Temperature control issues/Internal thermostat malfunction

[pretzel]

Loving this current cold snap... NOT!

I'm still wandering around in short sleeves for work, no jacket and being told by others that its cold but not really feeling it, then at home hubby will put the fire on as he's feeling a chill while I sit there boiling my bits off, the minute he's warm enough I end up freezing and with a blanket wrapped round me.

As for bedtime, I'm sure its not normal to be sleeping starkers and kicking the duvet off all night while pushing hubby away as it's sooooooo hot in the middle of December with outdoor temperatures of -6C! Can't remember being this out of whack before and spent much of last winter wearing PJs for bed, which I find irritating, as I was chilly.

Grrrr!

[ali]

pretzel im excatly the same with the duvett,last year i couldnt get enough of thermal pjs and blankets,this year i in strappy tops and knickers for bed.it wierd how i can go out in skipiest thing in winter whilst everyone else wrapped up.

[adele]

I have tried to look for an thread to put this is but can't find anywhere, so mods please move it if you need to.

Modnote: Your wish is our command.

last week (well really the week before) I was in tenerife on holiday. The weather was very hot (shade temp mid to high 20's) and for a few days i had a fairly high fever (very high 38's) i didn't really feel ill as such... can't really explain it... my head was very swimmy and found it hard to concentrate and felt exhausted and in more pain than usual, almost flu like but knowing i wasn't actually ill as could still do things.

I was wondering if others got fevers when the weather is hot due to not being able to regulate body temp. I have a lot of issues with temp control and often feel hot when others are cold and vice versa but its the first time i have noticed my internal temp not being well controlled either.

Also things with body temp have changed in me... i used to be cold most of the time and NEVER sweated... but now i am more likely to feel hot all the time and sweat loads. The cold i can deal with, but i really struggle with the heat. My heart doesn't tolerate the heat to well either even with the meds i am on.

I am finding it harder to function when i am feeling this way and was wondering if anyone had any advice?

It may also be worth mentioning that i score very high on orthostatic intolorence questionaires but whenever they check my bp and pulse from laying to standing it doesn't change significantly enough to get a diag of POTS.

I am currently sat here sweating loads and has taken me ages to write this due to head not feeling right, with my body feeling ice cold to the touch.

thanks guys,
Adele xXx <><

[Blaadyblah]

Hey adele, this comes under the autonomic dysfunction set of problems - you might want to have a read of that topic too. I know hannah has similar problems, some people have had success with cool vests, personally I keep a spray bottle of water handy when the weather is really hot. Running cold water over the inside of your wrists can help cool you down rapidly too but otherwise I think you're stuck with eating lots and lots of ice cream.

[clicker]

I am having temperature control problems that are worse than usual. It is warmer today than it has been for ages and I guess my body is having a problem readjusting to this change, but I have the headache from hell today, I cant concentrate, i cant let any of my skin touch other parts of my skin because that makes me sweat even more, my hands and ankles are swollen, I cant seem to tolerate noise and I'm really grumpy. If I lie down the inner thermostat seems to fall to bearable.
Funny thing is if I get cold then I cannot stay awake as it makes me so exhausted.
I feel really exasperated with all of this today
Sue

[Blaadyblah]

Hot days like today are a nightmare. I think everyone is struggling.

Walking is better than standing. Sitting is better than walking. Lying is better than sitting.

Cool showers and baths are your friend. Ditto Ice lollies, ice cream, large jugs of iced water and ice/gel packs.

Keep one room cool and quiet to retreat to.

If you must be out and about, keep plenty of fluids going. Wear a hat if you're in the sun. Avoid stressful situations. Keep a wet sponge in a sandwich bag with an ice pack. Fan yourself.

[sueiz]

I've had issues with heat for years - it's kinda like my thermostat doesn't react in synch with the temperature around me. Anything above about 21C and I feel like I'm suffocating, totally drianed of energy and the brain-fog rapidly turns to pea-soup, but then as the exhaustion increases, I get cold and achy. But then once I manage to get into a more normal range of temp, say indoors near the fan, I go completely the other way, freezing cold and under layers of blankets,and then a few hours later I'm roasting again!

I don't think working in an older peoples residential home has helped - it's always hot in there, and I ofetn end up freezing once I get home - so my body seems to over-react to the temp drop which is sometimes only a couple of degrees, but it's enough. And it's much worse when I'm tired, and yes, I get very grumpy!!

Getting really cold despite the temperature around me is usually a good warning-sign of impending migraine if I don't or can't pay heed and go lie down and sleep it off under a mountain of duvets.

What is it about connective tissue disorder that causes this? Does anyone know what the wonky piece of kit is in our bodies? I know the term Autonomic Dysfunction but haven't quite understood what that is!

[gila]

autonomic dysfunction- the autonomic nervous system is the one that regulates 'involuntary' body functions (meaning things you dont have to think about, your body just does them... like breathing, digesting, blood pressure and pulse, temperature control etc) - and when that goes wonky/malfunctions (due to either something off with the nerves themselves or the neurotransmitters that do the communicating being wonky... all sorts of probs arise)

for a better, longer, indepth explanation head over to one of the a d support sites like dinet.org or stars.org.uk
xxg

[Green Thistle]

There are so many posts here that sound just like me. I too have dramatic extremes of temperature, (well that's to say the temperature that I think my body is fluctuates wildly, with my actual body temp remaining quite constant, usually at 36.something degrees).

I am often freezing cold, and nothing I do will make me warm. My many layers of clothes make my family laugh. And when I'm this cold I just huddle up on a sofa and I can't bring myself to move as moving will make me even colder! (Sounds strange, I know). Often only a really boiling hot bath will warm up my bones.. Except I don't know whether the bath is really boiling, or if I'm just perceiving it as boiling because my limbs are so cold!!

Other times I'm so boiling hot. It feels like it starts from inside my head, or even my nose and my ears. Sometimes it spreads to my whole body and is really uncomfortable. I get boiling when everyone else is cold, and my head feels all hazy and I feel kind of unwell. This hotness seems to be worse in the winter. And I think it's also worse during the second half of my cycle. I've been getting suddenly hot for several years, but this year and last year were the worst, and it seems to be much more extreme this year (sometimes I feel "too hot" for hours, or even all day long).

Last year I got a blood test to see whether I was starting the menopause (I'm 38), but that came out normal. I'm thinking that now these flushes are becoming more extreme then it probably is peri-menopause after all.

But now reading these other posts, I'm not sure if it's to do with autonomic dysfunction. It's all really confusing. My doctor thinks it's unlikely to be to do with the menopause as I still have regular periods, but I know that doesn't necessarily follow. And he doesn't know much about HMS, and didn't think it was relevant. I think I'm going to demand another hormone test as I'm finding it difficult to cope with these different extremes, and don't know where to start with them.

Sorry for the long post, I just wanted to get it all down, and say that it's interesting reading these stories. And I wondered if anyone had any comments or suggestions about how I can find out what's causing all of this craziness!

p.s. my description of getting suddenly hot seems to match up to typical menopausal "hot flush" descriptions that I've read online. Do hot episodes caused by POTS manifest in the same kind of way?

[nemonie]

Mine do. I'll often go from freezing cold to boiling hot in a few seconds. Some things trigger POTS hot flushes too for me - like eating a meal. I always get really hot about halfway through a meal and have to strip off a bit

[RainbowsButterflies]

Is that a POTS thing? I've always got hot eating - I thought it was normal...

[gila]

nemonie- I'm with you on "can really overheat when eating a hot meal" (soups are the "worst") and yep that comes on like a menopausal flush- but also vice versa eating something v cold can make me freezing cold for ages- so no ice cream for me in winter at all

rainbows- I think a bit of warming up/cooling down via food/drink IS normal (remember that ad re some hot porridge cereal being "central heating for your body" ) but I think having to strip down from 2 t shirts plus thick cardigan to short sleeved t shirt and taking socks off and still feeling hot... is not
xxg

[Green Thistle]

Interesting... I have also done the suddenly hot 'cool-down', by removing multiple layers. (Which I was wearing in the first place because I was freezing cold, when no-one else was!) It's all very strange. Glad I'm not alone in this.

Didn't help this morning that they had the doors open at work. I had to keep my coat on the whole time. Everyone else seemed ok though...

<cold to hot> in 2 seconds!

[lollipop]

My thermostat is broken. I'm often found with layers on and freezing cold. I've even taken to wearing a ski suit while playing in the garden with the children. Welly boot socks at great for keeping my feet warm.

Other times I'm roasting and everyone else is freezing.

[Green Thistle]

You sound like me too!

I think I need to understand a bit about why this happens to people with HMS. Will still probably ask my doctor for another hormone test, because thinking about it, it is definitely worse in the week or two before my period. So my instinct still says it's a menopausal issue... (But my instinct might be wrong).