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Confused

Posted , 16 users are following.

Charlieschoc
Charlieschoc

Hi all. I had to see a rhumie this morning that isn't mine (long story) anyway he said my symptoms sounded more like chronic fatigue syndrome as people with PMR don't have my symptoms...

My esr is at 21 and I'm currently taking 14mg pred.

He asked what symptoms bothered me the most. I explained that everyday tasks caused problems. Things like drying my hair, my arms ache and feel heavy. Walking up stairs causes pain in my calves n thighs. That's when he said it didn't sound like PMR.

My question is does anyone else suffer like this?

And to Eileen if you're around would cfs have raised esr?

Thanks Jen x

0 likes, 30 replies

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  • Daniel1143
    Daniel1143 Charlieschoc

    Posted

    Confused for good reason.  If the symptoms you describe are not PMR, then none of us have PMR. You've described my early symptoms precisely.

    Vey smart and well educated people can be wrong.  I am referring to your doctor, of course.

  • karen28161
    karen28161 Charlieschoc

    Posted

    Hi Charlie , well I must not have PMR also , according to your new Rhumy , I have had it 4 years now on PRED and STILL have pain in my legs and hips walking up the stairs , I am 56 and hubby says I have the penquin walk , hurts me to fasten my bra , kills me most times to get up from sitting for a while ..... So I must have CFS as well lol Elieen will be along shortly i should image or any other knowledgable people on that are fantastic at helping us people with PMR

    Hope your day is pain free x

  • constance.de
    constance.de Charlieschoc

    Posted

    Please, please don't recommend this rheumy to anyone else!!??

    Evidentally none of us have PMR.

    The 5 years I have had PMR have just been blown away.  I didn't have PMR after all!!!!  Of course, it's all in the head you know.  Grrrrr!

  • Daniel1143
    Daniel1143 Charlieschoc

    Posted

    Let's look at it on the bright side.  If your doc is correct, we're all cured!

  • pat38625
    pat38625 Charlieschoc

    Posted

    Hi Charlie, I am sure you are confused.  This is my story and mine alone.  I was diagnosed with ME/cfs January 2001 and was bedridden on and off in the early days (I think 3 years) after that time I was able to manage ME to the best of my ability.  Move forward to 2014 and I start to get really bad headache,  just one side of my head, sore jaws, I was putting it down to Neuralgia, my then gp wanted me to go to A&E, I refused as I was too ill (couldn't sit and wait in A&E) while this is going on I am starting to get pains in every muscle in my body.  I cannot turn in bed, I cannot get out out of bed.  In a chair I had to physically lift one leg over the other.

    It took me 2 and a half hours to get showered and dressed to drive an 8 minute journey to my drs.  My body felt as if it had been filled with concrete.  When finally diagnosed November  2014 with PMR and was prescribed the magic pill called pred it was like magic, pains subsided within hours and evened out in a number of days.  If I had a choice between ME/cfs or PMR or GCA I would most definately pick ME/cfs.  I know the difference, I have lived the difference.  These two illnesses are poles apart (in my experience).  How you describe your pain most definitely sounds like PMR.  Regards Pat

    • linda17563
      linda17563 pat38625

      Posted

      I am in the same boat as you!  Long term CFS/fibro....(1989)   yes, there is a distinct difference, and my doctor recognied it as so, because the ESR was raised!...and referred me to rheumie....now I am struggling to come off pred, rheumie says it must be he CFS/fibro getting in the way!!rolleyes

    • EileenH
      EileenH linda17563

      Posted

      Well maybe - but it could equally be that the PMR is still active. It doesn't go away in everyone in 2 years whatever they think! Average is about 5 years - half take up to 4-6 years and the standard German textbook says 5 years. A quarter of us take even longer - for me it's 12 years and counting but no-one here disputes the diagnosis or tries to force me off pred.

    • pat38625
      pat38625 linda17563

      Posted

      Yes Linda - Long term CFS and I had Fybro (but it went away as mysteriously as it came, so I have experienced that type of pain) PMR pain  is nothing like CFS or Fybro pain.  They are poles apart.  I still had a life with ME/CFS but PMR has knocked me for six.  I was one step away from a wheelchair, I do not exaggerate.  My life is so different now but I am still so grateful, I am alive and breathing.  Onset of PMR- Bloods were ESR 124  CRP 46.7.  I started at 20mg of pred in November 2014 and am now down to 3mg with no flares (fingers crossed) still stiff and sore but nothing and I mean nothing like the pain I experienced at the beginning.  I remember begging the dr. (he was a locum) for morphine or something stronger than paracetamol, he said no until the blood results were in.  I cried in the reception area the pain was so bad.  The same dr. rang me at home a few days later to let me know it was PMR and started me on steroids right away. I have no pain at all in any joints, it is all muscular. Phew all this typing lol.
    • linda17563
      linda17563 pat38625

      Posted

      Sorry Pat, but have tried twice to reply to you and the "reply" seciton just wizzes rond and goes nowhere.....a bit like me!  (It`s since I updated windows...useless)

      ?When I got PMR for my 60th birthday nearly 5 years ago...I felt like a new woman...but not for long..felt sad as well, knowing what I`d been missing all those years...actually had ENERGY!

      ?I am down to 10.5mg and in no hurry to drop....I am extremely sensitive (because of CFS/Fibro) to any medication....and have had several flares, so doing it very slowly indeed.....if I get to 5mg and feel well....would be happy to stay there......quality not quantity I have learned....

      Keep well.....

    • pat38625
      pat38625 linda17563

      Posted

      Hi Linda, not to worry, my messages sometimes just flys off the page, never to be found again lol.  I think you are being very sensible in your approach to reducing pred.  Also I agree with you about quality and not quantity.  Hope this works out for you.  I am at present doing the DSAS method from 3.5mg down to 3.mg and will be staying there for quite a bit.  I'm still stiff and sore in my muscles when I waken but nothing to what it used to be like.  You take care now.  Regards Pat

  • Anhaga
    Anhaga Charlieschoc

    Posted

    If those symptoms don't sound like PMR, what does he think would?

  • EileenH
    EileenH Charlieschoc

    Posted

    Raised ESR in CFS? Not that I know of - and if he says those aren't the syptoms of PMR he doesn't know what he's talking about! Practically no-one I know would classify as PMR on his basis. Wonder how many other poor sods are walking around with unmanaged PMR because of him? I hope he doesn't tell everyone with fatigue they have CFS because if he is, he's missing a LOT of diagnoses.

    As Pat (who has seen both films and got the t-shirts after all) says, pred works for PMR, it does nothing for CFS. If it did then they would use it for the really bad cases. If pred helped the main problems then it was PMR and not CFS. Your ESR is normal at the moment - because you are taking pred. 

    What an eejit! 

    • karen28161
      karen28161 EileenH

      Posted

      Yes exactly Eileen all those poor people with PMR and he has turned them away ......makes me sad that they are not getting PRED 😢😢😢
    • Tastyron
      Tastyron karen28161

      Posted

      Exactly. After 6 months of x rays, MRI scans, different physios and numerous trips to the Drs, I thought I was going mad with this "unknown" pain. I was at my wits end until the "magic" pill and finally knowing what was wrong put my mind at rest. I dread to think what I would be like if I hadn't been given the proper diagnosis.

    • Anhaga
      Anhaga Tastyron

      Posted

      I had over a year of going to a young doctor who, I think, thought I was a hypochondriac old woman.  Just before she left the practice (to have a baby) she finally sent me for blood tests ("normal" she told me) and x-rays ("you're full of arthritis"wink.  Next doctor looked at same blood results, sent me off to have more, and diagnosed PMR.  Pred trial proved it.  I also got to see my x-ray results, and far from needing a hip replacement which I'd feared because of crippling hip pain, turns out that's one area of my body completely free of OA (and I already knew about the rest). rolleyes

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