• fibromyalgia

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Belinda | 02/05/2007 15:28:00

Thanks for dropping in. I'm looking forward to reading your comments. All the best Belinda

Holly | 02/05/2007 16:26:00

I was dx 6/2006 and did have to switch doctors to find someone that understood. I even went to the Mayo Clinic in MN (USA) to confirm dx and they did a series of tests included blood work for autoimmune disease's (lupus, thyriod) and MRI of brain and back. I have Celiac Disease for the past 14 years and chronic migraines. The Mayo Clinic did confirm the FMS and have a wonderful program to help their patients. My doctor in florida (where I live) wants to put me on Xyrem...which will help me sleep at night. Next week I am going for a sleep study for my sleeping problems. Have you heard Xyrem works well for FMS??? I know the side effects can be serious. Thanks!

Kathy | 02/05/2007 20:47:00

I have suffered with what I call flare ups of Fibromyalgia for 30 plus years. I first showed signs as a teenager. I could'nt sleep at night so of course I couldn't concentrate in school. I was "diagnosed" at that time as a "problem child" and referred to an alternative school system. There I was "diagnosed" by school psychiatrists as having difficulties with authority and possible emotional issues. What they couldn't seem to figure out was why I still continued to be a straight A student. I continued to be miss diagnosed for the next 20 years by countless doctors but never had any other diseases such as lupus, cancer, thryroid problems etc. I had undergone every test you could imagine until my mid thirties when thank God I was seen by a young intern for an injury not related to Fibromyalgia and I just happened to be having a severe flareup at the time and he, God bless his soul diagnosed me with Fibromyalgia which I had suffered with since childhood. It was like a pile of bricks had been lifted from my shoulders. All those years I had spent being told that something was wrong with me either emotionaly or psychologicaly and the damage these other doctor's, teachers, and professionals had done to me spiritualy was almost as unbearable as the pain of fibromyalgia. I realize now that at the time it was a hard disease to diagnose and I am just glad that the medical society has improved in the area of diagnosing fibromyalgia.

June | 03/05/2007 12:29:00

I can't remember exactly when I was diagnosed with Fibromyalgia because I was already in the process of seeing doctors for my Psoriatic Arthritis as well as a hernia and other things. I can remember however a trigger - I was taking my dog for a walk. He was as German shepherd and very strong. One time he pulled my shoulder and strained it badly. I went to my doctor after a couple of weeks because the pain was not improving and in fact spreading all down my back. He sent me up to the hospital and I was given a collar. This did not really improve it and I just got worse and worse. I couldn't sleep because I couldn't get comfortable which caused me a lot of stress. The stress made my problem worse until I could hardly move. Sitting down didn't help and standing up didn't help either. The pain was excruciating! At the moment I'm not too bad as I am taking a natural product for the pain but every now and then I still get bad flare-ups. My doctor was great - he was the kind of doctor that did not like time-wasters but if you were genuinely ill he couldn't do enough for you and I am grateful.

Jules | 03/05/2007 12:29:00

i have been in pain with Fibromyalia for year no one take the condtion as seruios as it should be wish the Dr's listen to you more closely when you explain the symptoms to them but they don't

Justine Harnell | 03/05/2007 12:38:00

I had to pay for a private consultation with a Specialist Physician who practised in the Royal Infirmary for Rheumatic Deseases in Bath. I had 2 consultations then diagnosed as having fibromyalgia. I spent a week in this hospital learning how to cope with the pain & tiredness


joseph | 03/05/2007 12:43:00

I have suffered with fibromyalgia for about 20yrs pain in all my joints very bad sleeping habits. tired alday.poor concentration to the point that i cannot listen to or do two things at once at all.have been complaining to my gp for about 15 yrs. was a s/e. painter and decorater and was always told was wear and tear in joints and head aches and restless nights was stress.pain in joints at times are unbearable.am on variuos painkillers inc tramadol which kills me off as a man full stop. ie impotent.also use traxam and god knows what to help.diagnosis came on a appointment at GP"s when he asked me to take a pamphlet home study it and return in 2 to 3 weeks. it was about all symptoms of fibromyalgia and fitted my symptoms to a tee. I returned to gp had varoius blood tests and he examined by pressure of his hands to all the joints that caused me pain which is every moving joint in my body.was prescribed various pain killers.I requested to be sent to the city pain clinic for help which he said he done he told me I suffered with fibromyalgia and wherever he sent me i would only be refered back to him recomending same drugs as he has prescribed. still awaiting hospital appt after about 5 yrs.my life is just pain and how on earth my good wife puts up with me i dont know. good luck to anyone else who suffers with fibromiyalgia.joseph.

Emm | 03/05/2007 12:56:00

I had juvenile arthiritis as a child and then a bad episode of glandular fever when I was 15. I then had other episodes of glandular fever until I was 24. At 26 I had horrendous pain in my face and was diagnosed with Trigeminal Neuralgia and this was treated with Gabepentin and Amitriptyline. That was 12 years ago and last year I was in considerable pain in my body - it felt as though my bones were aching rather than joints. My doctor felt it might be down to Temporal Mandibular Joint Disorder and sent me for various facial x-rays and tests but also sent me to physiotherapy as the pain in my body was giving me pins and needles and then numbness in my feet. THe physio gave me two months of work on my back but this didn't relieve the pain. Eventually she referred me to a senior physiotherapist and he looked at my history of pain and then got me to apply pressure using my arms and legs and then pressed about fifty pressure points on my body. 40 of them did nothing but the other 10 sent me through the roof with pain and in areas that really surprised me. He confirmed that each of these 10 areas were areas of pain caused by Fibromyalgia. He referred me back to my GP who said that the Gabapentin and Amitriptyline that was treating my Trigeminal Neuralgia were the same medication as for Fibromyalgia but she also put me on some Co-codomol pain relievers and some Voltorol anti-inflamitaries for when I had a flare up. Since the beginning of last year I have had five flare ups when I have used this extra medication and I feel more able to self-manage this problem. My GP is lovely although admits to knowing little about the disorder. When I have a flare up my whole body aches and I loose strength in my muscles to the point of being unable to hold a mug of tea by myself but these flare ups last on average 8 - 14 days and the use of hot water bottles and as much sleep as possible makes the condition more bearable. I find the Voltorol and Co-codomol invaluable during flare ups. Before one is due I have an unrepressable appetite and my extremities become freezing cold so I am lucky to have some warning. Inbetween flare ups I try to maintain supple through stretching and yoga and this certainly does no harm. It's a horrible condition but made better through the periods of remission when life is normal. I know how lucky I am to have a supportive husband and family and don't know how other people must cope. I should love greater awareness of Fibromyalgia. I was lucky to have had a senior physiotherapist otherwise I suspect it would have gone misdiagnosed causing unecessary worry.

ovendale | 03/05/2007 12:56:00

I suffered FMS symptoms for 15+ years before diagnosis. I had headaches al the time, fatigue, sleeplessness, pain in every muscle group and general debility. I was prescribed co-proxamol for the pain and amitryptyline for nightime. When co-proxamol was withdrawn, I was not offered any alternative other than ordinary paracetamol. I was given a course of acupuncture that was useless. The best treatment that I had was when I paid for visits to a friend who was a chiropractor. He seemed to understand the inter-relationship of all parts of my body. My original problems were caused by playing as a prop forward in rugby and the various strains put on my neck and back. My consultant in the NHS merely said that what I had was untreatable and intractable.

Helen | 03/05/2007 13:17:00

I have suffered from Fibromyalgia for about 10 years but was only diagnosed in the last 4 years when i went for test for atheritis I was told there was no treatment for it other than pain killers for when the pain becomes unbearable and it is not cureable either it will become worse as I get older it does restrict what you can do because you are in so much pain at times I dont sleep properly with it it cause`s all the nerves in my shoulders to get trapped which is very painfull but I do have a great GP who understands the condition very well and is very helpfull when the pain is really bad I do have constant pain all the time you learn how to cope with it and adapt your life style to it you are constantly tired and you cant consentrate on anything I have tramadol painkillers for when the pain is really bad but there is really nothing they can use to treat it you just have to learn to live with it a day at a time

Lisa | 03/05/2007 13:25:00

I have suffered fibromyalgia for years and it started when I was a teenager! Sleep problems, so much pain all over different parts of my body,headaches, face or different parts of my body go numb for a bit and heart palpitations. I go to a good doctor who understands but when you complain they think you are crazy and I was on alot of medicines but currently do not take anything because it aggravates my heart palps so I just live with the pain and try and exercise.

Annie | 03/05/2007 14:01:00

I was diagnosed with FMS Syndrome last year. This has been a very long process for me as I have always had illness’s and experienced long periods of fatigue and depression. I had a mycoplasma when I was eleven and this brought on reactive arthritis and after the infection I had post infection fatigue, this put me out of school for over six months. This lead to me experiencing serious depression, anxiety, eating disorders and having to drop out of school to attend a hospital school. I did manage to go to college and stick at it and I obtained a national diploma in media and moving image, I then decided to work for a year and then go to university unfortunately this didn’t work out for me as I began to become really ill and extremely worried about my health. I had a rash all over my body, it was a horrible pimply rash and I was also experiencing a lot of sickness. I had a test and discovered that I had MRSA of the skin, Chlamydia and the flu this put me out for a very long time and even after the infections and virus’s had cleared up I still felt just as ill and fatigued as I did when I had the infections, I also believed that I had reactive arthritis again. I kept on visiting different rheumatologists I was put through various test MRI Scans, X-rays and blood tests the results were that there was nothing apparently wrong even though at this stage I could barley walk and couldn’t concentrate. After nine months of going through these test the rheumatologist finally referred me to a pain management consultant who diagnosed me with Fibromyalgia. At first I was really relieved as I really started to think that perhaps the pain I was experiencing was just psychosomatic, but I didn’t receive any after care from this consultant which was terrible. The consultant said that he would send a letter out to me and I never received it. Six months later I decided that enough was enough and I have now been re-referred to a different consultant and now I’m going to be 8 weeks of rehabilitation where I’m going to learn techniques on how to cope with the condition. I have also recently been diagnosed with hypothyroidism on top of having Fibromyalgia. I do believe that the NHS has been poor in the past for diagnoses of Fibromyalgia or any type of Chronic Fatigue Syndrome but is beginning to improve. In my experience I do feel that my symptoms were oblivious and therefore shouldn’t have taken so long to diagnose but I have to say that I am really happy with the treatment I’m receiving now.

Lisa | 03/05/2007 14:02:00

I was diagnosed with fms about 2 yrs ago,My G.P was very good at listening but was reluctant to send me to a specialist. I eventually convinced him that there was something wrong so he sent me to the hosp.In the meantime my parents paid for me to see a neurologist who then said it could be fms but it could also be Ms so i had a MRI scan on my brain , lots of blood & various other tests.The rheumatologist gave me injections in the more painful joints then said that there was nothing more he could do but put me on anti-depressants and discharge me. I have been left to cope with this on my own and i am so disabled by it that i can barely walk or do anything else. My medication is now co-codamol,quinine sulphate & lyrica. I still find it hard to sleep and am tired all the time.



annie | 03/05/2007 14:02:00

I was diagnosed with FMS Syndrome last year. This has been a very long process for me as I have always had illness’s and experienced long periods of fatigue and depression. I had a mycoplasma when I was eleven and this brought on reactive arthritis and after the infection I had post infection fatigue, this put me out of school for over six months. This lead to me experiencing serious depression, anxiety, eating disorders and having to drop out of school to attend a hospital school. I did manage to go to college and stick at it and I obtained a national diploma in media and moving image, I then decided to work for a year and then go to university unfortunately this didn’t work out for me as I began to become really ill and extremely worried about my health. I had a rash all over my body, it was a horrible pimply rash and I was also experiencing a lot of sickness. I had a test and discovered that I had MRSA of the skin, Chlamydia and the flu this put me out for a very long time and even after the infections and virus’s had cleared up I still felt just as ill and fatigued as I did when I had the infections, I also believed that I had reactive arthritis again. I kept on visiting different rheumatologists I was put through various test MRI Scans, X-rays and blood tests the results were that there was nothing apparently wrong even though at this stage I could barley walk and couldn’t concentrate. After nine months of going through these test the rheumatologist finally referred me to a pain management consultant who diagnosed me with Fibromyalgia. At first I was really relieved as I really started to think that perhaps the pain I was experiencing was just psychosomatic, but I didn’t receive any after care from this consultant which was terrible. The consultant said that he would send a letter out to me and I never received it. Six months later I decided that enough was enough and I have now been re-referred to a different consultant and now I’m going to be 8 weeks of rehabilitation where I’m going to learn techniques on how to cope with the condition. I have also recently been diagnosed with hypothyroidism on top of having Fibromyalgia. I do believe that the NHS has been poor in the past for diagnoses of Fibromyalgia or any type of Chronic Fatigue Syndrome but is beginning to improve. In my experience I do feel that my symptoms were oblivious and therefore shouldn’t have taken so long to diagnose but I have to say that I am really happy with the treatment I’m receiving now.

Patricia | 03/05/2007 14:03:00

I was diagnosed with fibro several years ago and I am lucky that I was already seeing my rheumatologist for RA and he is also an expert in Fibro - having written a book on it. I take Xanex to help sleep along with MIrapex which is originally prescribed to Parkinson's patients. It does help with the sleep. I am in a bad flare now with swelling and pain and sometimes it is hard to tell if it is the RA or fibro...........I still work fulltime but sometimes it is really hard to hang in there..............If anyone wants to read about this Dr, he has a website called www.drdryland.com It may help someone..............

lou18404 | 03/05/2007 14:06:00

i started off with painful knees when i was about 12 at first i was told they were growing pains but 5 yrs later they decided to operate and i had lateral releases on both knees. that didnt work so 2 yrs after that op i had another op on my left knee and i ended up in plaster for 6 wks same again didnt work. about this time i was having pain in all my joints and when i went back for my check-up at the hospital for my knee the doctor told me they'd operated for my peace of mind so i went through 2 painful knee ops for nothing. obviously i was not happy so my consultant referred me to a ruematoligist (? spelling) and it was he who diagnosed fibromyalgia. a few yrs ago i was sent for tests to see if id got carpal tunnel syndrome but again part of my fibromyalgia. the amount of different painkillers ive tried none of them really work apart from co-proxamol but now they've withdrawn it so i tend to grin and bear it.

Dawn | 03/05/2007 14:13:00

I have had muscle pains since I was very young ,around the age of 10.I am now 48 years old. I was diagnosed as having fibromyalgia in 2002 but it has got worse over the years. I have visited many doctors over the years and I can honestly say that the vast majority of them have been very unsympathetic. I have never been sure that I had fibromyalgia as my symptoms are quite different from others that have the illness. I do however have problems sleeping as I have arthritis of my spine so I am not surprised that I am constantly tired. I do get rather annoyed when the doctors suggest taking anti depressants because it makes me feel that it is psychosomatic. I don't think that I will ever be 100% again as I have spent eleven years looking for a solution to this illness and I am no further forward.

Neil uk | 03/05/2007 14:37:00

I was dx with FMS Jan 2006 after 3 years of chronic insomnia and chronic pain in all muscle groups my GP telling me I was suffering from either a viral infection or stress. over a 3 year period proir to dx I was sent away by GP's 5 times and was made to feel like a hpyochondriac. eventually I seen a different GP and was referred to an Endocrinologist who discovered I had autoimmune hypothyroidism, primary gonadatrophic disease which is the underlying cause of my FMS. It has been an uphill battle and a very trying time. The Fybromyalgia network offer support and have a lot of information on their web site I would recommend this to anyone struggling with this chronic disease.

Mandy | 03/05/2007 14:45:00

My husband has suffered from pain and spasms in his lower back for over 10 years. He believes his condition was brought on by falling out of a tree when he was 16, he didn't suffer any significant injuries, but the pain never went away and the curve of his back would disappear. He went to his dr when he was 19 and was told his symtoms were due to him being underweight and was advised to exercise and to eat more. A second appointment attributed it to the fact that he smoked and he was told to give up. Until he met me, 6 years later, he'd given up seeing the dr, but I encouraged him to go as I could see the pain was very intense, and what followed was a series of blood tests, urine tests, x-rays and ultrasounds - all without fail showed nothing wrong. One dr even suggested councilling. None of them would refer him to the pain management clinic like we requested and just prescribed a catalogue of painkillers - strong paracetamol, co-codamol, diclofinac - all of which would work for a couple of weeks then the pain would return stronger. It wasn't until we moved house, and joined a new surgery, we went to see our new dr because I was expecting our daughter, and casually mentioned my husbands back, Dr Sinclair looked for about 30 seconds and anounced my husband had fibromyalgia and showed me how the back stuck out at the site of the spasm. He asked my husband to make an appointment for a weeks time, so he could have some time to research the condition and come up with a treatment. He prescribed a very low dose of amytriplene, and told my husband to come back in 6 weeks to tinker with the does if it wasn't quite right. After 3 months they finally got the dose right and he had another 2 months of no pain, until he went back for a repeat prescription and found Dr Sinclair was off long-term sick and had to see another dr, she upped the dose even more. A month later my husband returned complaining of cheast pains and was immediatly taken off the amytriplene and sent to the heart clinic to be checked, the tests showed minor fluctuations in the heart rhythm and the drs there advised that amytriplene was the cause as it is nortorious for causing heart palpatations. The new dr he started to see readily admited she knew nothing of the condition and prescribed diclofenac in a much higher dose, which did not work and my husband refused to take it. When we moved again the next dr refered him for physio which left him in worse pain than before he went. He now has occassional Reki sessions which seem to help for a couple of days, takes paracetomol or co-codamol so he can sleep if it's really bad. He also goes to a support group for fellow fibromyalgia suffers but it has scared him that he's going to get worse with age. My experience with the medical profession is that half of them have never heard of it and the other half don't believe in it. It's very rare to find a dr who really wants to help.

jinny | 03/05/2007 14:45:00

I was diagnosed with FMS 4 years ago after what I could only descibe as 'bone pain' to my GP and feeling as if I was wading through water when I walked, also very tired. I was sent to see a Rhuematologist who diagnosed FMS after applying pressure to 10 trigger points over my body - which was very painful, also had some bloods done. I had to give up work 18 months ago after my employers applied pressure as I was having to have so much time off work as I could hardly stand up straight some days and had to use a stick to help me walk around the office. The pain doesn't get any easier and if I do anything which is out of my 'routine' it flares up really badly and lasts for days on end. People don't understand how painful it is because you usually look well unless you've been awake all night! I just get by on painkillers and have slept 100% better since being hypnotised to stop smoking!! I don't think a lot of Dr's fully understand FMS and some see it as malingering but just give them one day of the pain and they might change their minds! I suppose research is the only way forward for a better diagnosis but is anyone taking FMS seriously enough in the medical profession?



Jimmy | 03/05/2007 14:46:00

I was diagnosed with fibromyalgia "Syndrome" in 2000, after I moved house and changed my GP. For more than 8 years I had suffered from all the symptoms outlined in the above comments from other sufferers, without any Diagnosis. I had joint problems and pain in my back, neck, hip and knees for years , slowy worsening, when in 1994 I was involved in an armed robbery.(Shotguns) . From that day, my various symptoms rapidly worsened until I was almost immobile and suffered from bowel problems (Undiagnosed although I underwent a multitude of tests) Proper restful sleep was impossible and I was totally shattered physically constantly with no let up.Sciatica and heart palpitations were and still are common everyday symptoms . Pain became unbearable all over my body and was especially bad in my lower back and neck areas. despite returning relentlessly to my GP I was diagnosed finally (I think in desperation ) as suffering from FMS after a multitude of tests excluded all other diagnoses. I was happy at last that I could put a name to the illness which was causing me so much difficulty and which had led to my life changing dramatically. From being superfit and playing rugby and football etc. I couldn't walk more than a few yards without pain affecting me so badly that I actively tried to avoid walking at all whenever I could. For the past couple of years i have tried very hard to walk whenever I am able and am now much better and can walk longer distances , although still in considerable pain.I would advise others to try as hard as they can and never give in to the pain. I live in the UK and around 1997, benefit rule changes altered the way we FMS and ME sufferers were viewed . (Hence the references above to psychosomatic links by some GPs ). I have had nothing but hassle since from the benefit agencies. FMS symptoms are mostly "Invisible" to all but the sufferer (and his/her close family) and scepticism is rife in the medical practitioners and benefit assessors etc.I have come across. After all FMS is mostly a womens' illness. With the recent tightening of the benefit rules yet again , in the Government's drive to get at least a million claimants back into work, we Fibromites are bound to be targeted for specail attention yet again. I sometimes think that even if a simple positive medical test for FMS became available tomorrow , some would still refuse to believe that the Syndrome is a real condition. My diagnosis was only detemined following more than 6 years of tests for all manner of other problems, ranging from diabetes through cancer to degenerative disc disease and heart problems . Hence the long delay in exclusion to determine the real cause,(FMS) which is still not well understood and is still not accepted by a majority of the medical profession in the UK. Things may change eventually, but I wouldn't bet on it at the moment. Take Care Jimmy

much better now | 03/05/2007 14:46:00

It has taken me a couple of years to get back on my feet. First, I had an doctor led elimination diet, and found out that wheat, citrus, beef and a few other migraine triggers were biggies for me. Next was going after diagnosis, and this finally led to decent pain medication. It took me a few years to build up my strength, and I have to follow my diet religiously, but I am finally going to school, and working part time. Always balancing my health is my priority, but it is worth it for the results. At one point I was bed ridden. Now I am back at university looking to my future. There is hope.

jillian age 51 in u.k | 03/05/2007 14:48:00

i have suffered from FMS for 14 years now,it first started in my hands & wrists & the Dr said it was repetative strain due to my job as a canine beautician ( clipping,scissoring,grooming & bathing dogs) my children were fairly young then(youngest 8yrs old) so when it started affecting all over my body it limited what i could do at work & home with the children, i spent 5 yrs going back & forwards to my Dr till i offered to pay privately to see someone as the NHS waiting list was about 12 months to see a specialist, i saw a rhumatologist at local nuffield hospital who diagnosed reynauds syndrome & osteoarthritis, luckily for me a good friends son was a naval Dr & when i gave him a list of symptoms he diagnosed the FMS & persauded my Dr to let me see a naval rhumatologist with a great reputation, the diagnosis was confirmed when i saw him & he prescribed painkillers & amitryptyline to help me sleep, but i found they made me into a zombie & i now take dosulepin at night & my head feels fine when i wake up, i also take eccoxolac( 12 hr slow release pain killer) & take 3000mg co-codomal (TYLEX) every day, i try to keep doing every day things but it is very difficult, it hurts to sit in one position for very long, it hurts to stand up, walk & worst of all lying in bed, the sleeping pills help as they also work as a muscle relaxant but when i do go into a deep sleep i wake up with muscle spasms & cramps because i havent been moving!!!!i have to use a walking stick as my knees can give way & i am fed up with falling over :o( after 12 yrs of fighting i now have enough disability money to entitle me to a motability car, i can't drive very far myself but just to ba able to get to local shops is great, good luck to all of you who suffer with FMS & all the other problems that come with it, one day a cure will be found ( i hope), keep fighting with the Drs till they learn more about it & spread the word

davidy | 03/05/2007 15:52:00

I was diagnosed by the pain clinic consultant. I have severe and universal arthritis for which he saw me. I told him I was suffering quite severe muscle pains particularly if I was in a draught.He immediately said I had Fibromialgia but that as I also have heart problems I was not suitable for his Lignocaine infusion programme that was the end of his interest.I told my G.P. asnd he said there is no such illness as Fibromyalgia.Since I have seen many people have the infusion course and almost all say that apart from the 6 days rest it was of no help I have just accepted the pains as I do the Arthritis but at least I get injections and surgery for that.No painkiller works for either condition except for Paracetamol which takes the edge off the pain.The same Pain Clinic Consultant refused to give me joint injections as a combination of Atrial Fibrillation and Anti Phospho lipid syndrome means that I occupy a bed for 8 to 10 days for injections, a more aware surgeon gives me spine injections without interfering with my Warfarin and in his care I am only in bed 2 or 3 days.As far as Fybromyalgia is concerned I have given up.

Tezamb | 03/05/2007 16:19:00

Just reading some of your blogs I was a bit confused about the name of the condition that I have and as yet it has not been diagnosed by my G.P. he has put it down to wear and tearI only have pain killers to take for my Arthritis (I have even forgotten the name of that sorry) I was recently making pastry for my daughters engagement party then the pain kicked in with a vengence between my right thumb and wrist (I broke it about 25 years ago) and now it feels as if I have broken it again just by making my own pastry I havent been to see my doctor about it as I am hoping it gets better in time anyway they say time is a great healer LOL I am acheing in so many joints I dont want to go to see my G.P. as he might think I am a mallingerer and I wouldnt know where to start to explain to him where all the points that are inflamed

Graham age 46 UK | 03/05/2007 17:12:00

I have suffered with FMS for over 31 years, I think the trigger for me was the constant beatings that I suffered as a child as I had my first pains when I was 15. I was miss-diagnosed with many illnesses but was not happy with them as when I researched them they were different to how I felt, so 14 years ago I asked to see a Doctor from a different clinic, he did lots of tests and examined me for 30 minutes, much longer that the other doctors 5 min. I suffer very bad, and my sister who also has FMS also went through a similar thing. I am now unable to work as as well as the FMS I have Arthritis, diabetes and neuropathy in my hands and feet. The FMS is the worst of the bunch, as it is not only the pain but the extreme fatigue that ruins my life, my day lasts for about 8 hours and then I am in bed again totally worn out. I have lost my hobbies as I am too weak, golf, motorbikes, sea fishing and gardening. One good thing is that I have been able to use the time on my hands to undertake a Fine Art Degree in textile/mixed media, I am still on it part time, and the tutors are great and understand quite well, and also I have met many friends on the course, one who also has FMS. I also over the years have been called a mallingerer, lazy, good for nothing layabout, but if thoes people really new me they would think different, as I can assure everyone, it is no fun on benefits of about £7000 a year when healthy I would be on £30K plus.I get quite angry as I have no social life, my wife and kids have gone without so much all because of FMS.

cheryl | 03/05/2007 17:21:00

I was very fortunate-was diagnosed with FMS at much the same time as my osteoarthritis,which shortened the struggle that some of you have had considerably!was already on strong painkillers(dihydracodeine) and anti inflammatories,but after various trys at other medication found that only amitriptyline really works,and that only for help to sleep at night. am also just undergoing tests for lupus. am lucky,have a fantastic GP,its the consultants I have the problem with! am 44,and have had to give up a job I loved after 27 years,and thought the days of having to have everything wrong with me in black and white to convince my employers that I really was ill,were over-but then start trying to get benefits!! I get IB,but have already been turned down for DLA,after a long appeal,on the basis of a visiting doctor who saw me for about 15 mins! whilst I have not come up against the practical denial,or misdiagnosis that some of you have,I know how difficult it is to get across to people in general just how bad you feel with this condition,and have all but given up.am currently attending pain management sessions,which I hope will help,but to be honest,dont hold out much hope for the long term. whilst I think FMS is becoming more widely recognised,I think its time the powers that be realised that this illness is not just physically crippling,but also financially,and am tired of reading stories about the fight we have to get this recognised as a genuine disabling condition.



Su | 03/05/2007 17:51:00

FMS is a well documented and genuine ailment. I can not for the life of me understand why it takes most doctors a long time to diagnose it.When you go into the surgery and explain the about te pain and suffering that you are going through, they look at you as if you were mad. The symptoms are more than obvious, The pain is very, very real. Surely they can diagnose FMS a little more quickly, so that us sufferers don't have to wait years for the medical proffesion to treat our illness and not look at us as if we were imagining the pain or wasting their time or putting the symptoms down to and treating us for stress or depression. Yes we are going to get depressed, It is hard to live with pain, sleepless nights, lethargy, headaches etc, with out them thinking we need psychiatric help too. Sorry about the moaning on, but I was eventually diagnosed as a sufferer about 10 months ago after 4 years of pain and trying to convince my Dr that it was not my imagination. I can see by reading other blogs, that we have all have a similar story when it comes to being diagnosed.

Lynn age 49 in UK | 03/05/2007 17:59:00

I was diagnosed with FMS in 2001 after an accident at work resulting in a serious back injury. I have pains all over my body from my head to my toes, all my joints. The pain is like a constant toothache. I am tired all the time and have to pace myself carefully. My knees give way even if only standing, I have severe cramps and spasms in my legs ,which are very painful. I also have wasting to one leg now. I have trouble with my coordination and I tend to drop things easily, due to lack of strength and pain in my wrists. I find it hard to concentrate, I have trouble remembering things, I have trouble sleeping.My life has completely changed. I have gone from an active Deputy Manager to a wreck. I now survive on incapacity benefit as I have been told I can no longer work. I applied for mobility to help with getting around etc. only to be told I do not qualify.The doctors don`t seem to understand how a person with this condition feels or how it affects their lives( everything is an effort) they prescribe strong painkillers (Kapake) and arthiritis medication ( arthrotec) neither give relief for long.I have been prescribed numerous drugs to help with sleep but I wake up feeling so drowsy.My gp is now treating me for depression due to my anger ( a result of my accident and the condition I now have) it seems most of the time he uses this as an excuse not to treat my FMS. As other suffers have said gp`s in the UK do not understand the disease so therefore to them it does not exist. I have had this for 7 years now and have been told it will get worse , I was told it cannot be cured but can be managed. The one thing I have found that has helped me , is to cut down on red meat and eat more fruit and vegtables.I feel for all other FMS sufferers as I know how frustrating and painful this disease is.If we had a broken leg, arm or some disfiguration etc. that could be seen people might listen to us but muscle pain and constant tiredness cannot be seen and therfore go unrecognised.

BevAnn | 03/05/2007 18:07:00

My Fibro surfaced after I had an awful medical situation. I had been married for 4 months when I started having pain and trouble walking. By the time I found a Dr to take a look They found 3 grapefruit size tumors in my abdomen. Of course the first thing the doctors said was it is cancer. They told me it was lymphona (sp) and had my appointment with the oncologist set up. Well after the Surgery on a Sunday I was told they were only cyst. What a horrible week. Oh yea during this time My New Husband had to take care of my daughter who was in the 3rd grade. Well after that I went to so many Doctors and no on would believe me. My Doctor finally convinced my husband that it was all in my head. So from that point on I suffered in pain!! and in silence...... I first heard of Fibromyalgia in 2000 and when I read about i I started saying hey this is me and so is this and this and so on.....Well my Dr sent me to a ruhmey who diagnosed my fibro and I have felt so relieved since then. None of my symtoms are gone but at least I know it's not in my head. The problem I have now is mainly the pain.... I can not get relief from the pain and the depression is horrilble. But I just keep going on....

Rebecca Reed | 03/05/2007 19:46:00

I was diagnosed in November 04, I thought that i had won the pools, only to realise that my fight had only just begun. I have suffered for more that 15 years with various types of muscular problems, but i started having awful pain in 2003. I went to see my GP, i was depressed, i needed counciling, i was given anti depresion meds, the pain got worse, i went to see a different gp and he told me to look at "Medically unexplained symptoms" i found fibromyalgia, it was me who diagnosed my condition and then had to fight to see a specialist, i saw 2 and paid for 1, i was unable to work although i still work for the same employer now, they have been very good, i count myself as lucky. Myself and a couple of other sufferers started a support group, we realised that we had a very long fight to get this condition recognised. there are no meds that work for me, although i am willing to try anything. I feel personally that i am better working and feel sad there are so many who cannot work. If i keep moving i feel better. I waited years to get i diagnosis, I developed a very bad flu and was very ill with the most awful pain from then i felt like i did not want to live, i could not cope but now feel more in control. I would like the medical proffession to be more understanding and have more education on this condition. The condition horrible, we cant afford to live without working and the condition is so painful that we cannot work. We are never awarded DLA and have to fight every step of the way. Its not fair.

Naomi | 03/05/2007 20:29:00

i am from south england and my hunt for a diagnosis started when i was 14 years old. my doctor was very unhelpful and often said it was all in my head. no matter what symptom i described his only answer was to try to force antidepressants on me. i finally got him to refer me to a specialist when i turned 16. they diagnosed M.E. and wrote to my doctor who actually laughed saying that it was a fictional illness. at that point i became so deressed and ill that i stopped going to my unhelpful doctor resoning that there was no point. when i turned 22 i changed doctors (why i waited so long i have no idea) and the new one listened to me and said it sounded more like fibromyalgia because i was in constant debilitating pain, so he refered me to a specialist where i gained my diagnosis and at last some understanding! only 8 years of suffering alone! i am now 23 and have a good relationship with my doctor and my specialist and although i have not significantly improved, i am at least feeling happier and more understood. nobody tries to tell me its all in my head anymore either. i am still having ongoing problems with benefits as i am too sick to work, but cannot seem to get disability living allowance awarded as they dont seem to accept fibromyalgia as a disabling condition. i am awaiting a form for a disabled parking badge and am reapplying for DLA. fingers crossed.

joyce | 03/05/2007 22:18:00

i was diagnosed with fibromyalgia in jan. 2003 possibly brought on by breast cancer and subsequent treatments. so i was told,surgery can bring on the condition or sudden trauma. i was only diagnosed because a blood test came back saying i might have lupus. i saw a rheumatologist and he retested bloods and checked various points on my back and came up with the diagnosis of fibromyalgia. i was referred to my gp. for treatment and given amitriptaline and pain killers of which there have been many. i am currently taking naprotec which are ok but dont relieve all the symptoms like the others i am in pain most of the time but have to get on with life. i am just finishing a ba.(hons) in fine art its been hard but worthwhile.

sarah scriven | 03/05/2007 22:41:00

i myself have so called fibromyalgia all though i think its just a poor excuse for we dont know what is wrong with you and you are costing us money! when i was diagnosed all the doctor did was prod my back in a seven places said you have fibromyalgia slid a leaflet accross the desk and that was that i have never had any aftercare and quite frackly just get treated as a hypocondriac when i go to my gp i see that some one else mentioned DLA well ya just cant get it for that cos the symptoms are not seen by the naked eye there for there is not a problem!



Katy | 03/05/2007 22:44:00

Due to various medical problems, I had a hysterctomy at the age of 32, in 1993 and, within 6 months, started to get severe pains in my major muscle groups, and various joints. For five years my condition gradually got worse, with the final straw being the collapse of my knees at unexpected moments, which would leave me face-first on the pavement! In all that time, my doctor did blood tests and, because they came back clear, told me it was all in my head. I was in despair, when a friend suggested that I change surgeries, which I did. Within a month of being at the new surgery, I had an appointment with a rhuematologist who, after going through my medical record, and spending ages examining me, declared that I was suffering from Fybromyalgia, brought on, he is almost certain, by the anasthetic from my Hysterectomy! I have spent the last 14 years desperately trying to find a combination of drugs that will help relieve the pain I am in and, up until 6 months ago, was on a combination of co-proxomol (my chemist can still get it) and amatryptiline (which was then changed to Nortryptiline due to side effects from the amatryptiline), with morphine when things are really bad. Unfortunately, 6 months ago, I had a flare-up of Lymphodaema, which meant that I had to stop taking my fibro medication, as it was exacerbating the lymphodaema, which meant that the fibro is back hard and furious. I also suffer with Carpal Tunnel Syndrome, and am waiting for an op. to relieve it but, unfortunately, am not allowed to have any more cortozone injections to relieve the pain, as too many can cause brittle bones - so, here I am, 46 years old, and almost permanently bed-bound with the constant, agonising pain of fibro, lymphodaema, and carpal tunnel! I am on 2 x 300mg co-codamol, and 1 x 600mg Ibuprofen every 4 hours, but it barely helps with pain relief at all. I have severe problems with sleep, as I'll just drop off, and a flare of pain will wake me again - I'm lucky if I get 1-2 hours in a 24 hour period. I don't know how I would have coped without my husband, as he has to do everything for me (even get my tablets, as I haven't got the strength in my hands to push them out of the bubble pack). It is especially good of him, as the constant pain I am under has affected my libido, and our marital relations are now non-existant - it shows what a loving, kind man I married, and I thank god every day that I have him here to help me. When we married, and gave the vows 'in sickness and in health', little did I realise just how much of the 'sickness' my poor husband would have to deal with - and I love him even more for coping with it all. A friend of mine, who is into natural heling, recommended that I try knotweed tincture and B complex tablets, as both are supposed to help relieve fybro and carpal, so I started on them this week, in the hopes that they MAY help a little - who knows, miracles do happen sometimes!

Jo - UK | 04/05/2007 00:04:00

I think the main reason it takes so long for doctors to diagnose fms, is that the are deliberately reluctant because they don't know how to treat it! I went backwards and forwards to my gp a few years ago with chronic pain in my shoulder after sitting in a draught at work. Each time I went he just prescribed more painkillers, which although they took the edge off, they turned me into a zombie, and the pain was just getting worse and I was having to take more and more. I was sent for x-rays and blood tests but nothing could be found. Eventually, as I was lucky enough to be covered by private healthcare at the time, I asked if there was anyone he could refer me to. I went to a rhuematologist who diagnosed me. I was so relived. Knowing what I know now, I can trace it back to when I was eleven and had "growing pains". I have also been treated in the past for pms, and sinus infections that refuse to go away! When diagnosed I thought it explained so much of my past, and that the future would now be better - silly me! Anti-depressants were prescribed, to help with pain, these just made me buzz, these were changed, the dose got heavier, and I got more and more depressed and zombie like. I went back to the doctor who said he could do no more for me and referred me to a psychiatrist! I went and it helped. Unfortunately, I had so much time off work, and they were making redundancies, so that was the end of private healthcare. I went back to a different gp, who just started again with the first medication (amiltryptilene), funny enough, it didn't work that time either! I went on a rehabilitation course, where excersises are designed to meet your needs. This was suggested by my local job-centre. It was beginging to work, but due to bouts of depression, I missed three sessions (not consecutive), and the rules are that I had to leave - so much for meeting your needs! I have been back to my gp, and what do you know, his suggestion was "lets start from the begining"! On the way out I tore up my prescription for amiltriptylene and haven't been back! As far as benefits are concerned, I am on low rate disabilty and nothing else. I have tried to claim a higher rate, twice, and appealed, and got nowhere. If I could claim the higher rate, my husband could claim carers allowance and would be able to stay at home with me. When he is at home, I am less anxious and depressed and find it easier to cope all round. If only authorities would understand this. I think when I applied for a higher rate that my doctor said he wasn't treating me (because I had given up going!) and that is why I was refused. I know very little about the system and would appreciate anyone else's comments on this. Good luck to everyone with this condition - does anyone know of a list of doctors who specialise in this condition?

Clare Burch | 04/05/2007 00:11:00

I was diagnosed with fibromyalgia in August 2002, although for many years I had suffered from a number of different complaints which the diagnosis pulled together. My trigger was stress, my ex husband attempted to murder me with a samurai sword in 2001, my son had 4 lots of brain surgery in 2002, and then I underwent a minor knee op which left me unable to walk for 6 weeks. Due to the extreme reaction to the op, i was referred to my rheumatologist who diagnosed me straight away. It was a relief to find an illness that covered everything. he is very knowlegeable about the illness, and has referred me for anything that I have asked for. I followed a living with pain course, had oysio and hydrotherapy, now I have rehluar steroid injections and acupuncture from my physio dept which works well. I am plenty of meds, dihydrocodeine, tramadol and celebrex for pain and swelling, oxybutynin for bladder probs, protium for the stomach and venlafaxine, an antidepressant that also acts to relieve pain. Be aware that many GP's will prescribe antidepressants but a lot, such as amitryptilline, seroxat and efexor also help control pain. I had to give up work as a private tutor as one of my worse symptoms is that I say the wrong words when having a bad day. Not much good when you are teaching! The tiredness is a problem, however I now live with the condition rather than fight against it. i have found my body prefers to sleep from about 3am to 10am, so I go to bed very late. If I need to sleep in the afternoon, I do. On a bad day, I don't move much from my chair. I have had 2 carpal tunnel ops on my wrists, and am awaiting another for a trapped nerve in my elbow. Every day around 3pm to 4pm, I get extremely cold, even in the summer, and get lots of pain in my ankles. 6 months ago I went to Mexico, and was 100% better out there. I could even walk without a stick, which I can't do here. I snorkelled, went scuba diving, swam with dolphins etc. things I thought I would never be able to do. Unfortuantely as soon as I came back here to the cold and rain it all flared up again. I have been getting Disability Living Allowance, I have had it for the last 5years, mainly thanks to my rheumatologist. If anyone needs help with the forms, email me and I will help. My son suffers from hydrocephalus and Chiari malformation, a condition which compresses the brain and spinal cord, yet following surgery, his symptoms are very similar to mine and there is research being done to see if there is a link between fibro and Chiari, also if there is a genetic link. I am now single, my boys are 17 and 18, so I don't get much help from them. I have learnt if things aren't done, don't strees about getting them done, do what I can do. I know that some things will give me a bad day, so I only do them if I am feeling really good (such as gardening, which I love). I recently started voluntary work for the Cats Protection League, which has given me a purpose and also made me a lot of friends, who understand that I am ill, and there is no pressure. I do believe that is helping me to feel better.The medical profession do need to be more infromed about the condition, I was lucky with both my GP, rheumatologist and neurologist, and take note, fibro is now recognised by the DLA board as a medical condition. Yes, I have a bad disease but I wont let it ruin my life any more.

Lisa 5-3-07 | 04/05/2007 00:12:00

I was diagnosed with fibro 5 years ago and it started when I was a teenager. It is very hard because I have many symptoms. People look at us and say we look normal but we dont feel well. I hurt everyday and not on medicine because it does not seem to work.

Clare Burch | 04/05/2007 01:09:00

I was diagnosed with fibromyalgia in August 2002, although for many years I had suffered from a number of different complaints which the diagnosis pulled together. My trigger was stress, my ex husband attempted to murder me with a samurai sword in 2001, my son had 4 lots of brain surgery in 2002, and then I underwent a minor knee op which left me unable to walk for 6 weeks. Due to the extreme reaction to the op, i was referred to my rheumatologist who diagnosed me straight away. It was a relief to find an illness that covered everything. he is very knowlegeable about the illness, and has referred me for anything that I have asked for. I followed a living with pain course, had oysio and hydrotherapy, now I have rehluar steroid injections and acupuncture from my physio dept which works well. I am plenty of meds, dihydrocodeine, tramadol and celebrex for pain and swelling, oxybutynin for bladder probs, protium for the stomach and venlafaxine, an antidepressant that also acts to relieve pain. Be aware that many GP's will prescribe antidepressants but a lot, such as amitryptilline, seroxat and efexor also help control pain. I had to give up work as a private tutor as one of my worse symptoms is that I say the wrong words when having a bad day. Not much good when you are teaching! The tiredness is a problem, however I now live with the condition rather than fight against it. i have found my body prefers to sleep from about 3am to 10am, so I go to bed very late. If I need to sleep in the afternoon, I do. On a bad day, I don't move much from my chair. I have had 2 carpal tunnel ops on my wrists, and am awaiting another for a trapped nerve in my elbow. Every day around 3pm to 4pm, I get extremely cold, even in the summer, and get lots of pain in my ankles. 6 months ago I went to Mexico, and was 100% better out there. I could even walk without a stick, which I can't do here. I snorkelled, went scuba diving, swam with dolphins etc. things I thought I would never be able to do. Unfortuantely as soon as I came back here to the cold and rain it all flared up again. I have been getting Disability Living Allowance, I have had it for the last 5years, mainly thanks to my rheumatologist. If anyone needs help with the forms, email me and I will help. My son suffers from hydrocephalus and Chiari malformation, a condition which compresses the brain and spinal cord, yet following surgery, his symptoms are very similar to mine and there is research being done to see if there is a link between fibro and Chiari, also if there is a genetic link. I am now single, my boys are 17 and 18, so I don't get much help from them. I have learnt if things aren't done, don't strees about getting them done, do what I can do. I know that some things will give me a bad day, so I only do them if I am feeling really good (such as gardening, which I love). I recently started voluntary work for the Cats Protection League, which has given me a purpose and also made me a lot of friends, who understand that I am ill, and there is no pressure. I do believe that is helping me to feel better.The medical profession do need to be more infromed about the condition, I was lucky with both my GP, rheumatologist and neurologist, and take note, fibro is now recognised by the DLA board as a medical condition. Yes, I have a bad disease but I wont let it ruin my life any more.

Laurie | 04/05/2007 01:29:00

I had symptoms of fibro even in childhood, especially in my teen years. In my 20s i had pain in my back that caused an "itching" in my bones. I've had difficulty with sleep all along. In my 30s the pain increased, but when I hit 40 it was as if a timebomb had gone off. I worked as a Registered Nurse, and cut my hours down until I could no longer work, and have been on disability for 4+ years. I have pain in my legs and lower back and buttocks such that I am unable to stand or walk, and sometimes use a wheelchair. I take large doses of gabapentin (800mg 3-4 times per day), limbrel, oxycontin, percocet, cymbalta, clonazepam, and prozac, all for pain and depression. i am turning 46 this month. i have had mri's of my brain and spine which so far have shown no irregularities. I have tried antifungals and antibiotics and antiviral medications as my levels for herpes zoster and others were elevated, with no improvement. I have broken my left ankle 3 times in the last 2 1/2 years from falls, but thankfully my bone density was normal even though I am having a devil of a time healing from this last fracture. My orthopedic doctor is respectful of my problems, but my rheumatologist and most other doctors are extremely dismissive. I have a wonderful psychiatric nurse practitioner who provides most of my medications except for oxycontin and percocet, which my rheumatologist begrudgedly prescribes for me. 3 years ago I was doing quite well after several months of massage 2-3 times per week, which was very expensive; however, I don't get much improvement with massage lately. I have gained 65 pounds in the last 5 years, although I eat very little (but I get less and less exercise as time goes on because I have more and more pain). Thank God I have a family and husband, all who are very supportive, or else I don't know what I'd do.

Heather | 04/05/2007 06:31:00

I had a car accident 9 years ago and that was followed up with a year of osteopathy. I never really fully recovered and I'm sure it was after this time that it all started. In 2004 I was seen by a rheumatologist and diagnosed with M.E as I had little pain at this stage. However the pain I did have gradually increased to intolerable levels and I was referred by my G.P to a musco-skeletal clinic. I had some osteopathy which this time did not help, in fact it appeared to hinder me more. I started researching my symptoms in 2005 myself and effectively self-diagnosed. I went back to see the doctor at the musco-skeletal clinic with my findings and he agreed. He checked out my pressure points and I found i had pains in more places than I had ever realised. When he squeezed my knees he had to pull me back out of the ceiling! My G.P's have been great. I have been through every dose of amitriptyline to no effect, and settled on regular diclofenac and co-codamol, until another dreaded car accident last October and now am living in eternal hell. I am on pain killers which are never fully effective, I am exhausted the majority of the time. I guess this is all compounded as I am completing a degree at present which I refuse to give up on. I have children and dread needing to 'stop everything'. It would be easy, especially some days just to give upp and take to my bed but I fefuse to give in. So i carry on taking the tablets in the vain hope that one day I might just be pain free. Ha-ha! Incidentally I did seen a homepath last year following my car accident and his findings were not fibromyalgia bu toxic poisoning from swimming in the greek sea when I was seventenn - needless to say his prescriptions didn't work either. So there we are - this is my story. Thankyou for letting me share it with you.



Heather | 04/05/2007 06:48:00

I was finally diagnosed in 2005 through a musco-skeletal clinic. All the symtoms except for a little less of the pain started following a car accident 9 years ago. I saw an osteopath for a year and in 2004 was finally diagnosed with M.E. Pains got worse, much worse until they were barelt tolerable. I was referred for osteopathy again through the musco-skeletal clinic which this time only hindered me and appeared to make my problems worse. I did some research and presented my finding on F.M.S to the doctor at the musco-skeletal clinic. He agreed with my self diagnosis. He checked my pressure points and had to pull me back out of the ceiling when he squeezed any where near my knees. I have very understanding G.p s one of whom really knows her stuff about fibro. I suffer headaches, exhaustion, eye drop (going down the motoway has been hazardous at times!) pains everywhere and some days feel like a complete whinger and hypochondriac because I never seem to stop complaining. But I refuse to give in. I am completing a degree in public health nusring and it is this and the kids that keep me going. Incidentally I did see a homeopath last year following a car accident which severly exacerbated my condition. He believes that I don't hane fibro, just toxic poisoning from swimming in the greek sea when I was 17 - lol. I now take diclofenac, paracetamol and tramadol throughout the day but still experience pain. I live for the day when I am pain free and can get up in the morning feeling refreshed!! Thanks for listening to my story.

Caroline Cutting | 04/05/2007 07:35:00

It took 13 years before i was properly diagnosed with FMS. After that i was continually fobbed off with drugs which did nothing but make me feel worse.Before i was told i had FMS i was diagnosed with everything from Rheumatoid Arthritis to Osgood Slatters disease.My G.P was brilliant but the Rheumatologist just wanted to get rid of me.I signed myself off with them 2 years ago, i still suffer with the supposed short term side effects of the cocktail of drugs i was given when i was seeing the Rheumatologist.On the up side i did manage to secure the low rate of DLA.

Mc in Tassie | 04/05/2007 11:07:00

Diagnosed FMS in 2002 whilst living in USA - on return to Au and seeing the local medical establishment .... I have become diss-alusioned by it all! Four docs have thrown me out - telling me Fibro is not a real diagnosis - 'get a real diagnosis' is what I have been told.......... as far as being offered pain relief - paracetamol is suggested.... I finally got a referral to see a big time rheumy, after a six month wait for the apppointment - he agreed I probably have FMS, and he will advise my GP etc.... he has prescribed 'antidepressants' for me, which make me so groggy that I cannot function properly and would be a danger behind the wheel of a car.... he tells me that people with fibro, suffering sleep disturbances, do not get the deep restorative sleep everyone else gets, so these pills will help me get a deep sleep and that will help me, he also told me I have to get 'on top of my pain' because it is not as bad as my body thinks it is, and I should also do meditation! Quite frankly I object to being made to feel that this illness is psycho-somatic in nature, but I will stay on this pill (DEPTRAN 10mg) for a few more days to see if my body ajusts to it and comes back to a normal functioning state. Or I will have to see my GP and see if there is some way of getting a smaller dose of the meds.... currently it is a capsule that is prescribed.... maybe there is pill I could cut into 1/4's..... The medical profession has treated me like a hypochondriac..... and now is prescribing me antidepress pills......... I wonder how one of the Docs would cope with this disgusing illness if they were treated like we are? OR is it just people who have NO private medical insurance that get treated in this way?

niki | 04/05/2007 11:16:00

my diagnosis took at least 5 years, i had started having problems when i was working for next directory. initially i was diagnosed by my gp as rsi but because of the trouble i was having with my neck he refered me to a neurologist, this was hopeless he wasn't intrested totally dismissive of my symptoms told me basically that it was in my mind. he arranged for an mri scan which was a year after my consultation, it was found that i have a narrowing of my cervical spine which i have since read could be a marker for fybromyalgia. i was refered to pain management which again is pretty useless, my gp was wonderful, he spent time lokking for specialists to see what else could help. i was sent for physio, and finally refered to a rhumotologist who diagnosed fybromyalgia by pressesing certain areas of my body. it's in a way nice for someone to acknowledge that the pain is not all in your head but its a struggle to get help.

to all from Graham age 46 uk | 04/05/2007 15:16:00

Do not give up on DLA, you must fight, go to your local CAB never accept the first no I was told no but wrote a letter saying I did not believe the right result was given, explaining even more in an angry tone that I had lost everything that I use to enjoy, went from an very active person to a useless wreck of a man. I had lower rate for care and mobility high rate for two years at a time for six years, this year when I reaplied I got the shock of my life and they have given them for me until I am 70, thats 25 years. So keep at them remind them how dangerous it it to make a meal, they mean a full roast, as if you are like me you have burnt,cut and dropped many a pan, and it does get a bit frightning after many close calls. Also walking, you may be able to walk further than their limits, but the pain is severe from step one, and you might fall as I have on numerous occations. Get angry in a polite way, the DLA doctor is trained to catch you out to save the government money, not one of the ones that saw me knew anything about FMS, one even told my wife not to feed me so much, a comment that nearly made me commit suicide. Every one I know who has FMS were without exception prior to the onset very active work-aholic type people, I feel we have some how burnt our selves out maybe the injury and our excess energy brings on the FMS, that to me is the worst thing as we find it so hard to go slow. Good luck to you all I wish you well.

chelle 4/5/2007 | 04/05/2007 15:30:00

I am still trying to work out how i managed to be diagnosed with fms in late 2002 when i was workingas a chalet maid and quiet fit .i have a twisted spine from shoulder blades upwards and arthritis in my neck and lowerback which never gave me much problems.in jan 2001 i worked on a chicken farm not very plesant but had been layed off from my long term job as a cable wirer any way i had to clean out the the back of the chicken sheds where there were large ice cold blowers on ,on this day which constantly blew hard on my neck i went totally stiff in my neck and shoulders and could not move my head i stayed that way for three weeks in angony.while of sick i changed my job .in the october 2001 i thought i had really bad flu and was getting worse week by week with added stabbing and flare up pain in my joints and musels.so i went to my doctor he said it was arthritis causing the pain so i went away with aprecription for co-proxamol .i am very sensitive to medication they made me feel dizzy sick and loose my balance.anyway i went to work things were just getting worse overwelming tiredness.numbness in fingers and feet ,joint pain,headaches,shooting pains,weakness so i would drop thing.theres a lot more symtoms to go with that lot,i went back to my doctors he said my god you dont look none to good and all the time i still had the flu like symtoms wich was not flu but the fms causing it.he sent me to the hospital to see the rhumotologist i had a few xrays on my neck and spine whick comfirmed the arthritis and blood test which were ok he gave me a neck coller for comfort wich did nothing.he offerd Amitriptyline.on a warning that i really should not take them as i have only one kidney and i should look after it.he refurred me to a pain doctor,when i went to see him he did a number of of pressure points test i told him of all the symtons i was getting he said in his words you have fms there are some symtoms that i had told him about to which comfirms this and unless you have fms you would not know about them which most people dont seem to mention.Then the doctor said to me i surpose you well be reaking the benifits and getting people to run around after you.with that i grind with pleasure to tell him I go to work infact i have 3 jobs.he soon changed his cocky attitude,he said you could go on a pain management program ,for exercise and pain but giving what i do for work it would be pointless.he said try to keep in your job for as long as possible because no one else will employ you with fms and it will get worse sorry there is no cure. well i had no joice but to give up work in march 2003 .i have tried all kinds of medication but i react badly to all of them. it really is a case of learning to live with it,or should i say IT LIVES WITH YOU.i could write a book on this subject.chelle

Kim 5-4-07 | 04/05/2007 17:12:00

I was offically diagnosed in 2002. I had been suffering for well over 1.5 years before I knew what was wrong I was 45 years old when diagnosed. I was very tired, could hardly get from the bed to the couch, ached all over, could hardly walk on my left foot and my neck and shoulders kept aching and knots in them, my hip sockets and tail bone area were to sore to touch. I thought it was due to my home embroidery business I had at the time as well as working PT. I had just about stopped going any where....just did not have the energy to go to Walmart, grocery store, or didn't care to go any where for that matter. I was sitting at my embroidery machine one afternoon watching Oprah and there was a lady on there talking about how she felt and her symptoms and I thought ....wow that lady is talking about ME! I kept listening and heard the word fibromyalgia and immediately turned to the computer to look it up. Out of the list of symptoms I had 3/4 of them. I called my family doc and went to see him and told him what I thought I had. He mashed around on the tigger points of which I nearly went through the roof and said well to be on the safe side lets send you to a rhuematologist she will be able to determine exactly. This was in another city....I went, she did blood test to rule out arthritis and Lupus and then diagnosed me with the fibro. She immediatly prescribed physical therapy and I started that...the first time I went it was painful but wonderful all at the same time. I had a knot in my right shoulder blade about the size of a fist that the pt tech said she had NEVER had a patient with a knot that big that kept rolling under my shoulder blade and she would have trouble even trying to massage or use the ultrasound on it. She said it was like rope twisted together. The doc also put me on several meds(changing up different combos)....sleeping, antidpressant, muscle relaxer of which I gained 60 pounds and got little relief from them. In late 2002 I had a breast reduction. I am 5'1 and was a 44 DD. That has helped the neck and shoulder problems alot. I do not regret having it done. My next trip to the PT helped very little if any. I had a sleep test and they put one of those c-pap machines on me. I used it a month and decided that ws not for me. I kept complaining to my arthritis doc about the weight gain. When I went back to her and told her I could not use the c-pap machine she did not like it and was kind of testy about it. I once again complained about the weight gain and her response was ....You are going to have to learn to live with the weight or the pain.....I did not take to the response very well. My family has a history of heart problems. I decided I was going to die from weight and heart problems before fibro killed me. Therefore, I weaned myself off all the meds I was on. I decided I would have to find my own solutions and I had a Jacuzzi bath tub installed in my house. I got a TENS machine unit and started taking Ibuprofen and Prilosec on a regular basis and Melatonin at night to help me sleep. I also moved into a bed all by myslef since I turn over all night a million times to try and find a comfortable position ( of which there are none after about the first 5 seconds of turning over) but I am so much better than I was in the beginning. I guess I have learned to just deal with the aches and pains and some days they are worse than others but until some one finds a magic clue to helping it is certainly an aggravating ailment to have. I do think the Jacuzzi tub with the hot circulating water to the muscles has been a big key to my feeling better. When I have some good days and don't take the Ibuprofen I have learned I pay for it a few days down the road.



Stephanie, USA | 05/05/2007 00:14:00

After years of widespread muscle pain and nagging fatigue, my health spiraled downward fast. I had a resurgence of allergies, sinus infection, then bronchitis that would not go away. My GP and allergist/immunologist diagnosed two kinds of pneumonia and 2 viruses. I was diagnosed with CFS because of EBV. This is an outdated view, but turned out to be an accurate diagnosis. More and more strange and new symptoms, seemingly bearing no relationship to one another and seeming to come from out of the blue, kept appearing over the next couple of years. I could barely walk down the hall or take a shower without dizzyness and almost passing out, for about 6 months. I thought I was dying, and felt closer to death than life. A top medical institution confirmed my diagnosis of CFS and ruled out other causes. After over 2 years of illness, and after becoming my own "general contractor" for my health and using alternative medicine, I finally started to recover, and over the next few months got progressively better. THEN, I heard about fibromyalgia. By the time I heard about it, the pain was mostly gone, so I was never diagnosed, but I am pretty sure I had FMS too. The thing that made the pain go away literally overnight was bio-identical testosterone supplementation (note: shots are not bio-identical). Magnesium was also very helpful. Just like with CFS, there needs to be more awareness and belief in the medical community. I went to a total of 10 doctors and alternative providers, 16 if you count my visit to the top medical diagnostic program. After $5K spent there, I was told, you are old (at then 41), get used to it. My GP kept asking whether I needed to see someone (euphemism for you're crazy) until she noticed that whenever I came up with a weird new symptom, she finally came up with a medical reason for it. Unfortunately, even though I am recovered now, I tried so many things in the process that I am uninsurable. Whenever I apply for health insurance, I get a letter saying I could have 20 things, many of which are serious and so I can't be insured. If you try something and it doesn't work, be sure to have you Dr note that you are no longer taking it. That might help. Good luck to all reading this, and know that it is possible to get better.

Sally | 05/05/2007 03:00:00

I had passed judgment on a friend of mine several years ago who had fibromyalgia thinking that she was a hypochondriac. Four years ago, I was humbled when was diagnosed with fibromyalgia. To relieve the aching in my arms, legs, back and neck, numerous visits were made to chiropractors, naturopaths, acupuncturists, neurologists and my family doctor. The alternative medicine practitioners felt they could help me; MD's just offered pain medication capable of damaging my liver. Most are truly clueless about the condition and skeptical; one doctor told me to just tough it out. At one point, I just wanted to die since I felt so impaired and frustrated by not finding any solutions. I take medications for depression, to help me sleep, anti inflammatory supplements and Darvoset when the pain is unbearable. Recently, my family doctor put me on Tramadol, a nonnarcotic pain reliever which I take twice a day, and my pain level has been appreciably minimized. Since I became very proactive about my condition, I have improved tremendously. It wasn't long ago that I couldn't hold anything weighing more than 5 lbs. without dropping it, nor could I stand up without a prop if I got in a crouching position. What brought a dramatic turnaround was taking yoga and working out. Believe me, there are times I hurt so bad I don't want to workout; however, staying in a far infrared sauna for 20 minutes before working out, warms up my muscles and feels so good! Research has shown that movement releases toxins in your body through the lymphatic system. It is critical to reduce the stiffness that becomes crippling at times. Dr. Mark Hyman, a doctor who suffered from CFS, self taught himself factors that provide relief from both CFS and FMS. His information is incredibly provocative. Go to www.ultrawellness.com and subscribe to his blog. In addition to numerous tips, he mentions that far infrared saunas help sweat out toxins as well as providing relief from muscle pain; I sought out a workout club that had a far infrared sauna. Some of you may not know a definition of fibromyalgia: it is the hardening of the interstitial or connective tissue that causes so much stiffness and pain. With this condition being more clearly understood, there is sure to be a major breakthrough soon. Meanwhile, let's support each other in what we can do and move forward: keep exercising regularly to the best of your ability; try yoga--it's like giving your body a massage; reduce inflammatory foods (mainly sugar), and eat whole, unprocessed foods. Really, it is in our power to feel better and fight back.

Kate | 05/05/2007 16:31:00

After nearly 30 years of suspect health problems - starting with glandular fever at 17 years old and having various bouts of ill health, I was diagnosed firstly with M.E./CFS, which got more an more severe over the past 15 years following a car accident. Then two years ago (as the pain and weakness in my body increased) was finally diagnosed with Fibromyalgia. I had to finally give in and stop working full-time, then a few years ago my body gave up and I have been unable to work and cannot socialise (apart from having one or two very understanding friends and relatives round for short periods of time now and again). The diagnosis of FMS seems to be from the pressing of various painful areas on the body - apart from that, everything else was M.E. related: foggy brain, exhaustion, sleep problems, nerve and muscle pain and twitching, numbness and tingling, co-ordination and concentration problems, etc, etc. GP is very sympathetic, but they don't really understand it and it is a terrible invisible illness that can be very misleading to even the most sympathetic professional doctor/specialist. And so many people in the medical profession are biggoted against such illnesses - I think a lot of it stems from their impotency in dealing with such illnesses. I tend to give up trying to explain as it is too exhausting. I have a very understanding husband who sorts most things out for me. It is very difficult to get any proper help - as, apart from drugs (which upset my immune system and make me more ill), there only seems to be self-help such as pacing and rest. But do try and keep moving as much as possible, as you can seize up totally and the circulation suffers greatly with this illness. I have gone to a traditional acupuncturist and that helps a lot, also a major help is a good nutritionist, who will sort out a good diet to follow(wheat, dairy, yeast, sugar, etc, all eliminated, and all the necessary supplements, etc, added at various times - a wonderful thing to take is aloe vera juice every day and drink at least 2 litres of water a day, especially if you are taking medication. I have someone typing this for me as I cannot use my arms/hands for long. Any form of exertion is tiring and painful, as I am sure you all know. It is a pity the specialists can't do a more holistic approach, as any illness that affects the whole system cannot be helped unless they treat the body as a whole and not just one part here and someone else looking at another aspect of the illness. CFS and FMS seem to be caused by various things and then the body gives up fighting and turns in on itself to cause these illnesses. Good luck to all fellow sufferers, you have to have a good sense of humour to get through this one - but hopefully, eventually, we will.

Kim | 05/05/2007 17:23:00

I was diagnosed with fibromyalgia 3 years ago after suffering for many years before. I had test for arthritis, but a specialist done various tests on me to diagnose my fibro.Each day is different with varying pain. I find it very frustrating not being able to do every day things. Only the other day I decided to do a bit of weeding and suffered severe pain for the rest of the week.Medication only keeps the edge of the pain at bay.

Petunia | 05/05/2007 21:19:00

I have suffered with FM pain for many years but it was only diagnosed 2 yrs ago..I had to give up my career as an insurance agent/agency manager 4 years ago, due to the pain and the inability to think, lack of concentration, and memory lapses,,panic attacks, inability to sleep, etc. I have pain 24/7,,I don't have flareups, it's a constant... I had talked to my doctors many times about the pain and other symptoms of FM, although at the time I had never heard of this condition...Their response to me was, you are not getting any younger, getting older,,gotta expect a pain here and there....Yadda Yadda..no one was listening so I thought I was Crazy...My PC told me 4 years ago, that she would diagnose FM, but I had range of motion so didn't qualify for the dx...LOL I came home and researched the internet and found that I had so many of the symptoms of FM,,I was sent to another specialist who finally diagnosed FM as well as Osteoarthritis...Due to a change in our isurance coverage i had to change doctors and the specialist that I saw is one of the new ones that I continue to see...He really seems understanding... One thing I might add, is I applied for SSDI, 1 year after being off work,,,I was denied...I obtained a copy of my medical record and no where in the notes of 5 doctors was there a mention of pain...I could not believe my eyes...So make sure if you are applying for SSDI that your physician documents your symptoms...I did get SSDI upon appeal.. The main thing that helps me is HOT water,,,I have a SPA that I use 2 x daily and I find that I am not as stiff in the mornings when I wake up... There is so little that I can do anymore as far as housework and exercise so I sew and embroider to keep my "Brain" active... It's just amazing how this condition can affect and change your life as well as your families..It's a tough fight to get back to the old you...My DH has learned what clothes pins are for,,and he can turn on the dishwasher which he NEVER did in our past lives...LOL He really has been supportive but sometimes when I have to lay down for a bit, I think it bothers him...It might just be my thinking... I have to fight everyday the depression and the urge to just give in to the pain and go to bed...Life is just to short for that, so I will keep on doing whatever it takes to be able to enjoy a everyday that God allows me to have...

Derdru | 05/05/2007 22:42:00

Hello...I have had fibromyalgia for18 years ( That's when I was diagnosed )...At the time I was working in a light engineering firm. My work involved a lot of heavy lifting and use of machinery...I had a neck like Arnie'...Just out of the blue I thought first I'd taken a heart attack..my whole upper body went into painful spasm...It was put down to the heavy work...I was bedridden for months before I could get movement back....Later I was told it was RSI...I was given painkillers...which didn't work...anti-inflammatories...which didn't work...I was on antidepressants...The tiredness was so bad I would basically have to stop dead and get to bed...otherwise I would have just collapsed where I was...My GP, having tried all these medications, went through all my notes, then did the point test and believe me I squealed with the pain...He then diagnosed me with FM.. the chronic tiredness, he diagnosed as ME... He was then able to explain what he knew of the condition...He did not do blood tests as FM does not show up in the blood..He had no need to refer me anywhere else...All I could think of at the time was Thank God, now I have a name for all the pains and tiredness...My pains would go from one group of muscles to another...There was not an inch of my body that was pain free...my very eyes were painful...My legs would stop working for me..it was like my brain couldn't tell them to move!!... I have read all the other comments here and I can say yes that's me... I even came across other things I had which I never associated with FM... Like Laurie..I had the painful 'itchy' bones..I still get it now and then...It's like a 'blank spot', I could tear my skin off trying to get rid of the itch and not realize I'm doing it.. Having said all that...I am wondering if I already had FM when I was younger...I had the 'growing pains' as a child...Pain in my wrists which made me drop things ( I was always sent to the nurse to have elastic bandages put on )...In my teens I was told I had Fibrositis in my back because of the pains I had then...I had Migraine headaches every month...put down to hormones...I had sciatica for 20 years...it's not bad now...I became agoraphobic because of my weakness and pain... My GP did not send me to pain clinic as they were just basically using trial and error to find something that worked...one of the things being used at the time was rubbing hot chillies on the skin!!!...He knew at the time that most Doctors dismissed FM so between us we worked on what was good for me...I learned how to relax...How to find my bodys' limits and not go over that...going over meant days of agony in bed!...I never slept at night for 15 years...I would fall asleep maybe mid morning or afternoon and sleep for 3 or 4 hours...I would have some energy in the mornings and then it was like someone pulled the plug on the bathwater and all my energy was gone down the drain!...My GP told me that FM was not life threatening but was very life debilitating...Boy!...he was right!... One of the things that helped me was a drink ( Aloe Vera Gel ) ... I discovered that Migraleve ( the yellow one ) eased the pain in my muscles as well as my head... This is the only medication that worked...I only take it when I have the migraines...All other meds that were tried would do nothing at all...Gentle massage is very good ...I was encouraged to go to the swimming pool.. I have to stay at the shallow end as sometimes my arms would seize or my legs would seize..If I am not able to do a couple of breadths I just float or move around in the water...It helps to relax my body, as the water supports my weight..My former GP is moved away now this last 10 years and the GP I have now works with me the same way...I am very lucky that I have had these 2 GPs and did not have to spend years trying to find someone who knew what was wrong with me... I get the low rate of DLA for help with personal care... I have learned to live with my pain over the years in hope that some day there will be a breakthrough somewhere...more research...more education for Doctors... I also have osteoarthritis and chronic asthma... Recently I was introduced to smoking the brown stuff ( Don't know the proper name for it )... I have a smoke about an hour before bed time and find that it relaxes my whole body..as well as helping with the pains..so when I get into bed I fall asleep immediately and sleep for at least 4 or 5 hours...The rest of the time I am in constant pain....People tell me how well I am looking and I could scream because they cannot see how I am really feeling...My husband and my immediate family are very supportive...I just could not cope without them... To all you out there who are suffering I wish you well...Keep working on what is good for you personally...no matter what or how weird it is...Love..X

malty | 05/05/2007 23:01:00

just like everyone else says Dr's seem at loss about FMS and how to diagnose or treat, so are dismissive about FMS In the North East Dr's have been targeted with professional notes sent By FMS association like a few Before me I had to pay privet and see a specialist who specialized in FMS before it was confirmed I had alongside other health problems FMS so after more than twelve years of suffering I then was able to access the pain management clinic. I also found out certain tablets especially statins made the fibro flair up worse in me. the Hydro Pool helped short term at least i would get mostly a good nights sleep after.The other thing I find is i have always had a happy disposition and a smile on my face but because Fybro is an internal thing Like depression because its mostly not see able it's dismissed.I am a large man who looks very strong and at one time i was very fit loved long rambling.then at times feel like all my strength has gone and just picking up a cup of tea is like lifting very heavy dumb bells.also just trying to lift your body up and get out of bed is virtually impossible,yet another day it all just seems like there is nothing wrong with you,so you start disbelieving yourself and think is it all in the head until it hits you again and you know it is real and really happening to you. for Me i do believe whenever you are getting anxious or stressed is when it gets worse. but also it can flair up without any reason at all.I can only say the only time i used to sleep a full night was before FMS became a part of my life.Now at the present time i have to turn about every hour through out the night to find comfort because lying any longer than an hour you are in chronic pain also have to have a cushion between the knees to relieve pain.I never ever had any problems with cooking utensils but i have lost count of pots pans and oven trays I have burnt while i have had fybro.there is times when i sit down for a minuet and i go out like a light being switched off and its been the smell of burning that wakes you up or the smoke alarm waking you. but in the end you get fed up trying to tell people Dr's etc: Because all you get from people is well you look great from Dr's just keep taking the tablets.the best for me was a pain specialist who cried when he suggested i had Fybro and admitted there really wasn't any thing he could really do for me,and that was because he had it himself.And yes there are things you can try to do to help yourself for me was to except i wasn't going mad and that i did have Fybro and with acceptance learning to live with it and rest and take time out when i need to i became more positive and less depressed and enjoy life a bit more because its a challenge to not let it beat me.I focus more on supporting and helping others and dwell and think less about myself It works for me.



AHully | 06/05/2007 12:35:00

Hi, I was self diagnosed with fms in 2003. I had been seen by many dr's and specialists over the previous three years. The pain just got worse every year that passed. I have had mri scans, blood tests and every other test you can think of. Finaly I turned to the Internet and finally found the symptoms for fms. They matched every thing that I was feeling. Tender spots, aching joints and muscles, restless sleep, headaches, depression and god knows what else. I went to my gp and mentioned fms to him. After he had read up about fm hi agreed with my diagnoses and sent me to see different specialists. I eas also sent on a pain management course called COPE. This was a great help as they teach you to cope with the pain and to pace yourself with the things you do daily. I have been in the building trade all my life and had to stop working in 2005 as the pain was to much to bear. I am now surviving on incapacity benefit and my wife has a part time job. We are strugling by but do not get much support from the nhs. Everyone says that there is not much more they can do to help. I have brought many different drugs from America over the Internet but, so far nothing has helped. I am taking Amytriptyline and Sertraline to help with sleep and depression, and Zamodol melts for the pain. You just have to take each day as it comes and hope to get through it without to much pain. I still do things that I know I shouldn't, like a bit of gardening at home, and then suffer for it over the next few days. The most difficult time I have is not being able to do things with my children. I have two girls aged 4 and 6. They do understand a little but often forgrt how I am feeling. It is not thier fault and I don't blame them for anything. I wish I could do more with them. Good luck to everyone who has this condition. Andy

Fiona | 06/05/2007 20:10:00

My immune system started shutting down when I was 15, seems to have been a lot of problems when I was younger but nothing really bad. I damaged my back and skull in an accident at 17, and had back troubles since then. One day when I was 19, after a period of growing troubles with stomach, tiredness, aches and allergies, I woke up and couldn't walk properly. It was like I was walking through water. I tried to push myself through it as I saw doctor after doctor who said it was the head injury meaning that I needed to build up my strength again. Two months later I was in a wheelchair and diagnosed with ME. I was told that was that, I had a diagnosis, here's some painkillers, off you go. Over the next three years I tried many different therapies as it got gradually worse. Eventually I saw a new GP who told me that no real investigation had been done before the diagnosis was made, only basic blood and urine tests, so she sent me for a full investigation and eventually the rheumatology department diagnosed Fibro. Again, I was told it wasn't his area of interest and nothing could be done. My GP went through a series of anti-inflammatories before we found one that worked (celecoxib, now restricted), and the pain lessened a bit. After 3 years, I found a type of therapy that worked wonders for me and was out of the wheelchair in 4 months, but still suffer from a lot of pain. I can walk around and mostly take care of myself now, but I am back on celecoxib and the meds I have to take for its side effects. I have to take painkillers regularly, I've had physio and all kinds of treatments. I've had to give up everything I dreamed of, and 7 years after it started, it's still difficult to stop things I like when I start to get sore. I can't work at the moment, but am taking a course in bookkeeping in the hope that I can work from home. I found that employers were fine with me having fibro when they hired me, but when it actually became an inconvenience to them they started making me feel guilty for not being able to do as much as other people. I have had benefits stopped because I've been seen out on a good day and they've figured, if I can do that, then I must be ok all the time. It's becoming more well-known now, though, and most of the benefits doctors understand the variability of it. I'm still coming to terms with it. It's still hard, and I suspect it always will be hard to know there's things I won't be able to do even if I had the money/time/etc. It's easier to accept that, though, than to keep putting myself through hell every day waiting to get better. This is my life now, and it has its good days as well as the bad ones. I wish I could make plans without the 'if I'm feeling ok' proviso, i wish I could go trekking in Nepal, I wish I could keep knitting til my pirate hats are done! But instead I can enjoy my time on my good days, try and not to too much on them, and hope for not too much pain afterwards.

Gweneth | 08/05/2007 11:24:00

i've had fibromyalgia now for five years. i'm on crutches around the house on good days otherwise i'm in a wheel chair. I was a customer services manager and i love inter-reacting with people but now i'm stuck in the house with my computer. i've come to accept that my life will never be what it was and that was very hard for me. I've seen a specialist twice, i've been through the pain clinic program, but to no avail. When i can do things i do them without thinking how much i'm going to pay for it in terms of pain and fatigue later because I don't want to miss out on things i can have because i'm worrying

sue | 08/05/2007 16:07:00

I'd been going to the doctor for multiple but minor problems - achey, leaden legs, pain in waist, sinus problems, post-nasal drip, waking in night with fast heart-rate and tennis elbow. had also gone to well-woman clinic with what I imagined were early pre-menopausal symptoms - hot flushes, night sweats, itchy nipples(!), and had put up with masses of others as always the tests came back negative and the doctor made comments on the length of my list! I was beginning to think it was it my head - except my brother, sister and mum were all experiencing similar symptoms. Eventually was sent to a rheumatologist who x-rayed my hips and knees where I was experiencing a lot of pain at the time (hips constantly ache now) and did loads of blood tests. Cancer had been mentio ned when I had what I now know was a flare up due to mono, this time the flare up probably was triggered by onset of menopause - 6 or 7 years ago! I was diagnosed 5 years ago and then found a site that listed symptoms and there was my medical history in a list!! A relief at first but then discovered that nothing much could be done - srtong pain killers make me high and sleeping pills/ant-depressants give me nightmares and hallucinations and there's so little research. My sleeping problems and my toe nails were investigated before diagnosis but not the table tilt test - what is that?

Mike Hodgson | 08/05/2007 16:46:00

I have suffered with aching knees, extreme tiredness and exhaustion for many years, perhaps about 12 years. I first I was told by my GP that I had suffered a virus infection and in time I will get better. After numerous visits to my GP and several tests I was still no further along to a diagnosis. I then moved and changed my GP. He suggested that I may have a sleep problem. Eventually I went to a sleep clinic but alas not I did not suffer from any normal sleep problems. I moved again and found another GP. By the way I moved for work reasons not to look for a new GP. This GP, like all the others, sent me for tests, blood tests, X-rays and so on. In the end she said let’s try rheumatology, we have tried everything else. At first I thought it was not a rheumatic problem. However, I went along, rationalising - what did I have to lose. Just before my appointment my sister sent me a link to an FMS website. I sat reading it thinking – I have just written this – it was not just in the right field, it was me! I was astounded. I was going to tell my consultant but then thought no, I will wait and see what he has to say. Sure enough he diagnosed FMS. At first I was relieved to have a name and an illness and not a figment of my imagination. I have been to support groups and pain courses and all of it helps. I am not as bad as some people I have met and I manage to hold down a full-time job, with some support from my boss. I am not sure why GP’s cannot diagnose or at least suspect it more readily. After all the basic test – pressure points – is fairly basic, once you know what to look for. My GP is supportive but does not fully understand the illness. Every time I go and see her and suggest I am feeling tired she sends me off for a battery of tests, which I know will be negative as it is the FMS. However, she is just being careful as the symptoms could mask other problems.

ANNE | 08/05/2007 18:13:00

I've had FMS syndrome fo 10 years. I was diagnosd with Arthritis 15 years ago, and I've had deal with the pain, at the time I had 3 young kids to look after so you just had to deal with it. When I was diagnosed with FMS I was given a leaflet and come back in 6 months. My husband had to give up work to look after me and kids. He give me my life back, at the I just had operation and in bed 24 hours a day. I have been on Tramadol, Gabepentin, Amitriptyline, lodine,Tylex, but nothing takes the pain away it just takes the edge of it. I once tried to come of all my tablets but I could not get out of bed, so I do know that they do make a difference. The only down side is the side affects which mean you have to take something Losce. I am very lucky I have a good GP, we talk about is wrong decide together what to do. People with FMS need a good GP.

Wayney | 08/05/2007 18:16:00

I got "lucky" in my diagnosis I suppose. I had been dx'ed with JRA at the age of 7, went into a teenage "remission" and when I was 25 started having problems again. Being tired all the time, achy, joints hurting more than usual. I've always had fibro symptoms and it was just chalked up to the JRA being an "unusual" case. I fully think I've had FMS much longer than my dx. I think that is partially why my pain complaints as a child did not coincide with the joint problems that were visible. I self-referred to a rheumy and within 10 min of him examining me I had a diagnosis. He left me a pamphlet on FMA and walked out. Said come back in a month, I want to run labs to rule out lupus (I have the butterfly rash and always have) and also make sure you're RA isn't active. He didn't do a thing for me other than that. I was already upset because he refused to allow my husband in the exam room with me. By then I was in tears because he didn't listen to me or address the pain. As I was waiting on labs the nurse saw me in tears, got the office manager and they asked what was wrong. I explained it all to them. How I didn't mind the dx...but he needed to do something not just give me the dx and walk off. How he refused about my hubby...how rude and rushed he was. They immediately got my labs done and put me back in the exam room. I don't know what they said to him but he was back in less than 5 min and said well we can try Celebrex for your pain. Ok. So got samples and my script. Left. Scheduled my appt for follow up. And then when the Celebrex made me sick, I decided to find a better doc. Called to cancel my appt and they said will you consider seeing the other doc here. She's much nicer, will let your hubby come with you (every patient has the right to have an advocate present) etc etc. So that began a 2 year relationship of med after med that either did nothing, made me sick or caused tolerance. I lost insurance and my rheumy said she did not believe I was in the pain I claimed I was in because my labs were fine. so was without a doctor for 3 years. Last year, I got insurance and again self-referred to a "wonderful" rheumatology dept at a medical school. That rhuemy decided that my RA didn't need treated because the meds were "too toxic" and to ignore everything I told her about meds that helped in the past. She refused pain meds (even Ultram), said guaifenesin and Elavil along with strenuous water aerobics would do the trick.Now, I've tried swimming and it causes me a lot of pain...so water aerobics without the benefit of pain meds just was not happening. I'd tried guai in the past. She couldn't even tell me the protocol...didn't seem to know about avoiding salicylates and even scripted me a salicycate med for inflammation. Needless to say, I quickly decided this was not happening. Another self-referral to a pain clinic this time. This doc has turned out to be pretty much a knight in shining armor. He listened to my history, ordered an MRI, did a good exam, saw my lack of ROM in my joints, did the tender point test or part of it, once a large number were active to the lightest touch he stopped torturing me. Asked what I'd tried in the past for both my RA and my FMS and said here's the plan. We addressed the fibro with a pain med, Zanaflex and he wanted me to try Lyrica in light of my complaints of neuropathy. He also sent me to a new rheumy in town (who happens to work with the former one) and said I'll see you next month and go from there. They got me in for the MRI in 2 days. Within 2 weeks the doc called me personally to tell me what the report said...all is normal. But, that he had some concerns in looking at it. He then asked how everything was working out. I said fine except for my ins. doesn't cover Lyrica is there something else I can take. We switched to Neurontin. And at the next appt he showed me what was causing my back pain (not fibro like I'd assumed) and said here's what we'll do. And within 2 days, my treatment was scheduled. I saw the rheumy as well and he addresses the RA but leaves the fibro and pain to the pain doc. It's been a game of switch the meds for that. But, fibro wise, the NP I now see (since I'm "stable" for the most part) has addressed all of my fibro issues. The increasing neuropathy, the muscle spasms during the day (Zanaflex stopped the nighttime ones), the increasing pain in a flare, the fatigue (she's the first to ever suggest Provigil to me) and anything else that comes up. I definitely think there needs to be a better way of diagnosing fibro. I've not had a tilt table test. Most of my docs have had an attitude of "let's treat this" but their listening skills aren't always good. When a patient has a long history they tend to know what works. Doctors need ti listen to that. They also need to be open to the fact that not all patients will respond to the same treatment. And that exercise, while important, isn't ALWAYS the answer. I'm not stable enough with RA to say exercise is a smart idea. I do my ROM but anything else is too much at this point.



Nurse | 08/05/2007 22:09:00

I had to retire when I was 49 with hypertension, hormone disorder, burnout and ME. There had been no test done other than some bloods. After about four years I started getting more joint pains. I went to my GP who pressed on some pressure points and then told me I had fibromyalgia. I have found that paceing myself, attending a very good Chiropracterand taking whole food nutrition in the form of Juice Plus has helped me to be able to live a fairly normal life. Last year I had lumps in my breasts and after diospy I was told that I had a condition called Dercums Disease which manifests with the pain, fatigue and all the other symptoms the same as ME and FMS. Now I am left not knowing if all my problems come from the Dercum's or do I have all three.

Gill | 10/05/2007 18:44:00

I had a bad horse riding accident when I was in my mid 20's and suffered back pain ever since. But it was not until I had my Gall Bladder removed in 2002 that I woke in terrible pain and have never been right since. I researched the pain I was experiencing and this was the first time I came across Fibromyagia. I was referred to a Rheumy and he confirmed Fibro doing the trigger point test. I was then put on Ampitriplyne and Fluoxtenine (not sure of spellings!) which helped and were far better than the strong pain killers I had been taken which flared my IBS everytime. Unfortuntely I started having rapid heart beats and found out that taking both Ampitriplyne and Fluoxtenine can cause this and they should not be mixed!! Stopped Fluoxetine (prozac) and put on another low dose antidepressent instead which is fine. Eventually got appointment with pain clinic and had blood test to rule out other diseases and confirm Fibro. Go to Chiropractor every other week which costs me dearly but is best form of releif I can find. Also have Accupuncture to keep my system balanced. Im also a diabetic so need to look at my diet and exercise more carefully, but the pain with exercise, no matter how small you start with, always puts me off. Ive had to give up my job I so loved although I work self employed now so I can fit hours around this condition. Never had a tilt table test - did not know that fibro could or would be diagnoised with such?

Yvie | 14/05/2007 23:05:00

I was diagnosed after several years of kidney infections/ops for reversal of steralisation/2 IVF treatments/pregnancy at 43/hysterectomy....and after being told that I was reacting against all of the stress! I am now 52. I cannot take anti inflammatories as they can 'shut down' the kidneys, and anti depressents make me very ill....I cannot function at all and have tried many, getting irregular heartbeat and heartburn. With a young child to care for I have to be at least on the same planet as her! So I put up with the pain...I swim a bit, do aqua therapy and pilates...and when it is very bad I rest. I have a permanent pins and needles in the palms of my hands which never goes away, and pain in my neck/shoulders/back/and legs and such a low amount of stamina, that sometimes I feel as if I havent eaten for weeks and yet I eat well. I also have migraines, usually cluster ones, which in itself is exhausting. I wish there was a tablet I could take which makes me feel 'normal' again....but every time they put me on another anti depressent....I float off the planet and then feel worse! I try for weeks at a time, but I cannot live like that and still be in as much pain, so I just live with it. Trouble is with FMS it doesnt show....you cant see it... and I am past the stage where I have to explain WHY I can't just run up stairs or carry something heavy or even walk fast across a road. I am told I look very well! Quite frustrating when you feel quite the opposite! To me its like having permanent toothache in several parts of your body at once, and someone has sucked enough of your stamina out to make it feel like you are walking through treacle.

RH | 15/05/2007 10:38:00

As with many other people i suffered numerous symptoms for years, pain which felt like it was my whole body, chronic tiredness, feeling like i hadnt had a minutes sleep all night even though i HAD slept, irritable bowel, headaches and a tingling and general weakness in my arms and legs. I was sure that my GP just thought i was a whinge as it seemed that i couldnt say exactly where the pain was or why i felt so tired, it all came to a head when i became so ill that i kept falling over from the weakness in my legs and couldnt walk more than a few steps. I had to go on long term sick leave and when i went to the GP again i saw a different one who asked me lots of questions and then asked me to read a leaflet [on FMS] it was like reading about my life!! I then had about 18 months of test which were to rule out other illnesses, the final tests were the pain point ones, the consultant stood behnd me and pressed points where i couldnt see and i nearly leapt off the bed when he touched the trigger areas. All that was said to me was that there was no cure and that they could offer me painkillers and antidepressants! i left the hospital feeling like my life was over, my GP put me in touch with a support group whom i spoke to on the phone and again was left feeling very negative. Fot the past 5 years or so i have learnt to cope with this myself. I take basic painkillers and mostly its about time management. If i do too much one day then i suffer and cannot do anything for about the next 4 days so i make sure i keep within my own limits. Iv learnt to drive so now can get out much more, i cannot drive far at anyone time but enough that i have freedom. I have returned to work just working a couple of hours in a morning and it makes me feel more like a 'normal person' . The kids understand im never going to be a mum that runs round with them and i hate the fact that i cant go walking but they and my husband enjoy the other things we can do together. As someone else said the hardest part is when people look at you and you can see they do not believe a word when you say that there are things that you cant do as you look so fit and healthy.

Karen | 02/06/2007 14:23:00

I was officially diagnosed with FM about two years ago but have been suffering with various unexplained symptoms for about 9 years. I have an old back injury and all my symptoms were attributed to that. It was only when I started having panic attacks and widespread muscle weakness that the GP finally suggested FM. Once he had decided that I had FM he did refer straight away to the rheumatology dept. Since having the diagnosis confirmed by them I was started on low dose amitryptylline which has helped a bit with the sleeping problems. My husband and some of my family and friends are wonderful and very understanding. But the majority of people do not understand about FM because I look well and there is no obvious disability to see. To go out for most activities I have to use a wheelchair as my legs are not just strong enough to get me around the shops. Travelling and days out always cause a flareup of symptoms but I refuse to give in to this damn thing. So I go on holidays and enjoy days out with friends but then plan to be unwell for a week or so afterwards. I have become an expert in time management and I plan my days very carefully so that I can preserve my energy for doing the things I love. I have a sympathetic employer and as I am very part time am able to work from home mainly. I use a system called Flylady to manage my house and the housework, also my DH does loads to help in the house too. I enjoy crafting and reading and am so grateful that I can still currently enjoy these hobbies - they are my salvation!!

Aran M | 04/06/2007 09:40:00

I am still trying to get diagnosed. I am in Ontario, Canada, and my GP is trying to convince me that I am depressed. Out of a possible 63 symptoms found online I have 59 of them and have had many of them for over 10 yrs. I am researching for myself so that when I go back to the GP I will be able to ask her to refer me to a Rheumatologist or other specialist that understands FMS.

Sandra in the U.K | 06/06/2007 21:31:00

I was diagnosed with fms about 10 years ago, I was suffering pain in both shins which then spread to my left arm and across my chest, this of which was worrying. I saw my GP who had blood tests taken and I was diagnosed very quickly. I at present take amitrypline tablets to help me sleep and painkillers when I have a bad occurance. Pain is widespread and tiredness can be a problem but i have been able to manage the pain over the years and can say that yoga has been a great assest. I have no real explaination as to why I am a sufferer but for years I suffered with chronic migraine headaches from a teenager well into my late twenties which then just suddenly stopped. I recently read an artical in the Daily Mail newspaper which seems to suggest that fms may be the product of a viral infection can anyone shed any light on this? My heart goes out to all fellow sufferers particularly those who are in far more pain than I.



kim | 07/06/2007 10:32:00

I was dx with fms in oct 2005. initally I was feeling absoloutely exhausted all the time. I kepted getting sore points in my back and in my elbows. My gp kept telling me it was tennis elbow and that it would get better. In a matter of weeks it was as if my whole body had turn against me, when I said this to the gp they made me feel as if I was stupid. So I changed docotors within the same practise who seemed to understand what was happening and they did some blood tests and arranged for me to be seen at the local hospital where I got confrimation that it was in fact fms. The only problem now is that the gp that i am currently seeing seems to have run into a brick wall with where and what to do next. I am on medication both pain killers antiflams ect but with little or no affect. I have been waiting months for an appointment at the chronic pain clinic in hopes of some relief. As with most of the other fms sufferers for years I have suffered chronic migraines, sleep problems forgetfulness and getting my words mixed up or using the wrong word altogether. What makes it so difficult some people look and treat you as if your either lying about your symptoms or your crazy.If only they spent a day inthe life of a sufferer they would be shock what fms sufferers cope with. i send much love, understaning & respect to other fms suffers and to their families, friends and carers who deal and cope with this horrible condition everyday of their lives.

Suzy Triobar (UK) | 09/06/2007 10:35:00

I contracted a mosquito-borne virus (Ross River/ Dengue type) and the symptoms continued to flare up every so often (inflamed muscles, severe pain on using muscles, tiredness, foggy mind, only want to eat fruit). A tropical disease Dr confirmed this was sometimes the case and not unusual. Years later, I was diagnosed with FMS when I decided to seek advice for the constant pain/exhaustion I was left with between flare ups. The pain was like tooth ache in my bones and it hurt if someone lightly touched me. From the other stories on here, it sounds as if I was lucky to get a diagnosis quite quickly. All I remember about the diagnosis (over 10 years ago) was being sent to a rheumatologist who did a thorough exam (and blood tests but I can't remember what for) and prodded me in just the most painful sites before saying it was FMS, there was no cure and it probably would not get any worse. As the trigger points seemed to be acupoints I decided to try acupuncture. This has helped a lot to control the pain and I still go regularly. Only aspirin seems to take a slight edge off the pain, nothing else seems to touch it (except steriods but I don't want to risk the side effects!). I use a TENS machine on my upper/lower back when the results of a car accident about 25 yrs ago become really painful, but I can't work out how to use it against a pain that is everywhere from FMS! I also do Tai Chi which helps a great deal and if I miss a few sessions I feel worse (more pain/less clear head). I was put on anti depressants several years ago for chemical imbalance (not a specific event making me depressed) and continue to take them. I am able to hold down a full time job. I am not as active as I was and have put on loads of weight. I have a very caring husband and lots of good friends who support me when I need it. I guess after over 10 years, I have learned to live with it. I do less active things on hols, pace myself and accept I am not the person I was before. It wasn't easy - but I eventually realised the problems really weren't going to go away and fighting them was not getting me anywhere.

susie | 22/10/2007 18:31:00

I have found no help from my phycian if you are not broke and they can not fix what they can not see or does and you are not truly dieing you are on your own.Theydo not offer any pain medication or any forum of help you are exspectedted to go home and live with it.

I have and have looked for other sources to help my self .I find hydortherapy very benificial in a whirl pool tub that i can controll the temp in .

I have found much help in vitamins and hemopathic therapy -I use these topical application for pain as listed- Dmso aloe cream- green tea oil for pain and even a topical anti itich cream with pain relief all are topical application-

my vitamin list that is helpful is a multivitamin -calcium withD &B16-B12-C-ZINC & Magneisum-msm-Q10-folic acid-milk thistle-- ibuphrophen- antihistamine- Fiber pill-lastl is aloe juice with a juice of choice.

Most important-check with your doctor- if you are consdering or unsure for any reason if you can take or use any of this of his information. Medical condition's and your medication can effect what you can take.

-The Probiotic that I have just started taking has been so benifical I can tell a big diffrence in my energy level and my ability to digest food.I beleive our ability to process food and provide nutrients to our body is part of the key to fibromyalgia and can tell what a diffrence it has made for me I have part of my life back ,hopefully to only to keep going up.

Most important never to give up excersise -walk rest when your bosy says to even if it just resting your eyes a few minutes -have faith and Prayeven when it seems as if no one is listening ,give it time He is not on our time we on on His.