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No energy - who to see?
Has anyone any suggestions about who to see (medical specialist) for help in regaining muscle strength, energy levels and recovery from minute levels of physical exhaustion following both PMR and prednisone (or from any energy sapping illness)?
I'm on the floor most days now and can hardly get up to do anything. The moment I try to get moving I have about 3 minutes of energy before, not only do I have to sit or lie down, but I feel like I'm going to pass out. If I really push it and go out, for a drive or shopping I'm like a zombie throughout the process. Sometimes I find energy from somewhere for a while once I've pushed myself but I soon crash to worryingly low levels again.
I'm wondering if any specialist can quantifiably measure input and output of physical exertion in the muscles or the body as a whole so that, perhaps, a specific cause might be identified and something might be done to help me build my strength and reserves again. If not, I'm pretty sure I'm going to end up collapsing completely and find myself in a hospital.
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Congratulations. You did well to only be on one medication for a year. I think most people spend a lot more time than that on meds. I'll on prednisone hopefully for 13 and a half months, and Actemra for probably several years.
I’m feeling the exact same, down to 3 mg, no energy! Praying I will be off this “poison” by the end of September!!
It's amazing that every time I am encountering a PMR issue, I open this website and there are others actively discussing it. I am tapering off methylprednisolone and I get Actemra infusions monthly. I don't have a lot of "pain," but I still hurt. It is the kind of hurt when your muscles are exhausted, not pain per se, but an ache of being used up. I try to get on our recumbent elliptical and go walking and also just started trying to work out at a gym. But I feel more physically tired now that before this last flare. This one seems different. I have gained so much weight with the steroids over the last year I thought I would try to "up" my exercising, but it is killing me. I go to the gym and am exhausted for 3 days. I guess I'll have to dial everything back for a while.
I don't get it and my rheumatologist just said that if the Actemra isn't helping, maybe we'll stop it. But I don't think I can go through another flare and starting up medications again. I have another medical issue and between the two I feel like giving up. I know my issues are less than many are suffering, but I was crying this morning and then decided that doesn't help at all.
Right now everything I do exhausts me, and I'm sick to death of it, and a little pissed off. Imagine all the swear words I've been uttering today. Why do we all have to go through so much???
I just don't understand why I'm feeling worse, not better.
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1 ReactionOMG, I so feel your frustration, pain and agony. Been there, done that and seem to be in the other side. I remember vividly my hubby walking in the bedroom while I was making bed and crying. He said “just take a pin pill.” No one truly understands the “endless circle of agony” we go thru.
Yesterday I was walking tall and feeling great. Today, a set back. But…….I did do the following……
First off, get to the pool and start walking laps. It does wonders for the psyche, easy on the body and not so xhausting. If that works, then add leg movements, arms etc.
Promise you won’t be disappointed.
Good ‘upcoming and keep us posted.
A step towards empowerment over this wicked disease.
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2 ReactionsThank you for your kind words. I'll think about where I could access a pool!
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