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

Posted by newtogmg75f @newtogmg75f, Jul 11 9:22pm

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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Profile picture for texasblooms @texasblooms

@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.

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@texasblooms
Dealing with chronic kidney disease, stage 3a, places me in situation to watch protein, phosphorous, potassium and sodium. Additionally, I have bronchiectasis. I have lost 20 pounds since last bout with pneumonia. PCP wants me on Boost, which I take daily. Pulmonologist has me on Azithromycin 3x week, to treat ongoing lung inflammation. I am 85.
I do like the ideas regarding chair yoga, stretch bands, kitchen counter exercises and leg pumps while sitting. I will try doing some of that--if I can quit the darn "falling asleep" thing! My energy level sucks! Oh. I also deal with tremor disorder! Like I said. I am 85, so aging most likely plays a big part in all of this. Still, God does indeed have a plan for me!

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Profile picture for leehowder98 @leehowder98

@texasblooms
Dealing with chronic kidney disease, stage 3a, places me in situation to watch protein, phosphorous, potassium and sodium. Additionally, I have bronchiectasis. I have lost 20 pounds since last bout with pneumonia. PCP wants me on Boost, which I take daily. Pulmonologist has me on Azithromycin 3x week, to treat ongoing lung inflammation. I am 85.
I do like the ideas regarding chair yoga, stretch bands, kitchen counter exercises and leg pumps while sitting. I will try doing some of that--if I can quit the darn "falling asleep" thing! My energy level sucks! Oh. I also deal with tremor disorder! Like I said. I am 85, so aging most likely plays a big part in all of this. Still, God does indeed have a plan for me!

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@leehowder98 What a puzzle! Have you thought about asking your pulmonologist about a PT referral to devise an exercise program tailored to your needs? A PT may be able to maximize the benefits of your workout and provide you with an at home workout plan.

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