dimarzio

Temperature control

19 posts in this topic

Anyone else get the problem of not being able to keep a comfortable temperature?  I'm always too hot or too cold.  Just can't ever get a balance.

 

I've always suffered from the heat until this disease came along (never any issues with the cold), but now I swing between boiling hot and sweating and freezing cold and shivering.

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Me!  Me!  Me!!!

 

My most common state of being is to be so very hot with freezing hands and feet.  

 

I do switch, however, and end up sleeping in socks, gloves, full pajamas with 2 blankets and a comforter (and sometimes even have to get completely under the blankets, including my head.  

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Hi Dimarzio,

 

I tend to usually err on the cold side (I always have felt cold, but the extreme of temperatures have been worse since I developed scleroderma) and in fact it was one of the things that first drew my attention to the fact that I wasn't as well as I could be. Throughout the menopause, I used to long for a hot flush ( never had one) just so that I might feel warm for a while!

 

I think perhaps I should go and live somewhere like the Bahamas, where it's warm; the damp, cold climate of the U.K. does absolutely nothing for me at all! :wink:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I have always preferred the cold over the heat.

 

My theory was always that you could always put on more clothes if you are cold, but the more you take off the more people put the heat up. Now I can't stand too much of the heat or the cold anymore; my body has a hard time regulating. I wear a sweater even in the summer as I've always been able to be cold in 90 degree temperatures, but that's just me.

 

When I went through menopause and hot flashes I hated it; if you just get so hot, you can't stand it, now I'm cold all the time. I've made hot packs for myself; I just stick them in the microwave and warm them. I do it every night, so that I'm nice and warm when I want to go to bed and I wish all of you the best.

 

Bless each of you.

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The trouble with taking a jumper off is that my body is hot and my arms cold, so as soon as the jumper comes of, it has to go back on again.

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The other thing about this temperature thing is the bouts of hot and cold feel like a fever - could that simply be an affect of my immune system being constantly on?

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I have found it is better to be warm and almost hot. My biggest issue is keeping my hands warm. I wear gloves most of the year. My core body temp doesn't fluctuate but once I'm cold, it's hard to get warm again. Even with the warm Georgia summers, I usually have a blanket over me. Can't stand for the air conditioning or fan to be blowing on me.

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Hi Dimarzio,

 

I go through ups and downs on both front mainly hot and cold, cannot figure it out when and why. Usually, at night, even in winter, I have fan on - I need air circulation otherwise I feel too hot to sleep. In the morning, I may turn on heat or fireplace for 10-15 minutes to warm up.

 

It is a minor issue, and my doctors have no clue, so I ignore it.

Take care.


Kind regards,

 

Kamlesh

 

 

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Oh I was told that scleroderma affects the body's ability to regulate temperature and mine doesn't know what on earth it's doing!

 

Right now my legs are burning but I'm not. Last shower I noticed that my legs felt the water at a higher temperature thanthe rest of me.

 

I can overheat in a second but I know some medications make this worse for sure. I have to go to sleep with few blankets but then wake up freezing. Perfect.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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My hands and feet. Everyone wants that open concept in their homes. I now am trying to find small areas I can turn into my Florida rooms. There I will put a heater and blankets with things I like to do.

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Hi Sweetcarrot,

 

Welcome to Sclero Forums!  I'm glad you found us, and hope to get to know you better.

 

There are so many different things we can do to make living with Raynaud's easier. I never thought about smaller rooms, though it makes perfect sense. My grandfather used to have a sun porch, which kept him toasty warm all the time, which was very important to him, since my grandmother craved ice cold room temperatures.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Sweetcarrot,

 

Welcome to these forums!

 

I live in the UK, where the weather is mostly damp and cold, although very occasionally we do get a half decent summer (whereby a lot of people moan about the "heat"!) so a lot of the time I have to make sure that my core temperature is warm, otherwise my Raynaud's will flare up.

 

We have an old house with small rooms and a very efficient central heating system, so it's very seldom that I'm cold at home.

 

Now that you've found us, please do keep posting and let us get to know you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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When I get cold hands and feet, I can apply as much heat as I can - warm water, hot water bottle, heated boots etc and nothing warms them up.

 

Over the holidays my feet were very cold and I put them in my heated vibrating boots for a whole hour - they came out as cold as they went in an hour earlier.

 

Once I get cold, I seem to be able to find no way to warm back up again.

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Hi Sweetcarrot,

 

I'd like to emphasize how right Jo and Dimarzio are, in that it is so much easier for me to just stay warm in the first place, rather than to recover from it in the second place. 

 

I like to dress in layers, and always wear just a little bit more clothing than necessary in order to stay warm.  I keep my heat on just a bit more than it needs to be, have one more blanket than absolutely necessary, etc. Keeping the head and chest warm helps to keep the hands and feet warm, so it is sometimes more helpful to wear a hat or sweater than to wear gloves or heavier socks, and it took me awhile to really understand that.

 

Think warm, stay warm, be warm!  Also see: Raynaud's Prevention on our main site, for many more practical tips!

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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