminated, they said that it was not cost effective. this has left so many people in constant pain if they cannot afford to see an osteopath privately. before the services were terminated the osteopaths were always kept very busy and produced some extremely good results. maybe i am getting paranoid in my old age, but i cannot help thinking that, as usual, the elderly who have paid into the NHS, many from its inception in 1947, are being sidelined to say the least!

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David Filkin | 09/07/2007 17:12:00

I have to confess I have not found the time to read all the entries above before writing this; I am in Kingston Upon Thames, Srrey, UK and I am 65 years old. I suffered from Osteo Arthritis as a result of sports injuries (Rugby Union Football) incurred over thirty years ago and at first I thought they had all healed naturally. There was no history of arthritis in my family but about eight years ago I began to feel pain in my right ankle where I had turned it over a few times in a Rugby match. Soon I was so disabled that I could not walk any significant distance comfortably. I was referred by my G.P. to a Rheumatic specialist who arranged for me to see an Orthotics expert to have a support made for my right ankle, and prescribed Diclofenac as an anti-inflammatory drug t5o help me cope with the pain. Whilst this all helped, I was deteriorating rapidly and soon could walk only 100 yards before needing to rest, aqnd only then with the aid of a stick. My Orthotics and Rheumatoid specialists both urged me to seek orthopaedic surgery; since I was by profession a science and medicine television journalist I decided to research the whole sublject of arthritic ankles and soon discovered an alarming discrepancy in how people had fared. Some people had had very successful artherodesis or fusion of the ankle bones; others had been left after this operation with a club foot. I also discovered that while a first generation of artificial ankles had had only limited success, a second generation of these devices was proving far more successful, particularly in the USA. With the approval of the orthopaedic surgeon to whom I had been referred I staqrted to contact people who could advise me on thie and one old school friend now practicing in the USA got a specialist friend of his over there to contact me, recommennding the name of a surgeon who would give me an artificial ankle. I got as far as establishing what this would cost and how the operation and after care would be arranged before deciding to seek the advice of an orthopaedic surgeon who specialises in ankles, Mr. Paul Cooke at the Nuffield Orthopaedic centre in Oxford. He saisd he could fit an artifical ankle but strongly advised against it at my age (then 62) be4cause he did not believe it woulsd stand up to the kind of life style I wanted to pursue as well as an artheroscopic fusion which he could perform. He felt sure that I had a very high chance of walking almost normally after the operation even if I could not run a marathon! I was very impressed with his calm honest and authorative approach and decide to do as he said. The result has been spectacular. Two years later I now walk the golf course without any problem and I was so pleased with what he had done That i asked him to also treat myarthritic big toe on my left foot - this has also been fused. I realise that because of my research and good fortune in finding Mr. Cooke I have had a much better outcome than many others. I only have a few issues with arthritis now; principally it is hard for me to keep my balance when standing on one foot as I put on shorts or trousers; but this is a small price to pay for the freedom of movement on two feet I now enjoy.

My treatment was incidentally complicated by the fact that I am a type two diabetic; this was all superbly handled by Mr. Cooke and his team.

The moral of this story is; find the right expert and if you are lucky and the condition is such thast it can be arrested, osteo arthritis can be dealt with and a normal future is possible. Take your time in sorting out what to do and don't rush to accept the first form of treatment offered to you.

David Filkin.

Orson Cart | 09/07/2007 17:32:00

Had high powered high paid job when diagnosed with osteo arthritis 13 years ago aged 44. Forced to give uop work as a result of it. No previous history of it in the family to my knowledge. On doctors suggestion I occasionally treat the pain with large doses of wkisky which can help temporarily.

Worst thing is the pain and not being able to remain standing for more than 10 minutes at a time.

Outwardly, many of us look perfectly healthy and as a result of this nobody cares about us.

long for the summer and some warm weather as this does seem to help a little.

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Dolphin_74 | 09/07/2007 17:57:00

Hi, My name is Rachel I'm 32 and was diagnosed with osteoarthritis when I was 30, after having had a lot of operations. I was born with out properly formed hip sockets and a twisted pelvis, I've had 20 operations and a double hip replacement at 22 and 23. In Febuary this year I had the 1st of a double knee replacement. The arthritis runs in most of my joints. I walk with crutches or a crutch, depending on my pain. I'm on various pain killers. I was once offered methotrixate but was frightened to death of taking it after being told in not a very nice way that it could kill me!

My diet hasn't changed, apart from I'm on a constant diet lol. I'm doing very well on it to. As other people can appreciate it is very hard to excersise when your in a lot of pain, but I manage to go swimming, with help at least 1x a week. I do feel quite lonely and isolated. I do struggle and feel very frustrated when I can't do things that I would like to do. I've never been offered Arthoplasty and would love to know what it is.

I do manage to do a bit of voluntary work which I love.

Also if anyone takes methotrixate I would love to hear your comments about it. I would also like to see more information available about this and other drugs.

Suzanne 09.07.07 | 09/07/2007 19:21:00

Hi,

After reading some of the comments above I realise how very lucky I am not to have such severe restrictions on my life as some of the other contributors. I have rheumatoid arthritis, which was first diagnosed in 2001 when I was 46. As far as I know, there is no history in my family, although my father & brother both suffer from gout & psoriasis, which id a related condition. the onset was sudden & literally overnight, which knee, wrist & hand joints flaring up for a day, then settling dowm for a few days. After 2 years of fairly unintrusive incidents, I was free for 2 years then I caught a virus & it came back.

The support I have received from the medical team, both GP & consultant was fantastic, although I felt I was getting nowhere for 6months, difficult to walk, stand, dress & eat: they promised me I would be right again & I am pleased to say they were right.

I take 12.5mg methotrexate per week, with no adverse affects, backed up with folic acid & diclofenac and have been fully mobile for the past 2 years. I don't really have to restrict my diet & always use wrist supports when doing heavy or repetitive work as a precaution. I can wear high heels again!!!

If anyone has been recently diagnosed, please don't think it is the end, with good support & finding the right treatment, there is every chance this can be lived with. Did I also say family & friends are a great help as well.

julie wilkinson | 09/07/2007 20:07:00

Firstly what kind of arthritis do you have? Osteo -arthritis. When was it diagnosed and at what age were you then? First diagnosed with spondalosis of the spine, when I was about 45. Subsequently diagnosed in wrists, thumbs, fingers and knees. Think may have it in left toe as well.
• What is the history of arthritis in your family? I have a sister with arthritis in her knees. My Aunt and my mother both has recently started to have knee problems. Do you suffer from any other conditions? Carpal tunnel in right hand.
• What treatments do you use? Glucosamine (when I can afford it) paracetamol.
• Has you diet had to change? I haven't changed my diet - I have been told that I should just grit my teeth and get on with my life as there's not a lot else they can offer. What other lifestyle impacts have there been? Mobility issues for example? The pain often makes me ratty - I worry about the level of painkillers I take so keep them to a minimum. I find walking and swimming more painful than it used to be - and I am much slower - which irritates my husband although he understands. I find writing very uncomfortable, difficult for a teacher.
• Have you ever had or been offered Arthroplasty? No • What do you think of the information available about arthritis? What information? How would you like to see support for the condition improved in your country? I would like some support - any support! I get the impression that its 'your getting old (I'm 53!), tough' or 'its your age!' Neither of which are particularly helpful, please can someone just provide some sort if guidelines on what I can do. I know that my sister who lives about 150 miles apart but have had the same amount of suppot - none. I have done better than her in that I have not had to wait for X-rays to confirm. She had to wait three years!

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Jan | 09/07/2007 23:32:00

Hi, Have had OA since teenager. It started in my knees and has slowly affected most of my joints. I am now 49 and fortunately still mobile. I have found diclofenac to be most effective although I only take painkillers etc when I'm really bad but am lucky that I can tolerate a lot of pain. My worst problem is in my neck now which has caused a lot of problems over the past few years ie numbness and tingling of my arms and hands and also parts of my face. managed to cope with diclofenac when it flares up but now have an ulcer so am not supposed to take them anymore. Just have to see how I go. Have a good GP and have found Physio can give me some relief for a while.

jackie knighton | 10/07/2007 10:05:00

I have late onset stills disease similar to RA have had it since I was 15 I'm now 42 I also have fibromyalgia and IBS. My knees are worn out and I am told I need replacements I am trying to hang on as long as possible (with support from my rheumatologist and orpho surgeon) I have an 8 year old son whom I had through elective caesarean because of my joint problems. I worked full-time until 8 years ago when my worn out joints caused me to stop. I count my self lucky because my first rheumatologist had me on bed rest for 8 weeks when I was first ill and this stopped my joints becoming deformed (although at 15 I wasn't grateful at the time! thankyou Dr Carty!)

jackw3 | 10/07/2007 12:00:00

I FIRST DEVELOPED ATHRITIS WHEN I WAS ABOUT 54, AFTER TRAVELLING ABROAD MOST OF MY LIFE IN WORK. THE ATHRITIS I SUFFER MOST FROM IS THE NECK, MY RIGHT HAND,LEGS. THE NECK IS THE MOST TROUBLESOME AS I OFTEN EXPERIENCE MOMENTARY GIDDINESS WHEN TURNING MY HEAD WHEN WALKING, I ALSO GET A LOT OF PAIN IN MY RIGHT HAND WHICH IS CONSTANTLY SWOLLEN. I AM 66 YEARS OF AGE AND LIVE ON MY OWN, I AM NOT AWARE OF ANY ATHRITIS IN MY FAMILY APART FROM RELATIVES COMPLAINING OF GENERAL ACHES AND PAINS AS THEY GOT OLDER. I FIND THAT THE ATTITUDE OF DOCTORS QUITE FLIPPANT WHEN THEY DISCUSS ATHRITIS, YOU USUALLY GET THE STOCK ANSWER "THERES NOTHING YOU CAN DO ABOUT IT,ITS BECAUSE YOUR GETTING OLD". I DO VERY LITTLE EXERCISE AS I FIND IT PAINFUL AND DIFFICULT JACK

Kathy Smith | 10/07/2007 12:18:00

I was diagnosed with OA in 1976 in both my knees, had arthroplasty in 1978 and removal of right kneecap in 1980. 4 years ago had exploratory of right knee and told would need knee replacement but would not do this until I retire, I still have a least six years to go but could be more as they keep changing goal posts. I used a pain relief, aromatherapy oils and massage, as I cannot used Irbofen or asprin as allergic. Two years ago also confirmed I have in right hip and left ankle. I try to stay as active as I can and find swimming helps. I cannot walk as far as I used to but still get about and do not let it stop me doing things I want to. The weather especially this year has not helped and I am having a bad flare up at the moment, which is also partly due to stress, as my husband has and still is quite ill at the moment.

Alan Cooper | 10/07/2007 12:21:00

I started with OA after a spinal injury in 1974. There is a history on my mother's side of the family. It has spread over the years,and I was medically retired from the Civil Service ten years ago at the age of 46! Not that I wanted to be, as I think if I stay as active as possible it keeps the joints mobile. I have OA in my spine, both knees, hands and ankles, also my right hip is showing signs of deterioration. I have just changed specialists after 14 years of being told that there's nothing they can do. Climate definitely affects OA. We were in Australia last year and I didn't use my walking sticks at all until we came back to the UK! As with some other correspondents, I also have high blood pressure and arrhythmia. I do not take cod-liver oil because of the cholesterol in it, but I do take omega 3 capsules and glucosamine sulphate daily. I don't know if they do any good, but I've been on them so long that I daren't come off them just in case. I have had seven arthroscopy operations on my knees amd have been told they are both 'worn out'. I have no knee cartilage or minisca, which results in little 'peaks' or spurs of bone growth in the joints, that hurt until they snap off. My knees make the most awful crunchy sound. I find going upstairs on all fours to be a help, and come down either backwards on all fours or shuffle down on my bottom. My wife would like a bungalow but I fear I would seize up without the stair challenge!My medication is 8 co-dydramol per day and 2 naproxen (nsaid).

hilda | 10/07/2007 13:41:00

i was told i had poly arthritis four years ago. for the past 31/2 years i have been on an anti inflametary called Naproxin, i am taking 1000mg a day it helps most of the time and i am able to get about fairly well. on bad days i have trouble getting out of bed and down stairs. i try to be as active as possible even when i am in pain, i refuse to give in to it. i am 48 years old. i am fit i know i have limits as to what i can do and unfortunatly having artritis has changed the way i live my life. i used to be very active ,but now i can not walk as far as i would like to every day , it has affected my social life. i used to be involved in all the local carnival parades, i can no longer walk them, i can not go out unless i am with someone as i often fall over, but i will not let this get me down,

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Thelma Armeson | 10/07/2007 15:06:00

Good reveiws. I have/had OA. I had rt and lt hip replacement and rt knee replacement, my first hip was 12 yrs ago.I fratured my lt hip 4 yrs ago had four surgeries on and now I am walking well and it is fine. I have a wonderful surgeon, who put right when I had my fracutue when soneone else made a mess of it, but thanks to him [ who did all of my replacements] I have no pain, walk quite well and a good quality of life. I take Diclofenic retard once a day and that is all.

june | 10/07/2007 15:36:00

hi i have OA in my elbows hips hands and feet i take pain relief that the doctors give me which do help i still go out to work part time but but am finding it more difficult as i work in retail but i try to keep going dont want to give in to it yet but it is difficult sometimes

slytherin63 | 10/07/2007 17:15:00

Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?

OA in my neck 1996 aged 33, and OA lower back 2006 aged 42.

What is the history of arthritis in your family? Do you suffer from any other conditions?

Am adopted so don't know if in my family, but my adoptive mum had RA for about 16 years. I have diabetes type 2 insulin dependant, asthma, high blood pressure, high cholesterol, iliac compression syndrome, pcos, angina.

What treatments do you use?

Diclofenac

Has you diet had to change? What other lifestyle impacts have there been? Mobility issues for example?

I don't tend to eat as much red meat but didn't choose that for any reason it is something that just happened. I find sitting uncomfortable and always have to move, joints stiff in the mornings before getting out of bed. Always feel like a permanent heaviness in my neck, somedays I will move a certain way and it feels like an electric shock has gone across my shoulders and down my spine and that i wont be able to move. I have mobility problems due to the iliac compression syndrome, so when everything is playing up it is hell.

Have you ever had or been offered Arthroplasty? Could you tell us what was involved?

Never been offered.

What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country?

The information is there, not that I have used it much I have to say. Haven't used the support so not sure how it could be improved.

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meo | 10/07/2007 17:44:00

I am 38 and was diagnosed with Ankylosing spondylitis 8 years ago. I have an Aunt with Psorisis, so i think that the family gene is there. I also suffer with Lupus and Kidney stones.

The medication i currently take are Methotrexate, Folic Acid and Paracetamol for the AS and I take Plaquenil & Mepacrine for the Lupus.

I also suffer from Iritis which is an inflammation of the eye muscle, which normally needs a dose of steriod eye drops when it flares up.

I have cut out most dairy products, cut down on red meat and red wine and have had to eliminate all beansprouts from my diet as these are almost toxic for lupus sufferers.

I find that a daily dose of pure flax oil really helps with fatigue.

I have brought up two children (now aged 15 & 13) with these conditions, and although i would say that i have tried to not let it affect their upbringing, i think that i have more caring children through my illness.

It has taught them to be less selfish when they have to help their mum with most things. I cannot walk too far without pain, i was unable to lift them up as toddlers, play rough and tumble, play sports, however, my family has always been there to help me.

I have a very good friend who helps me to look after myself. If things are really bad, there is nothing worse that feeling really poorly and your hair is a dirty mess, so she comes and washes my hair, shaves my legs etc.

Have never heard of Arthroplasty, so i don't know whats involved.

People are becoming more aware of Arthritis now, but i do think that the health service needs to give people with different forms of Arthritis more information about diet and self help.

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Susan ST James | 10/07/2007 18:33:00

Hello every one my name is Susan. I have been suffering RA for the last 8 years, my GP first diagnosed it at polymyalgia, I was dosed up with steroids for 4 years, I thought they were brilliant, until I put on too much weight. Then I was transfered to a new GP and she sent me to see the Reahuematologist, he cut back the steroids I was in instant agony, I have RA in all my joints. He started me on course after course of nsaids, they didnt work, I was dosed up with steroid injections, now they don't work, now I am on Embrel, I self inject every week on 20mg methtrexate, 5mg prednisolone, I appear to be stable at the moment. I also have an under active thyroid, since being on steroids, I had gangerous appendisitus, cateracts, and now severe diverticulitus. When will it all end!!!!! I am quite mobile at the moment, But I find I cannot stay still for long as I get very stiff, so I am constantly doing things. I am even contemplating going back to work, through Shaw Trust who help people with disabilities to go back to work.

dorothy | 10/07/2007 21:53:00

arthritis runs in my family and i suffer with it myself.i am always in pain and there is no cure for it the pain is excrutiating at times and i find this unbearable i find my condition is getting worse especially in the hands wrists and legs and neck.I take painkillers everyday but it still does not take the pain away,i find the condition can deteriate rapidly and i find this is nothing to do with weather conditions it is just part of the body and everyday life.i think this can be inherited and there is no cure for arthritis.Some days its hard to beat as i am constantly in pain the pain never goes away.

Ray Percival | 11/07/2007 10:26:00

well for a long time i was having trouble with my shoulders and was told that there was nothing wrong so i asked my doc to send me to wrightington hospital in wigan and they found that i had arthritis so they had me in and scraped the bone and did some other stuff inside then about 2years later i had my other shoulder done but this one has not gone so good so i'm just getting on with it as they have now told me it can take 6 to 12 months to heal so i'm just going with the flow i have also been told that i have it in my knees so thats somthing else to look farward toand the pain i'm still in well i just live with it as it's no point in saying anything as most doc's don't beleve you some just say it's in your mind but who has the pain?

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Mary McDowell | 11/07/2007 11:55:00

Hi my name is May. I have had arthritis for about ten years. I t is worse in my knees but I also have it in my spine top and bottom and my hands . It is now affecting my feet. Sometimes I cannot go out for days on end because the pain is so bad. This really annoys me because I like to walk every day to keep my knees from stiffening up.

Charliegreywolf | 11/07/2007 16:11:00

I was diagnosed with arthritis in my toe joint (it was so painful I wondered to begin with if it was gout) by my diabetes nurse because my doctor didn't seem interested. Since then I've been offered no treatment, only the nurses advice of "plenty of heat and massage" I swear by my infrared massager and often use Lush massage bar (something or other wicky muscles, can't remember what its called but it smells of cloves and has little beans in the

Charliegreywolf | 11/07/2007 16:13:00

I was diagnosed with arthritis in my toe joint (it was so painful I wondered to begin with if it was gout) by my diabetes nurse because my doctor didn't seem interested. Since then I've been offered no treatment, only the nurses advice of "plenty of heat and massage" I swear by my infrared massager and often use Lush massage bar (something or other wicky muscles, can't remember what its called but it smells of cloves and has little beans in the bar. Its great suff and eases that nagging ache that comes with arthritis. Apart from that, I just struggle on and deal with it. The medical profession seem to just think its one of those things and should be swept under the carpet in the surgery!

Membership of the Patients Voice is free and is open to anyone.

Iane | 11/07/2007 21:03:00

I have osteoarthritis, it first showed itself when I was nearly 30, with strange aches in my hips and knees and also in my hands.

At 30 I saw a rheumatologist who told me what I had and that I would need arthroplasty in the not too distant future, she also suggested I see an orthopaedic surgeon. She also suggested that I look into a new procedure called resurfacing, I looked into this and more traditional thr.

I started having physio and eventually saw the orthopod, he was shocked when he saw the x-rays of my hips, he had never seen so many osophytes before. He decided to do arthrograms and then I had a bilateral arthroscopy. By now the pain was really bad, I could no longer ride a bike, walking was possible using a stick but my range of movement was virtually nothing.

Unfortunately the arthroscopies didn't seem to help so I asked about resurfacing and was told that this would be the best option for someone of my young age.

At the age of 37 I had both my hips resurfaced, that was over two years ago now and I haven't looked back, I was able to ride my horse nine weeks post op, mounting from the ground, I cycle, swim, recently been on a walking holiday, work is no problem, basically I live a normal life.

Prior to the resurfacings I started taking glucosamine, MSM and omega 3 oil, this seemed to ease the pain quite a lot, my mobility was rubbish, I looked like a frail old lady hunched over my walking stick. I spent alot of time waiting, waiting while everyone else went walking, cycling etc... I was very well read and knew every cafe very well... work was also difficult, bending and lifting and walking upstairs was a great problem, I used to heave myself up bannister rails.

My knees are starting to give me trouble but I continue with the supplements and hope to avoid having them looked at for a while yet and to carry on enjoying this new found freedom. I have an underlying condition called sticklers syndrome, it is a connective tissue disorder that makes me partially sighted and premature arthritis is a classic symptom, also related to this I was born with cleft palate and pierre robin.

jane

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Netty | 11/07/2007 21:56:00

I have been diagnosed with osteoarthritis in my feet. I have always had problems with my feet/ankles since I was around 5 years old. My mum was originally told that I would grow out of the problems with my feet, so I put up with it. When I was 18 my left knee started giving way and I ended up on the floor several times. I was eventually referred to an Orthopaedic specialist who gave me 3 arthroscopies on my left knee but failed to diagnose anything specific but he did a lateral release (cut one of my tendons) as my kneecap was running 'offline', so I put up with it. When I was around 23 I started to get pain in my feet especially first thing in the morning and after relaxing so I badgered my GP to refer me to a podiatrist who couldn't figure what was wrong. I was then referred to physio at the local hospital. They said I had fallen arches, inverted ankles with limited movement and also plantar facitis in both feet but mainly in my left one. They re-referred me back to the podiatrist who tried fitting me with different orthotics to correct my ankles and arches. These didn't help, the pain got worse and my left foot has been permanently swollen for the last 6 years (which is a pain in the backside as I now have difficulty finding suitable footwear). My podiatrist told me early last year there was nothing more he could do for me and referred my back to the Orthopaedic department at the hospital. In July 2006 I was referred for an MRI scan. In January 2007 (I am now 31) I was told 'Yes you have plantar facitis, inverted ankles. Oh and by the way you have osteoarthritis predominently in your left foot. There's nothing I can do so I'll see you in 6 months'. Charming!!! My GP has told me that if my feet were looked at properly when I was small, I wouldn't have all these problems now. When my feet hurt, I can't walk properly which makes my knees and hips hurt and I sometimes pull muscles in my back if I stumble or trip when I can't pick my feet up properly when walking. Most of the time I'm fairly upbeat about having arthritis but I feel so frustrated at the NHS and feel they have let me down by not sorting my feet out at an early age.

There is no history of arthritis in my immediate family.

I had to see my GP about pain relief as plain old paracetamol just wasn't doing the trick. I now take coproxamol, Ibuprofen, Glucosamin, Condroitin and Cod Liver Oil capsules. I have had my arches strapped up which didn't really help. I have also been in so much pain that I have also had steroid injections straight into the sole of my left foot. The only effect this had was me screaming down the hospital as they injected me! It had no effect on my plantar tendon as was intended.

I have started to eat more healthily as I am overweight and I know this doesn't help my joints. I used to ride my bike everywhere but haven't sat on the saddle for over 2 years now as it hurts my feet to pedal. I cannot drive as my feet cramp up and it would be too dangerous for everyone if I was driving alone and my feet cramped up as I'm tootling along. I am going to see if I can do my CBT and get a scooter (wind back and go variety) in a couple of months as I'm getting fed up with having to rely on other people and public transport to take me places. If I walk into town I have to use a walking stick and have plenty of rests. I am having to think of a career change very soon as I work in a supermarket stood up and by the time my shift is over I'm rattling with painkillers and can hardly walk.

As far as info goes about arthritis, I was given an information booklet by my GP, given the basics (ie if I had arthritis in my knee they could consider replacement) but was told nothing can be done about my feet apart from pain relief. I know in other parts of the UK there are Pain Clinics at various hospitals who can help and advise on pain management but there isn't one near me which is a real shame as I feel it would help me considerably.

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mandy | 11/07/2007 23:51:00

hi

I have ostreo arthritis in both knee's , im 49yrs, i started to have problems when i was still at secondrey school, when i was 19yrs old i had both knees operated on as the cartledge was damaged, i have to add that this runs in the family, for a few years i was ok then my legs begain to hurt again, i have had two arthoroscopys on each knee and i was told and showen that i had no cartledge left, on top of which my bones had started to get the deformatys that one gets, i try and not use to much medication as then when the knee's get that painfull the tablets work better. i am not the only member of the family that have this problem as my aunt had to have her knees done at a early age as i did. and her youngest daughter has the same problem. I find that the weather makes my legs bad when it's damp and wet. also the cold. when it's warm or hot i find that i can get about easier, but i have to be carefull as my legs give way with out warning. which because of this i have managed to injure my hands, ended up with carpule tunnel and had to have the trigger fingers repaired to both hands to help i was given corticosteroid injections to one hand, even know when i fall i still put my hands out ( should have learn't by now not to) because of how my knees are i have knw been told that i have plantar fasciitis in both feet and have to have cushioned insoles made for my shoes to help stop some of the pain,I also found out that i had endometorosis from the age of 19yrs if not sooner, which makes me wonder as this spreads round the body and latches on to scar tissue, plus on top of that i have had goure stones removed. the medication that i take is meptid, paracetamol's. and know i have just found out that parkinsonism runs in the family as my mother whome is 68 this yr has been diagnosed with it as well as uncle and grandmother had it as well. at the moment i use a stick or a mobile buggy when out and about as i find it very hard to walk far. any one in my shoe's just look on the bright sid e of life and keep smilling it helps.

Barry Ebsworthy | 12/07/2007 07:24:00

Firstly what kind of arthritis do you have? I have both Rheumatoid and Osteo.

When was it diagnosed and at what age were you then? I was in Northern Ireland with the Army, I had to go on patrol one morning and couldn't move. This was in 1993 and I was 33 years old.

What is the history of arthritis in your family? My mother has osteo arthritis and my grandmother (My Mothers mother) had rheumatoid arthritis. No history on my fathers side.

Do you suffer from any other conditions? I have a couple of other conditions. I have had left knee problems since 1979 when I was 19, I have had exploritory operations where they have cleaned out debris floating around the back of my knee, they now put it down to 'FAIR WEAR AND TEAR' yeah right in 1979 i was 19. I have also had numerous amounts of fluid being drained from my knee, the last amount was 120Ml. I also broke my back in 2002 and when they x-rayed my back they discovered that I had Spina Bifida Occulta, apparently 30% of the population are walking around unaware that they have this condition and it was only because of my back injury that it was found out.

What treatments do you use? I have tried every treatment under the sun for my arthritis, they all seem to work for a short time and that is it. I was under an Army specialist for donkey's years and that was just a case of going to see him every six months, blood tests, ok see you in six months, by the way try these tablets.

Has you diet had to change? I try to eat as healthy as possible but I admit to being a chocoholic, and the ginsters pasties are lovely (Made in Cornwall and sponsor my home football club Plymouth Argyle) so by eating them I am supporting my club from afar. I have been on diets and the last one was Weight Watchers where I lost a total of 5 stone, the problem is that not being able to exercise regularly it soon creeps on again. Saying that, when I was first diagnosed i was a lot younger then and didn't have weight problems.

What other lifestyle impacts have there been? I used to love playing football and was a regular rugby played in the Army representing my unit on many occasions. I have had to give this in so exercise stops once again.

Mobility issues for example? I have mobility issues obviously because of my condition. I am unable to walk too far without having to rest so I am unable to do a lot with my family. This mixed in with my back is a major concern. My family have been brilliant and so patient, I don't know where I would have been without my wife.

Have you ever had or been offered Arthroplasty? Could you tell us what was involved? Who? Never heard of it, so I suppose you could say no.

What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country? There are leaflets scattered around doctors surgeries etc.. but it is often talking about stuff that I have already tried, there are no specialist clinics anywhere near where I live so that is out of the window. Physios have never been able to cure my problem, so basically I have had to put up and shut and learn to live with it.

P.S. My symptoms seemed to ease up after my back injury maybe because of all the different pain killers and anti inflamms etc..that I am on. But just recently my symptoms are coming back again, my knees are killing me. The only change I have made in recent months is going back to drinking coffee, so I am going to take a caffeine break and see how i get on with that.

P.P.S. Mark F!! as much as I sympathise with you and realise your condition is difficult. Do you really have to try and get us all to feel sorry for you? I have had my conditions for years but I don't let them get me down, I have got a wicked sense of humour still and joke about my injuries. All of these things have happened to you because YOU have let them. Come on man, get a grip.

Barry Co.Durham

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Meg Macpherson | 12/07/2007 10:30:00

Hi I'm Meg. I've got fairly mild osteoathritic changes in my knees, but strangely enough it's my hips that cause more problems. My knee flared up about 10 years ago and is treated with 50 mgs Diclofenac twice a day. But I find lying on my side at night a problem as my hips get sore. I've recently had some minor surgery to my right foot involving bunion correction and two toes being straightened and pinned. So I have to use crutches and "heel walk" on my right foot, which has meant undue pressure on my left hip to stand for any length of time. As a result, my left hip is very sore a the moment which I'm hoping is only temporary. I'm hoping I have also helped the situation by losing weight. So far I've dropped 47 and 1/2 pounds, or 3 stone 5 and 1/2 pounds, and I am trying to lose another stone and a half. I'm following the lighterlife plan which is total meal replacement under medical supervision, and it's taken me 3 months to lose the weight so far.

My mother and maternal grandmother both suffered from osteoarthritis of the knees, and they both had heberdens nodes of the fingers, which I now have too, Whether the fact that we all played the piano is of any significance I don't know.

Suzanne | 12/07/2007 10:30:00

I am 40, and been a sufferer for many years after having transvere myerlitis, I had many operations on my legs and feet. I take 50mg 3 times daily of dicolofenac and also If needed Co dydramol. One of the best treatments so far is Glucosam 500mg/Chondroit 400mg 3 times daily which has really helped and also 1 cod liver oil 550mg daily. Good luck to you all. x

ZAIN A SHAMSUDIN | 12/07/2007 10:50:00

I HAVE A PROBLEMS AND ADVISE HOW TO CURE IT IN MY BOTH LEGS AND ARMS TOO FOR

ARTHRITIS/ I AM ABOUT 64 YRS OLD. I CANNOT CLIMB STAIRS OR WALK TOO MUCH

 

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Liz | 12/07/2007 10:58:00

I suffer from RA, which was diagnosed 5yrs ago, at the age of 42.It has changed my life considerably, as the pain I suffer in hands, ankles, knees, hip and back, makes it extremely hard to continue with the activities I used to enjoy.Like gardening, walking.I cannot work, because of the limitations and pain. I take co-codamol, for the pain, but it doesn't work that well, it eases the pain slightly. I also suffer from depression, a part result of the RA. I am now seperated from my husband of 27yrs. something that I think the RA and depression contributed to.As I am not the same person, I was 5yrs ago.I take hydroxychlroquine, meloxicam for the RA and have just started taking Glucosamine&Chondroitin, to see if that helps.I also take paroxetine for the depression.There is no history, that I am aware of , of RA in the family.It's hard to explain, what its like to be in constant pain. I know people look at me, and think, there is nothing wrong with me, as at the moment I am not showing outward signs of the RA. which is hard. I feel people do not take my pain seriously,(I know my ex didn't). The more I do, the more pain I am in, so I have had to re-evaluate my life and the way I do things. It is very hard and very depressing.

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TERESA | 12/07/2007 11:35:00

Hi

I'm a 55 year old female.I'll try to answer the questions in the order you set them

• Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?

I have OA - diagnosed when I was 47 in 1999

• What is the history of arthritis in your family? Do you suffer from any other conditions? My brother has severe arthritis - since his 20's - various diagnoses ranging from ankylosing, psoriatic, some OA, some rheumatoid. My father has OA and at least one of my grandparents. Other conditions - asthma
• What treatments do you use? Codydramol mainly. - not allowed to use Ibuprofen anymore because of my asthma.
• Has you diet had to change? What other lifestyle impacts have there been? Mobility issues for example? I havent changed my diet (though I could lose a stone!) Lifestyle has been affected - I cant run or walk my dogs like I used to. I go to Dog Shows but have to get some one to handle my dogs. I cant kneel down so gardening can be a problem. I have difficulty handling some things as a result of problems with my hands.
• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?I've been told I need my knees replaced but my surgeon wants me to hang until I'm older because of the lifespan of a new joint and the need to limit future operations
• What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country? I would like to see more awareness raising work being done. People seem to think it's something old people get but obviously it can affect anyone including children. More support would be great.

OTHER POINTS - I've had several operations / procedures on my knees - the last one was brilliant - both knees were diagnosed as having the worst grade of arthritis - the surgeon polished the rough surfaces away on the joints ( knees done on separate occasions) and this has greatly reduced the amount of pain and has bought me some time before I will finally have to have the knees replaced. Apparently this is fairly innovative work but I would firmly recommend it.

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Deb I | 12/07/2007 12:01:00

I was diagnosed with Juvenile Arthritis when I was 8 years old when my hands started feeling stiff in the mornings.

As far as I'm aware there is no history of Juvenile Arthritis in my family. I'm now 26 and don't take any medication. I decided when I was around 17 that I would see how I coped with not taking medication (I hated taking it and I was on around 12-15 tablets a day) Ever since that day I have only taken anti-inflammatories about 5 times when I've had flare ups.

I have arthritis in most of my joints but my hands and knees are the worst. I have just recently started having back pains.

I've tried not to let this affect my life, I do everything I want to do, my boyfriend says he's never seen anyone look so cute cleaning their teeth! I don't do anything different diet wise.

I was offered lots of different treatments when I was younger, physiotherapy using hot wax was my favourite and it was a bonus that I was excused from games lessons! My hands are in a russian textbook on arthritis, my mum talked at lectures at universities about it and I was even asked to do a documentary but I'm too shy!

chrissy | 12/07/2007 13:20:00

I was firstly dagnosed with a sacral illiac joint problem in 1997 after catching a patient who was falling on the ward where I was a staff nurse. The diagnoses of degenerative disc disease was made some 2 years after this injury which did not heal. My mother suffers from arthritis also. Treatment has been by injection which was unsuccessful, t.e.n.s. machine,and corset which both help a little and analgesia. Because of asthma and stomach ulcers I am restricted in which painkillers I can take. At present these are Co-Codamol 30/500. I am limited in activities but try and keep positive. I hopefully have a long time to live yet as I am only 53 now. It`s painful but it`s not going to kill me. There are worse things.

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susan | 12/07/2007 13:27:00

i'm 62, been relatively active most of my life. have been diagnosed w/ OA in my knees[ age 56?], and one Rheum. doc thought my lt hip seemed to have precursor limited rom 5 yrs ago; rt hip bothers me far more than lt, tho.

i have had neck and low lumbar pain off and on since i was inmy mid 20's.

as i write,7:40am, i have rt neck pain, rt thoracic and rt hip pain; neck is worst. i often wake w/ all of it around 5am, and wiggle and squirm off and on to try to get somewhat more comfortable for a cpl of hrs.

i have 'stuff'in my prox thumb jts, off and on in my wrists, ankles and feet. periods of exacerbation are very painful, the jt swells, and when it subsides the jt stays larger, but is less painful. lately i have been feeling as if my metatarsal arches have dropped or something. i wear orthotics and usually sneakers or good shoes. they seem to make a difference. my knees and feet[ and on up?] are worse when i do w/out them[ they give shock absorption?].

i am not officially disabled[ tho tried that], but am thrust into painful episodes by different exertions [ also standing still or sitting too long; long drives are awful for me(body and mind; i get into a fog afterwards) and i have to drive 2000 miles rt every 3 months], and would find it difficult to keep regular work obligations.

i usually 'pass' for ok, which is mixed blessing. a friend has asked, how come you look like yr 46, but like 80 when you go to stand up? my mvnt eases as i continue in it if moderate. i am lucky; i can walk and do most things. lots of physical things i 'can do', tho, aggravate my jts later at night. i get nosebleeds from nsaids[ also too much flax, salmon and other natural anti inflammatories] , so use them cautiously.

i take glucosamine, less than i once did [500mg day now], and often flax seed oil and ground flax, pumpkin and sunflower seeds. i eat a lot of veggies, some nuts, and include some meat, mostly chicken and fish. i try to forgo cheese, dairy, white carbs and sugar. salt makes me fairly miserable.

exercise helps a lot, but too much makes it worse [a subtle line]. bodywork is great for me: chiro, acupuncture, accupressure, massage make a lot of difference. pdred magnesium seems to help tight msls/relieves pain. 'bad' oils esp from fast food places seem to encourage exacerbations/pain. fruits and veggies seem to help[pain wise].

i use trekking poles to walk. if my knees get a twinge, i can lean more on the poles until it lets up [the poles have springs and are suppose to take up to 50% of the impact off jts]; keeping going helps a lot, but not if i am walking in pain. so the poles let me keep going w/ out or less pain, and w/out aggravating the jts. they have been a miracle for me. they can aggravate my wirsts and thumb jts.

yoga, which i have always done, helps if i do it daily.

my younger bro and sister have upper back and neck 'stuff'. both have sometimes had low back problems as well. they are hard workers physically, and go to chiropractors regularly for relief. my mother had a couple of incidences of bursitis in her late 40's, but at 87 has no problems w/ jts. my father had some upper bk and neck complaints and went to a chiropractor. he died of heart disease in his late 60's.

i am relieved by endorphins, and usually willing to go the mile to get them. exercise, yoga, bodywork, smiling times w/ friends [ and my grandson!], talk therapy as well as sex reduce pain for a few hours. unfortunately chocolate, sweets and yummy food fit in that group as well.

my husband is a medical doc, and does not 'do well' w/ subtle pain problems. subtle in that my leg is not broken. i find most people feel the same way. the lack of understanding of arthritis, the isolation that comes w/ not feeling well or worse, i feel, makes the pain and problems worse.

i stay away from doctors, so no one has suggested arthroplasty. i had a 5-6 yr bout w/ the medical system regarding tx, diagnosis, and hoping for some disability consideration. i got physical therapy[ rarely helped], x-rayed, mri-ed, and prescriptions that i refused[ bleeding probs], but were thrust on me. i was told to take prozac[ physiatrist md], given a refillable script for viox[ rheumatologist at major hospital], and told to take 2 tylenol 4x day as long as i wanted [by the head of the ortho dept at a major hospital]. i was appalled.

i also have tinnitus and have lost some hearing; have bilateral hearing aids. i sense there's a connection.

i believe my attitude makes all the difference, and have read that those w/ painful jts are holding onto bitterness. i can see i have a problem there and much room for improvement. when i am happier, i am in less pain. of course the converse is likely true as well. i often can not see the forest for the trees in this stew.

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SueM | 12/07/2007 14:12:00

My name is Sue I am 50 years old - I was diagnoised with (Stills Disease) AKA Junior Rheumatoid Arthritis at the age of 17 months, I spent most of my childhood either in bed at home or in hospital (at the time it was the Evelyna Childrens Hospital in London) my parents were told to put me in a home when i was 2 as I'd never make a productive or useful adult - if I lived that long, They chose not to, they were also told I would not be able to have children due to the drugs I was on. I am now almost 51, have one 23 year old son - and worked for a good number of years as an adult - proving the doctors wrong on all points. Since my late 30's I have had osteoarthritis - mainly in my lower spine, hips knees and ankles - the only treatment I have so far been offered is Pain killers - I'm told I am too young or have too many joint problems to be eligiable for replacement surgery - although I am at the moment looking into having my right ankle fused as it's so painful and lets me down very often. Diet has never made any different to me, my life style has been changed a lot over the last 10 - 15 years, as walking is very painful, I don't go out much, but I do spend a lot of time on my computer. I have plenty of real life friends - who visit me, I am married and have been for the past 26 years, but now my husband has parkinson's so we are rather restricted in what we can do and where we can go - but we both get on with life as best as we can.

Paul Gifford | 12/07/2007 15:42:00

When young I played rugby a lot and inflicted damage to both knees, firstly when I was about 23 yr old.

This resulted in four cartlidge operations followed by a steady build over the years of chronic osteo-arthritis.

The left knee was particulraly affected and it reached the point in 2006 where it was impossibly restrictive and I went ahead with a knee replecement. This took three months to settle in and allow proper leg movement but that was largely due to pending spine operations. This was alleviated by having a spinal facets operation to relieve the pain and allow proper strengthening of the left knee muscles.

The right knee is also affected by osteo-arthritis, quite troublesome but has not reached a knee replacement stage yet!

I am now 81 yrs old mentally very active and involved in using my non-physical facilities in working in voluntary activities.

I am a survivor and have got quite used to bearing pain - 3 major cancer ops, three spine ops in the last year and escaped complete paralysis by around two weeks! many other lesser ops - total of 19 so far and am scheduled to have shoulder and elbow opps (arthritis) as soon as I can get around without my walking sticks - probably December time when recovery from last spine operation is scheduled to be complete.

I am 6ft 1in, eat light meals, not overweight, have an undiagnosed problem (they are still trying to find the answer - but not prostate!) which gets me up 4 to 6 times each night, but I sleep like a log between times!

Have a wonderful wife - 18 yrs younger than me - who despite her own very busy work life is the best possible carer I could hope for. I try to depend on this less and less after each op and now have reduced to just a little helop here and there.

Social life has been affected substantially and at the moment I really don't get inolved in social occasions where I have to make nonsense small talk and stand around for ages!

Flying is out too as the standing element in checking in is just too much.

However, despite all the above - life is geat and it is good to actually wake up each day and look forward to all the things scheduled to be done!!

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Ronnie W | 12/07/2007 16:13:00

I am 59 and happily retired. Two years ago I had an ache in my left groin area which I took to be a pulled muscle or at worst a hernia, and it was starting to hurt me whilst playing golf. A visit to the Doctor and an x-ray revealed, to my surprise, that I had mild osteo arthritis in both hips. The disappointing news I got from the Dr. was that it is incurable and that I should be crippled within 2 years and that I could then get a hip replacement or two. I was given painkillers, told that I wouldn't be able to play golf or continue going to the gym, and sent on my way.

I was amazed to discover, by comparing my right hip's performance to my left hip (the worse one) that I had lost a lot of the range of movement in my left hip without realising it. I did a lot of research on the Internet and gave up the painkillers after a month. Since then I have been taking Glucosamine and chondroitin and various other alleged miracle cures, but I believe that regular and sometimes painful exercise has been the only thing that has helped me.

With the help of my partner I set about trying to reclaim the lost movement in my left hip by twice daily sessions of forcing it gently to do the things that my right hip could do. I immediately stopped all exercises and activities that had an adverse impact on my hips, like running and carrying my golf clubs on my back, and I devised a set of exercises at the gym to maintain and enhance the movement in both my hips. After about 4 months I had regained the full range of movement in my left hip, albeit with a degree of discomfort, and 2 years down the road I have had no problems with my right hip.

I still play golf 3 or 4 times a week and attend the gym 3 times a week, and I no longer have to do any other exercises in between the gym visits. I am not in any pain at any time but I do get stiffness if I don't regularly move my hip position.

There is no history of arthritis for my parents, both still alive in their 80's, and I am the only one of 5 siblings to have this problem. I have no other health problems. I have given up all citrus fruits, which I used to eat a lot of, and I try to keep my weight down.

I have not been offered arthroplasty and I think that the information and support from the NHS is abysmal. When people are diagnosed with early stage arthritis they should be offered immediate treatment, either physical or surgical, to alleviate or remedy the problem and remove the need for hip replacement following a lengthy period of pain and immobility.

Membership of the Patients Voice is free and is open to anyone.

Paula DelaRosa | 12/07/2007 16:37:00

I belong to a wonderful, informative group on yahoo called R-A Factor. I live in Canton, Ohio and am 58 yrs old. I was dx'd with r/a in 1983 and have been on a host of arthritis meds since then. I know that when I was first diagnosed, the medications used were not as aggressive as they are now. I have the hand and feet deformities to prove it. I have been on so many medications that I can't even list them all. Now I am on prednisone, arava and enbrel. Enbrel has been a Godsend to me. I have felt so much better after starting it. Medications affect each person differently and it is kind of a hit or miss deal with each patient.

I felt that my r/a didn't really affect me badly until about 6 years ago. Now, just the simplest tasks give me problems. Add KLUTZ to my name! I have a hard time grasping onto things and always seem to be dropping something. The hand surgeon will not do surgery on my hands unless I am in pain 24/7 because the type of hand surgery I would need is not perfected. He said I would be coming back to him to put it back to what it was before the surgery. He also told me that if I can still grasp things with my thumb and forefinger I am doing okay. Really? So, looks like I will be klutzy for awhile.

I'm on disability for my r/a and have been so since 1999 after working for many years and enjoying it. Miss the work aspect of my life. Now I do work from home for a cancer support group called ChemoAngels.

The Enbrel has really helped me more than any of the others have in the past. I also take darvocet for any pain as needed.

I've been diagnosed with Raynauds, Sjogrens, Osteoporosis and have had dental problems associated with my r/a. Oh yes...all those things like to hang out together.

It's wonderful to belong to a Patients Voice group. It is really great to be able to read everyone's story and see how they are dealing with their disease.

There are good days and bad days but I give thanks for any day where I have to deal with less pain. Because I know everyday I will have some type of pain....from a little twinge to a full blown out flare.

Hugs to all.....Paula in Ohio

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Jane from CA | 12/07/2007 17:37:00

I was so happy to get the email that brought me here. When I was 25 I started getting arthritis. By the time I was 32 I was pretty much cripple wiht it half the time and the other half was no fun either. I couldn't sleep what with always having to straighten my arms and legs. I could no longer even do my needlework and since I'd gone back to college, writing notes was incredibly difficult. Walking to the class was just as hard. I couldn't drive any length of time nor sit in a theater. I got desperate because the medication my doctor gave me only served to eat a hole in my stomach, or nearly did.

The great news is that, in my desperation I starte researching until I found the answer. The problem is, most people don't want to hear it. But, nightshades are the cause of most arthritis. Of course, the degeneration of cartilage is something else and I have to take glucosamine for that and it does work. But, I quit eating nightshades all together 18 years ago and wouldn't dream of going back since. I tried eating mashed potatoes once just to see what would happen and totally regretted it. Also, eating in restaurants can be a challenge and you just can't trust them. There have been a few times I've suffered arthritis for 3 weeks just because I accidentally ate a night shade. It's just awful!

Nightshades are potatoes (sweet potatoes are just fine! They are truly a yam), tomatoes of all kinds, sweet peppers of all kinds (this includes chili, paprika, bell peppers, etc.) eggplant and cigarrettes. The latter is a different family of nightshades but I found that, when I went dancing in a cloud of smokers, I developed arthritis rather quickly.

How to do it and what happens No, it's not easy to give up all of these wonderful foods. However, once you are pain free, getting life debilatating pain is just not an option. It takes me about 3 weeks of not eating nightshades for the pain to go away. If I accidentally eat a nightshade it only takes about 2 to 3 hours for the pain to start and it hits a peak after about 6 days. From there it exsists for the total of three weeks and ebbs of for a couple of days and is gloriously gone again. Last Christmas I accidentally ate nightshades 2 times in one week. I was so upset! Just when I thought I had one week down and only 2 to go I was back to 3 weeks again. And, the pain got worse! I was so miserable.

Please give this a whole hearted try. I know it's difficult. I cried when I read ingedients of the many foods I loved only to find out that there were nightshades in them. This isn't just a 'flim-flam' idea. It's been studied and found in Europe and has been studied here in the United States by Dr. Childers of the university of Florida. He's put out a few books now (I'm in at one of them and will be in the next one, I found out) and goes around talking to doctors about his findings. Unfortunately, it's not well known yet. Good luck to you all!

Sincerely, R. Jane Gagner

Bridget | 12/07/2007 17:40:00

I have athritis in my elbow. It has been suggested that it was caused by a cortisone injection for tennis elbow in 1989 which was not correctly administered. As a result I do not have full mobility of my right arm and have had to have the ulna nerve relocated as I lost the use of some of my fingers. I am told that it is extraordinary that I have any elbow movement due to the amount of arthriris in the elbow joint but that there is not good enough technology to aim for an elbow replacement at this time. I would be interested to here if anyone else has had such a reaction from cortisone injections in the joint. The nerve relocation changed my life as while I still get pins and needles I can now hold a pen and a kitchen knife again which I could not before the op. The biggest problem that I had was convincing my GP that I needed to see a specialist as I had some grip and he didn't know the tests for a trapped ulna nerve. Once the nerve is trapped speed is of the essence as the longer it is left the greater the long term damage and the less chance there is of the nerve regenerating. I took the option to have the op done privately at a cost of £1200. 2 months later I was sent a letter from the NHS saying that I was on the waiting list to be on a waiting list to see a consultant. Had I waited I would probably now require a disability allowance as my nerve might well have been irrepairable damaged in that time.

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Wayney | 12/07/2007 18:45:00

• Firstly, what kind of arthritis do you have? When was it diagnosed and at what age were you then?

I was dx'ed with JRA in 1984 at the age of 7. Since then OA, osteoporosis, facet joint arthritis, fibromyalgia, IBS and Sjogren's Syndrome have been added as well as hypertension and stomach problems due to my meds.

• What is the history of arthritis in your family? Do you suffer from any other conditions?

In my family, there was little discussion of any kind of arthitis but looking at pictures, all of my grandparents and great-grandparents had either OA or RA judging by the hand damage they had. Many of them referred to having "rheumatism". My mom has polymyositis, OA and RA (or MCTD/UCTD depending on the doc you ask) as well as hypertension, and hyperthyroidism. I have an aunt with celiac disease which, while not rheumatic is an AI disease. I also have a niece with Crohns.

• What treatments do you use?

I'm currently on: Arava, Folic Acid, Forteo, Robaxin, Neurontin, Lortab, Remicade, Zanaflex, Lopressor, Benicar/HCT, Prednisone, Provigil and Nexium. I also have periodic IM Decadron shots, intra-articular shots of some form of corticosteroid and a local pain reliever as well as nerve blocks and radio frequency ablation of three levels of lumbar nerves bilaterally.

• Has your diet had to change? What other lifestyle impacts have there been? Mobility issues for example?

I have made many life and mobility changes having grown up with RA. You either adapt or you fail to be able to function. I cannot walk long distances, stand long or climb stairs. Sitting still for more than 10 minutes is painful. I take medications on a set time schedule so I am almost always keeping close track of the time or I pay the price. I have to cautiously weigh the benefits of doing anything against the price I'll pay after. I recently went to dinner with family and was only out about 5 hours. Took meds with me so I did not get off schedule. And still, I was virtually useless for the next 2 or 3 days. Even doctor appointments cause that much fatigue and pain. I do however not change my diet because I feel I've made enough other changes. And I tried the elimination of things that in some people affect their RA as a child. Didn't make any kind of difference for me, so I will eat what I want when I want.

• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?

It has not yet been offered but has been discussed as a future possibility.

• What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country?

Information is easily available for arthritis. It is all in getting the drive to find it and knowing what sources are reputable. Knowing who is trustworthy and who isn't. I take any information a doctor gives me and double check it with other sources. I've found that I've been misinformed by more than one doctor before. Support in the US for arthritis is, aside from the internet, lacking very much. Some national groups claim they are there to support patients but they promote their agenda and not that of the patients.

I am co-owner of an online support group called ra-factor and Editor of a newsletter devoted to Autoimmune & Chronic Diseases as well as being a moderator of an international group called 4RATalk.com. In addition to that, I have a wonderful husband and son along with three fur kids. I have other hobbies but because I'd rather help spread the word about RA etc I don't devote too much time or energy to them.

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Tina | 12/07/2007 18:51:00

After reading some of the comments, I feel very lucky. My arthritis was first diagnosed only about a year ago. I'm now 63.

I have mostly good days. The only bad ones come when I've put pressure on my wrists or fingers. I think I'm also starting to have problems with my knees and an ankle. I used to be an air stewardess, and the years of walking miles in a rarified atmosphere may have contributed to the arthritis.

My grandmother had very bad arthritis which interefered with her life, and I appear to have inherited the problem. I'm going to allow it to interfere as little as possible with my life.

I take glucosamine daily, and normally lead a good life.

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whyme | 12/07/2007 19:39:00

I have arthritus in my wrists which was diagnosed when I was 18. I was diagnosed with oesteo arthritus in my ankle at the age of 43 and arthritus in my shoulder in 2004. I have arthritus in my neck following a car accident in 1984.

I have been under investigation for rheumatoid arthritus for the last two years.

Arthritus runs in my mothers side and has affected all the female members. However, some of the males are now being affected as well.

I have a heart murmur, atrial fibrillation, atriel flutter, palpitations, asthma, IBS, hearing impairment, tinitus, dry eyes, inflamation of the eyelids, inflamed optic nerve, inflammed chest muscle, restless legs syndrome, lymphodemia and also burning, pins & needles, cramps and severe pain in the ankles.

I have to use pain killers: paracetamol, co-dydramol. I also have supports for my feet in my shoes. I am unable to take inflamatories due to the asthma.

My diet has had to change for the IBS not for the arthritus.

My lifestyle has changed considerably over the last 3 years. I am now severely mobility impaired. This has had a huge impact on my job, my lifestyle has altered so much. However, having now been awarded the higher rate mobility DLA has meant that I have a blue badge which means I can at least go some way to getting to shops, even if I spend more in supermarkets, rather than shopping around like I used to. In addition, an example is where I had to go to the local walk-in centre. This for a normal able bodied person is a 5 minute walk to the bus stop and a 10 minute walk from the bus station.

We left at 12.50 to catch the bus, watched 2 buses arrive but I could not run for them. Had to wait 15 minutes for the next bus at 1.27. We had a 10 minute bus ride and we arrived at the walk in at 2.10. It had taken 1 hour 20 minutes - that is the equivelant time of my daughters walking to their school 3 miles away!!!

I have problems with my neck getting stuck - for example, in hospital the other day, I woke up and had slipped off the pillows down the bed. The nurses had to tilt my neck up twice and put a pillow under, then had to tilt my feet so that I could move them. Then they had to help me move my arms and finally help me sit up. It was very traumatic for me because normally my husband does this for me.

I have never had or been offered Arthroplasty?

There is widespread information about arthritus. The only problem is that it takes so long to get matters sorted out. GP's don't tend to refer you for years, so you suffer tremendously before any action is taken.

I would like GP's to be able to refer patients more quickly for assistance and for an assessment of needs - currently, this is reserved for elderly patients. I am only 47 and have had severe problems since I was 24 and yet was only referred to occupational therapy for my shoulder following an injury for which I waited 6 months for an appointment. My first appointment was one year after the accident!

I put in for a social service assessment in 2005, I am still waiting.

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Christine Scott | 12/07/2007 23:03:00

I was diagnosed with Osteo Arthritis when I was 52. It gradually got worse until I was having difficulty walking as I had it in my hips and lower back. When I was 59 I had a total hip replacement of my right hip and 2 years later I had the other one done. Up until having the operations I was given a Morphine Patch to relieve the pain because nothing else took the pain away. I still cant walk for any distance . That is because of Arthritis in my lower spine. I have been told that the bottom 3 discs are damaged. I now take Dihydracodeine for pain. I get a Mobility Allowance so I can use my car to go out which I am very grateful.

Susie | 13/07/2007 03:39:00

Firstly what kind of arthritis do you have?RA, Osteoarthritis, Sjogren Syndrome, Raynauds, Scleroderma, and neuropathy in my feet and hands. I also was diagnosed with PVD, and DVT last year. The first arthrtis was detected when I was 38 years old. When was it diagnosed and at what age were you then?
• What is the history of arthritis in your family?My father suffered from Gout. No other family member has arthristis, I have two cousins on my MOther's side of the family with Lupus. Do you suffer from any other conditions?
• What treatments do you use?14 prescription medications
• Has you diet had to change? Yes, no more spicey foods, I eat mostly softer foods, have trouble swallowing, choke all the time.What other lifestyle impacts have there been? Mobility issues for example? I have been declared disabled just two weeks, because of chronic skin ulcers, pain and suffering in my joints, foot pain and my vascular problems from scleroderma
• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?
• What do you think of the information available about arthritis? I feel there's loads of information about arthritis, here on the internet, and many books on autoimmune diseases. How would you like to see support for the condition improved in your country? I feel we all need to stand up to the drug companies, and have a more even cost for all people using arthritis therapies for pain. There's a wide range of problems with this issue and it needs to be corrected.
I have been at John's Hopkins for the past nine years, and go to one of the top notch scleroderma centers. So many therapies have been used on me to reverse the damage. I have suffered but many more people are worse off than me. I did have a partial amputation last year and did have two surgeries on my hands called digital sympathectomies, which saved two of my fingers from being amputated.

Three outstanding doctor's that have helped me, Dr. Frederick Wigley JohnsHOpkins Scleroderma center, Dr. Michael McClinton from Union Memorial Hospital one of the nations leading Hand and Heart Hospitals. And Dr. John Campbell, that helped save my toe's from being amputated he is now located at Mercy Hospital in Baltimore along with the other two doctor's.

You can find support here online for arthritis, it's important to find a good positive support system and stay away from stress.

Thanks very much in advance for your help. Please feel free to check back on the blog to see what others have said and perhaps contribute further thoughts.

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Carol | 13/07/2007 09:46:00

I have had OA since 1992 in my spine,shoulder,elbow,left hip,knees,hands & feet i have tried physio,acupuncture & light exercise all recommended by my GP.

I finely got a appointment to see a OS at my local hospital after 2 years i had the usual X rays, CT scan etc and he informed that i was to young for any surgical procedures as i was only 38 and i would have to manage my pain by taking medication & keeping active as possible.

My Gran and my Mum both suffered from OA and my Brother has started with it also, i have tried all the meds going and i have been taking Kapake for the last past 4 years i also take Glucosimine and Omega 3,6,9 and watch my diet i also have a dog which i walk about 4 times a day (at my pace not hers).

i find that the weather effects my OA more so after all the wet weather we have had. i also have to use a waking stick now which i find more a hindrince. I am due back to see my OS in 2 weeks, my mobility has got much worse over the past 6 months and i have fallen a few times so i will wait to see what he has to say.

Hopefully he will do something about my Hip & Knees as i am finding the pain unbarable now.

 

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Anne Roy | 13/07/2007 14:31:00

• Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?

Good question; although I became symptomatic at 28, and was told I had "wear and tear" in the various joints affected at that time, I was never referred to a rheumatologist by my GP. It wasn't until I was 44 that I finally achieved a proper diagnosis of rheumatoid arthritis, after insisting on a referral on the advice of an occupational therapist. By this time I had been in a wheelchair for 10 years, and the only medication I had had was naproxen (anti-inflammatory) and ever increasing strengths and doses of various painkillers. It didn't help that the rhematologist that I saw was a useless tosser (isn't hindsight in medical knowledge wonderful? ) who did very little to help me, and gave nothing whatsoever in the way of an explanation of what I was experiencing. How do I know this? Because the useless tosser retired four months ago, and the new rheumy is like a breath of fresh air! My affected joints are as follows, jaw, neck, shoulders, elbows, wrists, hands, spine, hips, knees, ankles and toes. Full house!

• What is the history of arthritis in your family? Do you suffer from any other conditions?

As to the first question, I have no idea, as I was adopted. However, my daughter, who is now 33, is showing signs of onset of RA in her hands and hips.

As to the second, I have to date been diagnosed as having RA, fibromyalgia, diverticulosis, hypertension, high cholesterol, colitis and various GI problems and skin conditions which are probably as a result of the various medications I've taken over the past 22 years (I'm now 50), or so I'm told.

• What treatments do you use?

At present, methotrexate, folic acid, naproxen, sulphasalazine, amitriptylene, bendroflumethiazide, simvastatin, losartan, tramadol, codydramol, dihydrocodeine, movicol, lactulose, omeprazole and loratidine. Phew! I also take omega 3, glucosamine, evening primrose oil and calcium supplements.

However, I've been told that I'll have to stop the naproxen as they're probably doing more harm than good with the GI problems. Fine, in principle, but I'm quite simply non-funtional without them, and as I have a 91 year-old mother who's had two major strokes to care for, giving up anything that reduces my already pathetic mobility is a luxury I can't afford.

I also use a wax bath for my hands, which does help, and a TENS unit for pain relief, although as that becomess less effective over time, I have spells where I don't use it for a few months. The most effective methods of pain relief I have tried have been acupuncture and cannabis, either separately or together. Unfortunately, neither are easily available in my area.

• Has you diet had to change?

Apart from going low-fat and high fibre (which I'd been doing since I turned 30 anyway), not really. I've tried various diets that are supposed to help, and avoiding so-called "trigger" foods, but I honestly found nothing either way that made any difference, so I simply maintain a healthy diet as far as I can. However, given my severely restricted mobility and the poor state of my hands, this is becoming increasingly difficult, and I am having to rely more on prepared foods, which leaves one less choice, and a lot less money.

What other lifestyle impacts have there been? Mobility issues for example?

Bloody humungous! I rapidly lost mobility in my weight bearing joints after the age of 30, and have been using wheelchairs since I was 34. Of course I was forcibly retired from my job, and have had to manage on a mimimal income. For the last 12 years I have had to use powered wheelchairs, as I can no longer propel a manual chair, due to the deterioration in my hands/wrists/shoulders. However, none of this stops me from having at least some social life, and my time is always fully occuopied at home. I breed computers, read avidly, design and make clothes/knitwear and use the 'Net to bring the world to me.

• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?

No, I have not. My LHA's policy is not to consider any joint replacements until the age of fifty. Great, I thought as I hit my fiftieth in January, now I can get mended! Except that I've now been told that the joint damage in the relevant joints is now too advanced to make surgery viable. I have had a wrist fusion, a knee fusion, and various synovectomies and carpal tunnel decompressions in my hads and wrists.

• What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country?

In my particular case, information has been distincly lacking. I feel I have been poorly treated by my GP and the first rheumatologist I saw, and was given no information at all. The new rheumatologist has reviewd all my previous treatments, and has told me that in his opinion, some of the treatment I received, particularly in the years before my RA disgnosis, was not only inappropriate, but probably actively aggravated my condition(s). Because I had been given no information at all, I couldn't tell what I should have been doing. I have found more info online than anywhere else, and I feel that *ALL* patients should be given as much info as possible by their GPs, consultants or whoever, and not have to trawl for it. I know that these people are busy, but informing the patient should be a necessary and compulsory part of their profession. My new rheumatologist has a rheumatology nurse, an experienced and competent person who is accessible by phone at any reasonable time. This alone has made a huge difference to me, as I feel I can ask her questions that I might forget or be time constrained to ask my rheumatologist. Having someone available who has the right knowledge makes things a lot easier.

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Caroline | 13/07/2007 18:01:00

Hi i'm caroline, i was diagnosed with Osteo in my right toe when i was about 14, caused by sports injuries (i used to play hockey) my foot was manipulated and i was given a steriod injection. All was fine for a few years, but i couldn't wear high heels and i still cant' now, i am overweight but this has never affected nor loosing it made it any better, i cut out dairy in my diet, but nothing seems to make it better or worse, although i find it's worse in the winter when i'm cold, but i usually just get on with it, i've just started the Cambridge diet, and lost 21lb in 3 weeks, so i hope to loose about 8 stone, so then i'll be able to see if that helps. but really i just get on with it!

Angela JK | 13/07/2007 18:18:00

I was diagnosed with Sero-negative Rheumatoid Arthritis at 18 (I am now 49) I was diagnosed after a synovial biopsy which went wrong and left me unable to move my left leg. I was given high doses of asprin and went to a rehabilitation centre where I learnt to walk again, I was then given gold injections which I was alergic to and spent another 2 weeks in hospital.

Over the last 30 years I have learnt to do what I know I can and no more, But I've been determined the RA wouldnt rule my life, and I'm determined not to give in to the pain which I think has helped because I can manage to keep moving.

When I was expecting my son all my symptoms vanished but once he was born they came back with a vengence and I needed steroid injections in my knees so that I could walk. I've always wondered why more research hasnt been done into this phenomenon as I have heard other women say they experienced the same thing.

For many years I was taking a variety of pain killers and for about 5 years was taking Brufen Retard regularly, I now manage the pain with glucosamin and chondroitin with msm and vit c, I also take omega 3 and rarely have to resort to prescription medicines for pain.

I try to keep to a fairly healthy diet but know I should lose a little weight. I try to avoid stress where I can but its hard especially as I'm a born worrier!!

Sometimes I find that if the air pressure falls very low or goes very high it effects my pain (and also gives me bad migraines) but otherwise cannot find reasons why I relapse. I know I'm lucky though because I can live an almost normal life.

I dont know what arthropasty is and I have found that as Drs cant see anything wrong with me, other than slightly swollen knuckles and when I relapse, swollen knees, nothing major has shown up on xrays and nothing shows in my blood tests, so they really dont offer any help other than pain killers so I have given up asking.

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Peter Rouse | 14/07/2007 21:18:00

Ankylosing Spondilitis. I am now 68, have been diagnosed with AS for some 43 years, but was affected with it from about the age of 14.

I had sever pains in legs and back for about three weeks, and the doc said it was lumbago.

Then I had severe back pains during National Service, and they prescribed lumber pains, treated with infra red, ie heat lamps.

After that for several years had sever pains in and around the front chest area, felt like I was being beaten. Finally moved home due to work and new doc actually read my notes, and diagnosed AS. Put under care of Stoke Mandeville, and was prescribed naprosyn, worked wonders. Over the years the disease has caused me much discomfort, but I am proud to say, not time off work due to it, although some days just getting out of bed was painful enough. AS affects my lower spine , and is working up to my neck. I am now suffering from Osteo Arthritis in both hips and knees, and am looking forward to a year of replacement part surgery, first hip goes in next week.

Advice to others , you are not alone. In the UK there is NAAS, and ther are many locala AS groups.If you register with the NAAS, in London, they will tell you how to get in touch with a local support group. or contact me.

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Alma Kitsberg | 15/07/2007 15:57:00

I have spondylitis and I have had this for several years now, I was a secretary all my working life so the condition got worsened by this doing typing a lot of the day, and of course posture never helped the situation.

I do not work now but the damage has already been done, I am in pain every day. I cannot lift anything too heavy or sometimes I just drop things.

I also have arthritis in my hips and this causes pain when standing for short periods of time.

My mother had osteo arthritis in her knees and also she suffered with arthritis in her hips but never had the hip replacement operation she just managed.

As well as arthritis i have diabetes and have also suffered a mild heart attack i have a blocked artery but that wont be attended to because apparently in my condition it would be more dangerous than to just leave it and have beta blockers and other mediation to control the situation.

The arthritis in hips and my spondylitis does cause mobility problems with most day to day functions including toileting.

i cannot take voltarol for the pain since my heart attack and the pain killers prescribed have no effect like voltorol so just manage with the pain and sometimes it is unbearable.

Information is not bad regarding arthritis here in England, but unfortunately it is a generic disease and cannot be cured only maintained and not a condition that will get better with age only worse.

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doa42h | 16/07/2007 02:23:00

• Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?

I was diagnosed with RA in January 2007 at age 51. I noticed first symptoms in Nov '06.

• What is the history of arthritis in your family? Do you suffer from any other conditions?

No history. No other conditions at that time.

• What treatments do you use?

Rheumatologist recommended standard treatment with NSAIDs and MTX. I declined, trying other treatment forms first.

• Has you diet had to change?

I changed my diet slightly, eat more fruits and veggies, less meat.

What other lifestyle impacts have there been? Mobility issues for example?

Could barely walk, get up from bed and chairs unless heavily drugged with Ibuprofen and Aspirin (> 20 tablets/day)

• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?

No.

• What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country?

Internet is a great resource. Please check out the ATA website: http://www.arthritistrust.org/

According to my rheumatologist, I had "severe RA". I had all the standard symptoms and the onset was rather quickly (< 3 weeks). I could barely move unless I took insane doses of Ibu and Aspirin. Yet, after reading a lot of comments on various Blogs and Groups, I declined the standard treatments because they only manage / slow down the disease and don't cure it.

When I found the ATA website I was stunned about the success rate of the treatment according to Drs. Wyburn-Mason. No MD here in the US, however, was willing to try it on me. With the symptoms getting worse, in May I finally decided to start the treatment plan on my own, w/o medical supervision. I got metronidazole (Flagyl) from an internet pharmacy. The results are truly miraculous: after 4 weeks the inflamation in my joints was completely gone -with it the fatigue and most of the pain. I continue to improve and can do most activities as before. In addition to Flagyl (which I took only for 6 weeks) I continue to take Boron (check Dr. Newnham article on ATA), Glucosamine, and Immunocal. I believe the Immunocal (a nutritional supplement to strengthen the immune system) prevented me from getting severe Herxheimer reaction. So far, all is well.

I'm not a MD but have a PhD in Physics. After all I read, I don't believe RA is an autoimmune system failure but rather caused by an infection, which the body is not able to withstand, probably because of mal-nutrition.

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Chris M | 16/07/2007 14:38:00

Hi I've suffered with osteoarthritis for about 15 years. I had an accident and cracked my kneecap 15yrs ago and after two failed arthroscopies, which made it worse developed arthritis in the knee. After that it spread to my other knee both hips and neck, eventually my hands, wrists, feet and ankle were affected and I became very ill. I then saw a rheumatologist who wondered if the onset in my hands and feet might be the start of RH but did not show up on blood tests so assume it's just more OA. He also diagnosed hypermobility in my knees which has added to the problem.

I have disc prolapses in my back which have damaged a nerve in my left leg so that I now can only drive an automatic car. I am resisting having surgery on my back until I can't manage the condition any more. I suffer with sciatic pain in both legs on most days and together with the OA my mobility is very restricted, I need crutches to walk and thank goodness for the Blue Badge scheme. I also have Irritable Bowel Syndrome and Raynauds disease so feel the cold very easily.

I take NSAID - Etodolac which works well for me together with DMARD Hydroxychloroquine, Tramadol and Amitryptaline at night. The ammount of Tramadol I take varies and I try to take as little as possible so that when I have acute episodes I have something to fall back on.

One major problem I have is extreme fatigue caused by the culmination of all the pain I have and think this is the hardest thing to deal with or explain to someone the bone crushing exhaustion I suffer. I had to give up work four years ago at age 49yrs and once I'd got through the shock of losing a successful career I began to realise that I could get some quality of life back. My body likes leisurely days where I can get up later than when I worked, take longer to do things and go to bed early!

I do some voluntary work, fundraising for Marie Curie Cancer Care, which I can fit in around how well I am feeling.

I have just completed a Pain Managment Course using meditation practice as a tool to manage responses to pain and can't recommend it too highly. If you live within reach of Manchester it's worth considering it. For information look at their Website www.breathworks-mindfulness.co.uk

I use the web for information and also get the magazine Arthritis News produced by www.arthritiscare.org.uk which has some useful info in it and www.arc.org.uk is another useful website to look at.

There is no family history of arthritis but I have had a number of accidents over the years which I feel might have contributed to me having it.

Mark Morley | 16/07/2007 19:51:00

1: I am 51 years old and was first diagnosed with Arthritis when I was 27 but was not told what type. I had knee and hip pain since I was fourteen and shoulder problems when I was twenty. In 1995 at the age of forty I had a diagnoses of Osteoarthritis and Degenerative Joint Disease and had Arthoplasty surgeries on both of my shoulders to reform the joints and reduce the pain. In 1999 I had infectious Arthritis and was shortly after that diagnosed with Ankylosig Spondylitis and Sacroilitis. As a result of the AS my ribs fused together and I developed Restrictive Lung Disease and Severe Asthma. In 2001 I was also diagnosed with Seronegative Rheumatoid Arthritis,

2: No other family members have Arthritis of any type except maybe my grand mother on my mothers side but it was minor. Although my Father and sister as well as my self have Celiac Disease. My Father also has the severe Asthma. I also have Neuropathy, Recuring Iritis, Chronic Bronchitis, Sinuitis, and recuring upper respritory infections.

3: For the Arthritis Treatment I use Sulfasalazine, Sulindac and Prednisone. I was on several different perscription pain killer but I did not like the way that they made me feel so I use Tylenol to aid in pain management and live with the pain that I have. I was also involved with a medical trial that I was receiving injections of a drug similair to Remicade that helped me greatly. The trial has ended and we have a petietion in to the drug company to find out exactly what I was on so I can continue on with it. I have had surgeries of both of my shoulders to reform the joints and have had years of physical therapy.

4: My Diet has not change due to the Arthritis but being diagnosed with the Celiac Disease in 1995 changed my diet extreemly because of the removal of all gluten ladden foods. My life style was completely changed by the Arthritis. My ability to work started to be affected in 1985 and gradually it became worse. I lost the use of my left arm in 1994 due to the arthritis and severity of the pain. This was helped in 1995 when I had the shoulder surgeries. After the infection in 1999 I had a real difficult time working and would become greatly fatiqued after only one hour of work. By 2002 the fatique was so severe that a half hour of work would cause ne to have to rest for five days before I could do anything again. I was self employed and had to close my business and applied for disabilty. It took four years to win my disability case and another year before I started receiving the benefits. My Social Life is now none existent, I can not go to church because the pain of setting for one hour in church pews is to great to handle. My wife was very supportive but the financial strain and my health issues caused a lot of problems. My friends stopped coming over and calling because they wanted to be with someone they could do things with.

5: I had Arthroplasty for both of my shoulders. They reshaped the joints, removed spures, fixed torn muscles and rotator cuffs. This helped considerable with the pain in my shoulders but I still have limited use of my left arm.

6: There is a lot of information available about Arthritis. But sometimes it is hard to find exactly what you are looking for. Arthritis.org has been a great help but even there it is hard to find good information. The thing that I feel is the most inadiquate is the ability to find good doctors that are willing to take Medicare or medicaid programs.

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trisha | 16/07/2007 20:53:00

I was in considerable pain in both my feet and arms before I finally found out I had Rhumatoid Arthritis at first it was suppected I was suffering from gout and was advised to take parasetamol 4 times a day as this had very little effect on my condition I was referred to hospital for blood tests and examination I had to wait 3 weeks before a final answer was given as to my condition I was 45yrs.old and was just in the throws of the Menapause wish I was already taking HRT so then I was informed I would also have another tablet to take daily I can't remember what the first 1 was called only that it was withdrawn because it could cause heart attacks and other complications, I now take Meloxicam daily but because I am allergic to it I also need to take Cetirizine an anti inflammitory and occassionly I need Co-Codimol for pain when it strkes as I get older I am finding that I have a lot of trouble with my feet although I consider myself fortunate that It's only now after having Rhumatoid Arthritis for 17yr. that I am feeling the same effects as I did when first diagnosed

carol | 17/07/2007 09:01:00

my name is carol,iam 53 years old and have osteoarthritis. Ihave have had treatment on and off since i was in my twenties, but was only diagnosed in the last 8 years.I have tried various anti inflamatories and am currently on etodalac and co codamol,i am having quite a lot of pain and stiffnesss in spite of these,it does seem worse when the weather is damp and rainy. I am finding it difficult to be on my feet for long periods of time as my feet feel as though they might explode and feel very hot,my back aches a lot when i am standing and i also have lots of problems with my hands , my fingers are lumpy and sore and my grip is poor. I often feel worn out and can fall asleep for hours, my house work does not get done and at present i am finding it hard to walk my dogs; i have also suffered from anxiety and depression since i had a breakdown when i was 39,i am tring to stop taking anti depressants as since reducing them with a view to changing to a different type i have actually felt better so am trying to cope without to see how i go on, i also have an under active thyroid and feel that all these things make me feel worse as the lethargy and pain make me feel depressed.

My mother suffered with osteo arthritis and had her right knee replaced and wished she had had the left one done as as well,but could not pluck up the courage after the first replacement. she was treated for most of her arthritic days with prednislone and could not function without it.

my grandmother on my mums side also suffered from osteo arthritis but i do not know about her treatments..

On the whole it is difficult to decide whether my , breakddown and under active thyroid and the menopause all together with the osteo arthritis, just all make each other feel worse, i know some days are a real struggle to get through. but good friends and my christian faith keep me going.

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casper | 19/07/2007 00:33:00

Firstly what kind of arthritis do you have? When was it diagnosed and at what age were you then?

I was diagnosed with Juvenile idiopathic arthritis at the age of 3 (had been showing symptoms of the disease from about 12 months of age it's just no one had really heard of the disease). The JIA then progressed to what was thought to be Ankylosing Spondylitis due to me being HLA-B27 and ANA positive however tests done last week reveal that it is more likely to be Systemic Lupus Erythematosus.

• What is the history of arthritis in your family? Do you suffer from any other conditions?

My cousin had trouble with both her knees and both her wrists, all of which i think they operated on. When she entered her teenage years the problem seemed to go away we think she may have had a mild form of JIA and it went into remission. She hasn't had a problem since.

i also have tendonitis, osteoporosis (as a result of long-term oral steroid use) and scoliosis.

• What treatments do you use?

The rheumatologist has be on Enbrel, Actonel, Folic acid, methotrexate, mobic and brufen when necessary.

• Has you diet had to change?

I am now seeing a naturopath who has helped me heaps. Over the past 20 years of having this disease i have discovered that the nightshade group of vegetables cause me to flare so i steer clear of them wherever possible. I avoid chocolate and sugary foods as well as they seem to have the same result. I think sensible eating is the key to improving any health condition.

What other lifestyle impacts have there been? Mobility issues for example?

Prior to receiving Enbrel i was barely able to walk. I had to work as the medications were expensive and i wanted a sense of my own independence but coming home in so much pain at night used to make me wonder if it was all worth it. When i was younger i was on crutches for 3 years as the pain in my left leg was too much for me to weight bear. After 3 years my right leg couldn't take the strain anymore and i went into a wheelchair for about a year until i found a rheumatologist who took the time to help me get better. I am very greatful to him and his fantastic team!

• Have you ever had or been offered Arthroplasty? Could you tell us what was involved?

No.

• What do you think of the information available about arthritis? How would you like to see support for the condition improved in your country?

I would like to see the Arthritis Foundation's website improved. There appears to be very little information available to people affected by their different forms of arthritis. I would like to know of updates on treatments, medications etc. I have worked with people with other diseases and the websites available for them are filled with relevant information. It would be great to see that on the Arthritis website to. Considering the number of children who are affected by JIA in Australia and all over the world it would be great if there was more public awareness made towards the condition.

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hillybee | 19/07/2007 21:02:00

Hi, both my parents had both hips replaced startingin their 60's, due to osteoparthritis. I seem to have inherited the trait and as I had an active sports life I needed the first replaced when I was 58. i had a resurfacing and it's worked very well. Two years down the line I have very good mobility and no pain. I'm trying to keep the other hip mobile with the help of cod liver oil, high strength glucosamine and MSN. I left the first too long before going on the operation waiting list and was limping badly before I had the op so it took a while to get the leg working normally, but I was back at work at 6 weeks.

elbev | 20/07/2007 20:18:00

Now 47 years old - had a fall in August 2002 which l think caused L4/5 disc problem in Oct that year. Was told I would have nerve damage, and it has affected my feet and right leg especially. Developed pain in my right hip and ankle and x-rays in 2006 confirmed degenerative OA. My mother has OA in her knees and my late father (died at 46 yrs cardiac related) was diagnosed with OA in his early 40's. I believe it possible his father had also had OA (died 61 cardiac related). I take Arthrotec with some success as prescribed, able to keep it usually to one a day with two tablets on a bad day. I keep painkillers for really bad pain and find Cod Liver Oil and Glucosamine helps. I havent really changed my diet though have limited coffee to one cup a day usually (find percolated coffee makes my pains worse!) and try to drink more water. Father was a late onset diabetic and I have glucose intolerance (not yet a diabetic and I hope to hold it at bay). I would suffer from sinusitis, hiatus hernia and mild asthma - other than that hopefully relatively healthy. I do try to keep moving and keep a positive mental attitude. I havent really looked at any websites regarding arthritis (though I may have to soon due to husband being recently diagnosed, with blood tests, as RA).

Peter K | 21/07/2007 10:53:00

Greetings,

My arthritis is not to bad, afecting really my back, legs, ankles, knees and wrists/hands, the pain varies, but I have got other problems which are more life changing, I manage best I can with the medication that I use but when I am taking over 30 tablets a day it is worrying!

I also have degenerative back disease, (lumber canal stenosis, scoliosis and spondylosis) ME/CFS, Multiple chemical sensivity, allergies, Hypothyroidism, bladder problems, IBS, CTS etc. I don't want any more thanks ;-)

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Jay | 22/07/2007 12:15:00

I am 52 going on 80, I have been diagnosed with different types of arthritus, so confusing. I have spondylosis in my neck and spine, arthritus in my feet, ankles, hands and knees etc, and as for my hips,dont get me started. No answers yet! I am having concerns regarding treatment as I suffer with severe chest problems and the medicines conflict with my asthma, so for now I'm on Tramadol and top up with co-codamol pain relief. My Doctor has supposedly written to a consultant regarding my latest problems which was 3 weeks ago and I'm still waiting to hear. For now my granddaughter has been trying to treat me (she's only 5!). The pain in my hands stops me from doing things to the point I cant hold a cup of tea. The slightest knock or jolt sends me into a fit as the pain is so intense - tearful! My granddaughter has been a diamond, helping me with the washing up, cleaning etc. I have a heat glove on at the moment, at first it helped to ease the pain. Then I got a free sample of glucosamine patches from a health shop which I cut to size and they are superb, it really did help take the swelling down and ease the pain. Not entirely taken it away, makes it more manageable. Once I stopped using it it all came back. I have used Movelat cream but to no real effect. At the moment I am just using Tramadol + other pain relief it helps to a point but never fulling taking the pain away. I have had Amiltriptilyine in the past but it turned me into a zombie, at first it was great, when I got up in the morning I could actually move without pain. Ten days later I didn't know who I was or anything but the Doctor wanted to increase the dose. Couldn't cope with that. Other meds he put me on caused an instant Asthma attack. I feel I'm in a catch 22 situation. I also have P.E. & emphysema (recently diagnosed) this causes the Doctors another headache, then the books come out to research other medicines. As I'm on wafarin it makes it difficult as there are contra-indications mixing certain meds. Hopefully a resolution will come soon as I can't stand the pain much longer. I have very little relief, even on the Tramadol. So far I am a constant visitor to the hospital for one test after another. 6 weeks ago I had an ear infection, it went to both ears, no relief after 4 different types of ear drops, I was then sent to see the E.N.T at A&E he held my jaw and told me to wiggle it, it was like fireworks going off in my head, now another consultant at the maxio facial to visit, reckons the arthritus is now in my jaw. Great! I now have to be fitted with a mouth guard. What with the support gloves, heat pads, and now a mouth shield it may look like I'm going into a boxing ring! Will let you know.

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Cheryl | 22/07/2007 13:03:00

I am 20, and was diagnosed with Rheumatoid Arthritis in Feb 2007.

Started all of a sudden and progressed so much that I couldn't walk or get out of bed. I was admitted to hospital for a week and was given a steroid drip for the swelling.I was then sent home with methotrexate tablets which have been increased now to 15mg and have slowly been coming off of prednisolone tablets to just one a day.

There is no history of arthritis in my family at all and the specialists don't think that it was brought on by any infections etc. Although I did have a stomach bug the year before which I personally feel is what brought it on as I was very ill in hospital with it and had to have drips then, too.

At the moment i'm feeling almost normal, in the sense that I can do almost everything I used to. Some days are a little painful if i've push myself too hard the day before. I did change my diet at the beginning, but eat pretty much whatever I want now. Although I do try to eat more oily fish, fruit and veg, and I avoid caffine.

Personally, I feel happy with the information I can get on Arthritis as I make use of forums and have joined the NRAS. Although I do feel that non-sufferer's awareness of arthritis (especially in young people) is not enough.

Jill B | 23/07/2007 10:11:00

I have Osteo-arthritis and arthritis. It was diagnosed about a year ago when I was 50. No family history of this condition. My atrhitis affects my right hip, wrists, ankles and knee joints and shoulders, I also have hypothyroidism (underactive thyroid) and IBS. I have also extra nodules of bone growth on my hand joints due to the osteoarthritis. The only treatment I have been offered is pain relief using Solpadol tablets. I eat healthier than I sued to but it restricts my walking as I have profound pain in my right hip if I walk too far. I cannot stand in one place for any length of time as this also affects my hip and legs. It affects me in respect of doing my housework as even pushing a vacuum cleaner hurts my back after five minutes. I walk with a walking stick but this hurts my wrist if I walk too far with it. I haven't been offered arthroplasty as yet but who knows? As someone previous has said it is people who think that you are pretending that you are in pain that really get me going. If I could pass my pain onto someone for a week they would complain! My bugbear is, I am classed as disabled at work as I have equipment provided for me to enable me to do my job, this being a chair fitted for my back problem, ergonomic keyboard and and a vertical mouse, but am i classed as disabled to enable me to claim disability? No I am not. How bad do you have to be to fit the criteria? Are other people in this position? How can a panel judge you to be not in pain when they don't even know you and only see you for about 15 minutes? Sorry to go on but this really gets to me.

crissie | 24/07/2007 17:28:00

hi everyone i am 53 years old and i have rheumatoid arthritis, it was diagnosed about 12 years ago after a bad dose of flu, at first i was unable to do anyhting for about 6 weeks as the docs were not sure what they were dealing with. so they put me on a course of steroids and within 48 hours i was up and mobile, i stayed on a low dose for about a year and then it as stopped sharply to see what happened, i had a few relapses before i got off them finally, i have over the last few years had a few problems especially if i get really tired and get a cold...... i am on a drug called celebrex which seems to be the only that helps without upsetting my stomach, i don't eat citrus foods and i keep active, my mother and grandmother both had osteo arthritis so not sure how i got mine, i work as a midwife so i am hoping that my hands do not suffer anymore than they have any suggestions would be gratefully accepted.

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Lynda W | 31/07/2007 16:40:00

Hi im 50yrs, diagnosed with arthritus in spine about 15 yrs ago whilst having x-ray of liver/kidneys. Last year it seems my hips now as well. Not sure what brought it on but for weeks had permanent pain in my legs . Recommended Gloucosimine as doctor said other patients found it helpful. After xmas it eased off, but for at least 6 weeks in much discomfort and had to be careful how much i did in a day. Not on painkillers anymore, other than really bad day. As long as i dont overdo it. Like spending most of day on feet or walking for more than hour at time. ok If longer then takes a couple of days to get over it. Long time aching of back and stiffness.

If bending over or kneeling in one position too long completely stiffen up.

Been able to try and keep flexible by varying what type of work i do and for how long on feet etc. Also have Ulcerative colitus, so was on steriods for approx 10 years more on than off and in varying doses. Trouble is the weight that put on as each large dosing time another size approx in clothing managed to come down 1 to 2 sizes but am sure the excess weight doesnt always help. ( still 2 sizes bigger than when first put on steriods) having been off them now for at least 2years straight had hoped to have weight fall off.

Try to eat healthily, did find when tried Atkins diet. taking bread/wheat based products out of my diet helped a lot with both problems.

 

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Wendy | 08/08/2007 09:29:00

Was diagnosed with curvature of spine(L5/6) 3 years ago. Not sure if is A S. Causes pain in lower back,both sciatic nerves, stiffness in lower back and hips. Also difficulty in stretching upwards(can't reach top shelf now). Pain clinic gives somerelief with trigger spot injections. Take diclofenac on bad days. Standing or sitting in one place makesme stiffen up badly but strangely enough walking eases it considerably. Housework is done in short bursts these days as is my garden,

Had carpal tunnel surgery 25 years ago. Cartilage injury 15 years since. Broken foot 10 yrs ago. Consultant says "what do I expect at my age" (60yrs old)

Still keep active officiating at athletics meetings across the country. Find having outside interests keeps me going.

Have found it very difficult to get any advice about rehab, exercise to help strenghen supporting muscles etc.

Keep smiling

Robin Smith | 09/08/2007 01:04:00

• What kind of arthritis? I am still waiting for some definitive definition. Diagnosis was recent and I am 60.
• What history of arthritis in your family? Father had rheumatoid variety for about 15 years, mother was also arthritic.
• Any other conditions? Osteoporosis for three years and diabetes, on insulin for 40 years.
• What treatments do you use? So far just anti-inflammatory tablets.
• Has your diet had to change? No advice on this so far. Further blood tests still pending.
What other lifestyle impacts have there been? None. Suggested causes include wear and tear, so DIY and my favourite sport, fishing may be restricted some way ahead.
• Have you ever had or been offered Arthroplasty? No, not needed at present.
• What do you think of the information available about arthritis? Have done very little reading to date.
How would you like to see support for the condition improved in your country? I will know better once I have started to benefit from whatever may be available in Scotland.

david young | 10/08/2007 17:22:00
I don't know what type of arthritis I have .Noone in either of my families,other than an 80 year old aunt who got it in the spine has ever had arthritis. mine came on without warning at 55.I twisted an ankle playing golf and 2 months later had all the symptoms of R.A. This does not show in tests and while I have the most serious symptoms of Lupus do not have this either. I have osteo everywhere and painkillers do not work.As I am on warfarin for anti phospho lipid syndrome and atrial fibrillation i am not allowed NSAID'sIf anyone can explain or help I would be very grateful.

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lorraine| 11/08/2007 18:36:00
hi their i to have arthiritis not sure what kind yet as they still think its ruimetyed arthiritic sorry ive probably spelled that wrong as i do have quite a few other illness like raynalds disiess and fibromialgia i suffer a lot of pain in my legs neck hands and fingers and wrists hips to now my mum has arthiritis in her leg and kness and spine iam 45 years old i dont have much socil life anymore but i dont grumbil as their is a lot worse people out their my mum is in her early 70s she also need a new knee cap replacment hopefully she will get it done soon

Vic W | 13/08/2007 09:39:00

I have OA and am having treatment at present follwing a second arthrosopcy on my right knee. Surgeon says I may need full knee replacement. I am 59, first arthroscopy was undertaken 6 years ago. I have also had an arthroscopy on my right shoulder 20 months ago wehn further signs of OA were found.

I suffer from painful joints on my left hand fingers which can affect my golf. Untilk recentlly I ws reasonably mobile but obese. I played sport at a reasonable level including Field events such as Shott Putt Javelin and discuss and my main sport was Rugby where I was a prop and pliad a decent level until I was in my early thirties.

I suffer episodes of stiffnerss and pain in my neck and shoulders which are also probably trelated to injuries sustained whilst playing rugby.

I will update the blog when I have had more information from my surgeon.

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Jennifer | 15/08/2007 11:00:00

To tell the whole story would take too long, and that is probably the most irksome side of the horrible disease Sero Pos. Rheumatoid Arthritis along with tendonitus and sinovitus. I was born 1948 a farmer's daughter, but all my life I lived as a farmer's son. All my activities were not really ever very ladylike or feminine, can't sew, knit, embroider. Certainly resent time having to be spent at the hair dressers (but I do go, apparently I'm supposed to enjoy!!)and shopping has always been a definite no no, Animal rearing preferred to children,(so I had none; children that is!!) more interested in how a vehicle runs than what it looks like, and as for fashion; boring! So a very active physical lifestyle. Following a seriously bad bout of a flu like virus along with menopause in 2000/01, I suffered five years of a downhill slide trying all the medication and treatments known, all to no avail.Just going down both physically and mentally.

I have now been lucky enough to get on one of the anti T.N.F treatments, along with 15mg weekly dose of methotrexate, 15mg Meloxicam (anti-inflam)daily, all helped with a little amitriptyline and a few paracetamols! (We'll not even mention the blood pressure pills) Rattling on !This has given me back the WILL to WANT to live again. This may sound dramatic, because there are many of you out there in a far worse state than I was, but if I couldn't have a taste of my former life I didn't really want a life at all. I did have to give up keeping sheep but I am now ABLE to do many of the activities that I had enjoyed before, like gardening and doggy walking, I made a pretty good recovery from a shoulder replacement but there is still pain and stiffness in most of my joints especially hands and feet, therefore all tasks take much longer than they did prior to contracting R/A. Compare leaping upstairs to the loo to going up one at a time with each foot playing (catch up)

Now back to the beginning, the WHOLE story would take too long, I'm eternally grateful to my rheumatologist for getting me where I am today, but because everything takes so much longer to do. I don't want to spend too much time writing about the worst few years of my life, but if it gives just one of you out there a glimmer of hope then I'm glad I stopped to write it! JJ

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Hilda | 03/10/2007 16:51:00

I have Arthritis in right hip, am considering

a hip replacement, as worried what mobility I

would have after operation?

Freda | 18/04/2008 11:04:00

Hi Hilda, GO FOR THE OP. - i.e. hip replacement - it will change your life! Nothing ventured, nothing gained! If it can be arrnged and you have a good surgeon, you should be walking around again soon and be PAIN FREE with MORE MOBILITY than you are presently having. God bless. ---Freda.

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Liam | 26/05/2008 19:13:00

I'm 41 and was diagnosed this year with arthritis of the spine on 3 levels after YEARS of pain and complaining to my Dr . The pain is EXCRUCIATING....so bad I have wanted to end my life at times. I take Tramadol, codeine and paracetomol in various combinations but even all that doesnt totally kill the pain.Of course I have been addicted to opiates through all this . Praise for my G.P thogh , he has tried everything to help my pain. My mobility is now very poor. Mornings and early evenings seem to be worst for stiff joints etc. Pain from this has utterly layed waste to my life.I cannot go out, I cannot get comfy enough to read or watch t.v . Before this I was very active and fit. I have tried everything possible to help myself. I was given spinal injections which helped for about 3 days then wore off. My entire life is changed for the worse. My Doctor says it will likely only get worse....if it does I don't think I will be able to go on.Arthritis runs in my family but nobody else seems to have had this level of pain. I do not eat much these days but what I do manage is healthy enough. I used to enjoy eating those crab sticks but found that the food colouring in them casued my joints to swell. I don't eat junk or drink booze.There seems to be lots of good information about Arthritis but it seems that when it comes down to the bottom line Docvtors don't seem to know what to do to stop the worst pain for many sufferers. Best wishes to all fellow sufferers .

NORMA JEWEL | 29/06/2008 17:20:00

I have severe osteorthritis of hip,cartilage completelygone BUT have high pain tolerance and am very independent even in a wheelchair,dress myself,need no one to assist my bathing,keep my home spotless, just have to depend on someone getting groceries,i can use walker for short period of time,i dread surgery because i have atrial-fib so i am making bet of my life with the Lord's help.Is it ever too late to have a surgey should i change my mind?I have been crippled for 4 years now.Thank you so much for any answer.Norma Jewel Clarke-m

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