Posted , 14 users are following.
Can anyone please tell me if they sufffer with constant tiredness and how they deal with it as finding it difficult at the moment....I ve been on preds for about 3 years...reduced too quickly initially with several flares but now on 9.5 my and happy reducing at a slower but effective rate but the tiredness is really difficult to manage.
Thank you
0 likes, 16 replies
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constance.de julian99981
Posted
Morning Julian. I find tiredness even worse than the pain at times. Five years into PMR, down to 5 mg now. I have learnt to cope with the pain of PMR and OA (well almost!) but the tiredness?!? Going for a walk in the fresh air doesn't help, exercising for just 10 minutes does't help, believe it or not 'sleeping' does't help. POS!!
Good luck. Hope you get some helpful answers.
C. 😴😴
Flutterbie57 constance.de
Posted
Your comments made me smile this morning Constance. I am in the same position as you most of the time, but every now and then, I get up, and I have a day, like I am having today, when I have more energy than I usually have. It is like an amazing treat. My head is so much clearer than it usually is. I examine and reexamine everything I did the day before - what I ate etc to try and find the secret for my improvement. I hope you all do have your occassional 'slightly better days' too. It always gives me hope that we can and will improve.
Silver49 Flutterbie57
Posted
I recognise this but have given up trying to decide what I did or didn't do!😳
FlipDover_Aust constance.de
Posted
People who, even when they know I have PMR, suffer fatigue, on a cocktail of medications - all of which have caused a huge weight gain, tell me I need to go for a walk as it will make me feel better!!
AAGHGGHHHHHHH
susan29426 FlipDover_Aust
Posted
tpaggs susan29426
Posted
There was a time when I could sleep anyway I wanted. Now, I spend the night going from my left side to my right side to my back. Oh and I also have a pillow which I place between my knees to alleviate the strain on My lower spine. You can imagine how annoying it is when I'm constantly changing position. I used to sleep in one position all night! When I started having pain in my neck, I blamed it on the pillow and bought a new one. Pain still came and went. When I had pain in my arm, I blamed it on the fact that I had been laying on it, etc. Now I realize it was none of those things. I have PMR and that's the bottom line.
FlipDover_Aust susan29426
Posted
whoops, I said a naughty word. lol
I was something akin to "what a fool", only not so nice lol
constance.de FlipDover_Aust
Posted
But Flip, have you not realised yet that PMR is "all in the mind"? !!!!!!?
😏😡🙈👀
Silver49 FlipDover_Aust
Posted
Try biting their head off and tell them it's one of the side effects of your medication.
Anhaga Silver49
Posted
julian. julian99981
Posted
from one Julian to another ..... I haven't quite nailed the tiredness but,
I think if pred is a bit low I notice it more. A bit like a tightrope. Just reduced from 3 to 2.5 and had a few off days. Stable now. A lot of change about a year ago after heart stent, the rehab exercise gave me back most of the fitness and a lot of the energy I'd lost to pmr/pred and no flare, keeping up the (non-strenuous) exercise seems to have helped the tiredness. I'm not good at routine so its an effort. Lost the 10kg I'd put on, which also meant I eat less of the not so good things. I avoid chocolate biscuits by not buying them. "Brain gym" helps, in the form of projects, but sometimes I just stare at things. Pacing helps enormously - took 7 days to chop down tree that took a day 6 years ago - I do things in small measured bites rather than one humungous effort. And I try to remain positive - which can be hard at times but helps with all the other things, they all sort of build on each other.
Nefret julian99981
Posted
Fatigue is a common symptom of PMR and the unlucky also get it as a side effect of Pred. At it's worst, I just had to go with the flow and rest when needed (although that often turned into a 2 hour nap) for the simple reason that I couldn't remain on my feet without collapsing.
It does get better as the dose reduces although some notice it happens while they are reducing. I didn't get that particular problem, but even now many years later I do find it still happens to me occasionaly and I have to switch off.
Loulie julian99981
Posted
tpaggs julian99981
Posted
When I feel extremely tired, I know I'm having a flare-up. The tiredness almost always accompanies some kind of muscle pain. After the flare-up ceases, I generally get back to normal (as long as I continue on my dose of Medrol).
susan29426 julian99981
Posted
I don't have near the energy I used to as a former Type A dynamo. Possibly the prednisone but, in my case, I think a lot of it is due to being in almost constant pain. It takes it's toll! I'm willing to put up with a certain amount (3-4 on a scale of 10) to try and get to a dosage where my surgeon feels o.k. reconnecting my colon, but I, too, am tired a lot. My doctor recommended stinging nettle tea to nurture the adrenals, and it does seem to give me a bit more energy (I make a big batch and drink it through the day). Best wishes to you.