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Why does Dr. want to change my diagnosis?

Posted , 7 users are following.

DebbieHurts
DebbieHurts

Hey all, I’m so glad you are all here to come to for support.  It means that I have some people in the world who understand.

I wonder why my rheum. Dr. is trying to convince me that the pain I’m feeling is fibromyalgia.  Why is he changing his diagnosis from Polymyalgia to Fibromyalgia?  Here’s what I want to tell him: I’ve had fibro for 30 years and know what it feels like.  Then about 3 years ago I got this extra pain, a firey pain in my shoulders, arms, hips, legs.  My general dr. sent me to you (Dr. P.) about it, and when you gave me the pamphlet on PMR, the symptoms exactly fit this new pain.  I was thankful for knowing what it was.  And then the prednisone helped me right away.  

At the beginning my SED was 45.  That was when I was not being treated.  With pred. it went down to 20.  Then as I tried to reduce the pred. it went up bit by bit, and then I had pneumonia and the inflammation was much higher.  Since then I’ve tried to reduce the pred gradually, but then at 13mg I had a flare up.  I went back up to 15.  At 15mg my SED is still high at 40 when I took a test last week.  I am in so much pain!  I sleep a lot to get away from the pain, which I know is not good. 

Is it true that this is fibromyalgia, and I‘m wrong to think it is PMR?  Why does he want to change the diagnosis?  Just to get me to stop the prednisone?  What do you all think? 

0 likes, 7 replies

7 Replies

  • constance.de
    constance.de DebbieHurts

    Posted

    Rheumatologist, and also most Drs, want you off pred asap, or sooner!!!

    I'm no expert (they will advise later), but you certainly have got PMR in my opinion.  If you have had fibro for 30 years you will know more about it than your rheumy ever has.  Listen to your body - if it is telling you that you have PMR, then  it is  probably right (especially if you have an elevated SED).  All you have to do is convince your rheumy, or preferably get a new one!

    All the best.

    Constance 💐

  • Flutterbie57
    Flutterbie57 DebbieHurts

    Posted

    I have had Fibro for many years then earlier this year a new excruciating pain and stiffness hit me in the upper body/neck and lower hip area - totally different to pains from Fibro. My Osteo first suggested it may be PMR, then Dr said that if Pred helped this new pain, almost immediately (within 24 hours), then it would almost confirm that I had PMR as well. I know there is no absolute diagnosis,but my Dr thinks that if you  improve quickly on  Pred then you have PMR as it does not help Fibro pain. I don't take drugs for Fibro, I manage it with excercise stretches, and Osteo. This did nothing for my new pain and stiffness
    • lodgerUK_NE
      lodgerUK_NE Flutterbie57

      Posted

      "but my Dr thinks that if you  improve quickly on  Pred then you have PMR as it does not help Fibro pain"

      Your GP does not 'think'  he 'knows', Fibro does not respond to pred at all.  PMR does.

      You have a good GP, stick with him.

  • DebbieHurts
    DebbieHurts

    Posted

    Thank you all for replying.  I see I'm not alone.  I have an appt with Dr. next week.  Wonder what he'd say if I gave him the above note to read?  He is really a nice guy, but --
    • lodgerUK_NE
      lodgerUK_NE DebbieHurts

      Posted

      try it and see if he improves and then come back and let us know

      He might just have a idea moment.

  • penelope10875
    penelope10875 DebbieHurts

    Posted

    I sympethise, I'm sure they don't really believe in PMR

    I finally saw a Rheumy after 3 years of PMR, he said that my PMR had 'gone' because my sed rates had been low for a long time, and that the pain I still feel is arthritis and I should stop the steroids a.s.a.p.  I know the diference between the arthritis pain (bone) and PMR (Muscles) ! ! The silly thing is that I didn't question it at the time.

    I've had more help and advice on here than I've had from any Dr and am doing it 'our' way. Down to 8mgs, a little 'muscle' pain to buttocks, but not bad. My arthritic feet are killing me!

    • lodgerUK_NE
      lodgerUK_NE penelope10875

      Posted

      I wonder if Flexiseq (bio-mechanical)  would help your feet. ARC developed it with a German comapny and has a article on it on their website.

      It works like WD40.  I use it on my knees and found the joints on my hands had improved and wondered why, I then realised it was the gel as you put it on and then have to wait 10 minutes before moving - ergo the gel was on my hands for those 10 minutes before I washed them.   Worth a shot?

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