Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Temperature control


  • Please log in to reply
18 replies to this topic

#1 dimarzio

dimarzio

    Senior Bronze Member

  • Members
  • PipPipPip
  • 69 posts

Posted 16 February 2016 - 05:29 AM

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.



#2 aodom

aodom

    Newbie

  • Members
  • Pip
  • 5 posts

Posted 16 February 2016 - 03:38 PM

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.  



#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 16 February 2016 - 09:07 PM

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
ISN Chat Host
International Scleroderma Network (ISN)


#4 dimarzio

dimarzio

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 69 posts

Posted 17 February 2016 - 08:23 AM

Yep - one of my first thoughts was the male menopause - does anyone believe that exists?



#5 quiltfairy

quiltfairy

    Silver Member

  • Members
  • PipPipPipPip
  • 165 posts
  • Location:mapleton , Iowa

Posted 21 February 2016 - 04:56 PM

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.

#6 dimarzio

dimarzio

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 69 posts

Posted 22 February 2016 - 06:11 AM

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.



#7 dimarzio

dimarzio

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 69 posts

Posted 23 February 2016 - 07:30 AM

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?



#8 Tully

Tully

    Bronze Member

  • Members
  • PipPip
  • 14 posts

Posted 04 March 2016 - 10:10 PM

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.



#9 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 05 March 2016 - 07:44 PM

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


#10 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 08 March 2016 - 01:21 PM

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
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#11 sweetcarrot

sweetcarrot

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 11 April 2016 - 08:51 AM

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.



#12 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 11 April 2016 - 09:50 AM

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.

#13 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 11 April 2016 - 07:27 PM

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
ISN Chat Host
International Scleroderma Network (ISN)


#14 dimarzio

dimarzio

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 69 posts

Posted 11 April 2016 - 11:40 PM

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.



#15 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 12 April 2016 - 09:25 AM

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.

#16 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 22 April 2016 - 06:10 AM

I tend to always be cold, but when I cover up too much, I get too hot; therefore, it's a matter of finding that balance. :)  Something that my husband and I find very weird is that I get really cold right after I eat.  It's like my body can't do 2 things at once, so while it's trying to digest my food, it pulls energy from the rest of my body.  Even in the middle of summer I keep a blanket handy so I can cover up after eating.  Going out in the sun to warm up only last a little while, because then I get too hot.  So YES, many of us can relate to the temperature swings. :)

 

Hugs,

Janey


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#17 quiltfairy

quiltfairy

    Silver Member

  • Members
  • PipPipPipPip
  • 165 posts
  • Location:mapleton , Iowa

Posted 22 April 2016 - 05:44 PM

My house is a old house, but it has been insulated fairly well although there were still a lot of drafts. In 2013 I started to close the gaps. In Mapleton the city gives us insulating supplies and I am one of the people to make those supplies in my house.

I stared with the doors; it seems every form of door insulation let in more cold air so I had plenty of fleece I cut it in strips and stapled it to the door frame and it worked great.

Then next I saw that a company was doing some drywalling, so I asked if I could take some out of the dumpster and they said OK. I used that to close up the holes in my Attic that were open.

Last two years I have been recaulking my windows. With scleroderma it takes a bit longer to do all the work, but it has been well worth it. I looked at my gas heating bill from 2012 and I almost went into shock; it was 294 dollars just for heat this year. I looked at my January heat bill, smiled, sat down and had a cup of coffee it was only $79 dollars! I think I succeeded with what I wanted to do.

It has been often said I should have been the boy and my older brother the girls.

I just have one piece of advice for everyone; do what you can, stop and take rest breakers and if any one has the courage to say anything look at them and smile, for all of us here know how hard it is to do little things.

Bless each of you.

#18 Kathy D

Kathy D

    Silver Member

  • Members
  • PipPipPipPip
  • 242 posts
  • Location:Rocky Mountains USA

Posted 27 April 2016 - 05:17 PM

I have a really tough time with being either hot or cold constantly!

 

Dear husband lets me keep the house VERY warm, not sure how he puts up with it but he wears shorts and tank tops in here in the dead of winter LOLOL!  Lil one wears summer clothes all year round too.  I have learned to LOVE zip up hoodie jackets, I take them off during hot clothes soaking sweats, then put them back on when I am freezing from my damp skin/clothes.  I even wear them backwards (or from the front) sometimes when Raynauds is bad and hands and arms are cold but my core body (torso) is hot. 

 

I used to have electric heated throws near all my sitting places, they are now in the closet since having a lil one I am up and down every 10 seconds.  I still use disposable heat packs in my shoes, and change my shoes and socks often because I get hot, socks get damp from sweat, then they are freezing, I switch them all day.

 

Of all the things I can complain about, the body odor from sweating bothers me the most, I don't have it in me to shower more than every few days and it adds up over those few days.

 

I see my rheumy in late May (I had a mid April appt but had to move it because of a snowstorm), I will ask about the more intense hot flashes:)


Diffuse Scleroderma Diagnosed March 2009

#19 KTerrell

KTerrell

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 25 May 2016 - 07:34 AM

This is a symptom I have also. One second im freezing and the next I am sweating.... My feet sweat too which never used to happen.