To all,
You are very kind to respond to my first post.
I’ve got through my first week on 20ml prednisone.
I’m absolutely shattered today. My left arm is still painful but rest of my muscles are much better.
Is the feeling of chronic fatigue normal? I can’t hardly move today . I’m a bit worried .
Hi denis61, you have got through the first week and your pain is starting to disapate so that is a big plus. The fatigue can be very debilitating I am afraid. Just try to rest when you can and pace your activities. You may have over reached and gone beyond what your body can do at the moment. So yes it is a common feeling being zonked. IT does get better but you have to do the right things. Low carb diet and proper rest and recuperation. Do you think you may have overdone it this week?? 🌻
Thank you for your reassuring reply.
I’m just so used to being an active person .I didn’t think shuffling slowly around the corner for 15/20mins would now be too much exertion.
I’m going to take it easy this week and try and keep positive.
Not normal - but usual in most autoimmune disorders I'm afraid. You manage it better by pacing - and resting as needed.
But what have you been doing? The pred has cured nothing - it is managing the inflammation to make your quality of life better in the meantime until the autoimmune part of PMR burns out and goes into remission. The actual illness is still there - making you feel as if you have flu and causing fatigue. It makes your muscles intolerant of acute exercise - and so if you do a bit too much you suffer more than you would expect for doing it.
healthunlocked.com/pmrgcauk......
might explain it all a bit.
Thank you for your response . Yesterday,I tried to take a walk for 20 mins. That must have been too much, too soon .
Pacing is really important. Unlike many here I didn't experience the fatigue at the beginning but as my pred dose lowered I did - big time. So I learned that after I'd done something active or stressful (and it can be good stress, even something as simple as having coffee with friends) I'd need down time, maybe with a book, on this laptop chatting with the forum, that kind of thing (or a nap)! Today, for example, I took part in an open sing with the community choir I go to. It was really fun and I came home and just had to sit and drink a cup of tea, even though I hadn't done anything particularly physically or mentally challenging. The key is, I think, to stop before you hit the "deathly fatigue" wall. PMRpro's idea of taking two ten minute walks instead of one twenty minute one is the right way to approach life generally for now. It does get better.
It is early days yet Denis. You need to be resting and adjusting. What you are feeling is normal for this disease. The signs are good, the pains are less. The fatigue, I’m afraid goes hand in hand with this. With me, it has been off and on. Don’t try to do too much right now and avoid stressors. Just rest and let yourself be ill for a bit. Let us know how you are getting on.
Thank you Sheffield Jane for your good advice.
I’m going to rest and allow myself time to adjust .
I think I was trying too much,too soon.
Hello...I’m only four weeks diagnosed & finding it incredibly hard. I’m usually very very active, & when I try it now either I fail, or I do it & fatigue hits me, or I suffer the next day! Went away for 3 days. We don’t want to tell my elderly aunt I have this (as well as newly diagnosed diabetic & having fibromyalgia & osteoarthritis), so overdid it...then, when home, the ‘flu aches came back again (thought I’d got rid of them in week 3!) Still, I had stuff to do & a sunny day meant we went walking in the forest...but only one mile, not the normal five miles! Next thing I know the shoulder pain is back, too! Our bodies won’t let us do it Denis61...it’s a lousy disease. You may need to read a few bits, like I did....14 types of fatigue explains it very well, and the gorilla in the house is good and there’s one more but I have brain fog,...got it ‘the spoons theory’!! I mean it, these are helpful...now the links...one of our lovely ladies...PMRpro, or Poopadoops....any chance of the links for Denis61, please? I printed them off for family to read & stored them on my laptop...if I could just remember where that is?.? Take care, I’m in the same boat...new...and totally at sea!
healthunlocked.com/pmrgcauk......
all here 
Thanks so much...knew it was easy! Had to take half a sleeping tablet last night...take one about every 10 days, because the ‘flu was so bad the previous 3 nights! Of course, this morning I’m dopier...than usual!
Hi Pixix,
Take care too. I’m still in disbelief that this has happened .I’ve always been a very fit and strong person. Its so difficult now .
My Mother is 86 and has Alzheimer’s. I can’t be there for her as much as I could before PMR.
This year I traveled 5 times to the UK to care for her whilst giving the carers a break. I live in Charleston SC USA. I wonder if this stress has attributed to this disease?
Best thoughts back at you Pixix.
That’s hard, Denis. I feel for you. When I was diagnosed with fibromyalgia I was my Dad’s carer, but, luckily he loved my husband a lot...so he took early retirement, which helped me so much. We managed to keep the diagnosis from my Dad, but it was a tough time (& that’s without flying across the pond!) Dad was 96. Until then I was fit & strong, I really understand. I battled Fibro, & this year we did a four week independent tour of Colorado, & I was fine. But started having ‘different’ pains in September, ignored them, October I couldn’t ignore them...PMR & diabetes the result. I’m still completely in denial! I’m on 16mg. Started on 15mg, but it just didn’t get rid of all the pain, so upped 1mg. It made a difference. Today I’ve been up a ladder painting tops of our gazebo beams. Only for 2 hrs instead of normal all day, but that’s huge compared to October! I tell you so you can have hope!! But tomorrow it’s likely I won’t be able to do much at all. Planning is tough. We are due to go hiking in the sunshine, but I need to accept I may sit in a chair all day (I can’t accept that, we hike twice a week, are renovating a cottage & landscaping a previously derelict yard!) I’m planning an escape to the sun in January...Fort Myers area in Florida...but a bit fearful as I’m not sure I will be strong enough. I’m 63 & I’m fighting against it all...except I started on a low carb, no sugar, diet! Keep going. So sorry about your Mum. They say stress can cause these things, but I ran a pharma Marketing dept travelling all round Europe & over to the USA four times a year for 10 years, & didn’t have any stress issues! Not sure they know, really, what causes it, though I accept what PMRPro says...she’s very wise.
Thank you for helping!!!😨😴
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