Archive for Experience of Polymyalgia from 2005

If it was not for the fact that I baught a magazine, My Weekly, I did not know, neither did my Dr, Specialist, every symptom on the list, I have been fighting for thet Year, Feb 04, with this condition, none of the tablets I am on are doing any good, Atennolol, Amytryptolene,Backlofen,Trammadol, in November I had a series of Cautizone injections down both sides of my spine, and muscles in my legs, very painful, but if they had worked I would of said it was worth it, but they only lasted for three days, and began wearing off, I am now back to where I started, the pain is excrutiating, 24/7 I dont have the strength to go up the stairs, half the time, never mind walking, standing, sitting, taking showers, because I cant get out of the bath anymore, I have a medical comming up on the 1st of Feb, and I am going with all guns blazing, that I can assure you, I do not nore dose any one like being called a Lier, but that is what has happend, because I have not been able to work for the last year, and my Symptoms dont add up to any known Ailment, I have been called before the Medical Board, I Have Made it quite clear to them I Do Not Have A Bad Back, that is where the main pain is coming from. I am 53, and would like to get on with my life, relatively pain free.Sorry for all the moaning, it may sound silly but I am relieved that I now know what is wrong with me, and it will give me grate delight to present all the papers I have down loaded on the Internet, I Have a feeling that it should be the other way round, them telling me, after all that is the Profession.Yours Sandra Lister, keswick, cumbria.

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I was diagnosed earlier this year with Polymyalgia Rheumatica. I had the symptoms that most other people have described and it took several visits to the doctor before it was confirmed (?).

I was started on a high dose of steroid 30mg a day for a week,decreasing weekly until I had reached 5mg a day. The initial results were fantastic life resumed as normal. However after a few weeks some of the symptoms returned which I tried to aleviate with between 2-6 paracetamol. This was fine with the doctor.

On questioning the doctor as to whether I should perhaps just go ahead with the paracetamol he advised definately no, but that for a short period of 5 days when life was difficult I could 'up my dose'.

I am on 7,1/2mg a day and although the symptoms are back I am trying to keep to the lower dosage because of possible side effects.

Having discovered this website it has proved very helpful to read about other peoples problems and to now be able to say this is not just 'old age' and to have my condition dismissed as some of the other junior doctors at the practice had done.

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I dont know if i have this condition yet i'm waiting for results and test. The doctor at casualty suggested this. My symptons at the moment seemto happen during my monthly cycle when over the past 4months have increased. Started with my hands seizing up and then moved to my arm muscles and hands,this time it was arm muscles, hands and my leg. woke up with painful knee and by late afternoon knee looked swollen and muscle at top of leg was extreamly painful. I feel quite low when i get these bouts as i cant do anything. I would be grateful if any one would tell me if this was how it started for them. It has taken 7 different doctors visits and 4 months to finally get a blood test. So now I just have to wait.

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Last Nov' 2004 I was working and felt quite unwell at lunchtime - hot, dizzy, no appetite. I managed to get home and just wanted to sleep as my head was pounding, later I was very sick and ended up on the toilet most of the night. This went on for nearly a week - I hadnt eaten, kept a high temp. and could not eat - I just wanted to sleep. I tried to get up on day Monday & saw a locuum Dr. who said I had good old Gastroenteritis!! Just drink plenty of water etc. etc. Yet after 3 more days I felt my right knee getting tighter & swollen - I went to the hospital where I was diagnosed with 'Bursitis' - after another week my left knee swelled up. Yet I still felt unable to eat & couldnt walk. After another 2 weeks & more appts. at hospital & Drs. who couldnt help, I eventually found a Dr. who diagnosed me with 'Reactive Arthritis/Polymialgia'. I saw a specialist who drained my knees, injected them with steroids and it turned out that I had had food poisoning - we narrowed it down to 'tuna' sandwich that I'd bought!! It is now July 2005 I have nearly recovered - I take 4 Sulphasalazine tablets a day and can walk although my ankles & knees hurt. I have changed my diet & am a sort of 'Hunter/Gatherer' eating lots of fresh produce and this has helped enormously. I think back and I have had so many blood tests I am like a sieve and ended up off work for 6 months. The sun and heat helps too & I take a huge Cod Liver Oil tablet each day - I've only just started this and I'm waiting to see if they help. I am 39, live in the UK and the last eight months have been hell - I hope that I make a full recovery - Fingers Crossed!! By the way I'm fed up taking tablets but I tried to come off them & pretty soon found that I needed them. Its quite interesting that when you say 'Reactive Arthritis' - how many people have experienced this illness - all I can say is that if you have it get it seen to - BUT stay positive - YOU will get better!! Love Ginasnap

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I think I,ve had PMR for 8-10 yrs on and off,but only diagnosed in april this year,had pred[steroid]30mg then reduced to 5mg by july can,t always cope with this low dose but Dr says it must be! Have had 3 referrals [in the time prior to diagnosis]to consultants when pain in wrists/hands as it became too much to drive/write, have a bad back too; was told had pulled pectoral muscle,had injections in shoulder-2 ,knees -2;for arthritis ALL before diagnosis.I HURT EVERYWHERE[and still do at times]--my feet arches ached,my fingers/palms/wrists hurt,my thighs hurt,my upper arms hurt,even the cheeks of my bottom hurt and my back was much worse than my previous back aches--Ithink my back worsening in 2002 was the beginning of this episode . I could not get in/out of bath/bed and ached when in bed,nor could I pick up feet over thresholds . Iwill say that with preds Iam much better but get v v tired having to rest/sleep most afternoons and do have recurring symptoms,eg had to go to Dr this last w/end as Icould not breathe normally with the pain around my lungs which was diagnosed as PMR in that area ,also my hands and upper arms were v v painful. The two things that seem to be constant are the DREADFUL SWEATS any time of day or night,and DEPRESSION especially when it flares up again. I will say I was very relieved when finally diagnosed as I did fear that I had M S. You will find that you will learn to only do a little and often[not too often!!!] but that if you do"too much" you will pay. Hope this helps.Best of luck

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I would really like to find a help/email group of people who suffer/think they do from P M R ; it is very comforting/helpful to "talk" to fellow sufferers, for most people ,even one,s nearest and dearest really have little idea of many of the problems we have----------can anyone help?

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As you have researched this can you plse tell me if there are any other help/email group site for fellow sufferers, they seem to be thin on the ground.

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I initially noted symptoms of the disease in mid-June of 2005. I tolerated the increasing discomfort until mid-September when I went to my doctor. He did some blood work, reported back that everything came back negative, and then did nothing more. I switched doctors. The new doctor did a more complete set of blood tests including the tests for Lyme Disease. One of the titers came back for that and she prescribed antibiotics, orally taken, for a two week period. That didn't even phase the problem. At this point in time I had to take a leave of absence from work. My second doctor then referred me to a rheumatologist. I saw him at the end of November and he diagnosed me as having polymylitis rheumatic and prescribed Prednisome along with a calcium and vitamin D supplement to counteract bone density loss. At that point I had extreem difficulty getting around. Within an hour of taking the Prednisome I noticed an improvement in my physical condition. Within twelve hours I had most of my mobility back and twenty-four hours after initiating medication had just about complete freedom of movement. I still have some pain in various locations, but not to the point that it restricts my movements. According to my rheumatologist I will be on medication for about a year before he will declare me free of the disease. It was really amazing the drastic improvement I experienced with the intiation of proper medication.

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I was diagnosed with PMR in May 2005 aged 44; this was 12 years after a diagnosis of Myofascial pain syndrome, Fibromyalgia and Thoracic Outlet Syndrome, which forced me into very early retirment!!

My GP said they would never have considered the possibility of PMR at my age if I hadn't been severly anaemic.. so I am finally on the road to stability and less pain.

Never give up hope

8)

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Ten months ago I hurt my shoulder lifting. Then I caught a bad cold and ever since, I've been in extreme paind most of the time. It started out as stiff pain where I couldn't laugh without hurting my ribs, my thighs felt like knives were stabbing them, I couldn't roll over in bed and my shoulders felt like 20# weights were on them and on and on. Finally got on the prenisone about 6 months ago but I can't get below 10 mg. Now the stiff stabbing pains are gone but I feel like I have a terrible case of the flu especially in the a.m. I also take 16 mg. ibuprofen each day and if I take one before bed, sometimes I feel better when I wake. I'm wondering if there might be some form of nutrition that may help. I feel fortunate that this is supposed to go away within 2-5 years. GOOD LUCK EVERYONE - joan, California

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Eight months ago I awoke with extreme pain in right hip. Previously I was in very good health and strong, especially for 80 years old. I consulted my doctor who ordered X-rays, MRI and complete bone scan, all negative. The pain was not constant but worse after sitting for long periods, such as riding in the car. At this point, I am stiff in legs and hips in mornings and achy, but after being up and walking things are better. I take aspirin when needed and did not want steroids with the side effects.I do suffer from fatigue and rest during day. Otherwise I do daily meals for my husband and I, mow the lawn put trash out for pickup, etc. I find that I have not lost any strength in my muscles due to daily, normal use of them, even though it may cause discomfort. I have not had pain in my shoulders or back.

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I first noticed symptoms when I was just over 40, pains started in my feet at both sides, also my knees hurt. Then came the stiffness after resting i went to the doctors and they had exrays and blood tests done for arthritis, test came back negative. Docs said it is probably the start of arthritis. Took Arthrotec for 18 months, they helped with the inflamation, but then last year it all got worse, i would sit in the chair looking round at things that needed doing and just got so frustrated at not being able to get up because of the pain, and when i did I hobbled like an old woman. I downloaded some info on PMR and took it to the doctors, he said that all my sysmptoms were due to depression and gave me some tablets for this. The only reason i was depressed and tearful was due to PMR. Husband then took me to Docs, same surgery different doc and he agreed that although I was 'too young' for PMR he would send me to the specialist. meanwhile he prescribed steroids, i took 20mg per day ,and the pains had gone within a couple of days, I was like a different person up till 1 oclock in morning still full of beans. Went to my appointment at the hospital and the doctor was very cross and said that i could not possibly have PMR as I was too young. She said that I should not be taking steroids and wrote a strongly worded letter to my own doc. Over the year i have managed to completely come off the steroids, but the pains have returned, not as bad yet but they are getting worse. I know have swollen feet and hands again instead of the puffy face that the steroids gave me.I am coming up for 44 and just hope that it will go soon.

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[quote:7ef0ef8370=\"B.\"]As you have researched this can you plse tell me if there are any other help/email group site for fellow sufferers, they seem to be thin on the ground.

[i:7ef0ef8370]This message was automatically imported from the original Patient Experience[/i:7ef0ef8370][/quote:7ef0ef8370]

[quote:29769bbdf9=\"S. N.\"]Eight months ago I awoke with extreme pain in right hip. Previously I was in very good health and strong, especially for 80 years old. I consulted my doctor who ordered X-rays, MRI and complete bone scan, all negative. The pain was not constant but worse after sitting for long periods, such as riding in the car. At this point, I am stiff in legs and hips in mornings and achy, but after being up and walking things are better. I take aspirin when needed and did not want steroids with the side effects.I do suffer from fatigue and rest during day. Otherwise I do daily meals for my husband and I, mow the lawn put trash out for pickup, etc. I find that I have not lost any strength in my muscles due to daily, normal use of them, even though it may cause discomfort. I have not had pain in my shoulders or back.

[i:29769bbdf9]This message was automatically imported from the original Patient Experience[/i:29769bbdf9][/quote:29769bbdf9]

[quote:8b22f5a2ac=\"M. S.\"]I initially noted symptoms of the disease in mid-June of 2005. I tolerated the increasing discomfort until mid-September when I went to my doctor. He did some blood work, reported back that everything came back negative, and then did nothing more. I switched doctors. The new doctor did a more complete set of blood tests including the tests for Lyme Disease. One of the titers came back for that and she prescribed antibiotics, orally taken, for a two week period. That didn't even phase the problem. At this point in time I had to take a leave of absence from work. My second doctor then referred me to a rheumatologist. I saw him at the end of November and he diagnosed me as having polymylitis rheumatic and prescribed Prednisome along with a calcium and vitamin D supplement to counteract bone density loss. At that point I had extreem difficulty getting around. Within an hour of taking the Prednisome I noticed an improvement in my physical condition. Within twelve hours I had most of my mobility back and twenty-four hours after initiating medication had just about complete freedom of movement. I still have some pain in various locations, but not to the point that it restricts my movements. According to my rheumatologist I will be on medication for about a year before he will declare me free of the disease. It was really amazing the drastic improvement I experienced with the intiation of proper medication.

[i:8b22f5a2ac]This message was automatically imported from the original Patient Experience[/i:8b22f5a2ac][/quote:8b22f5a2ac] :lol: