Heat and MG
I had a thymectomy to remove a thymoma back in April 2021 and have been in remission for nearly three years. I regularly use the steam room and sauna at my local gym and am pleased to say that extreme heat does not bother me at all. I think that removal of my thymus gland and the thymoma have played a significant part in my recovery
cmcdar
Absolutely! I'm sorry you had to join our "club", but also glad to have you. There is a lot to learn about MG, I've been diagnosed for over 13 years, but I'm still learning a lot from others here. I hope you will stay with us & keep on learning.
For me, winter is months of misery, even when we lived in Palm Bay, Florida, which only produced a few days at 32°F or below. Even fall, spring, & summer when nights are cool, I'm cold.
When everyone else is either hot & perspiring or comfortable, I'm usually quite cold, especially in air conditioned spaces. When I am cold for very long, my body gets very achy & I feel my chill is to the bone. I feel like I'm ill, weak & achy all over. I know it's nuts, but it's so bad sometimes, I'm in tears.
When I'm that cold it takes an hour or more under 2 or more blankets, heating pad, & head covered so my exhalation also warms my space (until I have to surface for fresh air!), to finally warm up. I ask others if they are cold, the answer is usually, "No!"
They try, but can't understand why. But it's so bad, I believe, because I also have a low thyroid. Heat & cold is a problem that accompanies that disease, also. You might say, I have a double whammy!
Except for extremely high temperatures or humidity, I do much better in the heat.
We all respond differently to different symptoms & treatments. Do what works best for you.
Best wishes! - Janice (Myasthenia-Gravis.com Team)My husband does not tolerate the heat well. He was diagnosed in May, 2019. He had a massive crisis in June, 2019. It was actually on our 52nd anniversary trip. He was on a ventilator for 8 days. Took him 18 months to breathe normally again. The heat makes him feel weak and tired. He struggles to get out of a chair and is exhausted by taking a shower. He can't tolerate Mestinone so he takes Prednisone 3 days a week. That doesn't really seem to work. He stays inside during these heat days we are having in FL right now. He refuses to move to another state so we live with the air conditioning blasting all day. I am dressed in winter garb just to keep warm... But, somehow we are managing things.
I can understand that. Not sure where you live in Florida, we lived in Palm Bay which usually wasn't real humid most of the time, but places away from the coast get very humid.
I shower with the shower curtain partially open. If I close it, I can't tolerate it long. I feel like I can't breathe. I also get weak in a hurry, so I understand why he needs the air. In fact, even in winter & even with my cold intolerance, I use a fan so the room isn't too stuffy to me. I may sleep under a few blankets, but I have moving air to breathe.
Best wishes! - Janice (Myasthenia-Gravis.com Team)
Member1363 - I'm glad to hear you're doing so well since your thymectomy. I didn't have one, but unless it's stuffy or really humid, I tolerate heat pretty well. However, the cold causes me much distress & discomfort.
I hope you continue to do well! Best wishes! - Janice (Myasthenia-Gravis.com site moderator)
Hi, I'm newly diagnosed and am just learning about this disease. You said that you have terrible issues with cold. Could you elaborate about symptoms? Thanks.
