Going from hot to cold

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kristaradau

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I sit with a man who has had ALS for over 5 years now. Things seem to be progressing very quickly these days. Im so glad I found this forum full of helpful information. Something new has been happening to him lately. It seems he goes from freezing needing to be covered up to hot as heck. Does anyone know what could be causing this?
 
Welcome to our elite club - we all wish we weren't here, but hey there you have it.

Definitely this is common, we don't know why but PALS (person/s with ALS) lose their ability to regulate body temperature.

Just do what he needs, he can't control it, so jumpers, socks and blankies on and off as needed.
 
Have you taken his temperature at various times during the day? It could be an infection causing chills and fever. Body temperature is normally at its highest starting in the late afternoon. You need to determine his normal temperature if you can. That is usually a morning temperature. My normal is about 97.6 so if I am the standard 98.6, I feel achy and mildly feverish. Anything over 100 and I am definitely sick! I don't know if it is related to ALS or just me!
 
I have not tried the temperature thing but I will. I am trying to help him stay comfortable as needed. Thank you guys so much for the help. I am glad to have found this forum. Hope I dont ask too many questions.
 
Krista- Welcome. And please, ask EVERY question you may have! The questions people ask here, and the answers they receive from those who have experienced the same, help all those who come to this site for help.

It's an excellent resource and place of support and you are most welcome here.
 
Diane, my husband's normal is the same as yours 97.6 and when his is over 100 he, too, is definitely sick. He also seems to have an abnormal sense of cold and hot. We have been in a predominate trend of cold, wanting a down comforter and a portable heater on nights that are 70 . Then he will be hot and everything taken off. A couple of years ago he was in a hot trend?! His Dr said that ALS can effect the autonomic nervous system, I don't know if this is accurate or not. Kate
 
Hi, Krista, and welcome.

My husband has the same issue with temperature regulation. He is often cold during the day and asks for a blanket when it is 86 degrees and I am dying from the heat because he finds air conditioning too uncomfortable. At night he gets very hot and sweaty and kicks off the top sheet and blanket.

Sharon
 
For those who start or wake up cold, I always recommend a low-voltage heated mattress pad above or below the mattress. Even on the lowest setting, it can facilitate deeper sleep.
 
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