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Does anyone think this polymyalgia ?

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linda54686
linda54686

2 yrs ago i started having pain across my shoulders which moved to my arms holding anything hurt terribly. After a month or so the pain went from.my arms but then started in my thighs and glutes i couldnt sit for long as it was so painful.even to drive.it felt like sciatic pain from my glutes to my knees. And burning pain in the of my front thighs which often feel stiff....but seemed to ease laying down at night..i slept well. I have had every blood test available... All clear ive had mri of back/spine/hips and ct scan all clear ..had emg/nerve conduction tests all clear.. my blood shows no inflammation.. i was given a pred shot which stopped my pain for couple wks! Seen rheumatologists.neurologists. but no clue.

.. i was then put on amitriptyline which helped then it all went away after having some physio (while on amitriptyline) and dry needling.. i cut down and stopped the amitriptyline and have been pain free for about 2 months but now its all started again pain across shoulders. Some stabbing pains in arms/legs like a paint ball shot! And all the thigh pains and hip tenderness i have no fatigue but just want to be diagnosed soon this is 2 half yrs now and its making me miserable..im 59 female..can anyone help with ideas thankyou kindly

0 likes, 5 replies

5 Replies

  • linda54686
    linda54686

    Posted

    Ps i also now have painful knees back and front and elbows
  • EileenH
    EileenH linda54686

    Posted

    It could be PMR, the symptoms fit and the response to pred too - and obviously your doctors have ruled out all the other options! PMR can (and frequently does) go into remission on its own - and relapses are not uncommon in the first 2 years or so. About 1 in 5 patients never have raised blood markers for inflammation.

    You could also have myofascial pain syndrome - ignored its effects spread and needling does help a lot. However - that it improved with amitryptiline is going to cloud the picture because there will be doctors who decide it is somatism. It is also strange if it is PMR that you have no fatigue. 

    Can you find a doctor - a GP would do if it were the UK  - who will let you try a course of 15mg pred? 

    This is the resources page here:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    Print off the reference you get under "Bristol paper" and also google these

    POLYMYALGIA RHEUMATICA IN PATIENTS WITH A NORMAL ERYTHROCYTE SEDIMENTATION RATE SIMON M. HELFGOTT and RAPHAEL I. KIEVAL 

    Polymyalgia rheumatica with normal erythrocyte sedimentation rate: clinical aspects.Martínez-Taboada VM1, Blanco R, Rodríguez-Valverde V

    where they report on the number of patients with PMR with normal or only slightly raised ESR.

    take them to a doctor and discuss the possibility. If a short course (up to a couple of weeks) of 15-20mg pred/day makes a significant difference to your symptoms then there is a chance it IS PMR - if it doesn't you can stop immediately without any problems.

    And if it makes a difference that will at least afford you some pain relief and add to the evidence. Fibromyalgia does not respond at all to pred - so if you feel better, it isn't fibro.

    • linda54686
      linda54686 EileenH

      Posted

      Thankyou both eileen and daniel for your kind replies... i see the doctor this morning and he has put me back on amitriptyline and started me on prednisolone 5mg 3x daily for the 1st week and gradually tapering down for a month. he said if it is polymyalgia that pred does not cure it but stops the pain so as im fine on amitriptyline il be on that instead of staying on pred and see how i go....do you know is there much chance of polymyalgia going away for good?.. i have read about myofacial syndrome maybe il know soon.. this all started when both my daughters were diagnosed with dreadful illnesses..one had cancer age 23 but im happy to say is now 3 yrs in remission the other with a rare brain disease so i

      Maybe the shock hit me physically too. .. i do wish you both well and hopefully we all rid this condition but i guess we could have worse so wont let it beat us and carry on enjoying life to the full ..so good to hear you are now pain free daniel..i guess its a case of cutting the meds now and then to see if the pain is still there...

    • EileenH
      EileenH linda54686

      Posted

      For 75% of the people who develop PMR it burns out and goes into remission in something between 2 and 6 years. Some of us have it longer. But you can't tell in advance where you will be on the spectrum.

      Bit silly starting both pred and amitryptiline - he won't know which is working and a month of pred is by no means enough for PMR. On the other hand - amitryptiline doesn't usually do anything for PMR.

      Good luck.

  • daniel08939
    daniel08939 linda54686

    Posted

    I have PMR twice and both times all the blood tests were normal. The major clue that it was PMR was the symptoms and an incredible reponse to prednisone. Your symptoms sound like PMR and you responded well to prednisone. The second time the rheumatoligist said he had no idea what I had but if prenisone works-we will treat your unknown disease with prednisone. I am now at 6 mg after six months and pain free.
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