• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Do people feel better in cooler temperature?

Do you feel better in colder weather?

  • Yes much better

    Votes: 25 46.3%
  • Yes but only a little

    Votes: 11 20.4%
  • Neutral - I feel the same as always

    Votes: 0 0.0%
  • No I feel worse in cold weather

    Votes: 18 33.3%
  • I feel better but pain symptom is worse

    Votes: 0 0.0%

  • Total voters
    54

Legendrew

Senior Member
Messages
541
Location
UK
I've recently noticed that in the cooler weather I seem to have more energy, get less headaches and generally feel better than I do in warmer weather. In the UK there was a heatwave lasting about a month and during that time I felt so much worse than ever yet last christmas I felt almost back to normal when resting (still experience PEM but not close to that which I get in the summer).

I'd appreciate if everyone voted if they can as i'm using this as potential research for a possible upcoming article.

additionally i'd be interested to hear if anyone has heard of or preferably read anywhere of whether there is any evidence of an increased risk of atherosclerosis in ME/CFS - I realise this may seem random but i'd love to see if there is a link
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
It's not so much the temperature per se, as how much humidity there is.
Don't get me wrong, I can't stand the heat, anything over 23 centigrade is unbearable, but humidity is the killer.

It's much easier to warm up a bit than it is to try to cool down.
But I do live in a place where air-conditioning is just "something weird they have in America".
 

maddietod

Senior Member
Messages
2,859
I'm wondering how much this has to do with POTS issues. Active threads are talking about taking cool showers, sleeping in a cold room, and this:

"It is also important that the patient learn the conditions (and their mechanisms) that can lower blood pressure (TABLE 3). Such conditions include prolonged or motionless standing, alcohol ingestion (causing vasodilation), carbohydrate-heavy meals (causing postprandial orthostatic hypotension related to an increase in the splanchnic-mesenteric venous capacitance), early morning orthostatic hypotension related to nocturnal diuresis and arising from bed, physical activity sufficient to cause muscle vasodilation, heat exposure (eg, hot weather or a hot bath or shower) producing skin vessel vasodilation"
from this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/

posted here by Sparrowhawk
http://forums.phoenixrising.me/inde...es-help-your-pots-symptoms.25036/#post-384095
 
Messages
2,565
Location
US
I have temperature regulation problems that go both ways. Poor self temperature regulation is a documented symptom. Sometimes I feel hot for seemingly no reason, so I prefer a cooler room. May be related to cortisol or other hormones being higher at unusual times of the day?

More commonly, I like it warmer than other people. It feels like I absorb the cold easily and it takes much longer to shake the cold feeling. For example, other people go outside in 10 degree weather for 20 minutes, and come inside and feel fine in 10 minutes. I go outside for 5 minutes and come inside and I'm not warmed up in 10 minutes.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
My vote was 'Yes but only a little' as there is a continuum. If it's really hot I can hardly move without becoming exhausted and drenched in sweat. If it's around 15-20 degrees C I feel relatively good. If it's much colder I get exhausted from tensing my muscles against the cold.

My own theory is that we produce heat instead of ATP due to uncoupling of ATP production from oxidative phosphorylation.

Do others find that they get overwhelmingly hot at the same time as they get exhausted?

If the external temperature is high it will be harder to lose this heat. I haven't looked into it in depth but there does seem to be some evidence of uncoupling in ME/CFS.

There is a recent paper referring to it here which says
TNFα causes opening of mitochondrial permeability transition pores (PTP) leading to a disappearance of the inner membrane potential and the uncoupling of oxidative phosphorylation
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I'm wondering how much this has to do with POTS issues. Active threads are talking about taking cool showers, sleeping in a cold room, and this:

"It is also important that the patient learn the conditions (and their mechanisms) that can lower blood pressure (TABLE 3). Such conditions include prolonged or motionless standing, alcohol ingestion (causing vasodilation), carbohydrate-heavy meals (causing postprandial orthostatic hypotension related to an increase in the splanchnic-mesenteric venous capacitance), early morning orthostatic hypotension related to nocturnal diuresis and arising from bed, physical activity sufficient to cause muscle vasodilation, heat exposure (eg, hot weather or a hot bath or shower) producing skin vessel vasodilation"
from this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/

posted here by Sparrowhawk
http://forums.phoenixrising.me/inde...es-help-your-pots-symptoms.25036/#post-384095

and just to be awkward, I have hypertension! :p
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Actually its not that I feel much better in cold weather (how I voted) as I don't feel at all well, more that I feel much worse in hot weather.

At the start of illness I had much less of a problem with hot weather and used to hug the radiators to keep warm. Around 1997 everything changed (a major increase in all sorts of symptoms) and all of a sudden I couldn't tolerate even modest heat (and I agree that humidity is also a major contributor).

I also have a problem with not being able to restore my core body temperature after getting cold. I used to do a little astronomy as a hobby but had to give it up as after a few hours in the winter night it literally took days for me to get back to normal temperature.

Temperature regulation may sound a relatively minor problem to some but was a major incapacity to me when I was working. Even moderate heat in a stuffy office environment was purgatory at times.
 

Legendrew

Senior Member
Messages
541
Location
UK
My own theory is that we produce heat instead of ATP due to uncoupling of ATP production from oxidative phosphorylation.


Interesting theory - any reason you think that?

I've studied ATP quite a lot during my A-levels and start of my degree and while ATP is somewhat unstable by nature (to allow for effective energy transfer through transfer of phosphates) it would need another molecule to bond with it for de-phosphorylation to occur and the bind would have to be fairly low energy for any excess energy to be released as heat.

I think if there was a major problem such as this in oxidative phosphorylation we'd likely be dead as opposed to chronically ill.


Actually its not that I feel much better in cold weather (how I voted) as I don't feel at all well, more that I feel much worse in hot weather

Yes that's probably the way i'd describe it too - you still feel unwell in cooler weather but not the the same degree that the warm weather makes you feel
 

meandthecat

Senior Member
Messages
206
Location
West country UK
much of the year I wear shorts, only when it is cold can I tolerate trousers and then if I am working and begin to warm up I will fade out. Get back into shorts and I begin to recover.

When I was first ill Heat was a killer, this year I have been a sun-bunny. I guess I am doing something right.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Interesting theory - any reason you think that?

I've studied ATP quite a lot during my A-levels and start of my degree and while ATP is somewhat unstable by nature (to allow for effective energy transfer through transfer of phosphates) it would need another molecule to bond with it for de-phosphorylation to occur and the bind would have to be fairly low energy for any excess energy to be released as heat.

I think if there was a major problem such as this in oxidative phosphorylation we'd likely be dead as opposed to chronically ill.

I just posted a reply to this and it hasn't appeared - damn!

The uncoupling stops ATP from being produced so that heat is produced instead, as in hibernating animals, where it is called non-shivering thermogenesis.

As I said, the reason I suspect it is that I get hot at the same time as getting exhausted.

Do a search for 'CFS uncoupling' and you will find some evidence of this in ME/CFS in addition to the link I posted.
 

Legendrew

Senior Member
Messages
541
Location
UK
I just posted a reply to this and it hasn't appeared - damn!

The uncoupling stops ATP from being produced so that heat is produced instead, as in hibernating animals, where it is called non-shivering thermogenesis.

As I said, the reason I suspect it is that I get hot at the same time as getting exhausted.

Do a search for 'CFS uncoupling' and you will find some evidence of this in ME/CFS in addition to the link I posted.


Thanks - looking at it now. Interesting
http://www.nature.com/nature/journal/v435/n7041/abs/nature03527.html
 
Messages
78
Location
Paducah, Kentucky
I actually sleep with the window open in the winter. I LOVE the cold, last winter I was backing to working out a little I felt so much better being cold..and as soon as spring hit and warmed up, I was back to being sick as a dog. Its so frustrating! The only annoying part is my hands and feet take so long to warm up I have to keep socks and gloves on in the winter. My family thinks its insane I can sit in a FREEZING room with my skin being so cold and feel fine, when they're sitting their near hypothermia, haha. I don't even wear coats in the winter, just long sleeves or a light jacket when I go somewhere.
Interesting side-note, I didn't sweat when I was a child(literally, couldn't sweat) and had terrible circulation in my hands and feet even at 4 years old, so i've always been intolerant of heat to some degree, just not this badly!
Now I can be sitting still and suddenly get hotflashes so bad I rival my grandmother.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I used to find (pre-ME) in the cold that I ended up in actual pain from shivering, but after I'd done yoga for three years, I had enough strength to stop the shivering and the pain that came with it.

I still have that ability, but to a smaller extent. It does help a lot, to be able to stop it. :)
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Being such a problem for me I've given this some thought in the past.

One possibility is mitochondrial dysfunction. As regards an impaired cold response, the primary physiological response (besides behavioural responses like shivering or a hot whiskey) is via brown adipose (fat) tissue which if I recall correctly is dense in basically 'faulty' mitochondria that, rather than producing energy, light up like an electric fire to produce heat (and also burn off calories as result which is why they were once thought possibly might be the key to tackling obesity). Impaired mito function might show up readily (and possible first) in impaired brown adipose function.

How this explains heat intolerance on the other hand I don't know but heat intolerance is well recognised in pure mitochondrial diseases. Perhaps the physiology of heat dissipation is also a high energy requirement?

Another possibility is autonomic dysfunction/neuropathy which is now increasingly a common finding in ME/CFS. Decoupling (I like that concept) of the autonomic response from cold and heat sensory input might very well explain this inability to maintain thermal homeostasis.

Perhaps the deficit in heat shock proteins found in ME/CFS patients might play a role given that amongst the first HSPs discovered were actually those induced by cold stress?

MS patients also have severe problems with heat intolerance which they report cause symptoms flares. Actually this gels with me because heat just doesn't cause me to feel uncomfortably hot, rather it causes a flare in all of my usual symptoms and can often lead to an attack of episodic ataxia in the same way that physical or mental stressors can. In the case of MS its believed that high temperatures slows the speed of neural signals that is already impaired in MS due to demyelination. As far as I'm aware demyelination has been ruled out in ME/CFS but I do believe we may have other problems with neurotransmission.

One thing that does work for me to an extent (apart from total immersion in cold water which isn't always practical) is the supplement NAC in soluble form. This might tie in with mito dysfunction and possibly even autonomic or neural problems. On the other had the fact that its a sugary drink might just mean I'm replacing electrolytes.

Sorry. Its been a while since I looked into this and to cut a long story short I don't know the answer! :)

Some clues might be found in other conditions where its a problem though.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK

Better to stick to papers about humans and CFS/ME, perhaps? Animal studies are extremely unreliable with regard to relevance to humans.

Superoxide is mentioned in the paper I linked to. Martin Pall, who has produced a lot of interesting work on ME/CFS and chemical sensitivity, also refers to superoxide, although his focus is more on uncoupling of nitric oxide synthase (NOS) activity. One of his papers is here.

This paper refers to superoxide acting as an uncoupler of mitochondrial uncoupling proteins (although again mice are referred to - poor things :() .

Not sure if I have suggested this to you before, but I strongly recommend the ME Research UK database as a research tool. It's easy to find from an internet search.
 

Legendrew

Senior Member
Messages
541
Location
UK
Superoxide is mentioned in the paper I linked to. Martin Pall, who has produced a lot of interesting work on ME/CFS and chemical sensitivity, also refers to superoxide, although his focus is more on uncoupling of nitric oxide synthase (NOS) activity. One of his papers is here.


Now this is very interesting - i've recently been looking for papers and evidence discussing nitric oxide in ME/CFS and the data seems very mixed but comes up a lot. I'd suspect nitric oxide levels to be high but have yet to be able to find the data to support this and the exact reason as to why this would be. I suspect this paper could be getting at something. Thank you for bringing this up!
 

rosie26

Senior Member
Messages
2,446
Location
NZ
Cold weather makes me sicker, ( flu ME symptoms increase ) and hot weather makes my ME symptoms feel heavier.

But cold seems to help me regarding inflammation I have noticed. But not with the flu symptoms. So helpful in one way and not in another way.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
I would be interested in how much weight people are carrying along with this question of do you feel better in colder weather.

I know when I carried a lot of weight I enjoyed the coolness of winter. But now that I am very slim, I shiver and shake in cold and can not get warm, which irritates and inflames my ME. If my core body temperature was warmer with more "insulation of fat" I would probably be better off in winter in regards to ME.