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Heat intolerance
As some of you know, I had shoulder surgery last week and am still in a sling. My grandmother has been in town to help me at home and drive me to and from physical therapy, which I am currently going to three times a week. Most days, I have been carrying minimal things with me when I leave my home which means my purse usually stays at home. Yesterday I left my purse at home and realized when I got home that I had locked myself out of the house (I thought my grandmother had a key with her, but apparently she did not). Anyway, I ended up sitting outside for an hour with some groceries waiting for my roommate to come home and let me in.
I don’t do too well sitting in the direct sun for long periods of time especially without water. Most of the time, I’m able to manage and accommodate myself in the heat or have to take short breaks in the AC. I began to get a “stress rash” on my chest and arms which is typical for me since I have some neuropathy in my small fiber nerves and don’t sweat much. Before IVIG treatments, my heat intolerance was so severe, I would almost pass out if I stayed outside too long.
Does anyone else experience heat intolerance?
If so, what tips and tricks do you use? Or do you simply avoid being in the sun?
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4 Replies
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I’m the queen of heat intolerance. I marvel at how some people absolutely thrive in it because I never have. On beautiful hot summer days, I usually enjoy the weather before 10 am and after 4 pm. If I can get to the ocean, then it’s always much more enjoyable with the cool ocean breeze.
Then, adding LEMS to the entire equation, I spend a lot of time inside in Air Conditioning whenever Maine has a heat wave because it will cause my LEMS to flare up if I don’t.
I’ve noticed lately that I’ve been getting incredibly flushed whenever it’s warm out and I don’t know why. That’s new for me.
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Dawn,
Before my diagnosis and before having dysautonomia, I was a BIG sun lover. I could sit in the sun and “tan” by the beach or pool all weekend. That was definitely a hard thing to learn I was no longer able to do. With IVIG, I’m able to enjoy the sun a little more than I could before getting it. I also definitely know to set time limits if I decide to go to the beach during peak hours, I know I can only stay for a little bit and will need a nap.
I always get pretty flushed in the heat. I’ve been told it has something to do with dysautonomia.
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I have had an issue with heat intolerance for a long time now. Due to Lupus and LEMS, I have to stay out of the sun.When I do go out, I have a big floppy hat to wear and sun clothing made by Columbia Brand. I also freeze a bottle of spring water to take with me every time I leave the house. This helps while watching TV and other activities when the heat issue arises indoors. Another tip is to wet a face cloth with some cool (not icy) and wipe your face, neck and arms. It will reduce the symptoms caused from over heating. Hope this helps!!!
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Lupie Linda,
Thanks for the tips! I also have a couple of big floppy hats I use and have a large umbrella I bring to the beach which helps alot!
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