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PMR same ole same ole

Posted , 13 users are following.

Twopies
Twopies

same ole question re tapering and hurting and when to go back up on pred.  I was at 4 1/2 in June but couldn't handle the bone crushing fatigue so at the advice of you all, I went back up to 5 a couple weeks ago, and have been a little better.  Yesterday evidently was a killer for me:  walked 6000 steps (my personal best since PMR), cleaned the bathroom, watered the backyard flowers with a very heavy hose that I had to drag around, made big salad for dinner with lots of chopping and peeling and standing, and topped it all off with my little exercises (listed on this forum for PMR patients).

awoke in middle of night with all over pain...hips, legs, feet, hands, shoulders, neck, etc.  had to get up, couldn't sleep at all.

soooo....what do you all recommend?  Go back up on pred for a couple days to see if I can calm things down, (and rest my body)? or just rest my body for another day or two to see if things settle back down on their own?  None of us want a flare, none of  want to increase pred.  I've read both sides here on this forum but today I'm waffling.  I just don't know what to do.  Thanks for your help.

0 likes, 40 replies

40 Replies

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  • jan_37704
    jan_37704 Twopies

    Posted

    I’m like you - yesterday I gently hoed the smallish vegetable garden, met a friend for lunch and cooked a very basic evening meal and I was done for and just sat until 9pm then bed. I have had PMR/RA since Sept 2017. I’m still on 30mg Pred and Leflunomide and CRP was 27 last week and 11 this. Where do I find the exercises you mention please? I am living in hope that is gets better with time!!!!!
    • EileenH
      EileenH jan_37704

      Posted

      It does get better with time - but only if you play by PMR's rules! Pacing, knowing your limits and sticking to them.

    • Anhaga
      Anhaga EileenH

      Posted

      I wish it did get better.  I've definitely been slipping backwards and I thought I was a poster child for doing things the right way!

    • Twopies
      Twopies Anhaga

      Posted

      Me too. Always compliant. Always researching.  Always trying.  Frustrating. But you and me, we’re gonna get there; i know we will.  I read all your posts so keep up with you.  And I learn stuff from you.  
    • Michdonn
      Michdonn Twopies

      Posted

      Good Twopies, hang in there. Read anything you can get your hands on. I been studying diabetes now for over 50 years. Testing old days test tubes a solution boiled on the kitchen stove, what color, then peeing on a little test strip. Technology changes so we must change. But we must stay positive, that smile can really attitude! ☺️
    • Anhaga
      Anhaga Twopies

      Posted

      We learn from each other, the beauty of the forum.  wink 
    • Michdonn
      Michdonn Anhaga

      Posted

      Anhaga, this forum has been my greatest source of help, support and knowledge. I feel very lucky to have found this forum. ☺️
    • BettyE
      BettyE Anhaga

      Posted

      And nobody is selling anything or asking for payment or jealously guarding what s/he knows. It does cheer you up and give you hope.
  • EileenH
    EileenH Twopies

    Posted

    What do I recommend? Learn from your mistakes! Just reading that list makes me feel tired and sore - never mind doing it.

    What you have is delayed onset muscle soreness - just like you would get if you tried to do too much even when healthy. It is damage to the muscles and it hurts. Only time will heal it and unfortunately when you have PMR the muscles take much longer to heal. I doubt increasing the dose of pred will help much - though it might.

    Imagine your muscles as being lots of tubes which are muscle fibres lying alongside one another. They are hollow and inside is something that looks a bit like a mascara brush. The tips of the brush bits are sort of attached to the outer tube. When the muscle contracts and relaxes they slide on each other - and in doing so the connections are broken and remade. If you overuse that muscle, too hard or too often,  they don't remake the connection properly - small tears occur and it hurts. Once the tears heal the muscle has become "trained" and the next time you do the same action it won't hurt as much. The more you "train" the less soreness occurs. In PMR the muscles can't tell you you are asking them to do too much and they don't heal as quickly - so the soreness is worse and lasts longer. If you start with very small activities and build it up VERY slowly you can train even PMR-weakened muscles without severe pain - but the emphasis is on very small and very slow.

    That's not a very good explanation - it is difficult to put into words!! I saw a lovely animation on TV the other day but I can't find anything simple at present. 

    • Twopies
      Twopies EileenH

      Posted

      Ok thanks Eileen.  Yes, I’ve read about doms.  It’s the very small and very slow recommendation that I’m not getting.  It’s not how I’m wired at all.  If I’m having a rare good day,  i, like about everyone else on this forum, just try for some semblance of “normalcy.”  It’s really difficult to figure out what in heck that is now.  Obviously it’s not what I think it is, based on my reaction to yesterday.  A true learning experience!
    • EileenH
      EileenH Twopies

      Posted

      Oh yes - fully get the concept you don't get the small and slow bit! 

      I'll just tell you how I managed to ski: at the beginning of the season I couldn't do more than 3 very short runs without having really awful doms the next day. I couldn't do even 1 longer run - the rest on the lift was crucial. I couldn't ski every day. So I started with the 3 short runs in the early morning and either had a long rest in the bar wink  or went straight home. The first week I did that on alternate days - providing I wasn't sore the next morning. If I was, I took another day off. Then I tried an extra run - still on the short one. Fatigue also had to be taken into consideration - one day I felt great at the top and decided to have "just one more run" even though I knew it possibly wasn't a good idea! 3/4 of the way down I hit the brick wall - I had no idea how I was going to get to the bottom, up the lift and get home! There was a bench about 100m away, even getting to that was awful. I sat for ages - and then managed the rest and went home, thoroughly chastened!

      By soon after Christmas I was skiing a lot of the morning - but still only on short runs and with plenty of rests at the lift. Luckily we have no drag lifts on our mountain - they had to count as a run. By the beginning of February I was starting to do longer runs without problems. It wasn't much different during the 5 years of PMR without pred to what it was once I finally was put on pred - the muscle problems are much the same, the disease process is there anyway.

      I know the desperation for normalcy - but it is a figment of our imagination. You can have doses of normal, providing you have planned for them. It can't be spontaneous - however much we want it to be. However - once you have planned and practised it is possible. 

    • Anhaga
      Anhaga Twopies

      Posted

      I don't know if Michdonn will post on this thread, but I believe it's not much more than a year ago he was in a wheelchair, and now he is able to cycle and ski.  And it all started with small and slow walks!

    • Twopies
      Twopies EileenH

      Posted

      Eileen and anhaga:  they are talking about skiing; I'm talking about trying to get to the end of my short driveway to our mailbox.  We're all different, I know.  It's just that every setback is yet another delay on the elusive road to wellness.  I will be at least a 6-year graduate, and even that will be spectacular, given the upticks already in the pred dosage.  I'm just not one of the ones who ever feels ok--I always feel ill.  Whether it's the pred or the pmr--I suspect mostly the latter--some days it's hard to keep a smile on my face.

      i did rest yesterday, did nothing except for the simple PMR exercises last night.  I am better today.  I try not to be housebound, I'll try to get out a bit later today.  Thanks for all the encouragement!  

    • EileenH
      EileenH Twopies

      Posted

      Neither Michdonn nor I started out able to do that. We started with barely staggering a hundred yards. That is what I am trying to explain - you can't do it big immediately, you have to do literally a few minutes at first and add on a minute at a time. It sound crackers - but it WILL work.

    • Twopies
      Twopies EileenH

      Posted

      Ok, Eileen.  Now you got me blubbering. Thankful for the hope you all have given me. I (like so many others) place all my hopes on these words.  They carry me through....
    • Michdonn
      Michdonn Twopies

      Posted

      Twopies, this year I started back on my bike, first ride, nice easy slow ride. It was the first time in two years. My butt hurt, but no PMR pain, I did not push! Waited a day, another ride just a little further. Just a bit more each day, now I am really pushing to work myself back into shape. At no time during this process have I needed more Pred, but I did take ibuprofen a couple of evenings. The secret, know your limits, listen to your body, DO NOT over do it. Think is this PMR pain or just muscle pain. But each time you over do it you will pay! Think positive, think of what you are doing and try to smile. Good luck ☺️
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