• 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.

hard to describe hot feeling

knackers323

Senior Member
Messages
1,625
does anyone else have this feeling mainly in the body and hea?. not so much the legs. its like an internally hot feeling and as soon as any activity is done it immediatly gets worse
 

kat0465

Senior Member
Messages
230
Location
Texas
yes Knackers i do that a lot. i can be feeling kinda ok, then try and get up and do something, then it starts. i keep waiting to spontaneously combust ;/ i thought it was a hormonal thing, but i dont think so, it's like my body cant regulate its thermostat.... Wierd.

Kat
 

RestingInHim

Realist
Messages
159
Location
Riverside, CA, USA
yes! my body doesn't regulate temperature well either. my body can be hot and my feet are freezing. i used to get the sweats alot...but haven't in a while...i seem to retain the heat inside my body. it thought it was just me!
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Hot! Heat! Hot! Heat! All the time except it will usually die down a little around 11:00pm. I'm okay till I go to bed at 1:00am, but I wake up hot and sweaty at 7:00am most of the time. Occasionaly I'll wake up with the covers off of me and I'm ice cold, but with good reason because it is usually 65 degrees.

All day long though I'm burning up and if I do any physical activity it's some serious sweating. The only thing that I have taken to tone it down some was Klonopin.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Knackers323, replying to this is difficult, because my first question is: what kind of heat? Certainly I have experienced many intense heat sensations, lasting hours to weeks. but not permanently. However, the exact heat sensation varies considerable - there a number of different kinds. For many years now I had burning feet syndrome. For last several days my face would feel like it was on fire and then I would dry heave - I think I had a transient infection. On Immuncal I eventually felt like all my skin was being burnt in a fire. I stopped the Immunocal, which ended the pain, but it also ended my energy. Similarly I have had long hours in which my body seemed to get hotter and hotter, but I was not sweating excessively and my skin was not read.

This might be a complex subject. Also recall that the Lights research show a proliferation of heat sensors post exercise.

Bye,
Alex
 

knackers323

Senior Member
Messages
1,625
Hi, yes I know it is hard to explain but I feel it is fundamental to my illness. the worse this heat is the worse I feel overall. It is like an internal heat mainly in the torso and head. my skin isnt any hotter to touch. It knid of feels dirty (if that makes sence to anyone) like it is an infection or toxin.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi knackers,

I get a burning heat in my legs / feet and it is often during the night whilst laying down. The heat seems to be right in my legs like from my bones. Legs are sometimes red but not hot to touch.

Sometimes it occurs over the entire body and in the afternoons my face is often red, hot but with no obvious rise in temp (with thermometer). I stopped sweating about 10 years ago so it's a dry heat.

This was one of the symptoms that noticeable improved when I tried the AV drug Valtrex.
 

lucy

Senior Member
Messages
102
I had it too and still have it occasionally. I learned to differentiate from fever over the time, because I was having both. I would call them hot flashes. The explanations I found for myself were: I was reading that when body preserves the energy, skin (as an organ) is the least important and therefore could be, that thermo-regulation is not so important as supplying other organs with blood. Other explanation - too strong vasodilation, upregulated by toxins, or some bacteria released substance circulating in the blood. I also had the burning feet, it resolved after keeping the feet totally dry and out of cold for a month. It also included sleeping with socks, because apparently due to insufficient circulation in the feet, they were freezing while I was sleeping, then felt very warm and itchy next day - if I understand correctly, it is similar or the same as chilblain.
 

knackers323

Senior Member
Messages
1,625
Just bumping this thread.

The heat I am talking about gets worse with the harder I am pushing myself. And it slowly dissapates with the PEM.

When I am not exerting myself it it kept at a low level just under the surface.

Does this sound familiar to anyone? Or have any ideas?

Could it be a low level infection that immediately gets flared with activity?

Or stirring up or increasing inflammation?

Or a symptom of trying to push damaged cells or mitochondria?

Do any of these things sound feasable?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
My guess is the most likely thing is a combination of neurological and vascular, but nobody can say for sure. This is not something you can easily find answers for. I only realized this year my intolerance of heat, especially direct sunlight, is neurological. In small fiber polyneuropathy the cold sensing nerves die, and so we get heat without cold. The brain cannot handle that. I am burning up as I write this, on my arms and chest. Its summer here.
 

knackers323

Senior Member
Messages
1,625
My guess is the most likely thing is a combination of neurological and vascular, but nobody can say for sure. This is not something you can easily find answers for. I only realized this year my intolerance of heat, especially direct sunlight, is neurological. In small fiber polyneuropathy the cold sensing nerves die, and so we get heat without cold. The brain cannot handle that. I am burning up as I write this, on my arms and chest. Its summer here.

Hi thanks for your reply.

If it was neurological. What could cause this?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi thanks for your reply.

If it was neurological. What could cause this?

The science is not done there yet. Lots of things though - these nerves are vulnerable. So we could be talking a range of toxins or metabolic defects, mitochondrial disorders, diabetes, and who knows what else. Most with fibro seem to have this problem, and about half with CFS. I am unsure of the percentage with strictly defined ME.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think loss of cold sensors can cause issues with cold. We don't rug up or get out of the cold soon enough, we are more concerned with heat. So I think, though I am not certain, that we can get chilled without really being aware of it, it kind of creeps up on us. Its just an idea, I don't know it is correct.
 
Messages
2,565
Location
US
I think loss of cold sensors can cause issues with cold. We don't rug up or get out of the cold soon enough, we are more concerned with heat. So I think, though I am not certain, that we can get chilled without really being aware of it, it kind of creeps up on us. Its just an idea, I don't know it is correct.

I notice cold more. Both can creep up but much more with heat. Heat sometimes hits fast.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
does anyone else have this feeling mainly in the body and hea?. not so much the legs. its like an internally hot feeling and as soon as any activity is done it immediatly gets worse

Yes. I believe that it is connected to the mitochondrial malfunction that causes the mitos to switch rapidly from aerobic to anaerobic ATP production. It could be the process known as uncoupling, which hibernating animals use to avoid freezing, when it is known as non-shivering thermogenesis. It seems to take place mostly in brown adipose tissue/brown fat.

If you search this site for 'uncoupling' you will find some other posts about this phenomenon.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi knackers. I think I used to get exactly what you are describing here with my ME.

It was like used to have a heater switched on inside me so heating up from inside out. It was a terrible symptom as seeing the heat was so internal, I couldnt do anything to help it at all eg if I had a cold bath it even felt like my heat coming from within me was going to the outside from inside and felt like it could actually heat up the water around me!!! . Nothing could touch where the heat feeling was starting due to its internal nature (not even laying in a cold bath for an hour thou it was a bit relieving to my skin at least).. so all it did was like try to radiate out of me.

It was a very weird symptom. and not at all like having a fever in which one is equally hot all over (fevers dont come with an internal heat central place and I dont think I ever did have a fever showing with this symptom).

My starting place for this symptom didnt have my head involved thou (thou that could end up feeling warm due to the heating), my starting place for this was from deep within my body (torso). I really wondered if I'd spontanously combust oneday and they'd find my charred remains of my feet only left on the floor with the rest of me ash (like some of those stories Ive read which are supposed to be true).

I used to spend hours (till my arms hurt and just couldnt do it no more) rubbing ice over myself due to it.. just to attempt to get some relief thou it only helped the surface a bit which even then I could still feel being heated from the inside.
 
Last edited:

xchocoholic

Senior Member
Messages
2,947
Location
Florida
My thermo regulation changes. Sometimes I can't stand the cold because I feel chilled to the bone and sometimes the cold is refreshing. I have Hashimoto's tho so I assumed it was related.

I'm post menopausal now so I relate feeling over heated to having hot flashes. The hot flashes really do come and go in a flash. Symptoms always included profuse sweating. I'd have to change my clothes sometimes. Thankfully that's over.

I notice I get overheated if I'm standing for too long. I can't cook or do dishes without getting this. Oddly, I'm fine in the shower.

tc ... x