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Issy

Posted , 7 users are following.

IssyR
IssyR

I've been following this forum back and forth and posted a few times but today i'm discombobulated. I'd had some blood tests done by the doc because i felt soooooo constantly exhausted. I've read umpteen posts on here that say how fatigued PMR can leave you...i didn't tell the doc i'd read anything online but i did ask could it be connected to the PMR...which he pretty much ignored and ordered these tests. The tests have came back mostly ok...though my inflammation number is 16 and my albumin level is 34 which is JUST on the low side...i had a nosey online when i came home and one of the causes for low albumin can be chronic inflammation...i'd asked the doc if this could be anything to do with PMR and again he pretty much ignored me...it's as though he thinks PMR has no 'real' symptoms...he's now going to get more obscure blood tests (his words) and an ultrasound for my liver...sooooo fed up...!!

1 like, 13 replies

13 Replies

  • Anhaga
    Anhaga IssyR

    Posted

    Did he start with the obvious and get your iron checked, and ask you about your activity level?  
  • tina-uk_cwall
    tina-uk_cwall IssyR

    Posted

    Hi issy, try not to let all this wear you down. I think your GP is very naughty ignoring your contributions in relation to your fatigue. But look on the bright side you are having these tests which will rule out other possible medical conditions, but yes, pmr can cause fatigue.

    i had an ultrasound of my liver too, it revealed non alcoholic fatty liver and let's not start on my liver blood tests that have the consultants scratching their heads. Last test revealed my gamma g t level to be over 300 when normal levels should be between 0-5. They've never been less than 200.ekk! I have another full blood test next week lets see what that reveals but I'm grateful that I am being monitored. I've been told that I do need to loose weight which I am doing but very slowly.

    all the best, tina

    • IssyR
      IssyR tina-uk_cwall

      Posted

      I've been attending the same doctor since i had pneumonia in Feb/mar '14 and it's took me til the last few weeks to realise...health wise he just doesn't listen to me...i've had a LOT of really stressful stuff happen in that time and no matter what i say...he brings it back to my mental health...pain - pain is always worse when you're stressed....fatigue - do you know how hard your brain works when you're stressed Aaaaaaaarrrgghh...!!!
    • tina-uk_cwall
      tina-uk_cwall IssyR

      Posted

      Issy, he is punching you below the belt by constantly putting everything down to your level of mental health. You need to stay strong with people like him. Some people who are not mentally strong begin to doubt their own minds, ensure you are not one of them. Tina
    • Anhaga
      Anhaga IssyR

      Posted

      stress is a huge component in triggering pmr

       

  • IssyR
    IssyR

    Posted

    I think so Anhaga, i know i should know but i go into his office with an agenda and come back out and haven't said anything i was going to and what he's said seems a jumble....no matter what i say he puts it down to 'my head' and what he's said is once these tests come back fine i'll realise that...do you have any idea if there's a connection PMR and low albumin?

     

    • Anhaga
      Anhaga IssyR

      Posted

      I don't think so, but no one knows what really causes the inflammation of pmr.  I don't know what the symptoms of low albumin are, but if it can also cause pain that may be what the doctor is trying to figure out.  It is rather poor of him to put down your symptoms to being all in your head.  Is there any chance you could find a family member or friend to go with you on your next visit so they could help keep things on track for you?
    • IssyR
      IssyR Anhaga

      Posted

      Do you know Anhaga, i've just been looking through some sites online and i've seen a couple where it says people with PMR can test low in albumin...i don't know that it gives you symptoms i think it's yet another PMR symptoms....i'm so mad that he's given me more questions than answers...but thankyou for your advice xx
  • julian.
    julian. IssyR

    Posted

    my medical stuff got a bit complicated recently so I resorted to a list of questions and worked through them in consultations, with a pen and a tick when answered.

    There's usually a structure (provided by the doctor) to a consultation. Some sort of analysis and diagnosis followed by treatment. When I'm toey I cut across that, particularly when it switches from analysis to diagnosis. I approach it as "improving my understanding of my condition". I take the approach that its my disease and I need doctor's help / advice. The only time I abdicate control to a doctor is for a mechanical hospital procedure. That they have control of medicines is unfortunate.

    I suspect what you may be looking for is "is it possible to consider something physical that doesn't always show up in the tests and try treating that in parallel with more tests" or "can we really discount everything physical? or maybe even some sort of deal - "I'll consider its in my head if you consider it may be physical and not showing up in tests".

    Either way, its very difficult to shift someone's mind set. Particularly when suffering and fatigued. I don't envy you.

    • IssyR
      IssyR julian.

      Posted

      Hi Julian, i'm a pretty assertive person and wouldn't let the fact that he's a doctor stop me from speaking up for myself...i think the fact is he's made up his mind it's psychological...i see a counsellor every couple of weeks who's helping me get through a relationship breakdown and my mums death and she believes the same as me that this is not in my head Aaaaaargh...it's soooo frustrating..thankyou for your input xx
  • linda06830
    linda06830 IssyR

    Posted

    I agree that you need to be more assertive; I'm not usually that way, but certainly have become so after dealing with my rheumatologist.  He started off very insistant of everything and insisting that I be on methotrexate.  I tried one dose and got very sick from it and so now he thinks I should be on injectiable form.  I finally found that assertive  voice in me and said an empathic NO, that I did not want yet one more chemical in my system.  I kind of feel like I might be an experiment to him and wonder just how many PMR patients he has.  He keeps trying to convince me I have RA even though tests show otherwise.  I've learned so much from this forum that he neglected to tell me--maybe he just doesn't know.  I think his parting comment to me after the last visit was something like, well when you can't get out of bed one of these days, call me.  If it wasn't so difficult to get in to see another rheum., I would change doctors in a heartbeat.  Be assertive; it's you doing the suffering.   Hang in there!
    • dan38655
      dan38655 linda06830

      Posted

      Linda, you're right that doctors are to varying degree experimenting on us.  It's better when this isn't necessary, as when sufficient data is already there in the books that doctors are presumed to have already read.

      Doctors are given a lot of leeway to achieve results and can test their own theories on us, hopefully with the hindsight of a thorough education and with pertinent contemporary data at hand.

      My rheumi also indicated I had RA indications and wanted me to consider taking plaquenil or sulfasalazine.  I looked up my test results online, which did not show anything out of the normal range for RF (rheumatoid factor), that according to my insurer's own website.

      I did not take any of these drugs, just the pred.  I do have arthritic symptoms in my hands and wrists whenever I start to taper off of prednisone too fast, but at those lower levels I also deal with fatigue and weight loss, so I chalk this up to pmr activity more than to any sort of chronic arthritis.

      I have to admit that the rheumi may have logical reasoning, but I also fear over-prescription.

  • constance.de
    constance.de IssyR

    Posted

    Wow, that is some Doctor you have!😡

    Why don't you take someone into the surgery with you?  They could have a copy of the questions/difficulties you have written down and then they could write something, or the answers to your questions.  That should make the doctor a bit uncomfortable.  Are you sure he is qualified?  However do some of them pass their exams?  But, of course, it's only PMR, practically no symptoms at all so, of course, it's all in the patients mind.  Grrrrrrrrr!

    Is there no way you can change your doctor?

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