Posted , 14 users are following.
could someone help please. I am down now to 12.5 mg of Prednisone. Although my pain is not too bad I am so abjectly tired all the time. Does anyone else suffer from this tiredness. It is a living death and I have a very sick husband to take care of at the same time.
1 like, 33 replies
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EileenH jennybshaw
Posted
Almost all of us, to put it simply.
The fatigue is part of the underlying autoimmune disorder and isn't greatly helped by the pred unfortunately. That must be managed by pacing and resting appropriately - which I realise isn't an option for a carer. Where are you? Are there support options for you?
The links in this post may help:
https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000
Also, google "13 types of Sjogren's fatigue" (it is just another sort of autoimmune illness) and "the spoon theory byChristine Miseriando" which may give you some ideas.
jennybshaw EileenH
Posted
snapperblue jennybshaw
Posted
I have no useful advice, but want to reinforce that extreme fatigue is part of PMR for many of us. I felt like the Earth's gravitational field had tripled. When I was standing, I wanted to sit down; when I was sitting, I wanted to lie down. It was struggle to drag myself to even my favorite activities. So you are not alone, nor are you imagining this or exaggerating it.
Almost three years in, I am doing very well and do not have the extreme fatigue at all, though I can't say why. I always took enough prednisone to almost eliminate pain because I am more worried about chronic inflammation than I am about the side effects of prednisone. I am hanging on at 7 mg (and my body forcefully lets me know that 6 mg is not enough) and am functioning very normally.
I know that a lot of people have draining fatigue for a long time after starting prednisone, but I don't know how common it is to go back to pretty normal function as I have. I think I am really lucky. Perhaps someone else can answer this.
I am sorry I do not have an answer except, as others have said, to be kind to yourself and don't try to fight PMR- it will always win. Find some compromises.
jennybshaw snapperblue
Posted
Anniecurd jennybshaw
Posted
snapperblue Anniecurd
Posted
Thanks. I have always heard that the prednisone does not help fatigue, but it must for some of us. On the other hand, I can't say I ever felt "great" or had a lot of energy. No wonder doctors don't want to do research on PMR when we all have such different symptoms and reactions to medication.
Anhaga Anniecurd
Posted
I didn't get fatigue until after six months on pred I got to the 7 mg level. Have never really recovered my old energy levels although the "deathly" fatigue strikes very seldom now. So I'm blaming pred, not PMR. We are all different!
jennybshaw Anniecurd
Posted
Anniecurd Anhaga
Posted
Fatigue was one of my first symptoms with PMR, and when I started on pred it completely disappeared. There were moments when the fatigue came back, but I assumed the PMR was acting up, so I increased the pred and the tiredness left.
jennybshaw Anniecurd
Posted
Anhaga Anniecurd
Posted
Yes, it seems many people find they are fatigued with PMR before pred, but not always the case. I assume my fatigue is due to lazy adrenal glands, and this would be a result of being on pred. And now I'm in the habit of being lazy. However I do find occasionally even after all this time that I can be chugging along cheerfully, and then suddenly am overcome with weariness. The most inconvenient incidence of this within the past few months was when I was out for a longish walk with my family, not an unusual activity for us during nice weather, and I began to feel that I simply couldn't put one foot in front of the other. I had to, of course. We were in the middle of the woods on a walking trail. I was thrilled to encounter a bench where I made us stop for a few minutes while I recovered enough to continue. This sort of thing never happened to me before pred. This kind of experience is what I think of when I use the word "fatigue".
Anhaga jennybshaw
Posted
I think it's generally acknowledged that pred doesn't help fatigue.
EileenH Anhaga
Posted
That is the sort of experience I used to have with PMR - long before pred! I've told the story of being 2/3 of the way down a very short ski run where I had decided "just one more and I'll go home" and suddenly having no idea at all how to get to the bottom - which really was just 250m or so. My legs simply would not do ANYTHING and you couldn't get down that last bit without a few turns. What should have taken just a minute took me a good half hour.
Anhaga EileenH
Posted
Maybe I simply didn't live the sort of life which would trigger that kind of fatigue. Me on a ski hill? Not likely!
EileenH Anhaga
Posted
It's all relative! MrsO was out for a walk one day and 2 streets from home got similarly "stuck" - a kind neighbour found her sitting on his wall and ran her home...