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Pmr can’t predict one day to the next

Posted , 12 users are following.

Twopies
Twopies

i never know what the day will bring. no matter how careful i am, how i do everything right, how i dont overexert myself, there are lots of days when i wake up and just feel terrible. sore, achey, weak, lethargic. its one thing to look back and say, "well, i overdid it so im paying today." nope, this is different, sometimes it just comes out of nowhere.

no, split dose doesnt make a difference, tried twice. no, its not a flare, its just feeling like a sick person for no apparent or at least a predictable reason. a day of rest and im usually back on track.

in the way of background, im at 5 1/2 mg pred where i intend to stay until at least oct. ive been on pred since sept 2016. im never pain free, never was, even from the earliest days. i have fatigue sometimes, but not always. well, im pretty worn out by bedtime, if not before,

do any of you have bad days too for no reason, or are you able to relate them to too much activity the day(s) before? mine come out of the blue which is frustrating to no end. would like to know whether i have kindred spirits out there. thank you.

1 like, 13 replies

13 Replies

  • peggy_56092
    peggy_56092 Twopies

    Posted

    I too am on 5 1/2 mgs. Our timelines are similar. Perhaps because we are in the adrenal wakeup zone pred wise, cement in the leg veins seems to appear, which they didn't at higher doses.I don't want another flare so am staying at the lowest pred dose I have ever achieved for an indefinite period. I walk my dog daily, slowly. Vacuum duties get delayed. I do pick up heavy fire wood and climb many stairs and garden while getting the sunlight. And hope that this PMR shall go away some day soon.

    • Twopies
      Twopies peggy_56092

      Posted

      me too! how long is indefinitely? (stupid question, i know). until you feel better, more like your old self or until you just decide to give it a rip? we will migrate to florida to our winter home around the first of october; after i get settled, im thinking about trying to get to 5 using 86 day dsns where i will stay till spring. ha! i know better than to plan with pmr but you cant blame a girl for dreamin', right?

    • peggy_56092
      peggy_56092 Twopies

      Posted

      I will be interested in hearing how the reduction goes. Not sure when I will attempt 5 mgs. I live on the southern Oregon coast where it doesn't get cold until late January or maybe later, what with this horrible climate change. Keep on truckiin', as the hippies used to say.

  • alley2
    alley2 Twopies

    Posted

    Hi I'm the same would love to go away but not sure how I'll wake up from day to day each day is different the leg aches gets to me it effects my sleep.

    • Twopies
      Twopies alley2

      Posted

      thks--it makes me feel less alone.

    • Eimmarg
      Eimmarg alley2

      Posted

      my leg pain is unbearable what helps for you im said to say im looking at a walker

    • alley2
      alley2 Eimmarg

      Posted

      i take endep 25 mg sometimes i take 2 tablets and im om TARGIN 10 1 tablet morning and night it helps

  • EileenH
    EileenH Twopies

    Posted

    Have you ever read this post of mine?

    https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

    Very often it is a culmination of slightly more over a period of time - not just in response to a single heavy day. I will be tired after a heavy day - but the feeling ill and almost state of collapse doesn't come until a week or more of slightly more that you might not think is "too much".

    • Twopies
      Twopies EileenH

      Posted

      helpful, thank you. at 5 1/2 mg and feeling like rubbish much of the time, i have a long way to go, i suspect, before the gorilla goes traipsing back to the jungle.

  • Michdonn
    Michdonn Twopies

    Posted

    Twopies, I am basically PMR pain free, but if I eat something that irritates my inflammation, I pay for it. Diet is very important for me controlling my inflammation, so if I have a bad day or night sleep, I have have Diabetic Neuropathy also what I have eaten is a contributing factor. Think of what you have ingest it and if could be cause. Good luck Twopies, you seem to be having a rough trip on your PMR journey. I sorry hope things get better. 🙂

    • Twopies
      Twopies Michdonn

      Posted

      you are so right. im on a very strict diet out of necessity.

    • Michdonn
      Michdonn Twopies

      Posted

      Good Twopies, I think it makes a big difference, at least it has for me. Get the inflammation under control before tapering. 🙂

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