I'm 78 female and diagnosed with CLL about 4/5 years ago but am on W&W though I think it was suspected in 2007 after a strange blood test before I had my thyroid removed.
I suffer profuse sweating of my upper body particularly my head and hair which gets as wet as if I've washed it! This can happen several times a day.
However my haematologist only seems interested in whether I have profuse night sweats and says the daytime ones must be something else.
Originally I thought it was symptoms of the menopause but surely cannot be that now!
Has anyone experienced the same daytime sweating and can it be caused by CLL
I'd be very grateful for any comments ideas etc as it's getting me down it's so debilitating and embarrassing
Thank you for your replies
Written by
Jamyang
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Actually you can be still having hot flashes from menopause. I am 66 and still have hot flashes.... unfortunately my gynocologist said I am one of the "lucky" women in a small group who will never get rid of my flashes. I started menopause at 42. I thought the flashes would be gone 5-10 years. Make an appt with your gynocologist to discuss this.
Mine is controlled by acupuncture and natural remedies. I only had one night sweat due to CLL. It was so different than my hot flashes. Night sweat is like waking up as tho ur floating in a pool.
My flashes are quick waves of chill to burning sensation from chest to head with some sweating...lasts 15-30 seconds. 💕
A possibility could be your thyroid replacement needing adjusting.
Diabetic hypoglycemia is another possibility.
Both of these can be an easy check by blood tests, so a visit to GP/PC is in order if you haven't already had checkups for at least these two possibilities. I see an Endocrinologist for those tests, but not everyone has accessibility to such specialists.
The following link gives lists these and other possibilities for causes of excessive sweating.
I have an intermittent sensation of heat in my head when my CLL is active, with and without sweating during the day. Other people can feel that my head feels hot to touch, but I don't have a fever. I don't think it's menopause related (at least not 100%) because it started around the time I was diagnosed, and is noticeably less severe if I am in remission. This past disease flare, the nature of the "hot head" has changed a bit to include a change in the sweating in my hair & now includes my upper chest, front but not the back. I have low thyroid activity & some problems with slow temperature regulation/blood flow in my body....my feet will be cold, or the tip of my nose, while the rest is normal. I layer clothing, I feel too hot then too cold. And when I'm really feeling stressed, the symptoms seem to be aggravated.
Sorry to hear about your problems and they sound similar to mine. It feels as though my feet are cold particularly in bed but quite normal to the touch. I'm not on any treatment for CLL so I'm not sure the sweats are a symptom My haematologist doesn't seem to think so. I felt the other day as though I couldn't control my body temperature at all. Is that a possibility I wonder. It doesn't help not even having a telephone appointment for 18 months due to covid.
Excessive sweating, not just night sweats, can be a symptom of the CLL itself, unrelated to treatment. People may notice night sweats more & report that to their docs, I think. The US National Library of Medicine includes it in listing CLL disease symptoms:
My hot flushes stopped for about a year then started again about a year or so before diagnosis of Cll, I get chills followed by upper body sweats around the head, neck and chest area.I also have no thyroid so I am not sure if it’s Cll or thyroid related.
Good question. I had what I call melt-downs during the day when at rest, where I would profusely sweat during the day, maybe 3-4 times a year. On the other night I had night sweats almost every night before treatment. I have only had one of the melt-downs since treatment two years ago. This leads me to believe that the melt-downs are connected to the CLL. Can I prove it, no. In any case the sweating is common with CLL, your internal thermometer is messed up.
I can’t believe you haven’t had even a phone appointment with your doctor in 18 months! I think you need to get in to see him/her. I have started having the sweats in the day and night and my blood work trend has changed. My doctor ordered another pet scan to see what is going on
I have had the same problem. My forehead and the tops of my hands are the worst areas, My palms do not sweat just the tops of my hands. During the warmer weather, it was almost unbearable. Before Covid, when hugging was still allowed, I dreaded being around friends and family. We have always been an affectionate group and it was most embarrassing. My Oncologist also was more concerned about night sweating and did not see it as a big deal.
At last someone like me.........like you Haematologist only interested in night sweats. I used to have menopause flushes. I stopped having them and about 2 years later(4yrs ago) they came back but were so different. GP did loads of blood tests couldn't find anything. They have gradually got worse. I was diagnosed with SLL last year when haematologist asked about night sweats i told him i get them 24 hours a day at least 20 sometimes 30 times and like you hair so wet and at night pillow can be saturated. Im having one now and the heat is mainly from waist upwards although starts in my feet with tingling. It lasts about 5 mins. Im sure it is connected with SLL as i read a little while ago a man had written he has CLL and sweats day and night. GP also confirned not gynae related by the way. Good luck
I'm not really, very fed up , tried eating different food, drinking loads of water, nothing works. Plus not being able to do or go anywhere to take your mind off it. So yes I'm not coping very well. Sorry
I get the upper body and head sweats mostly in the evening and while sleeping. It's not the drenching sweats described in B symptoms, and my temperature is higher than normal - but not higher than 38C/100.4F. For example, I normally have a 97.6 on waking. On sweaty awakening, it's above 98. Nothing that one could convince a doctor to treat, though. Still, I find it interesting and frustrating, in that I suspect someday someone will finally reveal the cause and later a treatment.
I do feel gas-lit about it. Many of us went on a medical odyssey that led to our CLL diagnosis. Often enough, we get some infection that requires a blood test, and that leads to our CLL diagnosis. Chronic infections are common with us, and who knows how many viruses are in the world - they're so tiny and hard to find, and only a few are treatable.
So, I'm resigned to walking with a lymph, muttering under my breath about the sensations I feel every day.
I am a 78 year old male with CLL and I had to stop what I was doing and place an ice pack on my forehead to get some relief from the sweats! I wish someone could tell me how to get some relieve. This use to happen only at night!
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