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Wondering if pain is Polymyalgia rheumatica

Posted , 5 users are following.

RosemaryAmy
RosemaryAmy

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

16 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey RosemaryAmy

    Posted

    Hi Rosemary

    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
      RosemaryAmy MrsO-UK_Surrey

      Posted

      Thank you MrsO I appreciate your reply. I am sure ESR has been done over the years but not sure re CPR. I know I have a positive HLA-B27 do not have ankylosing spondylitis, not sure if this plays any part in PMR. I see my GP next week I will ask about a trail of Prednisolone as that seems the easiest way of knowing if the pain is PRM. Are there any questions I should ask my GP to check out?

      I have tried Amitryptiline however developes a severe case of hives so had to stop. 

  • paula63201
    paula63201 RosemaryAmy

    Posted

    Hi Rosemary,

    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
      RosemaryAmy paula63201

      Posted

      Thank you Paula. I am not convienced I actually have fibro, but cannot understand why the Rheumatologist did not consider PMR. I am feeling rather annoyed that I may not be correctly diagnosed and I have to do all the research myself. I want to scream at him and say this pain is real bad surely there is something wrong. My GP is pretty understanding I will not be leaving her rooms next week without a script for Prednisone as that seems the easiest way to see if this is PRM.
  • cindy63197
    cindy63197 RosemaryAmy

    Posted

    I think the trial of prednisone would be a great idea. I was also wondering if your back has been checked for a herniated disc or pinched nerves. Do you have numbness or tingling?
    • RosemaryAmy
      RosemaryAmy cindy63197

      Posted

      Hi Cindy, I do have issues with my neck and lumber areas and every 6 mths I have a great specalist who does a procedure called Rhyzolysis (burns the nerves in the facet joints). This helps me such a lot, unfortunatly the nerves grow back so around 6 to 7 mths I need the procedure repeated

       

  • EileenH
    EileenH RosemaryAmy

    Posted

    A very high level of suspicion should be directed a trochaneteric bursitis for the hip and thingh pain and that can be helped by local cortisone injections. 

    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
      RosemaryAmy EileenH

      Posted

      Hi EileenH, thank you for replying, I do have have problems with trochaneteric bursitis I know that pain very well, but this groin pain is very different.

      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
      EileenH RosemaryAmy

      Posted

      Yes - that all sounds familiar to me. The pain that happens when trochanteric bursitis spreads into the groin is different from the rest of it though - and is made worse by walking, especially steps, and all those movements you describe. 

      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
      RosemaryAmy EileenH

      Posted

      Yes I will be changing rheumatologist as I am not happy with this one.
    • EileenH
      EileenH RosemaryAmy

      Posted

      No, sorry, it would be a long way to get to any rheumies we can recommend! That's why I asked though I did rather assume you weren't in the UK.
    • RosemaryAmy
      RosemaryAmy EileenH

      Posted

      Its about a 6mth wait to get into a rheumatologist here.
    • EileenH
      EileenH RosemaryAmy

      Posted

      Hope you don't develop GCA then!! 6 days can be too long then.The UK isn't brilliant but I think you could see a rheumy sooner than 6 months if you went about it the right way.

      Hope you DON'T have to wait that long. 

    • RosemaryAmy
      RosemaryAmy EileenH

      Posted

      Thank you EileenH, I would be able to get into my current rheumy within about 3 mths but a new one is about 6mths. So far not worried about GCA but aware that is something that maybe an issue
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