Tuesday, June 10, 2014

Hot Blooded

Yup, that's me, but it's not nearly as sexy as it sounds in the Foreigner song. Ever since I got ME/CFS 12 years ago, I have been almost constantly too hot. I asked my OB/GYN how on earth I'd know when I went through menopause when life has been one long hot flash for the past 12 years! I have a closet full of heavy sweaters that I never wear anymore. Even on the coldest days of winter, I wear lightweight layers so I can strip down when I get too hot. It's the same with my oldest son, who's had ME/CFS for 10 years. And summer is just torture for me.

Like most people with ME/CFS, all three of us in our family have lower-than-normal body temperatures. 97.5 F is normal for us, and none of us ever get a fever (well, 99 is about the highest "fever" we get), even with a bad infection - it's a joke with our family doctor.  So, I'm not sure how that translates to always feeling overheated. I guess our temperature regulation (part of the autonomous nervous system) is just off.

I can manage during the day, but this too-hot-all-the-time thing really gets to me at night, especially this time of year when the weather outside is heating up. I sleep really well in winter (with the help of meds to correct sleep dysfunction) because at night, we turn the heat way down - ah, heaven! Unfortunately, it's a lot more expensive to cool things down in the summer. Making matters worse, all of our bedrooms are on the second floor, which never cools down as much as the first floor.

Even worse, a few years ago, we bought a new mattress, not knowing that the top layer in it was that memory foam stuff. This has caused two problems - permanent indentations where my husband and I sleep (with a hill between us!) and the mattress holds heat like crazy. I get up in the middle of the night to go to the bathroom, and the spot where I was sleeping is actually hot to the touch.

We have tried all sorts of remedies. When my son started college two years ago in an un-air-conditioned dorm room, we bought a cooling gel mat for him. It works pretty well to keep things cool, but I found it too hard to sleep on. I like a nice soft, cushiony mattress on top, which is why we bought that stupid pillow-top in the first place. So, with the gel mat, I stay cooler but still toss and turn a lot. Last year, I tried a similar gel-cooled pillow. Again, it does stay cool, but it is super-firm, and I sleep best on a soft, fluffy pillow.

This time of year is the worst because it's not quite cool (or dry) enough outside to leave the windows open at night, but it's not all that hot yet, either, so the a/c hardly runs all night, and the air gets warm and stuffy. I have endured some very restless, hot nights lately, waking up feeling exhausted. That really wrecks me - normally, I sleep soundly for 8-9 hours a night (again, thanks to the meds).

So, last night, I gave in and turned the thermostat down a bit more and also switched the fan on the system from automatic to circulation, where the fan will go on periodically, even if the a/c isn't on itself. Much better! Though, I don't want to see the electric bill next month.

Anyone else have these problems? Anything work for you?

Sleepless in Delaware

5 comments:

  1. I understand your problems. My daughter is always overheating. At the risk of being shut out for advertising, I have a business specifically for people with this sort of problem. I make cooling/heating vests and cooling wraps to help keep you cool. My facebook page is https://www.facebook.com/keepyoucool and my etsy shop is at https://www.etsy.com/your/shops/KeepingYouCool. I have only been in business for a month and a half but I am finding that a lot of chronic illness have heat intolerance as a symptom.

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    1. Thanks for the tip, Karen! I have heard of those types of things but never tried them before.

      Thanks!

      Sue

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  2. Hi I am the opposite I an cold/cool most of the time my internal temperature is always around 36.5°c to 37°c but my skin temp is either freezing cold or very hot but most of the time parts of my body are hot while others are cold :(. All winter 5 layers & even not it's 20°c out side I have to wear at least 3 layers.

    I can't even go for a walk because any wind on my exposed skin sends me down hill quickly, shivering shaking sweating for days.

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    1. That sounds rough, Paul. Sorry to hear you are suffering so. I don't know of anything that addresses temperature regulation directly, but if you treat immune dysfunction, endocrine dysfunction, and OI, it will help everything get better! Also, finding and treating underlying infections can help immensely. Wrt to endocrine dysfunction, have you had your thyroid function thoroughly tested? That has a direct effect on temp regulation.

      Stay warm!

      Sue

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  3. Hi yes had full blood tests including thyroid & all normal range. My thyroid test is normal 12.1 it's a pain

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