polymyalgia - can you help?

Discussion in 'Fibromyalgia Main Forum' started by jfrustrated, Oct 28, 2005.

  1. jfrustrated

    jfrustrated New Member

    A friend of mine, who does not have internet access, has been diagnosed with polymyalgia in her early 50's. She has got lots of formal material on the condition, but no one who has it to talk to. Can anyone provide some information on these sorts of topics: what medication really does or does not work, real side effects, pain management, related illnesses, alternative treatments, how it has affected their life - in and outside work, psychological impact, the sort of thing that the doctor and the medical texts do not talk about. Any info. appreciated. Thanks.
  2. Empower

    Empower New Member

    I assume you are talking about polymyalgia rheumatica?

    If so, my mom has it, although she is in her 80's.

    To her, it is like fibromyalgia, pain and stiffness and feeling lousy and flu like.

    She is very sensitive to meds, so she takes a small dose of Prednisone when she is having a really bad day.

    We have learned that some people with PR, develop Temporal Arteritis, where they experience bad headaches, and numbness in their face. You can have a biopsy done on your temples to check to see if it is present. It is very important to have this checked out if by a doctor.

    If she hasn't already done so, she should see a Rheumatologist for this.

    Post anytime and I will try to tell you what I know from experiences with my mom
  3. jbennett2

    jbennett2 New Member

    Just this morning a person it town was telling me about her bout with polymyalgia a few years ago. She was treated with steroids and is completely normal now. She was telling me this because she knows I have FM & Lyme.
  4. CarolK

    CarolK New Member

    I had POLYMYALGIA RHEUMATICA for about two years. I had the aching all over, felt like I had the flu 24/7 and also had the "geling sensation" in my joints. I felt like there was some gel in all my joints limiting my movement. I had fatigue and I had headaches but, THANK GOD, did not get GIANT CELL ARTURITUS.... which can lead to blindness!! I took predinisone for a year to get my SED rate down... which it did do.

    I went in for periodic blood checks to see if the inflammation in my blood (SED rate) was going down. It went down slowly over the course of a year. I also had low grade temps with it.

    After withdrawing from the prednisone, and be sure to tell your friend that she must SLOWLY WITHDRAW from prednisone type drugs... they are powerful steriod anti-inflammatory drugs. I did go to a rheumatologist to treat this disease.

    I don't think they know what causes it... however, after the PMR left... that is when I got FIBROMYALGIA AND CHRONIC FATIGUE. Are the two related??? I don't know. Did the prednisone therepy trigger FM or CFS.... who knows. All I know is that after the PMR passed... I then had full blown symptoms of the FM and CFS.

    Tell your friend to educate herself about PMR... I know that I felt miserable with it... but the good news is that it does seem to run it's course and then go away or go into remission. So far I have not had a recurrence of it. AND YES!! PMR DOES FEEL DIFFERENT THAN FM!! SIMILAR SYMPTOMS... BUT THE PAIN AND THE GEL FEELING IN THE JOINTS DOES FEEL DIFFERENT THAN FM.


  5. sofy

    sofy New Member

    I was only 48 and had tested positive for lyme. Went on Doxy for 8 weeks and made a tiny bit of progress but still couldnt touch my knees or raise my hands over my head.

    The docs were of the opinion that 3 weeks of doxy cures lyme. That only true if you catch it right away but most docs dont know or want to hear that.

    They pumped me up with steroids and lots of other drugs for 2 years and boy do my bones tell the tale of that abuse by the medical profession.

    More than a dozen years later I now know I had and still have chronic lyme disease.

    PMR, MS, Lupus etc. are all syndromes and there is no difititive way to diagnose them.

    No doc will ever tell you what the underlying cause is for any of these things they just treat the symptoms regardless of the long term detriment to your body from the treatment.

    Please talk to her and encourage her to talk to her doc about eliminating any and all bacterial causes before letting them treat her for something that they dont know why or how she got.

    I wish her all the luck.
  6. rigby

    rigby New Member

    My PCP dx me with this years ago treats me with steriods really helps. But then also dx with FM just know antiimflammory and steriods help when muscle are hurting so bad nothing else helps but steriods but only on for short terms at a time. Sharon
  7. jfrustrated

    jfrustrated New Member

    Thanks for all the info. I shall be seeing my friend tomorrow and will pass it on. Any more about how people cope on a day to day basis would be appreciated?
  8. KelB

    KelB New Member

    My Granma was diagnosed with polymyalgia - she had excruciating pain in her shoulders, neck, head and down her right side.

    It took a battery of tests over three weeks to narrow the cause down to an infected heart valve. Once that had been cured, the polymyalgia cleared up.

    Polymyalgia can be caused by many underlying conditions, many of which can be treated. I don't know the tests my Granma had - maybe digging around on the internet might throw up more info?