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Are you able to exercise with MG?
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Yes…..walking 2 to 3 kilometres a day and for 5 months in the warmer weather in Australia I swim for 20 minutes a day and always feel really well after this. I am 80 years, have had MG for 60+ years and became a naturopath to help myself and others. I take the adaptogen herb Astragalus (5mgs) daily and this seems to soften the autoimmune reaction. I feel lucky and happy. It was not like this in my youth and I do sympathise with those of you who struggle.
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Hi. While researching the supplement Astragalus it would appear it’s not recommended for those with an autoimmune disease. Glad it is helping you though.
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Hi Leonora -Diana. If you read “Prescription for Herbal Healing” by American Author Phyllis A. Balch you will see that she recommends Astragalus as a beneficial herb for MG. There are other herbs not recommended, like Echinacea, but I have found Astragalus wonderful. It is not an immune stimulant in the same way some other herbs may be as it doesn’t stimulate reactions that create antibodies which are problematic.
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What brand or form of the herb Astragalus do you use? 5 mg seems rather little compared to the typical recommended doses I have researched. And where do you purchase it? I have read the article in the book by Phyllis A. Balch, I find her explanation interesting and would like to give the herb a try if I can be sure I am using a safe dose. Thank you!
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Are you able to exercise with MG? Has this always……
Yes, I have Generalized MG Seronegative. Medications partly reduce physical symptoms of my gMG sneg. Prednisone 5 mg, Cellcept 2000 mg/day, Mestinon 240 mg/day, for MG all to suppress my immune systems.
Each type of MG has different affects. Therefore as each of us as a different MG profile and different symptoms each day. MG is named the “Snowflake” disease as discussed. Therefore you have to figure out how to match and adjust any exercise routine.
Each MG combination has a different level of physical effort where MG will rebound, that’s get worse. When I say this I think about reports about chewing food. It as been reported chewing caused eating to become difficult during a meal.
You may have to keep a journal of what happens during exercise. It’s awkward to sense at first. As you become aware of how your body is reacting you’ll have a database of “hints” you can use to suggestions to start to adjust your exercises.
I’ve seen a number of Youtube videos about MG exercising. Expect to have to view a number of them to see what could be possible. Consult with your Doctors and Nurses about exercise. If they don’t know ask them who you could speak with explicitly about MG exercise. You can call people from the Youtube who are well qualified.
–JSW
myastheniagravisnews.com
Are you able to exercise with MG? | Myasthenia Gravis News Forums
Are you able to exercise with MG? | Myasthenia Gravis News Forums
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Are you able to exercise with MG? Has this always……
Yes, I have Generalized MG Seronegative. Medications partly reduce physical symptoms of my gMG sneg. Prednisone 5 mg, Cellcept 2000 mg/day, Mestinon 240 mg/day, for MG all to suppress my immune systems.
Each type of MG has different affects. Therefore as each of us as a different MG profile and different symptoms each day. MG is named the “Snowflake” disease as discussed. Therefore you have to figure out how to match and adjust any exercise routine.
Each MG combination has a different level of physical effort where MG will rebound, that’s get worse. When I say this I think about reports about chewing food. It as been reported chewing caused eating to become difficult during a meal.
You may have to keep a journal of what happens during exercise. It’s awkward to sense at first. As you become aware of how your body is reacting you’ll have a database of “hints” you can use to suggestions to start to adjust your exercises.
I’ve seen a number of Youtube videos about MG exercising. Expect to have to view a number of them to see what could be possible. Consult with your Doctors and Nurses about exercise. If they don’t know ask them who you could speak with explicitly about MG exercise. You can call people from the Youtube who are well qualified.
–JSW
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Good advice! I will begin to use a journal to try to find out what causes my balance problems when I walk.
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I can exercise with MG but I have to be self-aware. If I let my mind go to a place where I am stressed or anxious…I stop exercising. If I feel that I’m weakening…I stop. If I notice a stumble on the treadmill… I stop. It always feels like I am too cautious but I know that pushing too hard will ruin my day, most likely ruin tomorrow too…and who knows how much longer. I am able to exercise in several small (10-15 minute) periods through the day. Some times only 10 minutes in the day — sometimes a cumulative total of an hour or more; always staying aware that I do have MG and I can maintain my stability but too much exercise will negate my efforts. I also belong to an MG Exercise Group on Facebook. You can get some good information from the administrators and participants in the group.
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I started slowly at home, old school Wii Fit, I could jump on and take breaks as needed. I totally revamped my diet at well.
Last week I started at gym with a friend. I do some light weights, taking breaks as needed. I just keep plugging and stay self aware of fatigue.
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No energy, no balance, double vision, oh well. How long does it take to die from gMG?
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Until recently I was walking everyday and managed to get up to about 2 miles at 3 MPH. But one day something hit me. I don’t know what it was, maybe Covid. In any event, suddenly I couldn’t walk 100 yards slowly without feeling like I was collapsing. I have recently gone back on the treadmill and can put in 2 miles at 3MPH. AS Churchill said on air, in England’s darkest hour, “Never, ever, ever, ever give up!”
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The old saying “move it or lose it “comes to mind. Sitting in a chair move your legs and feet. Try some stetches. do some balance exercises. We all need to try to move with this MG.
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I finally found a very good and helpful physiotherapist. We agreed to focus on two intensive weekly treatment dates. This schedule and her wonderful expertise helped me to activate my bad muscles. In coordination with my physiotherapist I started to exercise in Gym this month. The main challenge seems to be to exercise efficiently while not to getting into exhaustion that might cause MG flare-ups. I do EGym- exercises that are well recorded and fairly easy to handle. Additionally I need to ensure proper stretching. I understood that MG patients should rather focus on short exercise units and not to do too many sets. But as I mentioned I am currently exploring my potential and need to learn and experience.
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With little effort I start over heating quickly, labored breathing and confusion follows quickly. Makes it difficult to exercise.
I’m still looking for a solution.
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Those symptoms can make it so hard to stay active with MG.
Have you ever tried exercising in a pool? Some people with MG find that the water helps keep them cool and makes movement feel easier on the muscles. If you’ve tried it, did it help at all with the overheating or breathing? -Jodi, Patient Advocate
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For nearly 2 years my gMG was poorly controlled and steroids contributed to 2 spinal fractures. An orthopedic surgeon didn’t want me to do physical therapy for at least 1 year from starting treatment for osteoporosis. Exercise only to point of pain was the plan. I spent a lot of time feeling myself deteriorate. Like many others I feel if I didn’t start using it I would lose it.<div>
On my own I began walking in my driveway. Using a wheeled walker at the start, it took 9 months, but I was walking 20 min in the morning and 10 min most evenings on my own. Proud of myself I reported this to my neuromuscular specialist. He could see the deterioration in my strength and felt physical therapy could help now that a year had passed. Turns out good in theory only.
Three weeks of physical therapy 3 days a week and my gMG has flared ever since February, including a hospital stay. I feel like I’m starting from scratch. I need to get my gMG under better control and begin again. I have to admit I’m a little gun shy, after how poorly I’ve been.
The only suggestion I have is listen to your body!
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I am able to exercise. I do the elliptical machine 3 times per week, some strength sessions with weights. I also use the mats for core strength exercises. Because I have been active most of my life, I continue to work out. Exercising has been a phenomenal cure for me for many ailments, including disc replacement surgery. I also walk 1-2 times per week. I do find that when I go for walks, I have some balance problems.
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It’s great to hear how staying active has been so beneficial for you. It’s also encouraging to see how you’ve found a mix of workouts that work for you. Finding that line between doing what helps and being cautious is definitely a tricky dance. Appreciate you being part of the conversation! -Jodi, Patient Advocate
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To be honest, you need to exercise with MG. The bottom line is your body does not care that you have MG. Without a good nutritious diet and exercise your body will fall apart. My PT actually has MG.If you never exercised you literally start with walking 1 minute 2×3 times a day but moving hourly by moving I mean get up. Literally move your legs and arms and neck you set your clock to go off hourly. You progress from there. You use an RPE scale to gauge how you are doing and stop at 4-5. Get pain, stop reevaluate Never more never to exaution and never push through it. You will find in the beginning just walking 10 steps is a 4-5 It gets easier i promise but consistency. What doctors forget to tell their patients is immobility will make osteoporosis worse. I had a fragile spinal fracture from steroid related osteoporosis. The best thing is to find a PT who specializes neurological diseases but my PT is on utube
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This is such a powerful reminder, thank you. That line, “Your body doesn’t care that you have MG,” is very true. Your advice about starting small and never pushing to exhaustion is beneficial. Thanks again for sharing what’s worked for you. It helps others feel less alone in figuring out what works for them. -Jodi, Patient Advocate
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I’m doing the zoom exercise recordings from my insurance company every other day. I enjoy them but the next day I’m somewhat tired but I feel ok and am happy I did them. But the third day the fatigue hits me bad and I can’t get out of bed for hours. The fourth day I’m ok and do them again.
It’s strange because I thought the next day after I would feel bad as usual with other activities like going out or cleaning. It always takes me a day to recover. But with these exercises it seems to wait an extra day. I’m thinking it’s because I get endorphins from the exercise which keep me energized for the day after.
I don’t know about that really but I do know I need to exercise because of my cardiovascular disease and resulting muscle wasting with MG especially breathing muscles. It’s hard to manage this disease with all the other medical conditions and activities I have to do.
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That delayed fatigue pattern is very real, and I’ve personally experienced it as well. It can be frustrating, especially when it catches you off guard. I admire your consistency and how you balance exercise with everything else you’re managing. It sounds like you’re listening to your body and doing what you can. Cheering you on! -Jodi, Patient Advocate
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Tai Chi and Qigong have worked for me. I’m able to control the stretching and repetition so I don’t overdo. I can choose how strenuously I work out. I can pick whether to practice standing, sitting or just mentally doing them while laying down. It’s meditative, and can be used for energy work and rejuvenates me. It can be a lifelong practice to keep me flexible and strong. There are online classes and videos available, so I can decide when I want to work out. And it has a low injury rate.
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Yes I’m finally able to exercise standing up to an online video by my insurance company. In the past I was not able to due to balance and stamina issues. After I changed my diet to plant based, got off most dairy and started taking more supplements, I lost 20 lbs, felt better and started doing some chair exercises, and then added resistance bands and hand dumbells. I now can do it every other day and feel even better. I can’t always stick to that schedule, but I do feel better overall, as long as I’m getting at least 6-8 hours sleep, which is never a given with MG
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Nah!
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I go to Physical Therapy sessions provided by my local hospital . I do two sessions a week for an hour or so each time and the therapists me put me through the paces to try to rebuild my lost muscles and give them extra strength. The Guys are all familiar with MG. My Local Senior Citizen
(I am currently 82) also has a fitness room which I also use on days I do not have PT appointments.
Stan
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No!
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