Heat intolerance - common in ME/cfs

[Thinktank]

Dunno what's going on but i can't tolerate any type of heat anymore on my upper body when lying down in bed.
I have a summer blanket which i use to cover my legs. From my waist up i use just a thin sheet.
Whilst my wife is sleeping next to me all curled up in a thick winter blanket.

 

[Likaloha]

Have always had heat issues but now wear shorts year round...even in winter indoors in coldest winter.. Haven't worn a winter coat in coldest months for a couple years... It does get cold here in Midwest usa but not for me... Have been told I had reynauds syndrome/disease which can make extremities feel colder, etc but heat exacerbates my symptoms of fatigue, ' breathing' issues, etc... I wish we had less humidity!

 

[Thinktank]

It's been 4 years sincei started this thread and my heat intolerance has become worse each passing year. I still have not figured out how to deal with it except avoiding heat as much as possible including hot showers.

When it's hot or even slightly warm i become weak, feel like i have the flu, headache, thick brain fog, POTS flares up and breathing becomes difficult. One very noticable thing that happens is painful vasodilatation in my arms, the bloodvessels are so full that they really hurt.

Has anyone here found a solution or at least improved the intolerance to heat?

 

[Woof!]

A bit of salt is helpful for my dysautonomia but it doesn't do much in terms of heat intolerance.
I have increased my salt intake and lowered my fluid intake as i don't sweat much. High fluid intake makes me sick, no idea why.

@Thinktank, thank you for bringing back this thread. Back in 2018, you wrote the above, which brought up the following 2 questions...

Are you avoiding all sodas and fruit juices and other blood-sugar-shocking drinks? I can only imagine how harmful they would be to you.

Also, have you ever tried drinking through a straw? The neat thing about drinking water solely through straws is: your body self-regulates better, without extremes. Just because you don't tend to sweat much (me neither) doesn't mean keeping hydrated isn't extremely important, and using a straw (reusable whenever possible) really helps.

Like much of us with ME/CFS, I can't tolerate much heat or cold. When it's in the 50s-75 F here, I do good as long as the humidity is low. Any humidity or temps higher than this, and I begin to struggle. The higher the temp, the sooner I'm inside with fans and A/C.

 

[kangaSue]

Has anyone here found a solution or at least improved the intolerance to heat?

Are you getting sufficient taurine from your diet, or supplementing it?
I'm diagnosed with idiopathic autonomic neuropathy and had very little, if any, sweat response to heat (sudomotor dysfunction), but I had also inadvertantly managed to cut taurine out of my diet and supplementing it has improved my heat intolerance and I am now sweating again in response to heat.