Can’t handle the heat like I could last year

[Gvines]

I get hot very easily, I can’t handle the heat at all. Is this related to my CLL?

[JigFettler Volunteer]

Hi Gvines.

Yes it is!

There are many posts to this effect. My personal experience is definite cold and hot intolerance with emerging CLL. You see, I like to go mountain biking - in all weathers. Like I've done for decades. I have been very tolerant of extreme temperatures, form -15deg (we are talking UK btw - LoL) freezing my drink supply to +35deg where in 5 hours I would drink 5 litres before I started peeing again! Against that back drop I noticed a dramatic temperature intolerance as my CLL progressed. And guess what! I've had FCR last year, I am in remission, and temp intolerance has gone!

So why... I am happy to receive all ideas and theories.

My theory is ... its to do with cytokine production, which gives us night sweats, aching legs and fatigue.

If I am right we have to manage it - we cant fight it.

Hydrate - water. Not too much. Good quality nourishment. Keep as fit as you can.

Lastly - check with your GP that your thyroid etc is working normally.

Dont assume CLL is the cause for all symptoms.

I note you are in the US - I suspect your temps are much higher than in the UK.

With best wishes

Jig

[Name-1]

Mee too.

[Normsky]

Me too, really struggling 🥵

[PlanetaryKim]

I've become very heat intolerant in last few years. Don't know if it's the CLL, but quite likely.

[AuntHelen]

My husband’s experience has been since CLL he likes it cold in the house. When we were in the hospital, I asked why they kept to so cold. The nurse said germs don’t like the cold..

[pkpayne in reply to AuntHelen]

Me too. I like it cold at night - to the degree that when I get up the windows are fogged up.

[Hidden]

Sitting here in Southern Spain, dripping in sweat, with both overhead fan and air con on. We've lived here for 13 years but it's only the last couple of summers that I have had a strong reaction to the heat. I was diagnosed at the end of February this year, started on Imbruvica at the beginning of June.

[Safta]

Thank you for this exchange, I thought it was my age or weight. Now I have something else to blame my suffering on!

[Bubnojay]

Heat intolerance has been my constant companion on my CLL journey. They say you are doing well have indolent CLL, wish ‘they’’ could feel the fatigue and broken thermostat many of us live with.

My GP sent me to a specialist to have my thyroid checked due to consistently low count. The registrar I saw had me swallow and hold my hands out in front of me, he also took my pulse while answering his mobile which might explain why he missed the irregular heartbeat.

Just referred me back to the GP.

Does anyone know what this brief encounter told him ? Not worth posting the question, I have far more to worry about.

Bubnjay1

[Jonquiljo]

I seem to be the freak amongst us as I am cold intolerant. I always used to get warm, but now I get cold. I live in California USA, so it gets plenty hot here 80-90 deg F. - even 100 - just not lately.

I now have developed a hot, sweaty feeling when I wake up in the AM. It doesn't last long and it returns to cold intolerant later. I attribute it to nightmares . I think my CLL is finally getting me crazy - seriously! "Post-traumatic CLL disorder."

I'm lucky in that I have Heat/AC "zoning" and have 5 zones in this house. I'm not sure that is so wonderful though as it is hard to keep track of 5 thermostats. It does accommodate my cold intolerance anyway.

[Ginajetta]

i too am affected by the heat. This summer seems even more intolerable.

[pkpayne]

I used to work hours in the garden - even living south of Houston. But I can't do that anymore. It doesn't take long before I'm soaking wet. I have to take my glasses off or sweat will get them and I can't see. I can't work like I used to but I figured some of that was age.

[6468 in reply to pkpayne]

I also have become very heat intolerable. Have a tough time cooling down. Cooling towel helps. I live in Delaware, U.S.A. hot and humid summers.

[BeckyLUSA]

I am affected by both heat and cold. It appears that some of us with CLL have disrupted thermostats in our bodies. My husband says it is my CLL symptom that is the hardest on him!

BeckyL USA

[Dew77]

I believe it is. Want to move to Alaska. Lol

[SherriD]

I even notice my skin is sensitive to the hot water in the shower. I pretty much take pure cold showers

[Cassie2019]

I can't handle the heat anymore either. CLL has changed my life. I never had such tolerance before. I can handle cold better than heat now. I haven't had any treatments yet. My white cells are getting much higher, and suspect treatments will be in near future. I am not sure, but want to seek another consultation from another hospital.