Pmr can’t predict one day to the next

Posted , 12 users are following.

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

  • 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.

    • 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?

    • 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.

  • 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.

    • Posted

      thks--it makes me feel less alone.

    • Posted

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

    • Posted

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

  • 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".

    • 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.

  • 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. 🙂

    • Posted

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

    • Posted

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

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.