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Anyone in there 40s been diagnosed with pmr ?

Posted , 13 users are following.

elisa321
elisa321

I was told years ago i haf fibromyalgia but now my blood work shows a high sed rate

1 like, 31 replies

31 Replies

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  • FlipDover_Aust
    FlipDover_Aust elisa321

    Posted

    there are a few people here in their late 40s....and  there are people as young as 25!

    However, a raised SED rate alone is not enough to diagnose PMR.

    What other symptoms do you have?

    • elisa321
      elisa321 FlipDover_Aust

      Posted

      I have the worst pain and cracking in my neck and shoulders that cause severe headaches the stiffness gets unbareable and my hip pain is terrible ive had this for years and finally a diagnosis to not feel like im going crazy oh and the exhaustion is terrible 😢
  • EileenH
    EileenH elisa321

    Posted

    As Flip says - what other symptoms do you have? Fibro doesn't show raised inflammatory markers - but there are other things. 

    Some rheumatologists deny PMR or GCA in under 50s - but the PMR community doesn't agree!

    • linda17563
      linda17563 EileenH

      Posted

      Excuse my ignorance, but how can age come into any illness, I fail to see the doctors argument about it?.......it`s like some cancers young people have, and take too long to be diagnosed.....what arrogance!....sorry but that`s my (roid)  rant for the day!rolleyes
    • elisa321
      elisa321 linda17563

      Posted

      Thats how i feel Linda how can the doctors limit an illness to a specific age group 😂
    • linda17563
      linda17563 elisa321

      Posted

      Exactly...I know of a lady diagnosed at 47 with Polymyalgia, but the doctors only believed her because her gran had suffered wih it, and she recognised the symptoms and went with her to back her up!!  Why should that be necessary for goodness sake...it`s a battle before you even get the treatment, and we all know that stress (like most illnesses) makes it worse....

      Also just to back up what MrsO-uk Surrey has said....my sister has RA...and i urged her to get a VIT D test which doctors/hospital hadn`t done, she was tested and was severly low....she says soome pain has eased, but fatigue has improved greatly....you never know...

    • EileenH
      EileenH linda17563

      Posted

      I don't agree with the doctors and it is - mercifully - not all of them! 

      There are diseases that become far more common as we age - but that doesn't mean they don't happen occasionally younger. There are 2 "top experts" in PMR who deny PMR in under 40s - I believe they don't see them because they don't look for them! One person from the PRGCAUK charity told me off on another forum and insisted the "people who know" have never seen it and if someone was under 40 they were more likely to have something else, something more common. In fact, another lady then pointed out that the PMR she was dx'd with in her 40s turned out to be a far far RARER combo! GCA is for over 50s - if you are under 50 it is labelled as Takayasu's arteritis which is identical hisotpathologically and one lady found the name in her notes had been changed! Did the disease change? I doubt it!

      But you have to bear in mind that "PMR" is not the disease. It is the name given to the symptoms of an underlying disease process. I'm at a conference full of rheumies at present - and a couple who I would happily have as mine agree with me that "PMR" is probably a conglomerate of things - with the commonality being that they respond to steroids. But many are scared of using big bad steroids - we had an amazing discussion last night about their use. A lot don't want to use them at all - putting younger people on them is too much for them.

      So I think that yes, you can have it younger but you DO need to rule out other things as far as you can.

    • linda17563
      linda17563 EileenH

      Posted

      Have to smile...I wonder what we can call a collective conference of Rheumies??  A frustration of Rheumies!!...sorry, couldn`t resist it.

      I only hope they come away with more understanding...and you some more answers for us hopefully about how these steroids do affect us, I myself feel caught between steroid side affects and PMR, as I`m sure many others do..  ...thank you for doing what you do for us...much appreciated!smile

    • EileenH
      EileenH linda17563

      Posted

      That isn't really the role of this conference - we are determining ways to measure outcomes of treatments to improve the comparability of various studies, i.e. so you compare apples with apples and not pears. But there are signs that pred will be looked at to find the best way of using it - it is cheap and the "new" drugs aren't nor is there yet much eveidence they are totally safe either.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey elisa321

    Posted

    Elisa, there are many conditions that cause pain in similar area to those of PMR, including a deficiency in Vit D and a hormone imbalance, etc, so do get blood tests carried out for at least those two possibles to rule them out.  On the other hand, if it does turn out to be PMR, you have come to the right place for a wealth of information and advice, including the availability of a couple of good reads on the subject: 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' by Dr Kate Gilbert, and available both on Amazon and direct from PMRGCAuk; and 'Living with PMR&GCA' available from the pmr-gca-northeast support group.  I do hope you soon receive a definitie diagnosis and the relevant treatment to relieve your pain.  
    • elisa321
      elisa321 MrsO-UK_Surrey

      Posted

      Yes my vitamin d level is extremely low Im on 5000 a day i also had my thyroid removed a few years ago and everything seem to get worse My doctor prescribed diclofenac for the pain but it doesn't even work when i have bad flares
    • Sheilamac_Fife
      Sheilamac_Fife elisa321

      Posted

      If it is PMR, painkillers don't work. Only Prednisolone. Maybe your doc would allow you to have a trial for a week or two.  If you get a 70% or more improvement in your symptoms this points to PMR because Prednisolone doesn't have any affect on Fibromyalgia. If not, you can just stop the steroids

      Raised ESR could just mean you have a virus, so that alone doesn't mean a deal.

      i hope you get an answer soon.

  • IssyR
    IssyR elisa321

    Posted

    I was diagnosed at 51 Elisa. I'm interested in what Linda said about the girl (47) diagnosed partly because her granny had PMR....I've thought about my mum a lot since this was diagnosed as she used to complain bitterly about the pain in her hips. To be honest myself and my sisters gave her a hard time for not sticking to the Pain Killers she was prescribed 4xdaily...she'd take them at night and in the morning. As far as i'm aware there were never any tests done for PMR...feel really bad as i also said to her to remember her bones were in their 80's so i suppose they're allowed to complain...I was really close with my mum and felt i done everything in my power to support her in her last years, i'm devastated on a daily basis that she's not here but feel really guilty today that i didn't go with her to the doctor to push for a diagnosis...i know there's nothing can be done now but it's just how i feel xxx
    • Tastyron
      Tastyron IssyR

      Posted

      Issy, I know exactly how you feel. I lost my dad two years ago and we used to say that dad's complaining again. I am pretty sure that, now that I have PMR, he had it. Just thinking about how he moved (or didn't move sometimes) and what he said about shoulders, hips and general aches makes me sad and mad that he didn't get diagnosed and that we never took him as seriously as we should. I try not to feel guilty about it as I'd never heard of PMR until I'd suffered with it for 6 months but it's hard not to feel some guilt.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Tastyron

      Posted

      Ron and Issy, please don't beat yourselves up and feel guilty for not being able to act more on behalf of your loved ones.  I feel that because we love them so much, however much we did for them when they were alive, we will always feel that we could have done more.  As far as PMR/GCA is concerned, even many of our generation are struggling to get a diagnosis so there wasn't much hope of it happening for the previous generation, I'm sure.  My Mum was certainly fine muscle/bone-wise but my grandmother was in a wheelchair and died young when my father was just 14.  Her daughter, my father's sister, became blind in her 50's.  I wouldn't be a bit surprised if they had PMR and GCA, hence the possibility of a genetic link for me being daignosed with both.
    • linda17563
      linda17563 IssyR

      Posted

      Don`t feel guilty, I believe things have changed over the years anyway.  They used to call it the rheumatics or rheumatism I think years ago...more than likely was PMR....even now when I tell someone, they have never heard of it.  I lost my mum at age I am now 64, so won`t know if she would have developed it...and my father at 51....both far too young!  Things are so different now, some for the better, some sadly not!  Good luck
    • Anhaga
      Anhaga linda17563

      Posted

      Somebody posted either here or on another forum lately that polymyalgia used to simply be called elderly malingering, or something like that.  Can you imagine?exclaim
    • EileenH
      EileenH Anhaga

      Posted

      I've never come across that - but the original name when it was described in 1888 (I think) was senile rheumatic gout - senile being simply the word to indicate it is of the elderly.

      But yes - it was "my rheumatics" for most of our parents/grandparents generation. There was no way of managing it until the early 1950s anyway, but I think it is fairly likely that it was PMR patients who were the ones who got up out of wheelchairs and walked when given massive doses of steroids giving them their "miracle reputation". Then the longterm side effects appeared ...

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