A community thermoregulation experiment

Threads by Robert Phair and request to monitor thermoregulation.

https://forums.phoenixrising.me/threads/a-community-thermoregulation-experiment.82096/

https://forums.phoenixrising.me/thr...nd-body-temperature.82073/page-2#post-2308614

 

My body temperature drops to 95.5 when I'm in PEM.

 

Interesting questions about shivering, but I'm not sure how much they will reveal.

It seems to be a response that gets weaker as you get older, or perhaps needs more of a shock to initiate it. On birding outings I get cold to the point where I'm in significant pain, but I never shiver; I think I might need to be thrown in the canal before my muscles would perform!

 

Thinking about it I don't seem to shiver much. My muscles tighten and become painful.

Sometimes I wonder why I'm in so much pain before I realize I'm cold.

With thyroid & iron issues plus aging, it's hard to know how much if that is ME.

 

I shiver when I'm cold. I don't have pain.

I also shiver with menopause after a hot flash or night sweat- no amount of layers can warm me up.

 

Yes. There's being cold and then there's being cold.

The being cold because it is cold - verified by others etc. Then another jumper or blanket or whatever helps.

Cold caused by PEM, thyroid, or anaemia doesn't really respond when I put another layer on, although being snuggled may provide be comforting.

I think shivering was less likely with ME/thyroid/PEM induced cold. The pain is different as well - more bone deep.

 

I think shivering due to cold exposure is pretty unusual for most of us. You really need to be doing waterspouts when the weather turns bad or out on a school trip with inadequate clothing to cool down enough to shiver. I guess if the central heating fails and there is a power cut and there are no blankets you might get there. About once a year I get cold enough in bed (from bad duvet planning or whatever) to need to bicycle my legs to warm up but even that is not shivering.

Most of us shiver most often when our core temperature is normal but we have an infection - so it is a sign of developing fever.

I am not sure that a n internet poll is likely to produce anything meaningful. You would need a control group and controlling for reporting bias and ...

 

It's strange, but a couple of months before I got the upper respiratory infection that was quickly followed by the onset of ME, I experienced several unusually strong episodes of really intense shivering in response temperatures that I had well tolerated before. If this shivering indicated some kind of predisposition to the development of ME, it's odd that it only began to manifest itself a few months before the infection that seemed to lead to onset and was not a long standing reaction to cold.

I did experience some odd GI symptoms about four months before onset, but they had resolved prior to these "shivering" episodes. This all happened in my early 20's.

I wrote about this on another thread in 2018:

 

Ah, I wonder if that's why I remember shivering much more when I was younger. I didn't live in a centrally heated house until my mid twenties.

As a schoolgirl and uni student I had quite long walks in freezing cold and rain to and from the place of study.

No heaters in the bathroom etc.

 

When we visited family in England during the 70's there was no central heating, and the loo was outside. The air was damp and I was shivering all the time in only 0 degree temps. Here it can go down to -45 w/windchill and I'm ok as long as I'm wearing a windstopper vest. They say there is no difference between damp and dry cold, but I felt the difference. I still have nightmares.

 

I notice a huge difference too. If I notice that I'm feeling cold, it's usually a day with high humidity. With a dry cold, I can spend hours outside at -30 or lower.

 

It went on a lot longer than the 70s!

I lived with outside toilets until the late 80s, and rented my first ever house with central heating in 1991. I hated it; there's just no point to a Sunday morning lie-in if your bed isn't in the only warm place in the entire building.

Eventually I did come to appreciate not having to leg it down the stairs from the freezing bathroom, dripping as you go, so you can get dried in a warm room.

Nowadays I even have insulation. Nothing, though, will ever replace the utter luxury of soaking in a 1960s tin bath in front of a roaring fire, toasting first one side and then the other, until your skin looks like corned beef; and then going upstairs with a hot oven shelf wrapped up in an old towel to warm the bed.

 

I'm steroid dependent (adrenal insufficiency) and find that shivering is a key sign that my cortisol is too low for my needs (due to tiredness, onset of infection etc.). I also have hypothyroidism so not sure how that plays into things.

 

I don't seem to do proper shivering.

My normal temperature is around 36.3°C/97.3°F, so a little on the low side.

Pre-diagnosis when I didn't know any better and was still badly overdoing things physically I'd get really, really cold, even on a warm day, as a direct reaction to exertion. My temperature would go as low as 34°C/93.2°F (the first time I got a neighbour to come with another thermometer because I thought mine was faulty - it wasn't, I really was that cold) - but I wasn't shivering. Cold right to the bone yes, shivering no.

Warming up would require lying on a electric blanket with an electric throw over the top of me. I'm not a fan of lying between two layers of electricity but it was the only way.

The closest I'd get to shivering was a few days later, when starting to come out of PEM, I'd get these weird shivery skin sensations but they weren't really muscle contractions as in real shivers. It had nothing to do with ambient temperature and I never measured my core temperature then.

 

I've read posts from pwME who are unable to sweat. I think this might be caused by autonomic dysfunction? I've never been tested for autonomic issues, but I am able to sweat and shiver.

Do those of you who don't shiver also have difficulty sweating? Menopausal hot flashes/sweats not included.

 

Yep, I still sweat when I get too hot or if IM has inadvertently gone overboard with the chillies in a curry etc.

 

Oh, God, I wish. As soon as my bladder's full, I'm drenched in ruddy sweat! Seems to be a family trait, and nothing to do with ME...

 

Again, have to go back to the days when I still did silly things like exerting in hot temperatures.

Back then I would sweat, a lot even, but at the wrong time. When walking with a group I'd always be the very last one to start sweating. I'd be very, very hot but not a drop of sweat until suddenly a switch flicked and it would be pouring off me, and quite excessively so. And then it wouldn't stop for ages even if in the meantime we'd entered an airconditioned room and everyone else had stopped sweating long ago and was already reaching for another layer of clothing.

So basically a very delayed and excessive reaction.

 

Earlier on with ME, I shivered a lot when outside in the cold - with a warm winter coat on, touque, gloves, a scarf and winter boots. It was rather bizarre.

After a few minutes of being upright I may start to sweat. And, feel light headed.

 

I still sweat and shiver. ¯\_(ツ)_/¯