Temperature dysregulation and joint pain

[Bloodwork]

I found some posts from 7 years ago that addressed dealing with temperature dysregulation and how to differentiate between menopausal symptoms and CLL symptoms. While there weren't any clear answers, it was reassuring to have others describe exactly what I'm experiencing, sudden blazing heat in my head, neck, and chest at various and unpredictable times pretty much 24/7. Same heat at night with some sweating, but not what I would consider drenching, although it varies. The heat, fatigue and joint pain is getting a little wearing. Plus, these are all pretty subjective symptoms. What constitutes a drenching sweat in the hematology world? Should my ankles and knees hurt this much from a 4 mile walk? Who's to say.

I'm 53 and was diagnosed in the fall of 2022 with CLL/SLL (IGHV mutated, 17p not deleted and negative for TP53 mutation). I'm currently W&W.

I guess I'm partly venting and partly asking if anyone has any updated recommendations/information. I should also express my continuing gratitude for this site and its community.

[AussieNeil Partner Administrator]

It's great that you found shared experiences from 7 years ago helpful. With respect to the B symptom of drenching night sweats, per lymphomainfo.net/articles/l.... "Lymphoma night sweats are defined as drenching sweats that require the individual to change bed clothes at least once throughout the night." Your clothing can be soaked enough so that you can wring out the sweat if it hasn't soaked into your sheets.

Neil

[Bloodwork in reply to AussieNeil]

That is a vivid and specific definition of drenching night sweats. Good to know.

[Suzie42]

I had menopausal hot flushes and completely different from hot flushes I get with CLL. I went through menopause without too many problems and most hot flushes at night and occasionally during the day.

The hot flushes/sweats I have now start with my feet tingling then within 10 seconds the upper part of my body is sweltering hot. I get at least 2 an hour 24 hours a day. I am sure now this was the 1st CLL symptom. Haematologist not at all interested

[Thursday45]

Hello Bloodwork

I have raised temperatures at any time throughout the day. Not as extreme as the menopausal hot flushes which I used to have but just feeling hot and sometimes with slight sweating or sweaty palms. I’ve not seen this anywhere as a CLL symptom but you seem to be describing a similar thing.

[mocky444]

I am currently getting those hot flashes too, I am w&w for 7 years.. my cheeks go red and my neck burns.. my haemo thinks it's prolly the diseas the causing it but as yet I don't have night sweats.. I have fatigue and bone pain for sure. It thought it was blood pressure but I've had it checked and it seems to be normal .. I wish you well x

[Abby-pup]

I am 7 months post O & V treatment. I experienced the exact same type of flushes and heat that everyone is describing before treatment and since treatment. My BP does not rise, but sometimes I do note a slight drop in heart rate. I also have Hashimotos thyroiditis which may or may not be a factor. It is frustrating especially with the layers of issues. Most doctors tell me it's menopause. I'm currently insisting on a check of my adrenals, if only to rule them out.

[Pinkdark2018]

I was experiencing this before diagnosis and had made an appointment to see my GP as it was rather disturbing and I knew it wasn’t the menopause. I would have 24/7 heat disturbances without having a temperature. These sometimes occurred with episodes of sweats and sometimes did not. My referral for diagnosis came following a blood test and nodes seen on a routine mammogram as well as the reported heat issues. They continued to get worse and the consultant just said my thermoregulation had been disturbed. Usually a person who liked to snuggle under a duvet I found it much too hot and made many adaptations to my bedding and clothing which helped a little. I have since progressed to treatment with O&V and it’s completion 2 weeks ago and these episodes have gradually receded and although not yet completely gone they are considerably fewer and I am now able to use a duvet!

[ladyscream]

Yes! As you say , the hot flushes are different from the menopausal ones.

Mine had stopped , then noticed they started again, I remarked to my Husband that they seemed different. Then followed my diagnosis of Cll.

Now I get them all the time throughout the day and night, not drenching, but damp top, wet neck and in crease of elbows and behind my knees.

Often preceded by a feeling of nausea.

Also general joint pain and fatigue, boom and bust ,eg if you do too much one day, you pay for it the next few by being completely wiped out.

It's good to know you are not alone.

The reassurance this site gives you is priceless.

[Vlaminck]

Haven't read all the other comments, but the suddenness suggests to me it's hormonal. That's how I experienced those flushes -- suddenly unbearably hot.