Heat intolerance - common in ME/cfs

[Wishful]

Yes, I can hike and bike for hours (always hated running) without triggering PEM. Physical activities that I'm not accustomed to, such as ladder climbing or using my arms in an overhead manner, can trigger PEM after only a few minutes of activity (with a 24 hr delay before PEM symptoms). That definitely qualifies as post-exertional malaise. Cognitive activities, such as driving or socializing also triggers PEM. I also have baseline malaise, mental lethargy, and other ME/CFS symptoms, so I do qualify according to the Canadian or International criteria.

It's just a different sub-group of ME/CFS. My guess is that the usual physical limitations are just a common secondary effect of the core malfunction of ME/CFS.

 

[Wishful]

I was thinking more about this, and came up with a hypothesis. The physical limitations that seem common to ME/CFS likely involve mitochondrial dysfunction, and could likely involve problems with mtDNA gene expression. I read somewhere that cerebral mtDNA is not identical to regular mtDNA. That means that a sub-group could have an mtDNA defect that causes ME/CFS in brain cells but doesn't affect cells outside the brain. This seems to match my observed symptoms: neurological ME symptoms due to microglial dysfunction, but not affecting muscle cells.

I did have type IV food sensitivity at the start of my ME, which involves non-cerebral cells. However, that could be explained by microglial cytokines crossing the BBB, sensitizing the t-cells.

Any feedback before I send this hypothesis to OMF? Maybe they can easily check whether those in the non-physical-limitation subgroup have a common difference between cerebral and regular mtDNA.

 

[perrier]

Not me, I am the opposite: heat is not a problem, love it, can bake in the sun all day...but am very sensititive to the cold, painfully so in my hands and feet, oncontrollable shivering and my muscles tighten or freeze...I guess the blood is leaving as my vessels constrict.

Actually, our family member is like Scott, heat is not a problem, but boy the Canadian winter is hell on earth.

 

[Stretched]

Down south here in US it's hot! It doesn't help my CFS symptoms; in fact, I seek air conditioning most of the time.

 

[hmnr asg]

I live in California and its almost always very mild but i also try to keep my body cool as much as possible. I have been trying to take cold showers also which help me tremendously but i find them to be so so painful.

 

[Insomniac]

I'm too brainfogged to read all this but YES terrible heat intolerance.

My symptoms worsen A LOT every Summer in Israel.

I am counting the days till September 20th when the humidity and heat goes down every year.

I don't have POTS or NMH. I am not even sure if the worsening caused by the chronic low blood pressure I have or not.

In CLL which is a type of leukaemia that my Mum has, there is a worsening in the Summer heat that is very similar to my own. So I sometimes wonder if the worsening of CFS is connected to the worsening in heat that some cancer patients have.

Air conditioning doesn't help as much as I would imagine. You either feel too hot or too cold and there is still that horrible humidity in the air.

 

[Kenshin]

I'm too brainfogged to read all this but YES terrible heat intolerance.

My symptoms worsen A LOT every Summer in Israel.

I am counting the days till September 20th when the humidity and heat goes down every year.

I don't have POTS or NMH. I am not even sure if the worsening caused by the chronic low blood pressure I have or not.

In CLL which is a type of leukaemia that my Mum has, there is a worsening in the Summer heat that is very similar to my own. So I sometimes wonder if the worsening of CFS is connected to the worsening in heat that some cancer patients have.

Somehow air conditioning doesn't help as much as I would imagine. You either feel too hot or too cold and there is still that horrible humidity in the air.

I didn't know cancer patients got worse in heat, leukaemia is interesting because many M.e/cfs patients have vascular problems, wether p.o.t.s or their other symptoms get worse when they stand.

The drained, head spinning, lead weight, high pitched, tinitus feeling M.E patients are familiar with could be described subjectively as very low blood pressure, or poisoned blood.

We have seen cold showers will rapidly reduce symptoms for a short period in a subset of M.E Patients.

Cold shower = Vasoconstriction, blood directed to internal organs, increase in endorphins.

Ron Davis is now showing M.E patients have problems in their blood.

I find air conditining helps alot, but I'm in uk and your Isreal sun is a different animal (I haven't been there but I'm remembering holidays in Cyprus).

But I know exactly what you mean by you're either too hot or too cold, during a crash I feel pain on my skin just from indoor air movement from opening a door.

 

[Sidney]

I always imagined that ME sufferers all have what I have: severe intolerance to heat and cold. A difference of a few degrees can make me go from heat sickness ( particular utter exhaustion on hot days) to horrible cold, changing clothes, getting more blankets, etc.
Once my body starts getting cold, unless I have a lot heat applied quickly, the temperature keeps dropping. A hot bath, or basin of water for 5-20 minutes is needed to go into reverse.
I do have Reynaud’s ( fingers and hands ) badly - sometimes even somewhat before my body starts to feel cold.

Though, since I became mainly bedbound, Reynauds isn’t one of my problems any more - since (@ScottTriGuy!) - I have the heating pad on always, at all times of the year; except in very hot heat waves. And, in that sort of heat, I am so knocked out, I could not even walk to my kitchen or bath.

I thought that temperature disregulation was common in, ME, along with other autonomic dysfunctions, like OI?

 

[Wishful]

I always imagined that ME sufferers all have what I have: severe intolerance to heat and cold.

Nope. My tolerance for temperature extremes seems unchanged. When temperatures change drastically, it takes me a couple of days to adjust. I like -40; I've spent hours hiking or shovelling snow (crisp, clear moonlit night) at such low temperatures. I've even gone bike riding at -40, though below -35C, my glasses switch from fogging up to icing up, which is really inconvenient.

No OI or POTS either. I'm not sure how common those symptoms are, but they're not essential to ME.

 

[Sidney]

Nope. My tolerance for temperature extremes seems unchanged. When temperatures change drastically, it takes me a couple of days to adjust. I like -40; I've spent hours hiking or shovelling snow (crisp, clear moonlit night) at such low temperatures. I've even gone bike riding at -40, though below -35C, my glasses switch from fogging up to icing up, which is really inconvenient.

No OI or POTS either. I'm not sure how common those symptoms are, but they're not essential to ME.

Of course, you are right; OI and POTS are not essential to ME.
I was just interested in seeing, yet again, how variable this disease is. I sometimes tend to think, when just hearing that someone has ME, that they feel the way I do. There is something in common - yet the specifics are as individual as people are.

 

[David_101]

If anybody here has problems with temperature deregulation definitely consider a skin biopsy for Small fiber neuropathy. Get a doctor to test this.

I have cold intolerance and burning skin pain in temperature changes. One drink of cold water and my body convulses. Wear a T shirt and my skin burns from heat.

Mine's was conclusively tested and positive damage. Somehow tied to the severe cold virus I had which started my deterioration.

 

[Thinktank]

The weather is getting warmer where i am, we had a few 25 degrees celsius days and it's not even summer yet.
That means i'm going to be feeling really sick and completely exhausted very soon. The heat intolerance becomes worse every year and i'm so fed up with it.
I have still not found out why i'm intolerant to heat and doctors so far have been useless.

I dread having to lock myself up again in my bedroom with the airconditioning on 24/7 for 4 months or longer.

I'm moving to the North pole with Santa.

 

[Moof]

I haven't any answers, but am a fellow sufferer – I really feel for you! Not lucky enough to have air-con, but I do spend a lot of time indoors. Exposure to direct sunlight on a warm day makes me really poorly. Hope you manage to get some relief!

 

[Thinktank]

Thank you, do you feel better with colder temperatures?

 

[Moof]

Yes! A subgroup of ME patients seem to be very strongly one way or the other – some are much better in the summer, whilst others only feel at their best in the winter.

 

[Thinktank]

It's a good thing you live in the UK then.

 

[kangaSue]

I haven't any answers, but am a fellow sufferer – I really feel for you! Not lucky enough to have air-con, but I do spend a lot of time indoors. Exposure to direct sunlight on a warm day makes me really poorly. Hope you manage to get some relief!

That certainly sounds like Small Fibre Neuropathy/Autonomic Neuropathy. You can feel like you're sweating in response to heat but in fact, you aren't sweating enough to adequately regulate your temperature.

 

[J.G]

The weather is getting warmer where i am, we had a few 25 degrees celsius days and it's not even summer yet.
That means i'm going to be feeling really sick and completely exhausted very soon. The heat intolerance becomes worse every year and i'm so fed up with it.
I have still not found out why i'm intolerant to heat and doctors so far have been useless.

My experience is very similar to yours. Most anything will crash me in summer, and I have to strictly bookend even the lightest activity with freezing cold showers to mitigate PEM somewhat. Also, in temperatures over 20C, I can't fall asleep for the life of me, the body simply won't "slow down" into a state of relaxation. In winter / in the cold I fall asleep quickly without any issues.

The last GI specialist I mentioned my heat intolerance to simply looked at me funny. I tentatively suggested the autonomic nervous system might be involved, to which she responded by demonstratively writing "autonomic nervous system" in capital letters on the corner of a notebook page as if to take the suggestion on board... And left it at that.

 

[Moof]

That certainly sounds like Small Fibre Neuropathy/Autonomic Neuropathy. You can feel like you're sweating in response to heat but in fact, you aren't sweating enough to adequately regulate your temperature.

To be honest it rarely gets hot enough here to make you sweat, specially when you use a powered wheelie and don't really work your muscles much. When I'm unwell, I feel faint and my lymph glands swell as soon as I go out in the sun, even if it's only 15 degrees – I think it's as much to do with UV light as it is heat.

My favourite days are those in the winter where it's below freezing but the sun is out. The light isn't strong enough to make my immune system react or to cause polymorphic light eruption; I can still burn (ginger with porcelain skin), but as long as I wear sunscreen, I'm fine. It's an absolute joy to be outdoors then!

Even the thought of visiting your part of the world makes me feel faint!!

 

[kangaSue]

To be honest it rarely gets hot enough here to make you sweat, specially when you use a powered wheelie and don't really work your muscles much.

Your system still has to cope with temperature regulation to adjust for the layers of clothing you might be wearing though.

When I'm unwell, I feel faint

That can be very common if you have Autonomic Neuropathy affecting your bp regulation too.

When I'm unwell, I feel faint and my lymph glands swell as soon as I go out in the sun, even if it's only 15 degrees

Lymph glands can become swollen due to heatstroke. I don't if it's the case or not but maybe it's possible that autonomic dysfunction makes you more susceptible to a heatstroke-like state from minimal sun exposure?