Muscles don't seem able to repair themselves.

Good suggestion, I hadn't even considered carry my phone. Thanks.

I was under the impression that PMR is self-limiting, which means it does go away at some point. My mothers did and another friend of hers although they both had it much worse than me. My doctor hasn’t said it’s permanent. Do you have an article that says this? I’m two years from start and six months off prednisone so still experiencing stiffness but nothing like PMR pain. Exercise both strengthens and causes pain but as I played a lot of sport when young I know pain after is normal.

I think the underlying conditions may be present to resurface again. But the disease is not considered a muscle wasting disease but lack of activity and age can be. I agree some strengthening is required. In fact its the only thing that keeps me going. I diagnosed myself with this link. Here is comment in that link: "Although PMR causes severe pain in the proximal muscle groups, no evidence of disease is present on muscle biopsy. Muscle strength and electromyographic findings are normal."
https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease

My comments are about muscle pain following exercise can mean different things if you are a PMR patient than if you have never had a PMR flare. Remember the gold standard treatment for PMR is simply an anti-inflammatory. PMR and inflammation are tightly coupled.

Since the medical profession does not know much about PMR it is difficult to say with certainty just about anything as a universal truth. They cannot tell you what causes it, nor can they test for it. All they know is a set of symptoms and all the other tests are normal. It is a default diagnosis. PMR being gone could mean it is only in remission or it could mean that it is gone permanently, no one really knows for sure.

I am taking about two things here PMR which is the potential of disruption of the normal, or healthy, work of the immune system, and PMR flare up which is when it all goes out of control. The condition called PMR is with you always and sits there like the 800lb gorilla in the corner, and can flare up again if you aren't careful. This is why I can only dream of pork chops, bacon and sausages, french fries English style with vinegar but never able to eat them. This is how the condition has been described to me.

I have no experience of being old, neither of my parents made 79. Right now my tests are normal so this is probably something else.

I guess the conversation gets a life of its own. Getting into exercise and lots of side bars. I would call it PMR whether its the disease or the flare. I have had 2 flares after being "cured". I will have to let you know what 79 feels like just being 72. I would also agree the pain associated with the inflammation is self limiting in itself. I cannot see anyone being able to push themselves beyond the hurt. But it helped me immensely to make an effort. I could at least make it through the day. Of course prednisone then fixed everything. I went right back where i was. But at 72 or maybe the downtime I am no longer completely pain free. I have decided that may not be realistic. But I get up and go to the gym. I doubt whether I could finish concrete. I just completed some hormone testing. Numbers are a little off. So I have always felt the PMR pain is as much a muscle inflammation as one in the joints. Muscles , tendons, joints, whatever.

Yes I’m 73 and got it at 71. I also don’t know if how I feel would be how I would have felt anyway. But I had nothing back then. I was flexible and active so I am hoping to get back there. Pilates once a week and swimming is good. Only mild stiffness but it makes me feel much older.

Your answer helps me tremendously. I took my last dose of prednisone in January and was tested and pronounced “in remission “. I have been on a roller coaster since. Recently I’ve been experiencing significant weakness in my calves and quads. Walking was the only exercise I could manage during the active phase of PMR and therefore I thought these muscles would have more reserve. There seems to be nothing I can do to power through it, I simply have to rest and try again later. Apparently I’m not alone in this weirdness.

I have been in treatment for PMR for almost a year. My symptoms have improved as far as stiffness and joint pain. My rheumatologist is weaning me off prednisone, but the problem I have now is that on some days I have this overall body weakness. So much that my legs feel like they are going to crumble and won't hold me up. I also have no strength in my upper body. I have heard people talk about adrenal fatigue and wonder if anyone else has had this experience. I am 73 years old, but I have always been active. Has anyone ever taken adrenal supplements while weaning off prednisone?

My comments were meant as one being cured or in remission. Meaning we are no longer on steroids. Being on steroids and trying to taper has a life of its own. I dont think the discussion of PMR can be the same for those that are on steroids and those that are off. You are not truly in remission while on it. On steroids I had no pain. During the taper I had immense pain. The period in the 2 months or so following no steroids significant pain. 2 months after to present is the area where we should be back to normal or is this a new normal. I would say of course you have adrenal fatigue. I have done a lot of researching to find something to increase cortisol naturally that would help with taper. My wife is on Dexamethasone for a tumor. They suggest Vitamin C dosage. We have even tried IV with Vit C. Increased B vitamins and foods. A supplement called Boswellia in fairly large doses. You would think there would be more research on improving Cortisol production but I didnt find it.