Thermostat malfunction

[rudiclecl]

I am 52 years old and recently diagnosed with cll. Although I don't have traditional night sweats I wake up with a sweaty back regularly. I also get hot during the day which I don't think is related to menopause. I also can no longer stand to be out in the heat where previously it didn't bother me nears much

[Newdawn Administrator]

I think you'll find you're not alone with this rudiclecl,

It's a case of 'welcome to the hot and sweaty world of CLL!'. Not everyone has a wonky temperature of course but it's a widely reported problem even in the early stages of the condition. But I making the distinction between soaking, drenching night sweats which I understand are unmistakable. These need to be discussed immediately with a physician as they can be indicative of the need to consider treatment.

I, like you, seem to have a malfunctioning thermostat and even on cool days I can feel like I'm burning up. There are a number of theories as to why this should happen but I tend to feel it's my body having to work overtime and twice as hard to fight infection resulting in a sense of high energy and heat. It's not exactly scientific but it helps me. There is also the belief that cytokine levels are implicated but whatever causes it, like they say on that TV programme, 'it ain't half hot!'

And please be careful of being out in the heat anyway as we CLL'ers have a massively increased risk of developing skin cancers.

Regards,

Newdawn

[Jinjo]

Hi. I have been diagnosed with CLL. I am one of the 'lucky' ones with not much progression of the disease. However, I do find that I am lacking in energy and suffer fatigue. One of the most difficult things to cope with is overheating as if my body thermostat has gone wonky! Like you, I do not have night sweats but sometimes in the day I find myself getting very hot for no apparent reason (not menopausal flushes) and take a very long time to cool down. I intend to ask about it when I next see the consultant but am convinced it is connected to CLL. I sympathise with you as the overheating can be quite unpleasant and even embarrassing.

[Petey613]

You're not alone. I don't have drenching night sweats but sometimes I wake up with a clammy chest and back. I used to keep my thermostat at 70 now I need it at 75 or higher. The humidity really effects me I'm living in Los Angekes where it's fairly dry but I was in NY the past week for my hemo appt and it was brutal(I'm a life long New Yorker who never noticed humidity)

It's funny because in the winter I can get quite warm and find myself sleeping with only a sheet but that was in NYC SoCal weather is pretty comfortable year round. What's funny tho is I still enjoy the steam room and the hot sauna tub I don't get too hot in either. My doctor says after treatment it will go back to normal but it's the least of my worries as the fatigue just absolutely beats me down.

Good luck, discuss it with your hemo and remember you're rarely alone we all deal with these things on a daily basis.

Peter

[happyclappy]

Hi all.

I'm also 52, dx 2010. I find another issue with the "thermostat" malfunction is varying outdoor temperature, especially this time of year.

Walking to work the other day with a fleece on,the sun was shining, a lovely day but I was getting a little bit of a sweat on, turned a corner, into the shade, a gust of wind, felt a chill and now a cold. Was that the cause? Probably not, but who knows?

Pete, Maidstone

[Spiritlove]

I am exactly the same. Been on W and W 8 years now and get terribly hot every night. I only have a sheet over me summer and winter and this summer and last summer had to have a fan on all night. its a big problem for me and I feel a real misery telling people I cannot stand the heat, in the daytime too I have the fan on on warm summer days. Used to love the summer and hot weather but now I am the opposite. Also extreme fatigue, I can only do an hour or so and then I am shattered have to go and lie down. I can't keep going all day and envy people my age group (57) who have so much energy. I find all this embarrassing

with people who don't understand. Lynne

[Kwenda]

My thermostat is just plain WRONG..!!

Occasionally too hot, but mostly I am always cold…

It never seems that I have either the correct clothes or the correct blanket / sheet combination on the bed..

I used to be able to be happy whatever the temperature, now I study the weather forecasts and hope that I have the correct jacket or sweater.

Dick

[Bubnojay]

I think learning to live with a thermostat which can be declared defunct, kaputt, out of order, is all part of living with our CLL. I spend half of my night moving in and out of my bedding as do many of us.

Day and night my system decides to have hot spell whenever it feels like it, and I feel warmer than I used to most of the time. No doubt some of us have the opposite effect and feel cooler, be interesting to hear of others experiences.

Knowing it is down to our CLL is hopefully reassuring for those who suffer such effects.

Bubnjay1

[prosecco1]

I sympathise with you all, I too have a wonky system, constantly tired, getting these horrible flushes, which again I don't think are menopause related (I'm also nearly 52), but have to say knowing I'm not going through this on my own does help.

Elle

[Peggy4]

Me too I noticed it starting in the few months before diagnosis and put it down to the menopause. Don't know which to blame now, menapause or CLL. At least if you're a man you'd know 😀

[Nannybuttons]

Yup, me too. Not drenching but you could fry an egg on my back sometimes. Mostly during the night 3 or 4 times, but sometimes during the day too. I also feel warmer all the time which is confussing as I was always the cold one in our house.

I am W & W since 2013, very early stage I am told and not many problems yet. Making the most of life and intending to grow old disgracefully. Ha ha.

Blessings to you all, xx

[ava1967ir]

Me too.Im only 48 and I'm W&W since 2013....this problem is particularly bothersome at night & caused my insomnia.....☺️

Ava

[AussieNeil Partner Administrator]

This is a common complaint for those with CLL, so much so that we've had a poll on the topic:

healthunlocked.com/cllsuppo....

I've felt quite ill at times due to temperature regulation challenges, but I've reduced the degree of impact by having easily adjustable clothing.

Neil

[MsLockYourPosts Passed Volunteer]

This is an issue that is recognized in many if not all areas in the U.S. I believe it has to do with being immune compromised, but I don't tolerate heat or cold. The only good thing about it is that with a form signed by my doctor I am entitled to lower heating and cooling bills from the utilities. I wasn't sure how my doctor would respond to being asked to sign my forms. She didn't react at all - just said that they sign them all of the time and signed.

My latest thing is that I will break out in a sweat for no aparent reason - while sitting in a cool room in front of a fan or sleeping with a fan on in the room for example. Suddenly my face and upper body are dripping wet for twenty minutes or so, then back to normal. This started during my last two rounds of Gazyva and has not improved. This was especially frustrating during the really bad heat and humidity we've had for the last month in LA - normal sweating if I was out in the heat - this is just entirely different.

[ABloor]

I am finding it very difficult. At night I am in and out of the covers all night but its during the day. In the office I am melting sweat dripping down my face and wet hair, wet back but everyone else is actually freezing. I have just had a bad cold and struggling to get rid of this sinus infection and still coughing up in the morning. It just makes me feel horrible. I am just 50 diagnosed 2016. I don't think I am in menopause but hard to tell as I had a hysterectomy when I was 40 but still have an ovary so its very hard to tell.

Feel like jumping in a pool of ice water!