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Lunarr

356d

I've found my heat intolerance has worsened over the last few years. I used to be able to tolerate 71 F comfortably but now if it's not under that temperature I get super symptomatic. Anyone else in the same boat? Any idea as to why this happens other than just the illness shifting/changing??

Top reply
    • Mar0113

      86d

      My temp is never stable. I'm always too hot or too cold and there are times I'm so cold I can't feel my toes or fingers.

    • Mar0113

      86d

      My temp is never stable. I'm always too hot or too cold and there are times I'm so cold I can't feel my toes or fingers.

    • 55isMe

      299d

      similar here. Mine started with tremor, then heart meds trial caused more issues and started the last 30 years of migraines and CF followed by Fibro. Imitrex injections helped clear the CF & Fibro. Breast Cancer Chemo (8 years later) helped clear the migraines. Single Lupron "monthly" shot brought migraines back at full force. Last 4 years has been POTS/dysautonomia, another breast cancer. I did physical therapy (eye and relaxation) for the 3x migraines after surgery. I might be speaking too soon, but it seems like POTS is significantly lifting. Still a lot of the dysautonomia but able to stsnd more than 5 minutes. Lot of the progress appears to be from following a lot of others suggestions. #1) dont overdo. #2) small exposures. So my suggestion was just cooling and warming of one hand. For me and migraines, i started with a make-up round (3" diameter), used just that much area against a temple area. After about a month or 2, i added the 2nd temple. I can now do the whole face.

    • 55isMe

      301d

      Plus useful links at the bottom

      • Lunarr

        301d

        @55isMe Thank you for the ideas and link! I've been sick for 5 years now so I've already tried it all and am very educated as to what's going on in my body (central sensitization and all that business). I think it's probably just a combo of acclimation and my nervous system throwing a fit about normal stimulus like usual. I have dysautonomia, ME/CFS, and fibro so it's always a tossup as to what is causing what, and at this point it's probably a combo of them all haha Also I'm in physical therapy at the moment doing something similar to what you're discussing (exposure therapy, I guess??) to help with my dizziness so I could see it maybe helping with the temp intolerance as well but it cause me to flare so badly that I'd rather not put that to the test

    • 55isMe

      301d

      https://www.rareadvocacymovement.com/post/thermoregulation-issues-in-dysautonomia

    • 55isMe

      301d

      Kind of like some of us with POTS have increased our standing ability by repetitive short standing and variations of upright.

    • 55isMe

      301d

      Just guessing but a couple ideas. Try icing or cooling down parts of your body, like your left hand. Then switch to heat for about 10% of that time. Then back to cold. It could help you find a partial solution and maybe help your body start working because of experiencing the fluctuations but on a limited scale.

    • 55isMe

      301d

      Fyi, my niece found a rechargeable fan that you wear abound you neck. She loves it. She has Narcolepsy. For me, its a NO. It excites my tremor too much.

      • Lunarr

        301d

        @55isMe Hello!! Thank you for your reply, I've had a rechargable neck fan myself for years now and it's very helpful. However, it's more of a bandaid than a solution as it doesn't really help me when the room temp is over a certain number

    • HisWillNotMine

      346d

      It could be that your body has gotten use to the 71°F temp. Especially if your using ac. I am extremely heat intolerant (I also have Erythromelalgia) and I'm not comfortable unless it's 63°F. It's miserable bc the only place I can have it that cool is in my house and maybe my car. I try to keep my house closer to 65-67 during the day. Sometimes having no air blowing with it being 63° in my house feels warmer than air blowing and it being 67°. Ambient air makes a big difference

      • Lunarr

        304d

        @HisWillNotMine Sorry to hear we're in the same boat. I definitely agree about the ambient air thing, ceiling fans have been my lifesaver at times and I find it uncomfortable without one/moving air

    • 55isMe

      356d

      No idea as to WHY. Heat intolerance is definitely a possibility with autonomic dysfunction. It definitely is for me. I know that i used to love 85-90 degrees. Itis one of the reasons that i dont have air conditioning in my house. I've been too hot and too cold within minutes of each other, so it really isnt the temperature, I think it is position. Fan helps me. I have several small usb rechargeable fabs. So i can put them anywhere, anytime, and light breeze, effective but not overwhelming. Ideas: like mentioned earlier, plus: Shower and bath is a great way to cool down. Swimming is too much of a shock for me, so i start in the shower, start out warm and then cooler, than bath in that cooler water for another few minutes. Anything that causes evaporation from your skin will help. Wet washcloth along neck, especially back of neck. Shorter hair style. Menthol, like icy hot, on forehead. I highly suggest finding a work from home job. It has been a lifesaver for me. Im sure without that, i would have had to file for disability. Even without airconditioning, at home, i can take immediate remedial actions to stop the snowball effect.

      • 55isMe

        346d

        @55isMe My doctor agrees it is just another facet of dysautonomia.

    • Lunarr

      356d

      I know Alike Wisdom, I was the user that commented that on Muffinman's post, but thank you for trying lol

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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One user mentioned that they have heat intolerance due to their dysautonomia, which has worsened over the last year. They suggested that you might be sensitive to heat as well and recommended hydrating properly, using a rechargeable neck fan, moisture-wicking shirts, and microfiber towels soaked in cold water around your neck to help tolerate the heat better. Keeping to the shade and having ready access to AC are also good practices.

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