Welcome to the latest ResBlog from The Patients’ Voice
Arthritis is a common condition which affects an estimated 8 million people in the UK. The Patients’ Voice is interested in hearing your views. Our purpose is to better understand the experience of sufferers from the point of showing symptoms through to diagnosis, treatment and coping.

We would be grateful if you could share your experience by answering the questions below

1. What were the initial symptoms you experienced which prompted you to seek medical attention?
2. How was your diagnosis made?
3. What treatments do you follow - medicine, surgery, physiotherapy, exercise etc?
4. In coping with the pain have you found any regimes that help you particularly?
5. What adjustments have you made at home/work to help you cope?

These questions are only a guide and so please feel free to bring up any other issues that you feel are relevant to you. Also, please do add any other sources of information or support that you have found useful.

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

Best wishes

Belinda

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Roger | 15/02/2008 15:14:00

Thank you for providing this forum. It gives us all an opportunity to be heard. I am 62 and I started to get these aching pains in my knees. This started about 13 years ago. At the time I felt it was wear and tear given my age but as the pain and immobility intensified I decided to seek medical attention. My GP did the initial tests - blood tests and mobility tests but decided to refer me to a specialist for follow up testing and treatment. I was placed on medication and taken through a series of exercises by the Phsiotherapist. Personally I have been doing a lot of reading on the subject and have come to realise that changing my diet has helped. I tend to eat a lot more vegatables and fresh fruit (not citrus). I have also made a note of the times when I am really affected and it seems to be when the weather is colder or in the late evenings. I usually find that applying warmth helps. I am aware that there are a lot of personal aides available to help sufferers fortuneately my arthritis only restricts my walking but I have not really had the need to make any adjustments in the home.

Maria Wilson | 15/02/2008 17:45:00

I started to suffer from pain in my knees in my mid-forties. Everything about my lifestyle and symptoms suggested a mechanical injury - but I was a middle aged woman and was not listened to and, after perfunctory blood and xrays (both negative), was written off with 'wear and tear and keep taking the pain killers'.Three years later, I was advised to consult privately, had an MRI scan and now have a diagnosis of bilatetral torn cartilages, not degenerative arthritis.Apparently this is not an uncommon scenario. Do not be fobbed off by GPs! When you see them and you are in pain you are very vulnerable - but do try and stand your ground.

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Peter Rouse | 15/02/2008 19:11:00

<>69year old sufferer from Ankylosing Spondilitis. Very painful in its effect on joints, spine now practically a solid rod, luckily my neck and hips aren't too bad. Played badminton twice a week for about 30 years, but not much exercise taken over the past few years and now have had a new hip to break in.1. What were the initial symptoms you experienced which prompted you to seek medical attention? I had aches and pains in various joints, from 18 to around 26 years old, kept being given tranqs until I changed doctors. New one diagnosed AS immediatley, after 5 years of increasing constant pains in back and chest. Chest pains were 'reflected' pains from spine spondyls joining up.2. How was your diagnosis made? From the rheumatology dept at Stoke Mandeville, after various tests and blood samples. 3. What treatments do you follow - medicine, surgery, physiotherapy, exercise etc?Medicine was Naprosin, gave almost immediate relief from the worst pains. Exercise regime suggested, no surgery available for AS. Have changed medicine various times cannot stand the Indicid based drugs as they cause migrain, am now on Feldene, had this for the past 10 years and no bad side effects. 4. In coping with the pain have you found any regimes that help you particularly?Pain relief done by my own pain management system. Works for me. Imagine pain are as a bright red spot, try to spread this across whole body, move this into arm, wrist, finger and blow away. Sounds stupid, takes a long time to practice, but I can manage the worst pain this way, but not sudden vicious pains, when you get no warning. 5. What adjustments have you made at home/work to help you cope? Had the illness diagnosed now since the early'70s. Had two sessions for hospital treatment at Stoke Mandeville, heavy physio in the hydro pool, and initially a cortisone drug which felt like a dose of Duckhams Q50 had been injected. I had lost around 90% movement in spine shoulders, hips and knees. Regained at least 75% so very successful. Very fortunate in the way the disease hit me, I have been able to work full time all my life, and have no adjustments to home. Now I am getting the osteo form and as I said, a new hip has been installed, and the shoulder has had a scrape out, maybe a new one will have to be fitted. Great fun going through airport security. Have now found that Rose Hip tablets are REALLY good for pain relief, take the 100% Rose Hip from H&B but almost any are just as effective. Better than Paracetamol. Glucosamine and Chronditin are also HIGHLY recommended. Good luckPeter

pam | 15/02/2008 19:38:00

i have just been diagnosed with fibromyalgia after being told for 20 years that i had osteo arthritis and have had a lot of different treatments ie medicine,physio, acopunctre,hydro therapy, you name it i have had it, cortisone ,gels, tens machine, massagers, osteotherapy,but could never understand why i had the chronic fatigue,now my gp tells me i have probably had it for all that time but when i first started with it at age 40,it was an unrecognised illness. It makes me think about all the drugs i have been taking all these years ,and did i really need half of them,i am now 61 and feel 80,i am now waiting to see a consultant !!!!!

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Phil Lee | 15/02/2008 20:31:00

I have had pains in my legs and armes since my early forties went to my doctor had the blood test and xrays and was told it was wear and tear. I have been asking for a MRI scan from my GP but have been told it wouldn't prove anything. I just keep taking the painkillers. Even with the painkillers I still have the continual ache and get reffered to a physio. I just want to be taken seriously by my GP. I think it is all about the money not patient care.

Brenda | 15/02/2008 21:20:00

I am 69 years old. I first noticed the pains in my hip about 5 years ago and the GP sent me for Xrays and the usual blood tests. These confirmed that arthritis was affecting both hips, the right one more so than the left. In the last 2 years I have started to suffer very acute pains in both knees which have also been confirmed as arthritis. Unfortunately for me I have also suffered pulmonary embolisms (Blood clots in the lung) related to severe varicose veins. Consequently I cannot be treated with the usual medications for arthritis because they effect the blood clotting medication that I have to take. Surgery for replacement joints are also ruled out so I can only rely on Paracetomol or codeine to help manage the pains but this is not very satisfactory. The knee pains are worse than the hip pains and affect my walking quite a lot but I have not felt it necessary to make any adjustments in the home yet.

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michael stanbury | 15/02/2008 22:44:00

Thank you for bringing up this Blog to try and help other sufferers. My complaint is Rheumatoid arthritis My complaint started in my early forties with my knees hurting the most, I went to my GP who gave me voltorol, this went on for two years and I was hurting all over and got defomed hands, until we got a nurse at surgery and she suggested a blood test. From then I was taken in hospital the next day and put on a drip every two days. When discharged I was given sulphersolserine, Lefllunomide Celebrex, zantac tablets and pain killers. Some of these caused stomach problems, I got Pancreatitis and was admitted three times and had to have my gallbladder removed(Doctors say pancreatitis is caused by drink but I do not drink), so make your own mind up. With this problem with my stomach I was taken off zantac and put on Pariet Rabeprazole, also was taken off Sulphursolserine and now have to inject myself in the leg twice a week and I carn;t tell you how much better feel. I want to point out that I have had Bakers cyst at the back off both Knees you can get this if you have Rheumatoid arthritis ,We have made a few changes to the house stairs shower kitchen. but my wife is partly disabled so we had not had to change much. If this helps anyone I am pleased to of helped and my best wishes

Kelly C. | 15/02/2008 22:55:00

I am currently 28 years old (29 next month). I was diagnosed in Dec 2001, 3 months after my first son was born. I was 22 years old at the time. It originally started in my finger. It was so red, stiff, and swollen, I thought I broke it. Then, I had similar occurances with my shoulders, wrists, and elbows. Pretty soon, I couldn't even lift my arms. My primary care doctor ran some bloodwork. In the mean time, the pain and stiffness got so severe, I ended up in the hospital. They pulled the blood results and saw the my Rh factor and ANA had come back positive and got me into a rheumatologist immediately. After going through my history, my bloodwork, and doing some xrays, I was diagnosed with Rheumatoid Arthritis. I initially was started out on steroids and anti-inflammatory medications. After about 2 years, I was put on Plaquenil. Approx. 2 years ago, I was switched to Methotrexate. Last year, Enbrel was added. Due to some injection site reactions, I just switched from Enbrel to Remicade. So, I'm currently on Remicade, Methotrexate, Folic Acid, Vicodin & Tramadol. I also have chronic migraines so I also take topamax and relpax. Due to ulcers & acid reflux from my meds, I'm also on Prevacid. All at the young age of 28! My worst joints pain wise are my hands, knees, hips, shoulders, and neck. To cope with the pain, I spend a lot of time in the tub. The hot water helps. When I'm in bed or on the couch, I always have a heated blanket on me. I've also found that attitude makes a huge difference. If I can laugh and smile, it makes all of the difference in the world. If I'm miserable, I'm going to feel worse. If I'm stressed, I'm going to feel worse. When I get sick (a cold, the flu, a sinus infection), I feel worse. Anything impacts my RA. I used to hide my RA a lot from my friends. But, in the few years I've found a few good friends that are more than willing to listen to me complain when I feel yucky and just having someone listen to me say "I feel awful today" helps. Having this disease has made a significant impact on my life. It's definately impacted my marriage, my career, my schooling, my family, my finances. It places many stresses on things, particularily when I'm so young. At my current job, I have a lot of restrictions as to what I can and can no longer do because of my RA. At home, I have to have help getting things up and down between the various floors. There are certain things I can't do with my kids. I've missed out on holidays with them because of being in the hospital, makes me sick to think we spent $40,000 US on my healthcare bills that could've gone towards their college savings, etc. So, yes, RA has had a significant impact on my life. But hey, as I say, you have to smile and laugh, otherwise you're just miserable!

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Frank Duffey Gainesville Florida | 16/02/2008 07:33:00

1. What were the initial symptoms you experienced which prompted you to seek medical attention? I had pain on my left hip I kept telling the prople in the MISA program I was having chronic pain they gave meTyononel 3 but that did not do anything to help it was after I had a accident on my bike aomeone hit my bike that I first stqrtedn notieing then pain.2. How was your diagnosis made? The Pain Clinic at the VA made the diag of Osteoarthritiies in my hip and my back3. What treatments do you follow - medicine, surgery, physiotherapy, exercise etc? They are doing a second Fluro treatment this comming tuesday at 1 pm they want me there an hour early before the procedure is done.I am on a lot of medications: MedicationsMultivitamin Cap, Calcium Carb 1.5 mg 2 times a day, Alendronate 70mg once a week, Gabapentin 300 mg 2 in the morning and 3 at nite, Venafaxine HCL 150 mg 1 a day, Cyclobenzaprine HCL 10 mg 1/2 tablet as needed, Divalproex 500 mg 1 at night, Trazadone HCL 50 mg as needed for sleep, Omeprazole 20 mg 2 a day for stomach acid, Methadone 45mg a day 3 times a day for pain, Perocet 5mg 325 mhg aceacillion 2 every 4 hrs for pain as needed. The Methadone was just changed due to increased pain and the curerent levels were not working.4. In coping with the pain have you found any regimes that help you particularly? Not yet as they continue their medications, I think I need a hip replacemewnt butb they keep giving me these injections snd they only work one to 2 months, so whats the point just putting off the surgery onmy hip tht needs to be done.5. What adjustments have you made at home/work to help you cope? I am fully disabled and this has affted my quality of life a great deal to the pointb that I dont have any close friends any more and I dont even have my roommate she could not deal with the Narcotoic pain mediastions rthat I am own even when they were locked up in my medication box.She just moved out today so now I cant dreive for another week because of medication changes I went from 30Mg of Methadone to 45Mg of Methadone thats a l;ot of increase I took a nap well I layed down and when I woke up it was 10pm so I slept for 5 hours thats ok I will propally be up for a while now at least until saturday morning I need to go to the store tomorrow mornong I ewill be carefuk its only across the street fdrom the apartmneyts down 23rd and turn right then left into the Shopping center so its reakky close, I am out of bread and a few things that I need. Frank Duffey

albert monaghan | 16/02/2008 11:44:00

there is NO CURE for, osteo arthritis i suffer from. all i can do is, share a little of what gets me thrue with you.i get up each day and say, o/a is not going to win today ( in pain)today, I AM.but, i do need meds to get me thru.painkillers, and glucosomine (for easing stiff joints ) are good.but so is, possative mental attitude.i cannot exersize at all. but, i walk around bungalow,do not sit in chair all day vegitating.occasionally, the o/a does win, then i have TO SIT!!!!! but then i try to massage joints etc. i do use a dissabled scooter to get out and about, believe me, this is freedom without pain !!!!!! but, all in all, you gotta try and get on with your life. no- one can do it for you,

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Brandi | 16/02/2008 21:35:00

Just a little hope for all of you out there: I am 27 years old, have type one diabetes, asthma, hypothyroidism and rheumatoid arthritis and I currently take Humira and Methotrexate for RA. I ran the Portland marathon in October 2007 after trying and failing a few times before to run a a mrathon due to the RA. I want to encourage you all to take control of your lives, attitudes and minds and to never give up!!

Eileen | 17/02/2008 12:49:00

I am 68. I retired when I was nearly sixty three and had no arthritis at that time apart from occasional pain in my thumbs when I spent too long on the computer. Since then the arthritis in my thumbs has progressed to the stage that I can no longer exert any pressure and have to find alternative ways of doing things. My thumb joints are also quite painful. I started feeling pain in my left knee about two and a half years ago having previously been quite active. I had always enjoyed walking and found time to do this now I was retired but unfortunately the arthritis in my knee has progressed rapidly. I had an X ray early last year which showed a badly deteriorated knee joint. I increasingly found my ability to walk any distance being severely restricted and eventually found even walking around a supermarket to be vey difficult,I determined to do something about it as I hate my life being restricted in this way. My GP referred me to a specialist and I was shocked to be told that I needed a total knee replacement. I had hoped perhaps something less drastic would be possible. After consideration I decided to go ahead with the operation as my quality of life is affected and I am fed up with being so restricted. My operation is due to take place on 28 February. I have been told many different stories of knee operations some good some bad! I am aprehensive but am determined I shall be one of the success stories!!!

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Gillian | 17/02/2008 20:42:00

I developed RA unexpectedly when my younger son was 16 months old. 2 of my fingers joints became swollen and by the end of a week I was in so much pain in all of my joints that I could barely move. My GP didn't like the rheumatologist and I had to contact him directly to get an appointment! (GP stumped up a letter eventually.) Unfortunately, I moved shortly afterwards and had terrible problems with the new rheumatologist, who told me I could fall pregnant on methotrexate, and eventually was referred to another one who was a woman. She was not very sympathetic and kept telling me that there were people who were worse than me until I lost my temper and said that if I could help any of them I would but as I couldn't would she please stop going on about it as I had a toddler & a young child to look after. She then told me I was in too much pain for my condition for 2 years before diagnosing fybromyalgia. I found that I got more help from the internet and support groups than from the doctors and social services when I approached them for occupational therapy support. I am a vegetarian and take supplements to help support the medication that I am prescribed. I recommend physio (I have to go privately!) and a chiropractor (again it's private) and it is the only way I can keep mobile. I have to fight to keep my drugs and to keep my DLA despite the fact I have severe problems, loss of mobility due to pain & stiffness doesn't cut it!!!! I can only work part-time and cannot afford not to although some days it is a severe struggle as I don't sleep properly and don't know which pain is what. The fatigue varies and I have been unable to work for the past couple of months. I think the worst thing about these illnesses is the line that the consultants take, calling fybro a nothing illness when it is very dibilitating and telling me that the RA is nothing to worry about as there are people worse off - that doesn't help me and I have struggled on my own (my hubby was at work during the day) to look after 2 children and a home. I found that employing a cleaner didn't really help as they don't clean after a while and 1 of them stole some jewellery that I was selling on ebay to buy some mobility equipment. My hubby went on to develop MS and recently a new GP to the practise has been really helpful to him and is sympathetic to my problems. This has made an incredible difference to both of us and it is really worth changing practises, if possible, to find such a gem. If you are unable to, insist on a second opinion, your GP has to refer you if you ask. Talk to your PCT, my Dad did when he broke his hip and the GP, who was 1/2 mile away refused to visit as he was too far! They were very helpful and transferred him to another practise where both my parents get plenty of support. Perhaps a fellow sufferer can recommend somebody locally, always worth a try. The thing to remember is to try to keep moving even if it hurts, you will stiffen if you don't. Try to find things that will help, alternative therapies can be amazing. Some of the problems that you suffer may be related to your illness or medication, speak to the doctor or look it up. Pharmacists are very helpful if you want information on your drugs. If there is anything that you don't understand ask to have it explained to you until you do. Knowledge helps you deal with your illness and remember, it is your illness and is not the same as anyone else's. Chronic illnesses cause emotional trauma when first diagnosed, you feel angry - why you? You feel frustration at not being able to do anything and then you spend a lot of time trying to ignore it but it doesn't go away. You have to learn to roll with it and how to cope with problems. I still garden but instead of doing the entire bed in 1 day, do a foot at the time so that I don't get too painful & tired. This can be difficult & frustrating but infinitely better than spending a week in bed unable to move.

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the bassa | 18/02/2008 02:06:00

yeh, it susk's. sorry, i just do not see this as poss. just get on with life[ resticted as it is]. mega morphine +the rest ,and travel were and when i can, make the most off it, life is for liveing. sorry peps, but i take my drugs'[ c.rist without paying for it] and move one!!!

DONNA THOMPSON | 18/02/2008 09:32:00

I FIRST SLIPED A DISC AT WORK WHEN I WAS 33 WAS IN TERRIBLE PAIN BY NEXT MORNING COULDNT WALK DOCTOR TOLD ME TO TAKE PARACETOMOL AND GET ON WITH IT.AFTER BEEN LIKE THIS FOR TWO WEEKS AND HAVING FOUR YOUNG CHILDREN TO CARE FOR i WAS TAKEN TO A BONESETTERS IT WAS A MIRICLE I COULD WALK AGAIN PAINFREEAFTER A COUPLE OF MONTHS IT STATRED AGAIN AFTER MANY ARGUEMENTS WITH MY THEN DOCTOR I WAS REFERED TO HOSPITAL WERE I HAD AN MRI THE CONSULTANTS EXACT WORDS WERE IM SORRY BUT THERE IS ONLY ONE WAY TO DESCRIBE YOUR CONDITION YOUR KNACKED IT WILL ONLY GET WORSE SO GET USED TO IT YOULL BE IN A WHEELCHAIR BY TIME YOUR 40.AFTER MANY A XRAY AND BLOOD TESTS AND SEEING THAT MANY DOCTORS IVE LOST COUNT I WAS TOLD I HAD OSTEO ARTHRIRTIS IN NEARLY EVERY JOINT IN MY BODY AS WELL AS DEGENARATIVE BONE DISEASE AND SPONDOLOSIS OF THE SPINE.I AM NOW 43 AND RECENTLY THE PAIN AND SWELLING IN MY LOWER LEGS BECAME UNBEARABLE SO BACK FOR MORE BLOOD TESTS THIS TIME WITH A NEW DOCTOR WHO SAID AS A SIDE EFFECT OF OSTEO ARTHRITIS I HAVE POLIOMYALGIA AND NOW HAVE TO TAKE STEROIDS THIS IS HELPING. I HAVE SPENT TIME IN A WHEEL CHAIR BUT DISPITE WHAT DOCTORS SAY WHILE I CAN WALK I WILL NO MATTER HOW MUCH PAIN YOU ARE TREATED LIKE YOU HAVE NO BRAIN WHEN IN A CHAIR PEOPLE TALK TO YOUR CARER NOT YOU ITS MY BACK AND LEGS THATS DAMAGED NOT MY BRAIN

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Jill Smith | 18/02/2008 16:27:00

I was diagnosed some 4 years ago following pain in my right knee after an injury. I thought at first I had just twisted my knee and did not go straight to the doctors. Eventually I had to go because the pain was getting worse. After the usual round of painkillers and creams and no success I was sent for an X-ray which revealed nothing. I later had an MRI which revealed that I had severe arthritis in my right knee and a courese of Physiotherapy was recommended. I undertook this and it made the pain worse - I was walking in to the sessions OK and came out with a walking stick afterwards! I have been told to lose some weight as this prevents strain on the joints. I have no chance of having surgery unless it completely ceases up one day as I am getting off a bus or walking up or down stairs - both of which I have had near misses - my knee can just lock for no reason.Apparently I am too young for surgery - you have to wait until you are 70! What a load of rot. I retire at the end of next month at 60 and I intend to go walking and do a bit of swimming too which might help.It is going to get worse not better, I know that.I don't have to worry about having my home prepared as I live in a ground floor flat - so no stairs.It is always worse in damp, wet weather and as much as I love to walk - I find I cannot walk more than half a mile before the pain sets in. I have to take a folding walking stick wherever I go now.

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Rebecca | 18/02/2008 17:50:00

I am glad i get to share my thoughts about arthitis. I have osteoarthitis. It is in both knees. I have had it since the early 90"s. Right now i am taking mobic. It seems to help a lot. I have tried several medicines but it is hard to find one that does not irratite my stomach. I tried comming completely off the medication and i got to where i could not hardly walk my knees were so sore. I had laparscopic surgery on the right knee several years ago and it helped some. I had to have physical therapy and it took me a good while to recover. I have had pyysical therapy a couple of times with both knees and it really seems to help. I have had a couple shots of cortisone also and that helps. If i do not do these things i almost get past going. My orthepedic doctor told me the exercise bike is the best exercise for the knees.

Melissa Fogle | 18/02/2008 23:38:00

I am a 33 yr old single mom of two little girls. I have RA and SLE. I have had it most of my life we are sure; however in 2001 after the birth of my first daughter I experienced a "flare" of some sort. I sought a help of a local Rheumy and had a positive ANA. She didn't feel it was anything to "worry" about so she dismissed it as a fluke. However she did write in my file that she felt I had a connective tissue disorder. NEVER once were those words uttered to me. I then decided because I had the all clear that I would have another baby and we did. In Sept 2002 my second daughter was born. My health went down hill very fast after she came. I had terrible knee pain and pain in both of my shoulders and hands. My girls only 23 mths apart kept me busy and were always getting sick. So my now ex husband decided that it was best for me to stay home and take care of the girls. I opened a small in home childcare center. The girls health became better and I just continued to get more and more tired and exhausted. The months rolled into years and my ex husband felt that I was "lazy" and didn't care about our marriage or the house. When I did all I could most mornings to get out of bed and couldn't explain to anyone what was going on with my body. And if I did no one would believe me anyhow. So my husband left and married my ex best friend; and I closed my daycare and we sold the house. I finally moved into my own apartment with the girls. I found the job of my dreams; and was learning to live my life on MY terms. Not a month after we moved were finally settled I woke one morning and couldn't breathe or get out of bed. After two hours of fighting my body I managed to shower,get the girls to the sitter and drive an hour to work. Till I made it to work walking breathing and writing was impossible. SO working in the medical field the doctor I worked for made me see a doctor. So I started with my GP and he looked at me and right away said that I had SLE and was pretty sure of RA also. I had all the symptoms. Malar Rash, red skin, sores in mouth and nose, and joint pain same on both sides. It was a moment that I will never forget. It was the moment that changed my life forever; I was never going to be able to live the same again according to him. We started high doses of steriods and I had to wait six weeks to see a Rhuemy at Hershey Medical Center. I finally made it there to see her and she started therapy. We started Plaquenil and Alfudine. I had horrible side effects with the sulfa drug and wasn't getting any better. Everytime we tried to decrease the steriod I would flare. So kept the dosage up and stayed with Plaquenil.In May 06 I had a seizure and wrecked my car. For that reason I am now unable to drive. I have to be seizure free for one year before PA will give my DL back. I wouldn't drive anyhow; it isnt safe for anyone for me to be behind the wheel! So by this point my SLE and RA affected my CNS,lungs,heart,joints. I went to Cancun in Jan 07 for just a few days to get away and never thought that the sun would cause the problem that it did. I came home and had the worse flare ever. I again was unable to walk, I was using a cane. It is very hard to take care of two little girls. I saw my doc who I now call my "Mircle Worker". She changed my prednisone to Medrol because my body wasn't absorbing the prednisone. She gave me an injection of steriod and started me on MTX. Now keep in mind I am well aware of the side effects of all my medication. I swelled up like the Staypuffed Marshmallow Woman; and I was soo sick from the MTX but I knew it was going to pay off in the longrun. Then it was time for another big decision. I had to decide to give up my choice to have anymore children, so in June I had a hysterectomy. I was no way finished having children; but also knew that I wouldn't make it through another pregnancy and neither would the baby. I already had two beautiful girls and had to be here for them. After my surgery they changed my oral MTX over to injectable MTX. That really helped my side effects;but then I had to get passed my fear of needles. It was helping but not the way she had hoped so we added Enbrel. Now we had three shots a week; my girls think I am a circus act. LOL and I found if I don't laugh about what is going on in my life I would be crying all the time. So now I have been denied twice by SSI and I am in appeals. I am disabled by three different doctors. I am an Advocate for the AF. My daughters and I are headed to DC Feb 25-27th to work towards getting the Arthritis Disablity and Cure Act. It is never too early to teach our children that they have a voice and no one is going to be an advocate for them but them!!! To wrap this up I have started school this February to get my AAS in Paralegal Studies. I am living a silent painful life that I take NOTHING for granted!! I see everyday as a blessing and everyday I get to spend with my daughters. We make the best of good days and rest on bad days. My girls are supportive and helpful as is the rest of my family. My ex husband doesn't think I am sick because he can't see anything wrong. Feels I do it for attention and I teach my daughters too much about my illness; which they will have a very good chance of getting. 300,000 children are diagnosed with form of arthritis. I am not working for a cure for myself; but for my girls!! Please feel free to contact me I would love to talk and as you can tell I have no problem coming up with stuff to say!!!Good Health to All......Melissa

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David Ebel | 19/02/2008 09:47:00

Allow me to answer your questions:1. What were the initial symptoms you experienced which prompted you to seek medical attention? My mom and her brothers and sisters all had arthritis, all my cousins (their kids, including me and my brother and sister, too) For me the pain by age 6 was very clear when I played outside in the cold or when I did strenous things. I did not know that everyone else did not feel what I felt. My old doctor called it "growing pains" and it was not really diagnosed till 8th grade...(age 12) The pain has increased through the years and now I have flares that are pretty debilitating. 2. How was your diagnosis made? I went to a podiatrist for ingrown toenails and he began to notice that my feet were not shaped right and began to do tests that ended up with discovery of several birth defects and a reason for all my pain. 3. What treatments do you follow - medicine, surgery, physiotherapy, exercise etc?I live in a warm dry climate, take prescription medications including prednisone when necessary. I also am involved in the Arthritis Aquatics Centers water aerobics twice a week. 4. In coping with the pain have you found any regimes that help you particularly? Hot, dry and climates and standing for shorter periods of time are helpful. 5. What adjustments have you made at home/work to help you cope? I have a spa in the back yard to soak in when necessary, see a Rheumotoligist regularly, attend water aerobics, take my meds and try not to push too hard (impossible in my job in November and December)

Gillian | 19/02/2008 18:10:00

It seems to me that we all suffer from lack of diagnosis & care syndrome. Reading the comments already on the page makes me feel less alone & also just how important a good consultant and GP is. It is also important to understand what is wrong with you and I have refused to move from my doctor's surgery until I was told exactly what the consultant told him. I was able to discuss this with him & then look it up on the internet & understand EXACTLY what was wrong. Many doctors are wary because I now know what they are talking about but I do get better help from my GP as I know what to ask for. Also, as I said earlier, I now have a new GP who is fantastic & I can't tell you how important it is to find a good GP or consultant.

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Kelly | 20/02/2008 22:16:00

Melissa, I am also headed to DC for the Advocacy Summit! In March, I will be doing Advocacy work for our State as well.

Debbie S | 21/02/2008 02:19:00

1. What were the initial symptoms you experienced which prompted you to seek medical attention? Fatigue, severe joint pain - everything hurt - I was attending to the care of my mother who was undergoing treatment for ovarian cancer and I didn't seek attention for my symptoms until they were almost unmanageable. But I broke down and finally sought medical assitance about 7 years ago. At the time I couldn't have imagined that one thing was causing all of the misery I was experiencing. 2. How was your diagnosis made? Through blood tests. Shortly after my initial GP visit, where I received steroids, I was refered to a local RA clinic (am fortunate to live close to a very good center) and I was diagnosed there through blood test which confirmed a high RA factor in my blood.3. What treatments do you follow - medicine, surgery, physiotherapy, exercise etc?Initially, I was prescribed steroids, mtx, hyrdroxychloriquine, vioxx and lortab for pain. Since then, my disease has had periods of inactivity and currently over the past 2-3 years almost constant flare. I have take Enbrel and Last year I did a course of Rituxan which pulled me out of an extreme flare. Currently I am part of a study for a pill form RA drug which I am responding well to, but the disease is still active. I exercise when I can, working on building muscle back,also focusing on posture because due to the impact on my knees (causing them to not straighten out) I am in a crouch constantly and am often bent over and at last chest xray I was told I was developing Kiphosis. All this tires me out, and I am unfortunately relying on Lortab a lot for pain. While manageable, I am mindful of the damage this medication can has on my liver and kidneys. 4. In coping with the pain have you found any regimes that help you particularly? Dealing with the pain is a daily struggle. I force myself to get up most mornings and am fortunate to have a job that isn't too physical, but when presented with physical challenges I welcome them as opportunities to improve my overall well being. I am also receiving therapy at a couseling center to help deal with the frustration that has built up over the years. Trying to cope with the changes I have been forced to make in my life due to the disease. While it is hard to cope some days, again I am fortunate to have people around me who are understanding of limitations.5. What adjustments have you made at home/work to help you cope? My whole life is an adjustment. I think of my philosphy as an "economy of movement". I try to plan my activities based on how I feel day to day, moment to moment. If I'm tired, I rest. If I have energy I push myself as much as I can, knowing I will pay some price, either out of weariness or pain. When at work, again, I plan what I do. I group tasks based on my physical energy level, sticking to desk oriented tasks when I'm tired and then any projects that require a lot of physical activity, I try and space out.Somedays, I'm tired and fed up - other days I'm raring to go. Not a day goes by that I don't whisper a prayer for a cure. I'm tired of being tired. Tired of pain, I'm mostly hopeful, but I'm sure like a lot of people I've met, there are days that I would trade just about anything for just a day or two of relief - a day or two from 10 years ago when I was "normal"I will say that I am very fortunate to have a terrific GP as well as an Rheumatologist and a fantastic staff of Nurses at the center. Without these people, I can't imagine what life would be like. They have provided me with as much physical care as they have mental and emotional support over the past 7 years.

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Stella Bernardi | 27/02/2008 22:01:00

First I will say that I have been diagnosed with Fibromyalgia and Osteoarthritis. 1. What were the initial symptoms you experienced which prompted you to seek medical attention? Pain in various parts of my body particularly left leg and back.2. How was your diagnosis made? Fibromyalgia was diagnosed by a tender-point examination by a rheumatrologist after all other tests had proved normal. Osteoarthritis was diagnosed in my hip by xray and in my back by xray and MRI scan. The lower lumbar region of my spine had deteriorated considerably and bone spurs were attacking my spine causing stenosis.3. What treatments do you follow - medicine, surgery, physiotherapy, exercise etc?I had a left hip replacement in March 2006 and have had no trouble with it since. It was thought I might need surgery on my lower spine to remove bone spurs but I opted not to have this done. 4. In coping with the pain have you found any regimes that help you particularly?I have had Sertraline, an antidepressant, Zopiclone, a sleeping pill, and various 'pain killers', on prescription but none of them helped much and I stopped taking them. Then I discovered a product that I ordered from America. (I live in England). I don't know if I am allowed to name it here. I started taking it last June and it has changed my life. I have very little pain now except when I get very tired.5. What adjustments have you made at home/work to help you cope?I had a stair lift fitted because I found going upstairs extremely difficult. But now I don't always use it as I can manage the stairs quite well. I don't work because I'm 72!I would like to have another xray and scan to see what actual difference there is in my spine but unless I feel WORSE the National Health Service won't allow it. I would like to prove that the product I have been taking has actually cured me. It is not a DRUG so the medical profession won't authorise it. It is a great pity that alternative treatments are not accepted by the medics.

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Andrea Parkes | 28/02/2008 19:32:00

I was diagnosed with the beginnings of arthritis in my right knee at the age of 21. For many years I have suffered and at the ripe old age of 48 it now involves my left knee, right shoulder, both hips, neck and spine. I do not receive medical treatment for this as I am considered too young for anything invasive. I too am affected by the weather, especially the cold and rain and also at night when I either have to go to bed early to ease my pains or put a blanket around me. I have taken the usual anti-inflammatory drugs and paracetamol (good old paracetamol!) but refuse to give in to a life-long regime of arthritis drugs. I do take glucosamine with chondritin which has helped a little, and also lowered the height of the heels on my shoes!!! Sport is the culprit for my suffering - it's the worst thing one can do for one's body but they never tell you that at the time!

Lel R | 29/02/2008 09:32:00

After my mum passed away my symptoms began and I have been told it could be due to post traumatic stress disorder. It was actually a slipped disc and I spent 3 months in plaster, 6 months lying on floor, pysio, traction pain killing injections etc. one day I got up and everything gave way had to crawl for help. The doctors then said I had no choice but surgery and this would be a 50-50 success rate -I could be paralysed. I had the op where my disc was removed but I believe because this had gone on for so long (2yrs) I was left with numbness down one leg and also told I had osteo arthritis.I have survived on anti-antflammatories and painkillers with occasional physio and I am still in a lot of pain- now my knees and hips are affected. The best painkiller for me was co-proxamol which really helped, This was taken off the market due to people abusing it even though you can buy over the counter drugs if you really do want to overdose! Now I find that a magnetic bracelet helps a bit -= I am in much more pain when I forget to wear it! I only take it off now if I am going out dressed special or when I'm in the bath and put it straight back on afterwards.I am unable to work as I never know how I will be on a particular day until I get up, some days I am worse that others and if I have a good day I generally tend to go mad, make the most of it and then set myself back for the rest of the week!! I find it particularly frustrating especially now as my DLA has been stopped even though things are exactly as they were , perhaps even a little worse. I would love to be able to work but only choice I have is to set up my own business and work when I am able to!! Fat chance of doing that unless I win lottery!! I have a wonderful husband and family who help me no end and I wouldn't be able to cope without them. I have had epilepsy also for the last 36 years and I won't let that or the arthritis beat me!Just keep on going on !!

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Pat Langley | 02/03/2008 18:11:00

I suffer from arthritis in my shoulder,left foot and both thumb joints, I can keep it under control with both medication ( Naproxin and Ranitidine to protect my stomach) and exercise. I swim two or three times a week and walk as often as I can. If I dont exercise my joints become very stiff and uncomfortable. I am a 66yr old female and was diagnosed after coming off HRT and suffering very painful shoulders and arms. I also take fish oil, zinc and vit C. I'm not sure whether these help or not. I dont consider myself to be a chronic sufferer.

Rose,Scotland | 15/03/2008 22:38:00

I was diagnosed many years ago. Though now I feel that I have tried everythng on the planet and know that the most important thing to keep me going is definitely good attitude. Sometimes that is really difficult when the pain makes me want to take something that will end it all. Every ones story brings encouragement. Mine started in myknees, and strangely enough, that is the part where the least pain is in my body. I have tried many, manydrugs and noting works for any length of time, so even now, 10 years later, we are still tryng to get the pain under control.

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Lorri Gum | 10/04/2008 15:08:00

I suffer from Rheumatoid Arthritis, and Raynaud’s. I was first diagnosed with Raynaud's back in the early 90's. Finally in 2003 I changed doctors, as my doctor would not believe me when I kept saying I hurt all the time. So when I changed doctors right away she sent me to a Rheumatoligist and she diagnosed me right away with RA. She said she believe I have had it since the early 90's. I was put on Methetroxate right away along with Prednisone, Folic acid and Pain Medicine. I still have not had any relief. I have been on Enbrel, Orencia, Arava and now Cellcept. I am always in pain and so swollen that some days I can not even put on my shoes. I can not work at all any more, and even have a hard time taking care of my housework. Some days are better then others but I still can only do one thing at a time and then I pay the price for it as I hurt and swell so bad that I wish I would not of done what I did. But I am not a quitter and I still try. I have also tried a lot of natural things but that has not helped either. I am hoping that this last medicine will work. As right now I am on so much pain medicine along with everything else that I would hope something would give.

Denise | 10/09/2008 22:26:00

To Stella Barnardi Any chance you could tell me what the medication is you are taking?

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