Heat intolerance - common in ME/cfs

[ScottTriGuy]

Nope, don't think so, my hands don't turn white / blue when they're cold.

oh wait, just looked at the wiki entry, and this Secondary version may apply as I'm kind of EDS-ish and have hypo-thyroid problems (I think that's why I'm cold), vape, and take lots of medications:

"...Secondary Raynaud's can occur due to a connective tissue disorder, such as scleroderma or lupus, injuries to the hands, prolonged vibration, smoking, thyroid problems, and certain medications..."

 

[Gingergrrl]

I do not tolerate the heat at all and am sure it is b/c of POTS. I run the a/c in my apt pretty much all the time and often put an ice pack on the back of my neck if I get overheated. My last attempt to lie in the sun at the pool (in 2015) resulted in me getting an allergic reaction all over my skin and feeling very nauseous like I was going to pass out (and was only in the sun for about 10-15 min)!

Last weekend I was helping to empty out my storage space (to be continued this weekend ) and the bldg was SO unbearably hot that I wished I had some kind of portable ice pack to put around my neck (is there such a thing)? Something that stays in place on it's own but is also not too heavy to lift? I completely overdid it and by that evening, I had tachycardia, very low blood pressure, and was very nauseous. I could never live in a hot climate and much prefer the cold vs. the heat or sun.

 

[lafarfelue]

I wished I had some kind of portable ice pack to put around my neck (is there such a thing)?

Yes! There are a few different options for that

List of different brands/items for cooling the neck:
https://www.bustle.com/p/the-10-best-cooling-neck-wraps-72638

Example of company dedicated to cooling personal wear:
http://www.polarproducts.com/polarshop/pc/Cooling-Neck-+-Upper-Spine-Wraps-c432.htm
(this company has a range of products for different parts of the body, even for feet! )

 

[kangaSue]

Sudomotor dysfunction, one part of autonomic dysfunction and quite commonly involves having Autonomic Neuropathy or Small fiber Neuropathy.

 

[Gingergrrl]

Yes! There are a few different options for that

List of different brands/items for cooling the neck

Thank you so much @lafarfelue and I bookmarked these links on my computer to read through all of the products later. I am definitely planning to buy some kind of cooling pack or ice pack that you can wear around your neck but do not have to hold it in place.

(this company has a range of products for different parts of the body, even for feet! )

Strangely, my feet actually get cold and I am often wearing fuzzy socks or slipper boots at home even when I have the a/c on and I am hot.

Sudomotor dysfunction, one part of autonomic dysfunction and quite commonly involves having Autonomic Neuropathy or Small fiber Neuropathy.

@kangaSue I just Googled "small fiber neuropathy" and "autonomic neuropathy" and am trying to figure out the difference? Are they the same diagnosis with two different names or two different diagnoses with different symptoms? I don't seem to have peripheral neuropathy (to hands and feet) BUT the EMG that I did in 2016 said that I had "mononeuropathy to the left phrenic nerve to the diaphragm". Would this be similar to "autonomic neuropathy" but to an internal organ? I am curious to learn more about this since my doctor is finding it in a large percentage of his patients (but I have never asked him about it re: my case b/c there were always so many other issues to discuss)!

 

[Thinktank]

Yes! There are a few different options for that

List of different brands/items for cooling the neck:
https://www.bustle.com/p/the-10-best-cooling-neck-wraps-72638

Example of company dedicated to cooling personal wear:
http://www.polarproducts.com/polarshop/pc/Cooling-Neck- -Upper-Spine-Wraps-c432.htm
(this company has a range of products for different parts of the body, even for feet! )

That's exactly what i was looking for, thanks.

 

[Kenshin]

Is heat intolerance a common symptom in ME/cfs?

It's currently very hot in my country and i just can't cope with it. Every year the heat intolerance becomes worse! It's not just the weather but also hot food or a warm shower that makes me feel ill.
One thing that really stands out is the vasodilation in my hands and feet, that in turn worsens my orthostatic intolerance. I also urinate more than normal and my muscles hurt. It's like my muscles are completely drained from any fluid. I just had a cramp in my neck! Magnesium doesnt help and makes the vasodilation worse.
ALso my neck is so stiff and hurts, like someone just hit me in the neck / base of skull.

So, anyone else with really bad heat intolerance?

Im just the same, when I drink water I feel little to no benefit, but a cold shower - instant benefit, doesn't last long though.

The best bet is a portable air conditioner, they are very easy to use but expensive, you can get a good one for £500

 

[AngelM]

Heat sensitivity is definitely an issue for me, and it gets worse every year. I am especially affected by a the combination of heat + humidity — air circulation. The way it feels in NYC when the temp is 95 degrees and all the air is blocked by tall buildings. That is the worst. All the bells and whistles in my body go off and begin to feel nauseated and weak. Because I live in Oklahoma, USA, where the wind truly does “come sweepin’ down the plain,” a strong breeze (we call it gale-force wind) usually mitigates the heat enough in summer that I don’t have to lock myself in the house. If the heat triggers your CFS, make sure you have plenty of fans running summer and winter. Even one of those silly looking “personal fans” can be a life-saver if you find yourself in a building with the AC turned up too far. A frozen washcloth or ice pack on the back of your neck helps, as well. And I don’t know if they make them anymore, but drinking Iced water out of an old-fashioned aluminum tumbler will keep you cool all over. Don’t ask me how. It is a trick my grandmother taught me.

 

[kangaSue]

I just Googled "small fiber neuropathy" and "autonomic neuropathy" and am trying to figure out the difference? Are they the same diagnosis with two different names or two different diagnoses with different symptoms? I don't seem to have peripheral neuropathy (to hands and feet) BUT the EMG that I did in 2016 said that I had "mononeuropathy to the left phrenic nerve to the diaphragm". Would this be similar to "autonomic neuropathy" but to an internal organ? I am curious to learn more about this since my doctor is finding it in a large percentage of his patients (but I have never asked him about it re: my case b/c there were always so many other issues to discuss)!

As I understand it, Small Fiber Neuropathy (SFN) may just affect the nerves in the extremities, either just feet, hands or both, so can be a mononeuropathy restricted to maybe affecting just the feet but it can be a part of polyneuropathy affecting more than one system which is where SFN then gets called Autonomic Neuropathy.

You can have Autonomic Neuropathy where it doesn't neccesarily affect or cause symptoms to the extremities but either way, I see the two terms get used interchangeably in a lot of the literature.

While the phrenic nerves provide exclusive motor innervation to the diaphragm, these nerves also have autonomic fibers and the vagus nerve supplies the motor functions. I expect from that that Autonomic Neuropathy could be a cause of phrenic nerve issues but I've read that a virus can cause paralysis of the phrenic too and don't know how that might translate to vagus nerve signalling function too.

It's quite common to have Autonomic Neuropathy and have a normal Nerve Conduction Study and that is the case for me so maybe it's something different when you have an abnormal EMG result too.

 

[valentinelynx]

Heat is bad. (so why do I live in Arizona? long story. I wish I didn't...) I also hate air conditioners: the noise bothers me terribly. I hate fan noise. I sweat like crazy when I get even slightly overheated. My head turns into a fountain! I also love fresh air (many indoor allergies), and in Tucson in the summer you can't open the windows day or night for months on end (except we get a few breaks when monsoon rains come). I like cold weather. Fond memories of the 3 years we lived at 7,000 feet just outside Salt Lake City. And, one winter day in Tucson (Winter in Tucson is January), about 5 years ago, it was 15 degrees (silly Fahrenheit...), and it felt so good I had to go for a walk!

 

[Gingergrrl]

You can have Autonomic Neuropathy where it doesn't neccesarily affect or cause symptoms to the extremities but either way, I see the two terms get used interchangeably in a lot of the literature.

Thank you for explaining and from my (so far minimal) research, it looks like the two terms are often used interchangeably.

I expect from that that Autonomic Neuropathy could be a cause of phrenic nerve issues but I've read that a virus can cause paralysis of the phrenic too and don't know how that might translate to vagus nerve signalling function too.

I have no idea except that my situation started off viral (with some other triggers, too) and then shifted into autoimmunity. I never had paralysis of the phrenic nerve and after that abnormal EMG/nerve conduction test, my main doctor had me do a "Sniff Test" of the diaphragm which was normal and there was no paralysis. He suspects the 57% functioning of left phrenic nerve (mono-neuropathy) was due to LEMS (even though it was not a single fiber EMG which is the gold standard).

It's quite common to have Autonomic Neuropathy and have a normal Nerve Conduction Study and that is the case for me so maybe it's something different when you have an abnormal EMG result too.

I am now unclear if the abnormality was on the EMG portion or the nerve conduction portion and the Neuro tried very hard to cover his tracks after saying the entire test was "normal" and then we fought to get the results (at that time) which showed it was not normal. I really do not know if I would be considered to have "Autonomic Neuropathy" but my shortness of breath and muscle weakness are completely gone now from my treatments.

 

[Wishful]

Today was really hot, and I tried doing some maintenance work out in the sunshine, but then gave up. I don't think ME/CFS was reducing my physical ability to work in heat. I think it lowers my mental ability to deal with inconveniences, so when the sweat starts dripping, I say 'F*ck it. It's not worth doing this now.' This happens with bugs, tools or materials not being on hand, and other such inconveniences, so it's not just heat intolerance.

 

[AngelM]

I say'F*ck it.

Ya know, I agree with you, Wishful. Although a few years ago, it would never have occurred to me that a diminished cognitive state would affect my ability to perform the most basic physical tasks. But now
I’ve noticed that when I’m
overheated, overly-tired, or in pain, about halfway through the simplest of projects (even those I ordinarily enjoy doing), I lose all motivation and purpose, and end up making a terrible mess of things. Case in point: A month ago while simply trying to replace a cheap plastic toilet seat, I became very uncomfortable, and rather than stop and think it through, I began hitting the toilet seat with a hammer. As a result, I not only shattered an expensive porcelain toilet, I flooded the bathroom, cut my hand on a piece of porcelain, and ended up in the ER with seven stitches. I would have been better off if I’d just said F*ck it!

It’s embarrassing discussing this out loud. But before CFS, I was never a klutz. In fact, I always prided myself on being organized and patient. There is an old saying: “Going about (fill in the blank) like killing snakes,” which I think means—without a plan, or without thinking. But that is me—post ME/CFS. Going about my life killing snakes!

 

[taniaaust1]

Yes, it makes my POTS worst. Heat intollerence is part of the Canadian ME/CFS diagnostic criteria in one of their areas.

 

[taniaaust1]

Today was really hot, and I tried doing some maintenance work out in the sunshine, but then gave up. I don't think ME/CFS was reducing my physical ability to work in heat. I think it lowers my mental ability to deal with inconveniences, so when the sweat starts dripping, I say 'F*ck it. It's not worth doing this now.' This happens with bugs, tools or materials not being on hand, and other such inconveniences, so it's not just heat intolerance.

no not for me, I have severly low blood volume due to the ME and the POTS it causes.. I can often require an IV drip when it gets too hot cause I collapse. Most with ME do have dysautonomia so for most of us it is not a mental thing.

 

[Wishful]

@AngelM , I too have made bad judgements due to ME/CFS. I think I've gotten better about being aware of such situations and avoiding them. For example, sometimes I plan to drive somewhere, but by the time I'm ready to go, I realize that my diminished cognitive state (good term!) that day would impair my driving significantly, so I decide that it's not important enough to drive that day.

There's an earlier thread on embarrassing accidents that ME/CFS victims have shared, so I guess we do suffer more accidents than average.

 

[Gingergrrl]

List of different brands/items for cooling the neck:
https://www.bustle.com/p/the-10-best-cooling-neck-wraps-72638

@lafarfelue Thank you again for posting that list and I ordered #7 (the "ice bandana") on Amazon last night and will let you guys know how it works!

Most with ME do have dysautonomia so for most of us it is not a mental thing.

I agree, Tania, and for me the reactions to heat/sun are due to POTS and MCAS and there is no mental component to the reaction (in my case).

 

[hmnr asg]

Heat is my worst trigger. There were times when i have been caught outside in the summer heat in Japan when i used to travel there for my work back in the day. I remember i would desperately try to find a mall or a store with AC to run into because i knew i could crash very hard and pretty quick. And crashing in a foreign country is not fun.
ps summers in Tokyo are a nightmare even if you dont have CFS (super humid and hot)

 

[Wishful]

I wonder if heat intolerance is linked to the subgroup that suffers from physical limitations (strength or endurance). I don't have those physical limitations or the heat intolerance. Does anyone here have one or the other but not both? If it is linked, that might be useful for the researchers.

 

[hmnr asg]

I wonder if heat intolerance is linked to the subgroup that suffers from physical limitations (strength or endurance). I don't have those physical limitations or the heat intolerance. Does anyone here have one or the other but not both? If it is linked, that might be useful for the researchers.

sorry if you have explained this before, but if you have no physical limitations, does that mean you can run and jog and hike etc with no PEM? and if yes, how can you have CFS?