Tagged: exercise, mental health, Myasthenia gravis
- This topic has 10 replies, 9 voices, and was last updated 1 year ago by Deborah A Dortzbach.
June 8, 2021 at 4:17 pm #16304Michelle GonzabaParticipant
Before MG, I was never a huge fan of working out. I could be pretty lazy and almost always preferred chilling out on the couch. But after going through some hard years after my MG diagnosis, I gained a new appreciation for all types of exercise.
In one of my recent columns, I talk about how exercise has become more than just a workout. It has made me incredibly grateful for what I can still do.
Have you been able to do any type of workout since your diagnosis? Mentally, how has it made you feel? Has the meaning of “exercise” changed for you since your diagnosis?
July 10, 2021 at 12:52 am #16445Rick FedermannParticipant
I don’t work out, but I do work on home projects that require physical exertion. For example, I am currently moving piles of landscaping rock, digging out a walkway and laying concrete pavers, and installing a fence gate.
When I experienced the onset of MG, I was unable to do more than an hour of physical labor without being punished for the remainder of the day. Since then, I’ve learned techniques that allow me to work hard for hours.
- I don’t do repetitive tasks too long. For my current project, I lift and carry rocks for 30 minutes, then take a short break, work on the fence for about 30 minutes, take a short break, shovel for a short while, take a break, … , and continue that cycle. It seems that this approach flies under the radar, MG-wise. I don’t do the same task long enough for MG to notice it and trigger symptoms.
- In my case, MG symptoms often follow exertion, rather than during the exertion. So I don’t give it a chance to disrupt me. I limit breaks to a max of 15 minutes, even when I want to take longer breaks.
- Getting hot from exertion triggers symptoms. I’ve learned that when I start feeling hot, drinking ice water prevents or reduces MG symptoms. My impression is that the sudden internal coolness is why this works.
- Immediately after exertion I take a shower. It’s not the shower that helps, but rather the overall coolness when drying off.
I’ve also learned that the ice water and shower techniques are immediately restorative on days when MG randomly knocks me down. It’s a hassle on bad-MG days to take 2-3 showers, but it sure beats feeling bad all day.
Of course, MG randomness sometimes still defeats these techniques. But overall, they have allowed me to greatly extend my ability to engage in physical exertion.
July 12, 2021 at 5:29 pm #16458Michelle GonzabaParticipant
Rick, this is a great list of tips! My MG also gets worse in hotter weather. Cold water and cold showers have also helped me perk up after feeling weak. Also, your outdoor project sounds exhausting but totally worth it.
Anyone with MG can benefit from your advice, so thank you for sharing!
May 25, 2022 at 9:37 pm #19242BARBARA f BARNESParticipant
I’ve always been active but between COVID isolation & MG , I had gained 30 pounds & lost a lot of endurance. I too am better in the morning so I’ve very gradually increased my walking. This winter it was total treadmill. I do most in the mornings. I walk until I start getting hot. I have 2 fans on me & keep water close. I have gradually increased to 3 miles. Then the rest is daily walking. Shopping is a good way to add mileage. Stores are cooler & I use the cart for balance & walk up & down every aisle. Determination has always been my strong point. Good luck everyone. I do like the idea of cool showers. I will add extras this summer.
May 25, 2022 at 6:20 pm #19239Andy CoyneParticipant
I am diagnosed with ocular MG.
To some extent the time of day plays a part! I can walk around a mile or so in the morning without difficulty most mornings. By mid afternoon I’m getting a bit breathless over 2-300 yards by late evening a 15 feet round trip can leave me struggling with breathlessness and a high heart rate. If I overdo the morning walk it can take me out for the rest of the day.
May 25, 2022 at 7:36 pm #19240LISA MICHELE HALLParticipant
I have seronegative MG and I am in constant pain in my upper legs and upper arms. I do a exercise routine every morning and this starts my day. I walk around my house making a few laps. This helps me greatly. I was used to riding my bike, hiking and swimming before MG 1 year anniversary this July. I am not able to do any biking, hiking or swimming yet I am too weak in my legs. I am grateful I can do my own marketing and shopping this is where I get most of my exercise walking around the store. My goal is to be able to walk a mile.
May 25, 2022 at 10:14 pm #19243NormParticipant
I do about 20 minutes of stretching and strengthening exercises most mornings. I skip them if I’m going got cut the grass, etc..
Because of MG and arthritis I can no longer do aerobics. I used to think I could always fight my way back to vigor.
I’m with Rick on the effects of ice water. It, and other iced drinks, knock down my dysphagia.
May 25, 2022 at 10:17 pm #19244Mark ShearParticipant
I am going to try Rick’s great advice for techniques to use. Before the MG, I never understood fatigue and I am still trying to wrap my head around it. I have the same symptoms the others who have commented said such as doing better in the morning, can only exert so much at a time and the randomness of fatigue some times.
I feel like I am becoming lazier so I try to do as much as possible in the mornings before fatigue gets me. I feel like I should push it, ignore it but it is sometimes hard to do.
I am now taking Vyvgart (infusion #3) which I am starting to see incremental improvement so I have been able to do a bit more. I try to pace myself and plan rests the day before, after or during a big activity day.
Hoping to have the energy again to get back to normal activities and worried about knowing the difference between actual fatigue and feeling lazy.
May 25, 2022 at 10:28 pm #19245EDWARD CLAGHORNParticipant
I am still able to exercise regularly and cycle 3-4 times a week in the warm weather. I have found that after a long bike ride my legs and arms are sore and I get cramps in my legs and hands later in the day. I have to pay attention to the weather as the heat affects me more than before, even with proper hydration. In the cold weather it takes me a very long time to loosen up. It is still great to exercise and be outside with friends. I just take it all easier and slower than pre MG.
May 27, 2022 at 5:01 pm #19252Andy CoyneParticipant
I found this after a bit of research
Should myasthenia gravis patients undertake an exercise program? Different sources provide different answers. The very general answer is — exercise is helpful for people with MG, but patients should not embark on exercise programs that require maximum output and produce weakness. Exercise should be done in a way that stops short of muscle fatigue, and this point will vary from person to person depending on age, overall fitness level, MG symptoms and other factors.
May 27, 2022 at 8:57 pm #19254Deborah A DortzbachParticipant
Exercise is essential and now becoming routine for me, but responses are still sometimes unpredictable and that can be challenging. Learning to plan for and interpret unpredictability is part of the “adventure” and acceptance of this challenging condition–but that is exactly what makes MG–well, never boring! I also have a systemic rheumatic disease–ankylosing spondylitis, so it is particularly important to keep moving. I have found swimming the width of a pool that is heated to be really my sweet spot. It might sound strange to enjoy warm water–but it helps the joints. Enjoying swimming the width makes swimming not too challenging, and I just keep doing it at a pace that makes sense for that day. When I just really don’t want to go exercise, I force myself to consider it “like medicine” because, actually, afterward, I really do feel much, much better–although often more tired. But then, who says an afternoon nap after a reasonable swim isn’t a good thing with MG?
June 29, 2022 at 7:40 pm #19444Debbie ButlerParticipant
Someone posted this on a Facebook Myasthenia group. These U Tube videos were put together by Students at the University of Texas.
I attend an Osteo/Bone exercise twice a week and a lot of these exercises are what we do.
May 18, 2023 at 8:27 am #21096LISA MICHELE HALLParticipant
I love to dance…I could do ballet at the ripe old age of 67 (not bad for 67 old lady)..Then “MG” hit me in 2021…I was never one for structure with an exercise program, Now I make myself exercise because it helps me be stronger, Unless I overdo it. I dance the best I can. there are things I cannot do I am trying to make an exercise routine built for me. It’s VERY difficult, my legs mainly hurt and are EXTREMELY weak. Anybody out there have weakness in there legs?
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