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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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  • Charlieschoc
    Charlieschoc elisa321

    Posted

    Hi Elisa. I started suffering in April 2015. My mother had PMR and it was she who pointed out to me I had classic symptoms of PMR. My docs wouldn't listen at 1st but repeated blood tests kept coming back with high esr and crp. I was sent to a rhumy who told me not to be so silly and just get on with things. He told me I had a virus and stopped the pred I had been given as a trial 2 wks earlier. I went down hill fast.

    I begged my gp for help and kept going back. Eventually I was sent for a 2nd opinion. I saw a proffesor Bowman at the QE Birmingham.

    He said he was reluctant to say it was pmr due to my age (then 44) but he agreed that blood tests don't lie and there was definatly something going on. I was put on pred again and felt better within hours. I had loads of bloods done and xrays and in a report back to my gp my condition was listed as PMR.

    I am now dealing with the condition as best as any of us can. My hardest thing is knowing my limits. My brain is still active and wants to Sprint through the day my body says hold on and shuffles along trying to catch up.

    I hope you get answers soon, but in the meantime just be kind to yourself xx

  • mirella60121
    mirella60121 elisa321

    Posted

    I was diagnosed with fibromyalgia in my late 30s now 20 years on, have had severe muscle pain and stiffness. My esr and ck levels were raised. Sent off to a rheumatologist for possible polymyalgia but he wont comit as says i am to young. Did a lot of other tests and nothing but he still wont confirm the diagnosis. This has been going on now for 3 months. My gp put me on steroids 15mg then the optomologist raised it to 30 now the rheumatologist lowered down to 10mg. Whilst the pain isnt as severe the stiffness is. I am having a lot of side affects with the meds but need them to function. So i underdtand your frustration as is mine. I just

    hope they can confirm exactly what it is. The rheumatologist says whatever it is hasnt presented itself fully yet. Whatever that

    means, meanwhile I live with the dramatic change to my body.

    • FlipDover_Aust
      FlipDover_Aust mirella60121

      Posted

      so if I'm adding this up right your are in your late 50s? Certainly not "too young" to have PMR!!!

      Does the pred ease the pain? that is indicative of it being PMR. It won't necessarily do much for the stiffness or fatigue - although some people get improvement.

      10mg may not be enough to control the inflammation - your GP was more on the right track. I'd be talking to him/her about your treatment again.

      We all deal with the different side effects, you just get used to them as you are right, we need them to function.  

    • linda17563
      linda17563 mirella60121

      Posted

      I sympathise with you, not getting a straight answer while suffering, really dosen`t help does it!  When I went to my rheumie 4 years ago she  said at 60 I was rather young to have PMR....what rubbish!....Still arguing with her (for now) about treatment etc....

      Like you it is far more complicated when you have fibro as well.....I`m the same (20 years) but I do know the difference with the pain and stiffness, as I`m sure you do....but the rheumies don`t seem to!

      Good luck, keep posting....we`re all in it together!.

    • gillian_25383
      gillian_25383 linda17563

      Posted

      Doo glad my hospital rheumatology department have staff "in the real world"-I was diagnosed and put on treatment age45
    • linda17563
      linda17563 gillian_25383

      Posted

      Gosh, you should be a good example then....your age flies in the face of what many rheumies believe....what area do you live in?   lucky you!
    • EileenH
      EileenH mirella60121

      Posted

      When the international guidelines say "over 50" that means it is happily accepted it will appear at any age thereafter - so how ANY doctor can allege someone over 55 is "too young" I fail to understand!

      But I've just spent a few days with a load of rheumies - several say they have patients in their 40s with PMR. And a couple agreed with me that the age-under-50 patients probably are being given the wrong labels...

    • mirella60121
      mirella60121 FlipDover_Aust

      Posted

      Yes i am 50 and now have upped the dose to 15mg. I am finding better relief with this dose. Not sure when they can tapper this down as hate the side affects from prednisone. I have appointment with my rheumatologist next week. Had further testing to rule out other things so i think sounds more like polymyalgia than anything else despite my rheumy not quite committing to the diagnosis . Thank god for this forum has helped me a lot. Keep up the good work.

  • mirella60121
    mirella60121 elisa321

    Posted

    So elisa are you saying they cant lab er l the diagnosis based on the age factor rther thn the symptons? I agree we ith you and fail to undertand.
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