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i have asked before and am sorry to repeat myself regarding fibromyalgia

Posted , 5 users are following.

liz23617
liz23617

Hi everyone i was diagnosed with fibromyalgia about 10 years ago and the more i read about PMR the more it sounds almost the same. iam awaiting to see my GP re; the results of blood tests checking my inflammation levels. unfortunately my appointment is  not until late next week! I am increasing my preds from 5mg up to 10mg 2 days ago and am trying 15 mg today. my problem is and always has been knowing what is fibro and what is something else, ie. new pain, or diffrerent pain or something just not right, which the drs seem to dismiss and put everything down to fibro.

By the way the only pain relief that has worked on my fibro is prednisolone which i was given last year for a flare up and worked almost straight away, actually i asked the dr why inhadnt been put on them before!

2 likes, 6 replies

6 Replies

  • pat38625
    pat38625 liz23617

    Posted

    Hi Liz, welcome to the forum.  I am a newbie and have no medical background.  One thing I know from my experience and from this forum is that with PMR the only thing that works is steroids.  I know that amytripiline works for fibromyalgia not steroids.  Anyway someone with more experience I am sure will be along soon to answer your questions.  Good luck on your journey.     Pat
  • linda17563
    linda17563 liz23617

    Posted

    Hi Liz,  i have both, have had Fibro for last 10 years (20years ME) the pain with PMR felt very different when it started.  Shoulders, ankles, severe stiffness and of course that lovely word Fatigue!  Fibro pain to me is more like burning nerve pain, and I don`t know if you`re the same, but I can touch the place it hurts and nearly hit the ceiling!!...nothing has helped that I tried with fibro pain...but then I can`t tolerate meds at all well.  When I had blood tests at the start with PMR, they were sky high, and the steroids were wonderful....for almost all of the pain whatever caused it.  I was like a car with a new engine!    I now have fibro pain back, while trying to lower the steroids....and I agree it`s tricky....but I was told steroids are not for Fibro.......I do get blurred vision on the steroids, which my doctor thinks is a fibro problem, being made worse by the Prednisilone.....it`s a minefield.....good luck, and keep us posted if you need to....
    • pat38625
      pat38625 linda17563

      Posted

      Liz like Linda I had ME for 14 years and Fibro and I can honestly say that I have never experienced pain like PMR pain.  On a scale of 1 to 10 on pain level, 10 being the worst then I would say my PMR pain would be 15 but as soon as I took steroids it was like a magic pill within a couple of hours and then within a couple of days I started to feel near enough 100%.  
    • Sheilamac_Fife
      Sheilamac_Fife linda17563

      Posted

      Hi Linda!

      I too have blurred vision from the steroids. I do not have Fibro.

      Sheila

  • EileenH
    EileenH liz23617

    Posted

    There are a lot of overlaps between fibro and PMR - the only difference is that PMR pain responds well to 15mg or so of pred (there should be something like 70% general improvements within a few days) whereas fibro is not changed by pred. It is possible to have both at the same time. 

    If pred worked last year - then you need a doctor who will consider that what you have is NOT fibro but PMR and treat it accordingly. Very few people become totally pain-free even on higher doses of pred so some residual pain is normal and it remains a possibility there is also something else going on - such as myofascial pain syndrome or other muscle problems or bursitis. Even if your blood tests for inflammation are normal that doesn't rule out PMR - about 1 in 5 patients does not have elevated ESR or CRP.

    If your current medical team aren't helpful - find another.

  • Sheilamac_Fife
    Sheilamac_Fife liz23617

    Posted

    Hi. Liz

    Looking forward to hearing how you are getting on with 15mg Pred. I hope it is working for you. It sounds like you had a short course of Pred last year which is strange because if it took the pain away or even almost away, you should have been on it long term, slowly reducing over a period of years until the inflammation is gone.

    Good Luck!

    Sheila

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