Cause of heat sensitivity in CFS?

[Davsey27]

Hello guys and gals,

Curious if anyone knows what may cause sensitivity to heat in Cfs and perhaps what one can do to build tolerance to the 80s and 90s?

Thank you

 

[Pearshaped]

hi, do you have POTS as well? if so,
thats why(blood vessels become"wide"(sorry cant find the right word)and your BP drops.
what helps me a bit:
a small fan
ice packs
cold water

 

[Davsey27]

glad to see that’s working for you.not sure if I have pots but seems like Cfs

Cold water outdoors and ice packs that sounds like an idea

 

[Thinktank]

I have really bad heat intolerance, it makes me feel incredibly sick.
Heat is one of my dysautonomia triggers but a tilt table test was negative for POTS.

This summer is going to be as hot as last year, i'm unsure how i'm going to survive this one!

See my thread from last year, lots of us suffer from heat intolerance:
https://forums.phoenixrising.me/threads/heat-intolerance-common-in-me-cfs.60879/

 

[valentinelynx]

Well, don't move to Arizona! Seriously, look into cooling vests. There are various types, from those that use evaporating water or ice packsl to "phase change vests" that use a chemical that changes phase near room temperature and pulls in heat to do so, thereby cooling you down, to electric powered ones. Here's an example of the phase change type on Amazon (US).

 

[Davsey27]

Appreciate the advice

I’m interested in knowing what the root
cause of heat sensitivity after having Cfs is whether it is herpes viruses or something else?

I was tolerating 90 degrees before CFS

 

[sue1234]

I was tolerating 90s weather before this, too. I think it is intolerable now because of lack of sweating for me.

 

[Davsey27]

I was tolerating 90s weather before this, too. I think it is intolerable now because of lack of sweating for me.

Interesting I sweat a lot and if it’s in the 70 to low 80s range it seems to help Cfs

 

[ahmo]

@Davsey27 My heat intolerance was very bad for years. I eventually began using hypothalamus glandular, and that was v helpful. I stopped hyperventilating every time I went out.

I also had very bad sun intolerance from the time I collapsed w/ ME. Many years later I learned about pyroluria, took the right supps, and the intense discomfort from any sun exposure stopped. Don't know if this is related to heat intolerance. good luck.

A questionnaire re pyroluria. When I took it the first time, wasn't very high score. I took it again, answering for things that had bothered me in past, and scored in range. Never tested for it, just started on the supps.



http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria

 

[Thinktank]

@Davsey27 My heat intolerance was very bad for years. I eventually began using hypothalamus glandular, and that was v helpful. I stopped hyperventilating every time I went out.

How soon did you notice the positive effects of the hypothalamus extract?

 

[vision blue]

One possible answer is that once we have CFS, mainting homeostasis for lots of things, inclduing temeperature, becomes much harder. CFS is largely a neural disease and all those bits have to work right to get proper autonomic function, which is how we achieve homeostasis.

not very satisfactory thought since that predicuts any extreme would be difficult and its definitely heat in particular that 's a trigger. But even in MS, there is no good satisfying explanation for why heat makes demyleniated neurons worse.

more hand waiving is that seems to go along with inflammation. maybe heat triggers mast cells and floods of inflammtion. Any mast cell issues? (sorry i've got mast cell on the brain right now).

i have heat issues too- especially sun though for me. Took me so long to realize that that i wasn't feeeling hot from the sun, but sick. and took me just as long to realized that everyone wasn't feeling this - i thought was normal...

have you looked for SSA antibodies? but that's neither necessary nor sufficient and might not even go along with the feeling sick anyway.