Wondering if pain is Polymyalgia rheumatica
Posted , 5 users are following.
I have been diagnosed with fibromyalgia 3yrs ago, after many years of pain. I am now considering Polymyalgia rheumatica. I am almost 65yrs.
I have bilateral severe groin pain with the right side worse. Have had groin pain for 30yrs x-rays indicate mild Osteoarthritis. Orthopedic specalist said hip in reasonable condition he has no idea what is causing so much pain. Rheumatologist says its "Widespread soft tissue pain" he does not like the term "fibromyalgia". Pain specalist says "due to lack of any other diagnosis its probably fibromyalgia"
About 3 yrs ago this pain increased almost overnight to a severe pain in my groin. The pain wakes me at night it goes from groin along the front of my thigh then into the knee. I can lay on my rightside pain free for about 20mins then this very severe pain starts, I turn over to my left side and the right side still hurts, turn onto my back and pain improves however lately even on my back it takes a very long time to improve maybe now about 30minutes. I always wake stiff and sore in several places but maunly hips and fingers. It takes about an hour before I feel better. Recently I have been waking up from my sleep with pain in my hands, the knuckles in my fingers are stiff and painful they feel swollen but dont look swollen. I do not feel this is related to the fibro problems.
Wondering if anyone else has this and could it be Polymyalgia rheumatica. I just want some relief from severe night pain instead of being told its fibro and there isnt much we can do to help with the pain. I cant believe I can have this much pain and there is no help.
Thank you
0 likes, 16 replies
MrsO-UK_Surrey RosemaryAmy
Posted
As you have seen several consultants from different fields, I'm assuming you have been given blood tests to check for markers of inflammation, specifically ESR and CRP tests? These can be raised in patients with PMR but not in those with Fibro. Having said that it isn't a foolproof test as around a quarter of PMR sufferers never have raised markers. The markers can also rise in the case of infection. However, in PMR, it is often used as a diagnostic tool when other conditions have been ruled out.
Perhaps your GP would agree to prescribing you a trial dose of the steroid Prednisolone at 15mg for a week or so. In the case of PMR, around a 70% relief in pain can be seen in a few days or even hours. PMR and Fibro are difficult to tell apart, except that PMR will respond to steroids whereas Fibro won't. Are you taking Amitryptiline for the Fibro?
RosemaryAmy MrsO-UK_Surrey
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I have tried Amitryptiline however developes a severe case of hives so had to stop.
paula63201 RosemaryAmy
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I was first misdaiagnosed with Fibromyalgia and realized it could not be the case as my symptoms were different from Fibro and very specific. I had a pain and stiffness on both sides: groin, shoulders, neck, then eventually, after not being diagnosed (except for theFibro, which was wrong) the pain moved to wrists, knees and then down the calves. I had elevated CRP and ESR. Happily I found a different Rheumatologist, who diagnosed PMR and put me on 20 mgs of Prednisone. The symptoms disappeared within a few days. Now, 14 months later, I am down to 7 mgs of Prednisone, the ESR and CRP are normal on that does of Prednisone and I have no pain.
I also test positive for HLA B27. There are a number of autoimmune diseases associated with this antigen, but you don't actually have to have any of them, even though you have the marker. I have PMR only, at this time (thankfully!!)
I am not an expert, so I bow to the more knowledgeable on this forum, such as Eileen. I don't know relationship of HLA B27 and PMR, but I don't think it is a strong one. However, PMR is more prevalent among people of Northern European descent and more so among Scandinavian descent. In Northern Scandinavia, 24% of people are HLA-B27 positive, while 1.8% have associated ankylosing spondylitis. (Wikipedia).
I like MrsO's idea of doing a test run of Prednisone/Prednisolone. It worked to diagnose my PMR conculsively.
All the best,
Paula
Hope you feel better and wish you all the best.
Paula
RosemaryAmy paula63201
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cindy63197 RosemaryAmy
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RosemaryAmy cindy63197
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EileenH RosemaryAmy
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It is possible to distinguish between the symptoms that are common to fibro and PMR by trialling a moderate dose of pred: 15-20mg/day maximum should achieve a 70% overall response of symptoms within a few days. If there is a lot of bursitis that pain will take longer to respond. However, PMR responds, fibro pain will not be improved by pred.
RosemaryAmy EileenH
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Most of the day the groin pain is mild however walking up stairs is painful, getting up from the chair, getting in and out of the car, too much walking, and putting on a sox are all painful. Pushing the hip sideways hurts as the hip is stiff, however the worse pain comes during my sleep. I must roll over onto my side that pain wakes me, is its an unbearale pain in my groin down to knees and sometimes as far as the ankle, this pain is in the front of my leg.
Sometimes I maybe sitting in my recliner and the way I am sitting will cause the pain I have to quickly re position myself before the pain gets the better of me. I have always put all this down to oestoarthritis, but recently my fingers, wrist and ankles have been sore with the hands also waking me, these joints are stiff. I just have a feeling this is all rheumatic rather then fibro. My shoulders are all OK
EileenH RosemaryAmy
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Another option would be myofascial pain syndrome affecting the trigger points in the lower back which can cause muscle spasms that pinch the nerves and cause referred pain into the hip, thigh and further down the led.
However, the symptoms you are describing definitely sound "rheumatic" in origin, and it needs looking at more closely because late onset RA could start like that - as could other things. If your current rheumy is unwilling to consider ruling out a progression or new onset illness you should look for another.
RosemaryAmy EileenH
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EileenH RosemaryAmy
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RosemaryAmy EileenH
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EileenH RosemaryAmy
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RosemaryAmy EileenH
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EileenH RosemaryAmy
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Hope you DON'T have to wait that long.
RosemaryAmy EileenH
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