Regaining strength , conditioning and exercise after a flare in MG .

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

I 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.

@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!

I’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!

@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.

@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 !

@newtogmg75f Memories... Poodles lit up my life for 30 years. I lost one in 2021 and the last two in 2024. One unexpectedly to bloat, first time I lost a young dog. Fortunately I have a doggie door, still we enjoyed our daily evening walks. It was painful to walk barefoot, it was impossible to walk the dogs for >two years. Thankfully the three little girls next door would walk the dogs in the cul de sac and I'd sit on the porch. So sweet, everyone had a great time. I forgot how much better my feet feel and understand the hole in your heart. Big changes. Last January, out of the blue my feet got better. After my first set of infusions my thighs don't feel heavy.
I no longer have a planned workout routine. No classes, I worked with a trainer. Today I have a gym buddy on MWF, bike and arms or legs, no set expectations. I tell myself to know my limits, everyday is different, AI is about adaptating. In 2021 I started with a PT for balance and she gave me home exercises. I bought ankle weights, light arm weights, and a long green belt to improve my range of motion. I plan to buy the new type of thick bands, my skin cannot tolerate the thin ones.
I'm not proficient in understanding different muscle groups but make up an exercises to stretch out a pain. Frankly, I don't know if this is healthy but feel it might tone down additional stiffness. For example, random push ups or squats by the kitchen sink, walk backward holding on to a kitchen counter, or leg stretches on the sofa. But not during a flare. I have inflammation of the nerves/tendons, not arthritis, and don't know how I would react if I had arthritis. This is becoming a lifestyle, a way to take care of myself. But it's not a routine. I'm adapting to the new me, it's an uphill process.
Here's a balance hack that helps me when I wake up to go to the bathroom in the middle of the night. I put the old style bathmat for a tub on the floor next to my bed with a walker. Doesn't look great but I feel safe.
Let me know what helps you. I welcome new ideas! Things change all of the time.
Be well, be safe.

Great ideas! And thanks for the thought that “AI is about adapting “ !! I will work on that as a mantra or something. When we lost our last wonderful dog in April I just couldn’t deal with not having a dog. Of course I’m not over griefing by any means but I like to think of our last wonderful pair of dogs( Sky and Finn) is sitting above us looking down and saw that I’m just not happy without a dog . So of course we came across the most perfect dog. He is anxious to get out on walks but I’m not there yet so he stays by my side either inside or on the porch as my therapy dog and we can talk about how nice it is that Sky and Finn want me to be happy and sent him to us . (. I know a lot of people will think I’m nuts but I have almost always had a dog since I was about 4 years old. ).
I tell them that if there’s any truth to the idea that our beloved pets will greet us in the afterlife they better all come running when I get there and we will all run around and roll in a beautiful field together.

@newtogmg75f You’re not nuts; you are just lucky enough to have found the unconditional love & joy that a dog can give! They have been such a big part of my family over the years. Especially when I have been my sickest. The comfort they bring is immeasurable & with AI diseases we have to use every tool available to help us cope. They are also good motivators to keep moving when you are able & ready, no matter how simple or limited. ❤️🐶