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PMR now Fibromyalgia.

Posted , 10 users are following.

angelcake61
angelcake61

hi 

I started a discussion a few months ago about the pain I was experiencing.   I stopped taking prednisone about 6 months ago after 3.5 years but was never pain free from about 5mg, the pain never changed as I came down to nil over many months .   I now have other conditions such as carpel tunnel, diverticulitis, sciatica and foot problems after surgery to replace my big toe joint.  My feet really hurt, neck, forearms, knees, my esr rate is 18, the doctor has now told me I have fibromyalgia.   I've probably had it at the same tim as PMR. 

anyone else in the same boat , any advice for me please.

1 like, 11 replies

11 Replies

  • karenjaninaz
    karenjaninaz angelcake61

    Posted

    If you had these problems within a year after stopping pred the usual medical practice is to give ‘“stress” doses of steroids for a short time only. Did you tell your doctors?
  • angelcake61
    angelcake61

    Posted

    My reasoning is that if it was/is PMR then I would be a lot worse by now, not having taken predict for so long.    Tomorrow I start on amitriptlyne at night and Naproxen twice a day, so I'm presuming if they bring it under control it defineatley isn't PMR.

    What are your thoughts.   I've not heard of the 'stress' dose maybe you could enlighten me more, I'll ask then when I next go to the doctors.

    thank you 

    • EileenH
      EileenH angelcake61

      Posted

      Me - never heard of it. And no - don't see why it would have to get really bad - if the PMR is still active but at a low level it might not.

      But amitriptilyne doesn't always work for fibro and naproxen certainly doesn't. Starting both at once seems silly - you won't know which is helping if something does change. And there are other things - so why did the doctor plump for fibro?

    • angelcake61
      angelcake61 EileenH

      Posted

      I sometime take amitriptilyne for sciatica and restless legs( yet another problem) I think the Naproxen was for fibro, I know it doesn't work for PMR, so I thought if it did work then I knew it wasn't PMR.

      After telling the doc of my problems she took my esr levels, which at 18 she beloved with my history levels, it not PMR and so gave a diagnosis of fibro.

    • EileenH
      EileenH angelcake61

      Posted

      Do you know how low your ESR went? Mine at 18 would be about 4 times its normal level!

      Fibro isn't the only thing on the menu - she's being lazy. Does the amitriptilyne work when you do take it? If it doesn't then - it is unlikely to do so now is it? And no - Naproxen might work for inflammatory arthritis. It won't work for fibro. 

    • angelcake61
      angelcake61 EileenH

      Posted

      The amitriptilyne works for a while through the night for sciatica and restless legs, it wears off so I wouldn't know if it worked for the other stuff, only in 10 or I can have 20 mg.  she did say to start and take it regular now.

      I do have swelling on the underside pad part of my feet just below 

      my toes and at the base of my toes topside too, I'm almost cripple when I wear shoes or boots, bare feet and flip flops are fine. I'm due to gave the silicone implant took out and the joint fused, but I wanted to make sure the implant is the culprit.

      Would my ear level be higher if I had inflammatory arthritis?

      i know my esr and cpr was in the hundreds and came down to 53 when I'd been on steroids for a short while.

      she said the bowel problems, restless legs, migraines, pain all go with fibro.

      I don't know much about fibro, I know I'm struggling to walk, getting up from a sitting position I can't lean on my hands to help me up, I can't grasp things well either.   It's been going on for soooo long. 

      Thanks for your replies x

       

    • karenjaninaz
      karenjaninaz angelcake61

      Posted

      The first year after pred is discontinued the adrenal might be back for normal activities but not for a “stress” like surgery or anew illness. Those are more of a demand for the adrenals.

      This we did when I was working as a nurse-anesthetist. We would give IV steroid during surgery and a short time after. 

      If they give you a steroid dose  pack and your symptoms abate  you will have an answer.

    • angelcake61
      angelcake61 karenjaninaz

      Posted

      I did have extra shots of steroids when they had surgery, I will ask the doctor if I need to do so again. Thank you 
  • amkoffee
    amkoffee angelcake61

    Posted

    This may seem very simplistic but has anyone checked your thyroid? Thyroid disorders like hypothyroidism can cause joint pain.
    • angelcake61
      angelcake61 amkoffee

      Posted

      I do have am under active thyroid and the doctor did mention having a repeat blood test in the new year. Thank you 
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