feeling cold when its hot : Hi there I have had... - CLL Support

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feeling cold when its hot


Hi there I have had CLL for 10 years now don't' need to have a treatment just yet but I need an answer to a question is it normal to feel cold and hot all the time shivering in the hot and wanting to cover up just wanted to know if any one else has experienced this problem.

11 Replies

Hi ilkay

I was diagnosed in 2006 and still on W&W.

For someone who could tolerate the cold ( a good thing when you come from Scotland ) .. I now am the guy who turns up the heating a notch, or when I go out wears a Rugby sports 'base layer' ( Canterbury are the best in my opinion ).

On top of the base layer a shirt and/or jumper and/or better still a cardigan, better for heat control, and on top a jacket.

My jeans and t-shirt days are long gone ... now I am no longer 'cool' ... ( who would have ever thought that this young long haired guy would be glad to join the 'cardigan' brigade ) ... I am no longer cool ... only cold !

My thermostat is broken ... as an engineer I should be able to fix it ... then again, if something is this broken, there's only one tool in the toolbox that an engineer reaches for ... now where did I leave the hammer .. you are NOT alone.


in reply to ygtgo

Thank you for the reply

Sometimes I think every one thinks I am mad as I moan about the cold I am originally from hot climate but I been living in England for 47 years i got used to this weather but this illness has changed my tolerance to both hot and cold.

but knowing i am not alone makes me feel better at least i am not mad

in reply to ygtgo

I am the same way. I get freezing cold even in a hot tub of water, then after a couple of hours I am boiling up. This is getting to be ridiculous. LOL

I am a 71 year old male and live in Arizona which is not a cold climate. Right now I am in my office with a floor heater by my feet and my hands are freezing cold.

See my Oncologist next Thursday and hope he has some answers for me. Had chemo last year and am now on wait and watch.


I have this phenomenon most of the time. I can be in bed with sheet, blanket, spread and quilt and socks and pajamas and still be shivering. I keep a quilt in my easy chair to cover up with if I watch tv. More crazy is how my skin can feel warm to touch but I am cold and shivering on the inside. I also run low grade fevers at night and am shivering at the same time. Convinced it is the CLL. My specialist says he hears it all the time and agrees it is just a part of it.

Becky L

in reply to BeckyLUSA

Oh my god that's exactly how I get when I shiver I am boiling at the same time and i was thinking maybe its menopause never quite understood, I have an appointment in a few days time with my specialist and I will tell him see what he says and will share it with every one !!!!!!!!!!!!!

Diagnosed in 2006 and treated first in 2011. Remission until 2017 but just started oral chemo, Imbruvica. Didn't have the chills/sweats until a couple months ago. Now can't seem to regulate body temps. Live in Florida and can get chills with temps in the 90's F. Crazy. Hoping the chemo will resolve over time.

in reply to Bluejacket

Lets hoping for you and all who have this illness

Hi ilkay,

I get waves of chills and goosebumps when I'm warm. This is usually when I'm cozy in bed; they are just waves, short-lived. Definitely not menopause. I also feel like my thermostat is malfunctioning. I am heat and sun intolerant but I'm also on med that I think could be the culprit.



Have your thyroid checked to be sure it's not an issue.

in reply to MsCLL

yes it is not the thyroid

My feet stay like blocks of ice now.

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