Regaining strength , conditioning and exercise after a flare in MG .
Wondering If others have experience and suggestions about how to get reconditioned and back in reasonable shape after having a setback in an autoimmune disease . I have
generalized MG and recently have been sick
( pneumonia and UTI). I’m also still trying to find the best treatment plan… my doctors have been changing meds ,etc and I have not really gotten better since diagnosis in June 2025. It’s frustrating and I know I'm impatient but at my age ( 76 F) I can’t seem to pace myself. I used to be fairly active.
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Hi!
I’m going through this now as well. I’m 67, have always been pretty active despite having Lupus, Hashimotos & diabetes for over 30 years. Every time I’d get a flare I would have to slowly start getting back into shape by building up my muscles & stamina very slowly or else I would relapse. It’s a tricky balancing act. You really have to learn to listen to your body.
A few months ago I spent 2 weeks at Mayo dealing with a serious autoimmune firestorm. I was put on very high doses of prednisone which I still am on but slowly tapering. I got really weak & could only walk around the hospital floor at most. Most of the time I was in bed.
At discharge I was told to take it slow. Fast forward 10 weeks later. I feel better most days but sometimes my symptoms are worse. Those are the days I have to choose quiet activities and pay attention to the need for rest. I have the advantage of having a daughter who is a Physical Therapist. She suggested that I start with chair yoga. There are so many good, free YouTube videos to follow now. I thought it might be too easy. I was used to water aerobics 3-4 times a week, pickleball, dog walking. But it was just the right thing to start with. I felt great after the first session, feeling like I stretched out my sore body. The breathing techniques were so helpful especially after pneumonia. I had lung issues as well. In the last couple of weeks, I’ve gotten back in the pool. Nothing crazy, just moving around in the water, strengthening muscles by gently working against resistance from the water. Feels good! Yesterday I actually got on the treadmill & stationary bike for a short easy session & it was fine. The key is not to overdo it. I’m not a very patient person but I have learned through the years it’s not worth it to push & then relapse. Eventually I will add some resistance bands a few times a week to keep building strength. It’s also important especially if you’re on steroids to get enough protein. Steroids accelerate muscle loss & you need both protein & strength training to help.
I hope this helps you! Easy does it! I’m
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2 ReactionsI loved reading your posts about regaining function. I am slowly getting better from having severe anemia and major inflammation due to lupus. I couldn't do anything; I had my AM nap, my afternoon nap and then I fell directly asleep at 10 pm. I had always been able to stand in the shower stall to take a shower but I could not stand that long. I lost my breath and strength standing for a shower. I am still waiting to hear about the results of my bone biopsy and I am taking 15mg of prednisone every day since early March. But I feel better. I can walk without losing my breath and strength; I can't try crazy things; I must be cautious and listen to what my body is telling me, even if I don't want to hear it. My life is coming back to me.
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2 Reactions@momac59
Thank you !!! I didn’t know what was wrong with me the last 20 or so years and never learned how to go slow and pace myself. I greatly appreciate your comments and suggestions as I can process them and which ones I can try. These kind of illnesses are difficult to navigate and even though I had a great day yesterday and felt really good after some cardio but today I’m feeling weak and I know I can’t do much. Since I was only diagnosed in June 2025
I haven’t been able to
“get a grip “ so any and all info/ information/ experiences helps me feel not so alone!
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2 ReactionsI’m not doing very well with this texting and posting but I had a follow up comment about prednisone…. I WASN'T aware of the muscle wasting with prednisone !!!! I’ve been on 20 mg daily since 10/25 . I have been trying to get more protein recently and this is good information. Thanks again!
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3 Reactions@momac59 My workout is similar and it’s good to hear relatable ideas. I’m 73, and used to love spending hours in the gym and pool. Now lifting low weights or no weights at all, I want to keep my body in motion and bones strong. You’re fortunate your daughter is a PT. During GI flares I walk a long hallway in my house, turn on Alexa music and set the timer in 15 minute intervals. My goal is to walk 15 to 60 minutes a day. Thank you for the bands and chair yoga recommendations.
My skin reacts to pool chemicals and I am crushed. For now I’m on a BRAT diet and am very cognizant about my protein intake. I drink Ensure Max, eggs, and frozen oily light tasting fish and eat at least 2-3 times the suggested daily protein intake. My fear of breaking a bone or dislocating a joint keeps me active.
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1 Reaction@texasblooms … thanks for sharing some of your routine. I like the idea of trying to track the time and creativity in coming up with something you can do . I miss my old routines . I’m so hoping I can get back to walking our dog. We had 3 dogs at once in the past but now only one. Currently it looks like I can’t seem really or exercise much 2 days in a row. I would like to get back to doing something regularly as I used to….. a class at the gym, or a a certain time for a u-tube class., etc. love suggestions to try !