The heat definitely affects me in a negative way. It drains me too.

Your autonomic nervous system tells your body how to react to heat and cool itself and with CFS all that is outta whack so I suppose it just goes along with it. Not much scientific theory there but at least you know that it is happening to some of the rest of us as well. I have noticed it more this year than any other but I think it is because this is my third summer with it and before this year the fibro pain kept me pretty much housebound. And last year, I avoided the heat as often as I could and didn't try to do things. This summer I have tried to do a little bit more and can tell everytime I try to do anything in the middle of the day (90s and 100s), I am drained and generally down for the next day!

Dear CandiF,
The heat is torture on most of us with this illness. My doctor told me it causes inflammation in the brain and spinal cord. I become very sick in the heat, not just drained of energy. I become sick to my stomach, extremely weak, and in an almost paralyzed state. I zone out completely as well.

Another reason is (especially in a hot tub), the immune system gets "turned on" when the water reaches a certain temperature. But of course it is a malfunctioning immune system that doesn't kill what it is supposed to yet doesn't really turn off as it is supposed to either. The hot water kicks it up even more. I was told to take tepid baths. This helps prevent the complete energy drain.

I stay indoors in the Air Conditioning. If you have to be outside, they make cooling vests that can help. They are expensive though.

I know I can't wait for the cooler weather to get here.

Wishing you cooler days ahead!

I know about heat since I live in Florida. I definitely stay in the air-conditioning even though it is confining. I made the mistake of taking my granddaughter to Disney for 4 days this summer thinking if I rode in a cart I would be okay, but when I got home I had a major crash (almost totally bedridden) for weeks. I am now on my feet and won't do that again.
Everyone be VERY CAREFUL in the heat!

Thanks for the help friends! I appreciate it! It was so nice to understand the reason my body reacts the way it does and it is nice to know I'm not alone in this.

Thanks again! I appreciate you taking the time to answer!!

Absolutely the heat is just plain mean to those of us who suffer with CFS. Before becoming sick,I was a sun WORSHIPPER!! I lived in Florida for ten years and spent almost every day "catching rays". I realize now that I'm older that all that sun was no good for me, but at the time....I was just having the time of my life! I love the ocean.

Anyway, since CFS I can tell you that absolutely.....my body has changed in it's response to heat. I'm totally intolerant of it. I become sick, nausteated, my hands and feet swell and I feel faint. It's no joke! It's a truely frightening experience. With the temps in the ninetees the last three weeks and me crashing for the last three weeks, I can't help but wonder how much the inability to avoid the heat has contributed to how sick I am right now!!

I KNOW I can't be in the heat. It totally sucks the life out of me.

Stay coooooool!!!

I'm glad you posted this. I have always been one of those people that love the heat, the hotter, the better. I've noticed in the last 4 or so years, the heat really kicks my butt, but I never connected it to the rest of my symptoms.
I'm waiting for tests to come back, but the more I read on here, the more I'm convinced that this is actually what I have.
It's so nice to know you're not alone in this. I thank you all for allowing to feel like my complaints are valid.

My trick is to let the water run cool at the end of a shower or bath--that seems to help a lot as even a hot shower could do me in. I also have to be careful outside. Not only do I flare up, but the sun gives me headaches. Just be careful if you're avoiding the sun to make sure you're getting enough vit d!

For YEARS I ran a constant fever of 99.9. (My usual temp was 98.0)

Overheating was a HUGE no-no for me. And still is. I don't perspire like a body should, so I overheat quickly.

If you haven't monitored your internal body temp, you might start.

And when you're doing even simple things like any attempt at housecleaning, and you start to feel the least bit warm, STOP. Take breaks before you feel you need them, because by the time you feel you need one, it's too late.

I lived on a farm my entire life. Outside from sun up to sun down. A couple of years ago I was outside in the extreme heat for just minutes. Got a instant headache, dizzy, then so wiped out I HAD to sit down all in a manner of minutes. Then had to sleep for hours to get my strength back. From then I hade these symptoms all of time in heat. Excpet when I was swimming or boating. My doctor ordered a tilt test and a heat test (can't remember the exact name for this test) had to smear stuff all over me and sit in a very hot steamy room. The results of these two test were that my autotomic nerve system was dysfunctional.

Basicaly my body heats up too fast and too much in heat.

Now when i am in the heat I always wear a straw hat, sit in the shade or carry an umbrella, whenever I can put a fan on me put a fan on me, drink a lot of cold water, and take a lot of inside breaks.

Hope this is healthful and that you are doing better :D

Heat does the same to me!!!!!!!!!!!!

Obviously we all need a nice retreat....someplace to go in the heat of summer....I'll call Oprah!!! LOL.....

Stay coooooooooool!

Wow! I definitely don't feel alone in this anymore. Thanks so much!!!

I was diagnosed with dysautonomia by my heart doctor.
Intolerance to heat is one of the major symptoms because your body literally can't cool itself like it should. This is because the autonomic nervous system gets out of whack.
Heart rate, blood pressure, digestion, etc. are all affected.
He told me that people with dysautonomia are considered to have the same quality of life as someone with congestive heart failure. Yikes!
I try to be positive and ignore that comment by my doctor but there are days that I can't function at all.

Thanks for asking this question - I've wondered this myself. Yes, I find high temps to be more of a problem. I also notice that my skin is much more sensitive to sun. Thankfully, here in Seattle we don't usually see too much of either.