1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

My doc suspects PMR

Posted , 13 users are following.

briej
briej

I've been dealing with extreme pain and inflammation for about a year now. My rheumatologist finally told me today he is leaning towards PMR. My ESR has consistently been in the 70-80 range with an elevated CRP. The doc has thrown several prescription NSAIDs at me with minimal results. He's refused to accept this diagnosis because of my age(36) and has finally relented and put me in 10 mg of prednisone twice a day.

I could cry tears of joy right now. I can't remember the last time I went to bed without dreading the climb upstairs or tossing for 2 hours before I could find a position that didn't put pressure on muscles that were throbbing. I still have areas of slight tenderness but I am feeling nothing but absolute relief tonight.

Does this confirm my docs suspicions?

0 likes, 40 replies

40 Replies

Next
  • ricky23486
    ricky23486 briej

    Posted

    Your description of how will be very familiar to many of us on this forum.

    I am appalled that your rheumatologist let you suffer such pain for a whole year. I wonder how experienced he is....?. Granted you are younger than most recorded PMR patients...and he probably wanted to avoid dosing you with steroids. But the presentation is right which suggests that maybe there are a lot more young people out there suffering like you just because they don't belong to the right age group. Glad you are at last going to have a good night's sleep.

    • briej
      briej ricky23486

      Posted

      I am wondering if it's because of my age?? When I was referred to this rheumy my MIL warned me to switch. She has fibro and he is very old school and not big on a fibro diagnosis. It's been a tough road and I've often felt like people assume I'm drug seeking(mind you, I've never been prescribed narcotic pain meds through this ordeal).

      At one point he told me I have all the fibro trigger points but I have labs that show high inflammation. I just randomly began poking at different areas of my body and said, "I may have the trigger points, but it also hurts here and here and here and here!".

      I don't present with shoulder pain. As a matter of fact the shoulders are the ONLY area that doesn't hurt. From my triceps down to my wrists constantly ache. And I don't even know that I would say ache because there are days I have no grip strength and can't even turn a doorknob.

    • EileenH
      EileenH briej

      Posted

      Some of the fibro trigger points coincide with the myofascial pain syndrome trigger points - and MPS is commonly found alongside PMR and sometimes it is difficult to know if it is MPS or PMR that is causing the problem. For me, if the MPS is bad - so is the PMR. But if I get the MPS sorted out - the PMR improves too and I need a lower dose of pred.

      Your MIL was spot-on - anyone who sees raised labs and thinks fibro isn't just "old school" he need a refresher course! 

      Your last paragrah sounds just like I was - my shoulders didn't HURT - but I like to sleep with my arms above my head and I just couldn't do it. It wasn't pain - it was just stiff. I also had tendonitis from the outside of my elbow diagnonly across to the inside of my wrist. It did eventually go away on pred but it took a few months.

    • Guest
      Guest briej

      Posted

      I am sorry that you had to suffer so long. It took me 2 months to get a diagnosis. The pain and stiffness crawled up from my hamstrings, then my back and up to the neck. I was unable to turn my head and felt like in a cocoon. As soon as I moved slightly I was in pain. 

      I never had shoulder pain. I described my symptoms very detailed and told the MD they should look for a connective tissue disease, but had never heard of PMR before. Pred was my miracle cure.

    • jean12178
      jean12178 Guest

      Posted

      Mine is staying in my neck...cannot turn head without pain, cannot put ear to shoulder, or bend head back...could be because of cushings syndrome(bufallo hump) in middle of upper back  just under neck area....cause of buffalo hump is too much prednisone....fat gathers into hump, causes tightess...also...when on prednisone your  BP will rise...and you need to take calcium as prednisone depletes bone...
    • EileenH
      EileenH jean12178

      Posted

      Unlikely I think Jean - I'd ask for a physiotherapy session and get them to investigate the state of your neck and shoulder muscles.

    • Guest
      Guest jean12178

      Posted

      Thanks, Jean. On how many mg are you?

      I am down on 1.5 mg Pred with the DSNS method what works so far pretty good, but will stay there for probably another week. Had a flare up in January. My rheum wants to go down faster.

      I take Ca, Mg, Vit K (someone on this forum recommended it), healthy nutrition and exercising to do something for my beginning osteopenia/osteoporosis. I had a scan 3 weeks ago.

  • dboza
    dboza briej

    Posted

    I was diagnosed with PMR by my internist, pretty much right away. I was given 20mgs. Prednisone and it was like a miracle drug. It took almost a year to finally wean off it completely. My doctor thinks this is my second flare up. My first one was when I was 37. The first time, I was sent to a rheumatologist and I was tested and he couldn't figure out what it was. He thought it was a virus. I wasn't given prednisone, just strong NSAIDs. I finally knocked it out of my system with a case of the chicken pox! This flare up was diagnosed as PMR. I am doing pretty good right now..

    • dboza
      dboza

      Posted

      I forgot to mention my 1st flare up was 20 years ago.
  • stanley36717
    stanley36717 briej

    Posted

    After a failed surgical procedure for a blocked artery I experienced severe leg pain the very next day. I couldn't roll over in bed. For 4-5 months I underwent many tests to find the reason. I finally Googled "high sed rate". Polymyalsia Rumatica had all the symptoms; night sweats, low iron, joint pain, etc. The next day I received Prednisone and my pain was gone. Then I had a temple artery tested for GCA and received a false negative result and  lost some vision in my left eye. That was 4 -5 years ago and I'm on 4mg of Pred a day. I have gained 20 lbs and have moon face. I'd like to get off this stuff but don't want to go blind. I believe that being a "C-Section" Preme baby has something to do with Auto-Immune problems.

    • Rimmy
      Rimmy stanley36717

      Posted

      Hi Stanley

      Where's your 'evidence' for links between being a prem baby and c-section causing auto-immune conditions like PMR ? I wasn't either of those and I wonder if (m)any others even on this forum were !!??

      Best

      Rimmy

    • Anhaga
      Anhaga Rimmy

      Posted

      There is in fact growing evidence that c-section babies may have incomplete immune systems owing to the fact that they did not receive their mother's dose of microflora at birth.  This can be overcome, and ways of doing this are being developed, but both this factor and the much more comon one of repeated antibiotic treatment may be a key factor in many modern diseases - not the only factor but much more important than we were aware of until just a few years ago.

  • pauline36422
    pauline36422 briej

    Posted

    hi briej    i was 18 month   before  final diagnosis. and that was at my suggestion

    why oh why does it take so long  before the  docs   or  rhumies  come to there desicion.      it was my   neice   who is a gp   said  she  thought it was pmr.   then i told my  doc.    he then said  we will try u on steroids   see  what  happens. and it worked     lol xx

     

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.