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Lab results...

Posted , 12 users are following.

judytal
judytal

Welll the lab results came in the mail today.  .C.-Reactive Protein was 0.3

and the ESR was 7 

I'm taking 6mg of Pred. but still don't feel great.... especially with the fatigue, which can be very inconsistent.  Some mornings start out good and then by the afternoon I'm so beat it's crazy or the other way around.  Out of bed my legs and arms feel like they will fall off and are difficult to move and this can last all day. Occ. I still can experience some shoulder "achyness" and neck aches.  Also the tooth ache also comes and goes !!  I don't understand the inconsistent days of bad and not quite so bad.

  The only comment from the physician was "neither of which showed significant inflammation"  Not exactly sure what that means...I guess it's not like you are either pregnant or not !!!

  Hope everyone is having a tolerable weekend.

All the best,  judy

 

3 likes, 49 replies

49 Replies

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  • julian.
    julian. judytal

    Posted

    I have a bit of a background in industrial processes. One of the early lessons is about variation. Everything has natural variation. It goes up and down. But generally, on average, its stable. Even measuring the same thing many times gives different results. But, on average, we get a kg of butter every time. Then things go wrong, the measurements are out of whack. Either a step change or a one off or increased variation, or a trend up/down.

    With my hypothyroidism my thyroid began to produce less than asked for. I knew because my energy levels were so low something had to be wrong. Take the same amount of thyroxine (the right handed version but it makes no difference) every day, my energy levels return to normal, the TSH in my blood returns to normal. I'm stable. Nice, because the first step in fixing an industrial process is always to get back to stable. Lucky with thyroid because the natural variation is pretty much the same now as before the problem arose. And no side effects.

    With PMR and Pred there seems to be much more natural variation. I'm stable, on average. But day to day I'm a bit up and down. Much more so than pre-PMR. I can't do anything about that. Manage my day around it.

    I take the same amount of pred every day at the same time, with the same amount of yoghurt, using the same spoon, so it must be something else that causes the variation in stiffness, pain and energy. Probably the PMR. And its not only variation in the symptoms I had yesterday, its occasionally new and scary things. But generally, on average, they get worse and better, up and down, arrive and go away.

    There is light at the end of the tunnel though. There's a trend. Slowly and inexorably over a long period the symptoms subside a bit and I can reduce the pred. A trend that is there in the long term but masked by the much greater daily up and down variation. So the trick is to reduce the pred as the symptoms allow, not reducing too fast so stability is lost.

    A flare is "just" a loss of stability. A step change. So we take some remedial action. Maybe more pred for a time. With the aim of getting back to stable. First stable, then reduce the pred.

    Changing anything in a process has flow on effects. If a process is stable then the preferred approach is to change only one thing at a time and observe. If its unstable then first stabilise. Its also typically an exercise in frustration trying to improve an unstable process. First make it stable, then reduce the variation, then improve it.

    The hard part in PMR seems to be the diagnosis. There I've been lucky. Three (Aus) GPs, two who I know well, all happy with the diagnosis, not a Rheumy in sight, and all happy with the not very prescriptive "reduce the pred slowly". A pleasure when one of them said "its your disease". Though I'm reasonably certain they don't perceive me as an industrial process! Part of the luck was perhaps a sense of how Doctors diagnose and the information they need.

    Nothing new in the above, just another way of looking at the journey.

    Basically though, I'm lazy. I have a few well worn, well tried, universally applicable concepts. Patterns if you like. I often here "the devil is in the detail" but rarely do I hear the (for me) important "the answer is in the concept". Just some of my two bits about being holistic.

    • judytal
      judytal julian.

      Posted

      Thanks for your thoughts , Julian.....

      The journey...

      Stability....

      Variation..

      Can't see the light at the end of the tunnel YET !  But I'll keep looking... I guess I don't have a choice, do I ? 

      thanks for your thoughts.... all the best to you .... Be good to yourself .

    • julian.
      julian. judytal

      Posted

      you do have a choice,

      but I wouldn't recommend stopping looking. Its there. Be absolutely certain of that.

      I've just stopped for a rest after drilling three miserable holes in a bit of steel. But then I couldn't have drilled any a year ago.

      And besides which, I suspect that believing there's an end to this is part of getting through today.

      How does one eat a chocolate elephant? ....... One bite at a time. .... And the bites vary a bit.

      Back to the drill .... three more holes to go ..... I'll bet they aren't all the same size when I've finished ...... then I get to have a long hot shower and a nana nap.

      Get well.

    • EileenH
      EileenH julian.

      Posted

      And tomorrow you'll probably have a less good day?

      Because that is the usual reason: on a good day you unconsciously do a bit more and your body then needs a less good day to recover a bit. 

      Your industrial analogy is so good - I've tried to explain it in the past like that. The trouble is, we're scientists and appreciate the limitations of reproducibility and stuff. I worked in the medical labs. We were taught about the variations and the real meaning of "normal ranges" and "outliers" in the medical world. Over the years (that was in fairly early days of biochemical medicine) that has been pushed to one side and now medics have this concept that the figures are absolute. NO,NO,NO! Only 95% (at best) are included in those normal ranges. And they are the healthier (it is hoped) population. We are, by definition, not part of it.

    • constance.de
      constance.de EileenH

      Posted

      Is it good or bad to be one of the 5% 'not normal' human beings??  

       I suppose we should be honoured😏😏

    • EileenH
      EileenH constance.de

      Posted

      Definitely bad in the context of getting doctors to accept those blood tests (or anything else) CAN happen in disease X...
    • judytal
      judytal julian.

      Posted

      Julian,   Good luck with the drilling...  I love chocolate and yes I do have to get my head around one day at a time.... for now

      Enjoy the sunny day 

    • julian.
      julian. judytal

      Posted

      total of 48 10mm holes. A few each day. All done now. Just a bit restless in the night and a bit stiff this morning.

      Painting the steel is next. I've done some but its worse than drilling. Rest day today.

    • judytal
      judytal julian.

      Posted

      I decided I needed to start getting the deck cleaned up... Washed the out door table and chairs... Sat rested... Next chair... Rested....looked at the railing and saw the green ( what is that stuff? ) on the deck too.  It'll be winter by the time I get everything done!!!  

      Ok, I'm resting and probably resting tomorrow as well.  

      Be good to yourself,    

    • julian.
      julian. constance.de

      Posted

      long story ... drove self made truck/motorhome from Aus to UK and back via a few other places over 3 years. Basically drove to a niece's wedding in Scotland. PMR hit in the last 3 months of the trip while land locked in Nepal so only real option was to carry on.

      The house bit of the truck suffered a bit of damage in Mongolia. Local repair and a bit more in UK were at best temporary. We've been back a year and a couple of months ago finally found enough energy to think about it. Had to take it back to chassis (big job). Last thing I wanted.

      Its all in pieces now and I've started the rebuild. One small step at a time. Its about the size of an elephant but not tasty like chocolate. I just came in for a rest. Frequent breaks and doing something else seems to work - as long as I can remember what I was doing.

      Good news. I still have the headache I've always had (lifelong) with the extra bit that it gets worse and changes with exertion and is much worse than "normal" (for me). But. New specs have helped. Less computer time has to help (I'm hopeful). Blood normal. Really good news MRI brain scan normal. Interesting close ups of blood vessels. Reassuring comes to mind. GP understands me well and thankfully takes me seriously. My expectation was I'd be happy if they found my brain.

    • constance.de
      constance.de julian.

      Posted

      Last sentence!  It does make you wonder with this pesky illness, doesn't it?

      Sounds as though you are getting there though.  

      Good luck with the re -make!

    • tina-uk_cwall
      tina-uk_cwall julian.

      Posted

      Good morning Julian, it definately sounds as though you secretly enjoy getting your hands dirty. I don't think my husband has ever taken on anything quite as big as your job but like you he's never happier then when rolling around in brake fluid or engine oil.

      he retired 2 years ago which enabled him to spend even more time getting himself dirty and in the process giving me more washing and ironing but he's currently wielding the floor of an old rover automatic. In the past he's renovated triumph spitfires, Volvos, Land Rover short and long wheel base series  1 & 2. We live in a tiny hamlet and the locals love him as when there's anything wrong with their cars they pitch up at the bottom of our drive next to our barns and wait for Bob to come out all eager eyed to help. Me I'll stick to the gardening. I hope it all works out well. Regards, christina 

       

    • julian.
      julian. tina-uk_cwall

      Posted

      I think I'll go with the old Land Rovers. Happy memories of a long ago life, and my truck is 4wd. Serious business this boy stuff ...
  • tina-uk_cwall
    tina-uk_cwall judytal

    Posted

    Hello judy, has your Dr suggested an adrenal test? Because it sounds as though with this extreme fatigue maybe they are not working correctly and therefore with only 6mgs of steriods your body is suffering a shortage. That's just one suggestion.

    as for the aches and pains, think about what you did (physical things that is) the previous day. I have definately noticed that when I garden, even light gardening my arms and neck the following day ache abit. I have put this down to the fact that I've been on preds for 1.8 years and although I'm now down to 8.5 my body has experienced muscle wastage due to the preds. So I really need to strengthen my muscles slowly. My legs are fine as I use them on my walks daily so those muscles are being strengthened daily, but arms that don't get as much exercise until like me now it's summer and I'm gardening have suffered and they need to be re strengthened. Good luck, christina 

    • EileenH
      EileenH tina-uk_cwall

      Posted

      The autoimmune part of the disease is almost certainly the reason for the intolerance of your muscles of acute exercise. It is thought to be very likely to be something to do with the mitochondria - the power-houses of the cells. The autoimmune bit probably does wax and wane - it is even possible it went into remission briefly but we were on pred and didn't notice. That would fit with the 25% who manage to get off pred quickly but then relapse - they hit a good run and would have been fine longer term on a very low dose but the good run tried a home run which succeeded for a while. Quite a few people get down to 1mg, stop and in weeks the symptoms are back.

      Until the underlying autoimmune bit is in remission the fatigue will remain to some extent and as I've just said to Julian - on our better days we do that bit too much and the better day or two is followed by a worse day or three...

    • judytal
      judytal EileenH

      Posted

      So true... did nothing much yesterday.  Watched a movie with a friend and this morning I could walk the dogs with not much fatigue ! 

      My friend has Parkinson and I see how she continues to do what she would like to do and keeps on plugging.... she is an inspiring woman for her attitude and her efforts to not let Parkinson get the best of her.  God bless her and every one who is carrying their own crosses.

    • judytal
      judytal tina-uk_cwall

      Posted

      Good morning, Christina,  Thanks for your thoughts... I walk the dogs at least 3 or 4 times a day.  some walks are short others are a bit longer.  Some times my legs feel pretty good.. I have a short hill to get up on the way home.. my butt and hamstrings feel weak some days.  Other days I'm out of breath as I get home...  But every once in a while ( and that's a few and good times) where I can't believe how I almost feel like my "ole" self ( 72)  but a strong, active, eager 72. 

      I don't garden but I do try and crochet which uses my arms a bit.  I also try on some "good" days to do some arm exercises.  Every morning in the shower I stretch my shoulders up over my head .... I also march lifting my knees 10 times... I used to be able to do 20 !!   That routine wears me out but getting my arms up over my head is important to maintain range of motion and marching strengthens hips and works on balance !!

      thanks again Christina,,, take care and all the best to you and all

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