woman drinking ice cold water myasthenia gravis and heat

Tips for the Summer Heat

Last updated: July 2022

The heat is not our friend. Not with myasthenia gravis at least. It may send us spiraling downhill fast, and it does for many including myself.

It actually took me awhile to come to terms with that. Heat is so natural and there can be so many benefits as well. Jacuzzis and hot steam showers are super relaxing. Saunas are a great way to detox and being in the sun soaking up the vitamin D can be beneficial too.

Heat is a trigger

Before my symptoms were well managed, all of the things above would send me into a flare though. I remember taking a trip to a day spa that ended up being less than relaxing.

I spent 15 minutes in the steam room and that was all it took to make my legs weak, my vision double, and my breathing difficult. I didn’t think that such a short amount of time could do so much harm but now I know better. I’ve come a long way since then and have learned from experience what works for me when it comes to myasthenia gravis and the heat.

From personal experience, I know that if I’m at all symptomatic, I need to avoid extreme heat as much as possible. That means staying inside in the air conditioning or keeping cool by a fan. Even when I am well controlled, heat is one of the triggers that can bring symptoms on quickly and sometimes, without warning.

Using an ice vest

There are times, however, when I simply can’t avoid the heat. During these times, I have things that I won’t venture outside without. One of these things is an ice vest. I didn’t even know about them until a friend with multiple sclerosis told me about theirs.

They have insertable ice packs which Velcro inside the vest to keep you cool. This one thing alone has been a game changer for me and makes me feel so much more comfortable when I have to face the heat head on. It’s extremely helpful at keeping me cool when I have to run to the store or when I’ve wanted to attend one of my son’s baseball games.

Ice water and insulated cups

The next thing I’ve learned to take with me is ice water in an insulated cup and extra ice in a cooler.

I’ve learned that when I keep my internal temperature down by drinking ice water, slushees or smoothies, or eating popsicles, it can help tremendously at preventing symptoms from creeping on. It also helps for me to stay extremely hydrated.

Be near a body of water

The last thing I try to do when it comes to heat (and vacations) is to ensure I will be by a body of water. I can swim or float all day long in a pool, river, or a lake while everyone else lays out and plays in the sun. Water has become a total safety net and security blanket for me.

While sometimes the only thing I can do is stay inside to stay cool, I’ve learned there are some things that can help me face the heat without the fear of going into a flare. As always, I’m careful to listen to my body and to pay attention to when I think I might be reaching my limits.

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