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
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 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 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.
Twopies peggy_56092
Posted
im an old hippie (emphasis on old) so i guess i will!
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 alley2
Posted
thks--it makes me feel less alone.
Eimmarg alley2
Posted
my leg pain is unbearable what helps for you im said to say im looking at a walker
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 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 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 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 Michdonn
Posted
you are so right. im on a very strict diet out of necessity.
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. 🙂