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Sorry if I am repeating my self

Posted , 12 users are following.

carol16456
carol16456

When I started this trip on the PMR trudge in November 15.After a few weeks when the pain had subsided I felt reasonably good .i started at 15 mg and now down to 11.5 .Occasionally I get the variouse withdrawal ache and pains when dropping pred at half  mg every 2to 3 weeks ,but I am surprised that I feel so drained .I thought after the initial withdrawal that I would feel reasonably back to normal until the next half mg drop .But to day by day I feel as though I am walking through slow drying cement .Does there come a level when I will get some energy going again as I think I did upto a couple of month at the beginning of all this .I sorry to bother ,who I feel are now my friend but feel so tired today and weepy ,hopefully will feel better tomorrow..Due to see Docter 4to 5 weeks for next blood test result but wonder if it's all par.for the course or should I check it out. Hope here from one of you please Carol

3 likes, 22 replies

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  • EileenH
    EileenH carol16456

    Posted

    Everybody has the same problems at some time or other so yes, it is a bit par for the course.

    The fatigue is part of the PMR as well as being a possibly side effect of pred. As long as the autoimmune part of PMR is active you may suffer the fatigue - especially if you try to do too much. Your muscles are intolerant of exercise and take far longer to recover - so it is always as if you are trying to do things the day after running a marathon. The energy at the beginning was almost certainly the pred high effect - plus you suddenly felt much better than you had felt for weeks. 

    You really have to "manage your spoons" (google spoons theory Christina Miseriando) . In Germany many people complain of "spring tiredness" and it is a recognised effect. PMR does vary from day to day . Add it all together and you can have really rubbish days. 

    Pam - you are at a dose where you are expecting your adrenal set-up to work again. It has to catch up. Slow down your reduction spaces a bit. Some doctors like to keep patients at 5mg for anything up to 9 months to allow that - some patient hit that wall earlier than 5mg, we are all different. It can happen anywhere from 10mg down.

    Tony - not being able to run, the loss of spring in your step is most likely the PMR. It was the first thing I noticed: I couldn't step up onto the step in step aerobics and I couldn't hurry, even at walking pace, to get across the road or to catch a bus. I am slowly getting back to a decent pace of walking. I've had PMR with and without the pred so I do know the difference between the effects they have on my body.

    One lady who found she just needed to sleep all day changed taking her pred to at night before bed - it worked. Now the sleep and brain fog side effects happen overnight and she has far better days without feeling she is about to fall asleep.

  • marykay62062
    marykay62062 carol16456

    Posted

    Carol......This may help. I now take my predisone at 10pm and I usually can make it through the day without exhaustion. I find it works very well for me and maybe it would for you too. I must confess though, I went to the movies yesterday and ended up taking a $9.00 nap. Didn't see a single scene of The Second Marigold Holtel. My husband said it was good.
    • EileenH
      EileenH marykay62062

      Posted

      I gave up the cinema years ago - has to be a DVD/recording so I can pause where required!!
  • carol16456
    carol16456

    Posted

    Thankyou every one ,confidence in my doctors diagnoses I think was at its lowest today .My husband has pointed out a few things that I have done this week and perhaps I have over done it .I use to start in the morning and stop after dinner in the evening.But that seams a long time ago now .I am 66 and use to love walking but now a slow walk in the country side at the back of our garden ,probably about a mile and a half can take an hour .i will take heed of what you all say and sit and do my painting or patchwork .Thankgoodness that I can do that as it helps me to relax ,which is something I think you are all telling me to do .It is good to know you are all there Carol . PS one good thing I haven't had to have taken any pain reliefe today .
    • EileenH
      EileenH carol16456

      Posted

      Carol - no don't just sit and whatever. The exercise is good for you. What we are saying is that if you get tired exercising do it on alternate days. Or have that walk to a mid-point where you can have a rest before walking back (the wonder of the country pub). I struggle to walk for 2 hours with no rest - a walk to the restaurant, a long lunch and walk back is perfect with no recriminations the next day!
    • Mrs.Mac-Canada
      Mrs.Mac-Canada carol16456

      Posted

      Hi Carol,

      It is frustrating and discouraging when we can't do the things we used to but if we accept our new limitations and plan around them there is still so much we can do. I love to walk as you do but now I alternate days or go for just a short walk just to get outside. 

      I agree with Eileen that we now plan on walks, shopping and even visiting with friends so we have time to rest in between.  

      Patience truly is PMR's friend and we need that so it will be kind.

      i hope you are feeling better and can venture out to your garden soon.

      Hugs, Diana🌸

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