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Newly diagnosed PMR patient

Posted , 9 users are following.

heather39822
heather39822

After several weeks of unexplained crippling pain, x-rays, MRI scan and courses of anti-inflamatory and painkiller medication that had no effect, I was diagnosed with Polymyalgia last month (June 2014). I live in Zimbabwe, and not knowing anyone who has this condition here, feel very isolated in my ignorance of the condition. I hope fellow sufferers will provide me with advice and information. 

1 like, 24 replies

24 Replies

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  • GM70
    GM70 heather39822

    Posted

    Hello Heather. I am not able to help you as I am myself newly diagnosed but I just wanted to say that I have received a fantastic amount of help, advise and support on this sight in just a few days. It has been truly amazing. I am sure you will find it the same. Just read as many posts as you can they are all so helpful. Good luck. 
  • jean39702
    jean39702 heather39822

    Posted

    Youve come to the right place Heather.  I was diagnosed with PMR in March of this year and would have been lost without these folks.

    I hope you are able to gather what you need from Eileen and others and get the necessary medical support in Zimbabwe.

  • Judygirl
    Judygirl heather39822

    Posted

    Dear Heather:   So glad you found this forum it makes you feel less

    alone, however, try to listen to your body.  The key to stabilizing whilst

    on the drug recommended by your doctor is to rest, stay away from any

    kind of stress and be gentle with yourself.   Accept you may be incapacitated

    in some ways for a while and be positive.  Good luck dear girl and be patient.

  • mary68968
    mary68968 heather39822

    Posted

    Hi Heather,

    I think knowledge is power & for me at least it was a relief to finally be diagnosed.  That is a big part of the battle.  As time goes on you come to some terms with PMR & find ways to adjust.  This forum is just an amazing place.  The knowledge of some posters & the empathy are very reassuring.  It gets better.

  • kathy67492
    kathy67492 heather39822

    Posted

    Hi Heather....sorry to hear of your diagnosis. My rheumatologist just told me that he has quite a few PMR patients. Often getting the diagnosis is difficult. This is a great forum for information and support. The prednisone works! Good luck!
  • charles01893
    charles01893 heather39822

    Posted

    Just add to my earlier comment, I have also had some success with acupressure- similar to acupuncture in concept, but without the needles- a home remedy with no need for any devices. Quite helpful as regards my wrists and neck areas. It's early to state that any fix is going to be long term, but apart from the partial losss of eyesight stemming from GCA, I can now lead my day to day life more or less as before- taking into account some of the side efects of the medicines. While I can keep fairly fit for example, the loss of eyesight and impaired balance does compromise some favorite activities. All in, I'm relatively fortunate- so far.
    • heather39822
      heather39822 charles01893

      Posted

      Thanks for those tips, Charles. Not sure if anyone does acupressure in Zimbabwe, but certainly worth making inquiries. How distressing for you that your eyesight has been affected. Getting my mind round PMR, haven't thought of GCA - hopefully it hasn't reached Africa? You have a lovely powitive attitude and I hope its infectious...Could do with a good dose of that.
  • charles01893
    charles01893 heather39822

    Posted

    Hi. CGA , like PMR doesn't go around- it seems to be genetically biased against those of northern European stock. Not contagious either, as Eileen may state too.

    Maybe that opens some new areas of study. As for acupressure, there is lot of helpful stuff on the net. For my key pressure points that is all I need to self administer- mainly wrists and neck.

    Charles 

    • EileenH
      EileenH charles01893

      Posted

      There is certainly an association of myofascial pain syndrome with PMR/GCA - and that has trigger points and some of those trigger points coincide with acupuncture trigger points (and fibromyalgia trigger points too). I have had a lot of benefit from techniques that work on mobilising the tissue around said trigger points. Bowen, massage, needling, physio - all have roles to play in it as far as I can see. Research has shown that the trigger points in myofascial pain syndrome are concentrations of cytokines, the substances shed in the body in the early morning which lead to the inflamamtion and stiffness experienced in rheumatoid arthritis and PMR amounst other things. When you mobilise these points which you can feel as hard knots in the muscles you release the cytokines - and a PMR-like state is created until the body gets rid of them. 

      PMR and GCA are closely related, both are forms of vasculitis. There is some evidence that in GCA it is large blood vessels that are affected and in PMR it is the microcirculation (the very small vessels). Further work is needed and on its way. GCA is traditionally known as temporal arteritis (inflamed arteries) - and the so-called gold standard test for it is a biopsy of the temporal artery. But that is positive in less than half of cases - some gold standard! But if it is positive it is 100% sure you have GCA! If it is negative - you still could have it. Ultrasound techniques have been developed that are more often successful in confirming the diagnosis - but training of technicians and devices are needed to role it out through the healthcare systems - all of which are strapped for cash anyway.

      It is likely that PMR and GCA are the opposing ends of a spectrum - the same only different. It just so happens the temporal artery was easy to get at - other, deeper arteries are less disposable and by no means so easy to get at to look for giant cells. PET/CT is now available to show the spread of this sort of inflammation - new and expensive but very efficient. And I believe it will show that a whole range of vasculitides - previously thought to be different - are actually much closer together than was thought. Once there is a link between PMR/GCA and an arteritis suffered by younger patients there wil be more interest. Unfortunately a load of wrinklies aren't as sexy when it comes to fund-raising as babies...

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