I was just wondering why my husband is getting cold sweats. He is shivering and it’s so hot today! What is causing the lack of temperature regulation?
He is going back to Birmingham Queen Elizabeth Hospital soon hopefully to discuss treatment. He has had a PET scan and a lot more blood tests a few weeks ago. We got in to see a consultant who specialises in CLL based on advice on this site. So thank you.
He is also getting a lot more pain in his right shoulder and his lymph glands are quite swollen at the base of his neck. He is tired all the time but is still functioning on a day to day level.
Any help or encouragement gratefully received. These recent developments have been rather alarming. 😞
Kind Regards
Anne
Written by
Porty14
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I'm relieved to hear of the significant progress you've made to ensuring your husband is properly assessed to determine if he needs treatment. The blood tests and scan will help with that assessment, as will a review of his physical symptoms.
Temperature regulation difficulties are reasonably common with CLL. Remember that CLL is a cancer of the immune system and our immune system regulates our body temperature to fight infections. According to the iwCLL Guidelines, among the triggers for starting treatment are:-
7. Disease-related symptoms as defined by any of the following:
a. Unintentional weight loss ≥10% within the previous 6 months.
b. Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).
c. Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.
d. Night sweats for ≥1 month without evidence of infection.
Treatment options in the UK have dramatically improved quite recently in the UK, so you can expect your husband to be feeling much better after starting treatment. CLL being a chronic disease, our health gradually deteriorates slowly, so we don't tend to notice how much it has affected our quality of life. When the CLL tumour burden is removed and our body recovers, the change in how we feel can be dramatic.
I was like your husband on three occasions and it proved to be an infection due to low immune system. I would ring your GP asap who should prescribe Antibiotics. My doctors were worried about Sepsis on all 3 occasions, so it is definitely worth a check up. The best of luck, as it is a truly worrying feeling being in a cold sweat especially when everyone else is so warm.
I agree with Eric, sounds like he might be unwell with an infection, a friend of mine who was having a shoulder pain was diagnosed with pneumonia, she didn't have any other symptoms. Definitely needs checking by your GP, better to be safe than sorry. Hope he gets better soon 🙏🏻
Hi. Agree with all the above. If he is shivering then you have to rule out rigors associated with infection. Agree - ring your Gp and get antibiotics.
Due to our poor immune symptoms we often don’t get same symptoms as other people. For example I get urine infections without typical symptoms - just terrible loin pain!
Ring your Gp. Says it’s urgent that he has treatment because immunosuppressed and don’t let anyone put you off. There is a junior drs stroke today so it will be very hectic, but stick to your guns and politely emphasise that it’s urgent. Make sure you have a record of any temperature, or low temperature.
I had uncontrollable shivers when my WW ended. It turned out that I had a blood infection called sepsis and the shivers were called rigors (pronounced “rye-gers”).
Hope that isn’t his problem but you might ask about it.
In my case, when that happened with my husband he was fighting an infection and had to go to the hospital. Yet, he also was not able to hold his head up. The last time they did a ton of tests and still did not know what the virus was. After a week he got to come home. I know how scary it can be when their immune system is compromised. I hope things are going well now. It is a different road to walk. Blessings to you Anne.
Yeah I too think it’s probably an infection. I go to an ENT doctor because its usually an Upper Respiratory Infection. But between the subtle signs of infection & hot flashes it can be more difficult for us women to differentiate 🤦🏽♀️
Thank you everyone for your kind responses. We have contacted the CLL nurse and the consultant. They have asked us to monitor David’s temperature 3 times a day. They will check for infections when we return to Birmingham on Wednesday to discuss treatments. It is a worrying time.
The worst is the pain he seems to be in with the enlarged lymph glands in his neck and shoulder. Do you think cold or warm compresses help? He is regularly taking paracetamol and the occasional codeine.
I think the toll that this is taking on his mental health is not good. Trying to sift out chronic anxiety from acute pain is hard for me to assess. He went into work for half a day yesterday and helped with the watering so the day wasn’t all bad!
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