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Does hot weather worsen your SMA symptoms?
Don’t get me wrong. I prefer the summer season over winter any day of the year. And that is an understatement. However, there has been a lot of heat and humidity this year, which has affected my body, especially my breathing and fatigue. The air has just been so heavy here in southern New England.
Do you notice your symptoms worsening when it’s hot outside? How do you adjust to the summer temperatures, especially the humidity?
Whether it’s a cooling vest, a handheld fan, plenty of shade, or simply knowing when to call it a day, I’d love to hear all your tips and tricks to make summer a little easier.
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6 Replies
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Hi Alyssa! I felt that when I visited Florida back in 2023 for the Cure SMA conference I, too, felt weak, dizzy, and belabored breathing. I had been in FL before but this time I felt…bad. What works for me is limiting time in direct sun and drinking lots of water. I understand that many of us don’t have the luxury of going to the bathroom independently (I don’t) so when I know I’ll be outside for more than 5 hours I’ll wear an adult brief and go in it while I keep drinking that water. It makes a BIG difference in being able to fully enjoy the summer weather. Hope this helps!
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Having to do pee math is definitely a struggle with SMA. I could never go to Florida in the summertime due to the humidity. I would be locked inside my house all season long. We’re actually experiencing worse-than-Florida weather right now in the Northeast. It’s oppressive out there. I wouldn’t last five minutes!
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HI Alyssa! Yea I totally experience issues with hot weather! For me, If it’s hotter than 80f or colder than 60f I start to have issues and then when it’s around 90f I start to get dizzy, lightheaded, and so on. What’s interesting is I’ve noticed my strength gets significantly worse when i’m out in 40f weather or colder. The heat luckily doesn’t affect my strength.
I’d recommend trying a handheld portable fan from amazon if you havent already, some even have misters built into them!
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I know it’s a double-edged sword. The heat affects me in some ways but actually helps others. My strength is never affected in warm weather, but it will affect my dizziness and fatigue (tiredness).
But I hear you. Once the cold weather hits, my muscles decide to hibernate too.
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Growing up in Florida I completely understand what you guys are talking about. The truth is the heat doesn’t affect me nearly as much as the cold. In the summer, I limit how much time I’m outside, especially from 1 – 5 PM. Hydration, shade, misters, all help.
BTW, native Floridians know to stay out of the heat during August. The combination of heat and humidity is brutal.
Nothing helps if it’s below 55°, it feels like my entire system is frozen solid. At that point, I’m bundled up like a burrito. Frustrating part is all the layers I need to keep warm are so heavy that it makes movement… challenging.
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I can’t imagine summertime in Florida. The weathermen here have been saying all summer that we keep getting Florida-like humidity, and I’m just like, “Nope, this is not for me.”
Does it dip below 55° where you are often? I think my body has developed some resistance to the cold, but anything below 45° isn’t for me.
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