Temperature control issues/Internal thermostat malfunction

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Temperature control issues/Internal thermostat malfunction

Postby pretzel » Mon Oct 12, 2009 1:49 pm

Not sure whether this needs a new topic or if it canbe moved but I've searched and can't find anything.

I find that my body temperature can fluctuate wildly, going from too hot (woke up yesterday morning, well a few times during the night to be honest) with sopping wet sheets which I think may by period related as I always get too warm just as my period is about to start and often end up kicking the covers off. Then at other times my body temperature will be so low, if I've been using a mouse on the computer my mouse hand will be freezing, almost "dead" cold... hubby, bless him, is used to me using his toasty warm shoulders as a radiator!

Other day I was out on the motorbike, thermals on below leathers, glove liners on etc went out at 9am, home for 2pm out to a friends house, normally toasty warm at Vicci's, and back home for 7pm... at 9pm I was still sitting shivering with a blanket wrapped round me and the fire on with two cats refusing to come near me because I was too cold for them!

Also if I'm coming down with a bug, common cold will do, my body temperature can fluctuate wildly going from wildly sweating to shivering several times over a period of hours.

Anybody else who suffers similarly got any tips? Is there anybody else who suffers similarly or am I just a freak? I can handle the freak tag, I'd just like to know if its justified this time! I usually find it is :lol:
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Re: Coldness and temperature control issues

Postby hannah » Mon Oct 12, 2009 3:46 pm

Yup - my temperature control is up the creek. Only I can't tell what temperature I am - for example, I think I'm cold, so am sat wrapped in a blanket. Friend comes in, puts hand on my forhead and informs me I'm too hot, removes blanket and jumper.
I feel freezing for a few minutes, then start to feel a lot lot better as, bizarrely, I cool down and stop feeling cold :?

Try using the search facilities cos I'm sure quite a few talk about cold hands/feet and temp control issues - you might be a freak, but you are one that fits in nicely :mrgreen:
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Re: Coldness and temperature control issues

Postby l00pyp0u » Mon Oct 12, 2009 4:54 pm

Have to agree. Scared hubby stupid one night, was feeling tired but was witing for him, so put up with it. Got into bed, Hubby snuggled up behind me, the shot out of bed like a scalded cat :lol: Hot waterbottles, and duvets and blankets were then piled high all on my side of the bed, apparantly I was freezing, literally like a corpse. I ended up nice and toasty warm, and he spent the night worrying about me getting cold again :lol:
Now i live with a blanket inthe front room, but find that I get cold, then I get hot, then cold, well you get the idea. Haven't been out of jumpers at all this summer.
And I haven't taken the winter duvet off the bed at all this year, maybe it's just getting old.

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Re: Coldness and temperature control issues

Postby Blaadyblah » Mon Oct 12, 2009 6:36 pm

The feverishness sounds very much like my PMS flushes. It's quite common, your body temperature rises just before and during your period I'm told. I know my internal thermostat is broken, my temperature also swings wildly (though is improving on HRT).

There are topics about cold hands and about feeling the cold, try a search for "cold" in topic titles only, that should bring up the relevant topics. There are also topics on hormonal temperature fluctuations, hot flushes, excessive sweating and so on, though some are in the personal and sensitive section of the boards to which new members do not have access.
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Re: Temperature control issues/Internal thermostat malfunction

Postby Stone » Mon Oct 12, 2009 7:04 pm

^^ just to add to what blaadyblah said, this is one of the things that people put under 'autonomic dysfunction' so you might get more hits with that :)

I get this too, way too cold to way too hot and no in-between. If I know I'm going to be in places I always end up too hot (eg the Underground) I tend to wear less clothing and put up with being too cold on the way there, otherwise I try and tough it out! I'm much better being too cold than too hot (it's painful, especially in my hands, but I can still think clearly) so I tend to wear jeans and a tshirt in all weathers and constantly have people asking me why I'm not cold :)

The other day I was shopping with the gf and we went in Marks' to look for some new pyjamas for me - we'd just walked into town from our house so I was getting a bit tired and ended up getting pretty stroppy 'cos my back was killing me and I needed a sit down. (they hadn't got any, it was quite clear from looking around what they did have but I was getting wound up because it was taking her a long time to catch on, bless her). Both went downstairs, complete with black cloud, into the food section and it was about 10 degrees colder from all the fridge bits. Back pain went away instantly and I felt a million times better and way less grumpy :oops: Took a bit of grovelling but I escaped...

So yeah, temperature sets us off because we're just not very good at knowing what's wrong :)

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Re: Temperature control issues/Internal thermostat malfunction

Postby pretzel » Thu Oct 15, 2009 8:35 am

Thanks for that folks and I did search on Autonomic Dysfunction and I did get more hits... and a few more things that I hadn't associated with this damned condition which appear to be.

Things like palpitations when I change position like getting into bed, dizziness when I go from sitting to standing etc. This is starting to get to me now, I've done the "Thank God it's all one thing and I at least know I'm not a complete wreck with loads of little problems" but I think its now just starting to hit that this is forever. I felt good having had a couple of weeks off work with hols, pain had subsided tremendously, acupuncture had done wonders too but now I'm back at work its all starting to come back and I'm starting to feel miserable about it. I've stopped walking to work (about 2 miles which I used to do because my hips end up hurting for days if I do) and have started to cycle but that appears to cause sciatica type pain in my bottom and thighs.

I've got a bruise on my hand that hurts like hell from where a customer shook my hand too hard, I'm feeling miserable and I don't really know what to do about it. I really don't like feeling like this and I'm not used to letting things get to me I usually deal with everything in good humour and find the positive in everything, I had a massive brain fog day on Monday, so much so that I couldn't hide it and it bothers me that this is affecting my work. I've just been offered a new job which I interviewed for about 6 months ago before this was diagnosed so they don't know about it and I don't know how to tell them but know that I need to.
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Re: Temperature control issues/Internal thermostat malfunction

Postby Blaadyblah » Thu Oct 15, 2009 11:55 am

There's a topic on palpitations, sounds like you found that and another on bruising/healing skin. If you take a look at this topic you'll get an idea of the sort of things OH can help with. A workspace assessment is a good way of bringing the subject up with your employer too - there are probably some simple adjustments they can make which would make life a little easier and they'll usually refer you to Occupational Health afterwards.

I'm really struggling to manage temperature control at the moment, I'm on HRT and getting some hot flushes - they're not actually as bad as the ones I got with my PMS but they're shorter and far more random! I'm throwing layers on and off every five minutes, I'm sure it's hilarious to anyone watching me!
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Re: Temperature control issues/Internal thermostat malfunction

Postby iNeko » Thu Oct 15, 2009 12:28 pm

I quite often feel like I'm coming down with a cold, feeling too cold or feeling to hot and fluctuating between the two quite rapidly, getting cold sweats and shivers! For me though, it can't be PMS! Both Pretzel's and Stone's stories sound oddly familiar (except that when I'm out and I get grumpy I just complain a lot!) A lot of these things I haven't seen as 'important' enough to talk to the doctor about :shock: maybe I should! I'm going to look into autonomic dysfunction, is it quite a common thing?

I don't want to keep adding things to my (seemingly endless) list of things wrong, but sadly a lot of these things do seem to fit scarily well - I feel like I'm imagining all this most of the time, that I'm making a fuss over nothing...
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Re: Temperature control issues/Internal thermostat malfunction

Postby Blaadyblah » Thu Oct 15, 2009 12:34 pm

In HMS patients it's all pretty common, yep. :)
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Re: Temperature control issues/Internal thermostat malfunction

Postby hannah » Thu Oct 15, 2009 2:33 pm

Look in the POTS thread (sorry I'm having a bad day and my linking skills have gone). Lots of what you have been mentioning fits there - the grumpy when too hot thing specially. I have pots and have come to see it as just another facet of my HMS/EDS rather than a separate condition. Because then I still only have one thing 'wrong' - although if I was going to be specific I could probably fill a couple of pages :lol:
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Re: Temperature control issues/Internal thermostat malfunction

Postby Fiona-Jane » Thu Oct 15, 2009 5:58 pm

hiya,

my internal thermostat is dead random too and everything i was going to say has already been posted, but i've just got one thing to add- you might want to be careful with hot bath or sink water as many of us with dodgy internal thermostats cant tell exactly how hot it is until we've been in the water for a few minutes. i've been badly scalded a few times so i now run the cold water first! :mrgreen:

and i often get cold and shivery and feel like i have a cold when i'm actually just too hot so i keep a forehead thermometer (the you stick on your skin) by my bed and check my temperature when i feel a bit cold. my friends think i'm very odd when i go all cold and shivery and then 'warm up' by taking off a few layers of clothes! :lol:


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Re: Temperature control issues/Internal thermostat malfunction

Postby Stone » Thu Oct 15, 2009 10:14 pm

Fiona-Jane wrote:you might want to be careful with hot bath or sink water as many of us with dodgy internal thermostats cant tell exactly how hot it is until we've been in the water for a few minutes. i've been badly scalded a few times so i now run the cold water first! :mrgreen:

Wow, a long-forgotten memory came back there! I occasionally used to run a bath, stick a foot in it, decide the temperature was fine and then climb in and end up with two scalded feet and have to leap out again :oops:

I used to do this all the time, weird how it comes back :lol:

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Re: Temperature control issues/Internal thermostat malfunction

Postby iNeko » Thu Oct 15, 2009 11:00 pm

Stone wrote:
Fiona-Jane wrote:you might want to be careful with hot bath or sink water as many of us with dodgy internal thermostats cant tell exactly how hot it is until we've been in the water for a few minutes. i've been badly scalded a few times so i now run the cold water first! :mrgreen:

Wow, a long-forgotten memory came back there! I occasionally used to run a bath, stick a foot in it, decide the temperature was fine and then climb in and end up with two scalded feet and have to leap out again :oops:

I used to do this all the time, weird how it comes back :lol:

Stone


I still do that! :shock: so that's all included too? Blimey!
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Re: Temperature control issues/Internal thermostat malfunction

Postby pretzel » Fri Oct 16, 2009 8:09 am

In respect of bath temperature, it is now vary rare that I use the bath preferring the shower as it seems easier to get the right temperature, although on saying that I do need to set it everytime I can't just set it and leave it like a lot of people can. With the bath I have learned to use much colder water than I think I need and then top it up once I am in the bath (got taps I could use with my toes so that I don't need to sit up too heheh... although thinking about it even that is kind of HM dependent isn't it... No wonder hubby thought I was a nutcase when that was one of my new tap criteria!)

Anyway, feeling much less miserable today, and surprisingly enough far less fatigued than yesterday too and the outdoor temperature seems to have levelled off a bit and it isn't raining, nasty mizzly stuff yesterday, so that may play a part in me feeling a little more human too.

So thanks for listening yesterday and for wading in with other bits, it does feel a whole lot better when i don't feel alone.
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Re: Temperature control issues/Internal thermostat malfunction

Postby C0tt0nC4ndy » Mon Dec 21, 2009 9:59 am

I have problems with my body getting warm/cooling down. I was out in the snow yesterday walking the dog and I ended up getting really warm and taking my jumper off then got into the house which was hot and i was freezing and im usually so cold most times of the day that i end up with a blanket and hotwater bottle trying to warm up and my mum thinks im mad but when its cold out, i usually warm up and get too hot
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