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Are you able to exercise with MG?
Are you able to exercise with MG? Has this always been the case? After how long do you try any physical activity after an unsuccessful attempt? -
25 Replies
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No. I get worn out fast and the Balance, vision worsen.
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I have the same problems.
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I walk on my treadmill a combined 3 miles a day. I also exercise with small barbells for arm strength. For the most part no issues.
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I do fairly well when exercising. I try for 20-30 minutes a day. Some water aerobics stuff, getting out of chairs, stationary bike. I do OK for a bit after and then my leg muscles just give up.
Not quiting though.
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I “exercise” and I make sure any therapists that work with me know that pushing me is a bad idea. I know my limits, and they mostly respect them. I encourage learning about MG. When I was diagnosed, the therapists were offended when I made them stop, and thought I was being uncooperative. I have a problem tolerating warm rooms and watch myself if I have to go outside.
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Like you, I’ve “trained” my personal trainer and physio therapist and they are onboard with my very slow incremental progress. It’s been over 5 years and they never push because they know that could trigger a setback. At my recent neurologist visit, after the muscle tests, he congratulated me for being his strongest patient. I do a warm up every morning, core & weight training 2-3x week, and walk 20-30 minutes every 2nd day. If I feel tired, I take a rest day or two or whatever I need.
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My physical therapy is limited to the VA. As such it is very limited because they are overwhelmed. At best once a month for an hour. Right now my PT wants me to focus on balance exercises. I have tried, gently, to get her to understand that what’s going on with me is not “fixable” by physical therapy. It’s MG!!!!!!
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Me too! The therapist has me doing balance exercises, NOT GOOD! Cannot do. Does the VA have an indore, heated pool? That would be great, the BEST!
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I like to exercise mostly walking 45 minutes a day and balance exercises and strength exercises. I find the strength exercises gives me pulled muscles continually but still do them several times a week . I like being outside and I thought movement is good for MG in real world studies.
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I was diagnosed in 2019 and could not exercise. I think a big part of that was fear, as when I tried to exercise I overdid and that caused bad results.
During these days we were trying to dial in the meds needed to help control the effects of the disease, ie: fatigue, double vision, tremors, stuttering and all of the rest. Last January my weight got to 280lbs from 225lbs and I decided I had to do something. We changed our eating plan and I started to walk. At first I could not make it to the end of the block and back – maybe 1/4 mile. Now I am walking 3.5 miles many mornings before it gets too hot. I progressed through 1/4 mile and did that for a number of days then moved up to 1/2 mile. I stepped up to 1 mile, 1.5 miles, 2 miles, 2.5 miles and now I my average walking distance per day is 3.1 miles and that equates to 6300+ steps. I walk in streaks. 3 to 4 days I get the miles in then life happens and I miss a couple of days. It has taken me 8 months to get to this point. I have little desire to try to get to 4 miles a day. I average about 17.5 minutes per mile.
My weight is holding between 225 and 230lbs. We will probably adjust our eating plan again and try to get down to 200, then maybe 180. I’m 6′ 1″ tall.
I am not in remission as I still have minor double vision, problems with crowds and other MG issues. I am taking Prednisdone, mestinon, Imuran and my monthly IVIGS have moved to every 5 weeks now. My goal is to stop my 5mg per day of prednisone sometime in the future as well as eliminating my IVIGs.
Walking is good for me.
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i am able to exercise. i am able to play golf and tennis. my symptoms are largely restricted to the bulbar nerve distribution. i have difficulties with speech, chewing and swallowing. the symptoms are controlled with daily prednisone and weekly Cuvitru infusions.
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I exercise very little, but when I do, I only do as much as I can. When I get that feeling of extra weakness, I stop. For example, if I try to do ten leg lifts with each leg, I will begin with one leg and if it feels too weak after 5, I switch to the other leg. Then go back to the first leg and try more, etc. I do try to not strain myself because I know it will affect me badly. That “no pain no gain” concept does not work with MG. Before MG, I had no problems exercising.
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Water aerobics has been a game changer. The cooler water temperature enables me to do an hour of fairly high intensity workout daily. Any walking or exercise outside of pool results in overall weakness.
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Yes I go to a gym called hotworx where you exercise in an infrared heated sauna.. it’s HIIT training on a rower and bike and I always feel so good afterwards. It’s definitely helps my muscles. the infrared heat is really good for circulation and really helps the muscles.
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Male, 83, 6 years into MG. I was able to walk unaided for a year or two, but the walker is my friend now. PT every week and I am bedridden. No breathing or eating problems, but lately I have had double vision and one eye drooping infrequently. I have a caregiver 3 hours 5x week, so the cats get fed and my bedding washed as I’m wetting the bed as I did as a child. Prostate cancer and brachiotherapy probably responsible for that.
I live in the California desert and today it’s going to be 118’. I keep the temperature indoors at 81’ and when it’s lower I suffer, quite the opposite of what I read here. I have almost died from hypothermia, both times at Thanksgiving, once in San Francisco in a doctor’s lovely home, and once in Woodstock New York at a large country home. I can last at a restaurant 1 1/2 hours if the company is good but getting ready takes hours and my. Caregiver has to button my buttons. I get up 5 times a day on my own and make the 40 steps to the kitchen. I have a urinal collector at the bed and I go about 3 days between bowel movements. I just bought a gel pad for my adjustable bed and it’s working to prevent hot flashes in my back.
It amazes me how disparate the symptoms and problems are with MG in others. I can’t imagine how young women with families to care for deal with it. At my age I can’t tell the difference between MG symptoms and those of ageing. Fortunately I have a big TV and it’s football season again and tennis after that. And TCM, bless you.
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I just returned to exercise last month after a long illness. It’s been a hard road back despite taking a cautious approach. What is super easy one day, on another day might cause extreme fatigue afterwards or even muscle pain. I’ve built up exercise tolerance before, so I know super slow and steady is the key. <font face=”inherit” style=”font-family: inherit; font-size: inherit;”>MG News recently reported on a study that found incremental exercise can </font>build<font face=”inherit” style=”font-family: inherit; font-size: inherit;”> stamina in MG patients, which I’ve personally found to be true with time, patience and caution.</font>
<font face=”inherit”>I see both a physical therapist and a personal trainer (both 2Xwk) who take a slow, low intensity approach given my MG and tell me to listen to my body. </font>My personal trainer focuses on balance, fall prevention, strength training and weight bearing exercises, and my physiotherapist focuses on flexibility and reducing inflammation.
<font face=”inherit” style=”font-family: inherit; font-size: inherit;”>My worst MG symptom is that I trip easily so I walk on a treadmill, not outside. I’m up to 15 min cardio every second day on my treadmill 3 times/week and do a dynamic warm up and very light exercise program 10 minutes per day. I take mycophenolate (immune suppressant) so infections/viruses often set me back. Both professionals ask me what exercises the other has assigned and dial my program back on days I’m tired. </font><font face=”inherit” style=”font-family: inherit; font-size: inherit;”>I have insomnia on the days I’ve been to the gym, which means I’m exhausted the day after so we call that my recovery day off. </font>
My current goal is to build up my strength and stamina for a family trip to Disneyland and the San Diego Zoo in 5 months. The MG Foundation of America has a great free webinar on preventing fatigue – Use Your Spoons Wisely – available anytime at https://myasthenia.org/MGFA-Events-Webinars/Webinars/Wellness-Series<font face=”inherit” style=”font-family: inherit; font-size: inherit;”>.</font><font face=”inherit” style=”font-family: inherit; font-size: inherit;”> Airports are a huge challenge for me but, after listening to this webinar, I’ve decided to request transport </font>to<font face=”inherit” style=”font-family: inherit; font-size: inherit;”> the gate from now on rather than tire myself out walking across an airport at the start of my vacation. And at the park and zoo, I’ll rent a scooter/</font>ECV (Electronic Conveyance Vehicle) to prevent getting overtired from the inevitable walking and standing<font face=”inherit” style=”font-family: inherit; font-size: inherit;”>. I’ve found useful tips in travel blogs for families (e.g., the Undercover Tourist) for these and many other amusement parks. The tips to prevent kiddos from getting hot and </font>tired can also apply to MG!
myasthenia.org
MGFA's Wellness Webinar Series aims to connect, educate, and empower MG patients, care partners, and medical professionals.
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I understand about tripping when walking outside. I had a doozy a couple of weeks ago when I fell trying to walk through a graveled area. Dumb!!! MG means that we have a compromised immune system already. Who prescribed mycophenolate for you. I understood that it was an immuno suppressant. Am I wrong? All I best to you.
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Yes. I have “bulbar” type MG so my arms and legs are not affected.
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Yes I do exercise. I train with a trainee 3 times a week. I also ride my bike regularly though if I am having a difficult episode with double vision I have to be very careful in training sessions and do not ride a bike I do as much exercise as I can as often as I can and I believe it helps me. My training program is also intense especially for someone my age (79)—it is not unusual for me to burn 500 to 600 calories a session. I recommend it but caution you to do it supervised. As for bike riding I do that with someone for the same reason I recommend supervised training sessions. I exercise because I intend to live life as fully as I can for as long as I can.
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Soon after getting diagnosed with MG in November 2021, I went through a two-year stretch where my exercise was minimal. I had to give up running, lost 35 pounds, and couldn’t even swim a lap at my worst.
After a difficult crisis last spring, I began taking Hytrulo and felt a significant improvement almost immediately. I returned to running slowly last summer and kept extending my runs and building my stamina. This May, at the tender age of 50, I completed my first-ever marathon.
I don’t share this to boast but rather to remind those of you who may be deeply suffering that improvement is indeed possible. Onwards and upwards.
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I used to run and do heated yoga regularly. My arms and legs felt like jelly afterwards but I otherwise felt great, at least until my thymectomy by full sternotomy in late 2022. I made it through surgery but had a collapsed lung that took a while to heal. I’m only now getting back into physical activity. I find 30min strenuous activity is all I can handle. In addition, I often struggle 2 days after the strenuous activity. I hope to work up to at least 3 miles walking per day but I’m taking it easy because I have learned to respect my body. Exercise is good for so many reasons, I think we should all stick with it but modify as needed to account for out MG limitations. Good luck everyone!
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My exercising is mostly walking. We have a medical facility that has a walking path so we can measure how far we walk.
Right now, I am walking with my daughter-in-law, who had a stroke, so she is only able to go a 1/4 of a mile. By myself, I can do at least a mile. I feel better the more times a week that I walk.
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Started home health physical therapy 2 weeks ago. Told him I might have to stop before completing repetitions. He’s very understanding. I was using my walker at home all of the time. Now I do not need to. My sore knees were a big issue. I have a recumbent bike. Could only do 1 painful minute 2 weeks ago. Can do 5 minutes now with little discomfort. Challenge will be continuing after PT is finished.
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I walk a mile several times a week.
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I was diagnosed over 10 years ago. i can play 1 1/2 hours of tennis or 9 holes of golf but not much left in the tank after that. somedays i do both provided i get a couple of hours rest in between.
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