Can anyone tell me if it's normal to feel very cold with CLL.
It seems to be a new symptom, I have been like it for last 2 to 3 weeks.
I'm wearing 2 jumpers and trousers and still feeling the cold.
So am just wondering if it's normal lol.
Donnax
Feeling very cold: Can anyone tell me if it's... - CLL Support
Feeling very cold
Written by
PusscatsGoodies
To view profiles and participate in discussions please or .
Read more about...
57 Replies
•
NewdawnAdministrator
It’s shivering cold in the U.K. just now so perhaps that’s one of the issues. Real feel -4 in my area today.
Anaemia can cause feels of being cold so I’m wondering if your RBC/Hb levels are ok? Have you perhaps lost weight lately? So many reasons including the use of certain meds especially blood thinners. Watch for Raynaud’s if it’s particularly affecting your hands, feet and extremities. Even thyroid issues can cause this.
Layer up and plenty of nutritional food. I think we are in for a big chill here for a while yet! 🥶
Newdawn
Hi Newdawn
I'm going through menopause so never cold havent been for years lol.
My new normal is 2 jumpers 2 trousers 2 pairs of socks usually have dressing gown on too and still cold.
Not on any meds apart from blood pressure meds and astma sprays.
Not lost weight , I wish could do with losing a couple of stones.
Its mostly in hands, feet and legs.
I have my annual check up tomorrow, so hopefully might show something up there.
Could be Raynauds but your doctor will advise. Sounds circulatory but with CLL, I find I have temperature dysregulation anyway. Have you had your glucose levels checked?
Good luck! 🥾🧤🧣
Newdawn
No dont think so, will see what the blood results come back at.
Been having problems with my neck too, doctor sent me to physiotherapy which was done over phone, which just made it worse, doctor getting her to ring me back, but not holding much luck on that.
Yup I have had that issue this past few months PLUS the sore neck ! I'm on watch and wait so I have no answers to why but wanted to let you know you're not alone
Thank you so much. Not see specialist yet, he has just rang me twice since Jan.
just ironic the 2 symptoms the same ! And like me, waiting....
Thank you, I went to see doctor about my neck and he requested physio, which she called me and sent the exercises over by emailI tried them which only made the pain 10 times worse, I'm now waiting for her to call me back on Thursday. I did physio on my back about 8 years ago that didn't work either.
Know what you mean...tried same...bah humbug 🤣
Never usually cold, it's a new thing.
Having bloods done tomorrow so let's see if anything shows up.
i don't think it's unusual, as has been said, there are specific causes, and it's always good to check with your GP.
I felt my 'Inner Core' cold last year, and spent some tim with a hot water bottle on my tummy, which did alleviate the cold feeling.
I hope you find a cause and solution.
Stay toasty🥶
All the best. Ron
Thanks Ron
Got my annual bloods tomorrow so hoping it shows something up? If not it's off the see doctor again.
Tried my specialist nurse but no answer, so will try again tomorrow.
Donna
Yes I have been cold too. Its strange because as a young adult I was always cold due to heavy menstrual cycles & anemia. Then hit menopause & had Hot Flashes. CLL hit stage 4 with bad night sweats & now cold after increasing my zanubrutinib. So confusing for sure but I have bloodwork tomorrow also & I sleep with a heating pad. My place is drafty with old windows too & I covered the AC both inside & outside. I need rubber insulation to really seal it tho. I just layer up & keep moving.
Inside/outside AC Cover
I'm not used to it, with the menopause I'm always hot lol.
Hopefully will find something in bloods.
Been sleeping with hot water bottle lol.
Have you changed your diet recently by including more raw or cold foods? I knew a guy who was always cold and was eating mostly raw food. He was very pale. He started to eat lamb and black beans and spices like cinnamon and ginger and did better. The book Healing with Whole Foods has a lot of information on eating according to symptoms and body type that I have found very helpful. Good luck!
I dont think so, but at work there is never anything to eat so I usually just take a mug shot pasta thing.
I do think it's time I started taking my own food maybe start making home made soups to take.
I will definitely look for the book, think it's time I started with better food for work.
I really feel the cold, not sure if it's the CLL or just an ageing thing. I do get more cold related cramp in my legs so try to keep warm.
I bought an electric heated throw to wrap up in whilst sitting in the evening. My hubby is always hot so we quarrel about the central heating. The throw is wonderful.
There are also heated vests available that warm up the core. They run on batteries. Less useful outside but useful inside for cases like this.
It's usually the other way round in our house my husband is always cold me hot, but last few weeks it's been the other way round.Had my bloods done this morning so see if that shows anything if not will be another trip to the doctors for me.
I didn't know about the heated throws might have to have a look for them lol.
I work in local supermarket in december we can wear xmas jumpers so that's good might be a bit warmer lol.
I got my throw from Dunelm but various other places sell them.
Will have a look for some, we have new recliner sofa coming hopefully on the 19th if nothing goes wrong. 🙂
We just got our new sofas. Reclining for legs plus independent support for lumbar and head regions. Stay warm, comfy and safe x
Thank you, I have a back problem too. 😊
I've just told my husband about the throws and his eyes lit up lol.
I have CLL, no meds at the moment. I do find if I'm tired or have a little bug suddenly I just start shivering if it's cold. I never used to so definitely a new symptom for myself. It's uncontrollably at times and it just hits me. The next day after a good sleep I'm normally back to normal.
I'm not on any meds yet only got diagnosed in Jan this year.That's a thought I dont sleep very well at all, doctors just put me on new menopause tablets to help me sleep.
sidesy, me, too! I'm not on meds, but do sometimes feel chilly! I've thought it could be related to me being "run down". Rest does help. 🙂 Sandra
That could be a possibility too, I work 3 shifts a week now, one is a 7am start one is a 10pm finish and other is somewhere in middle lol.
Donnax
Pusscats Goodies, do find a way to at least rest your mind. I've had to work at that and it is hard to do while I'm at work. But, a minute here or there while closing my eyes and deep breathing helps to reset me to a better place of relaxing. 🙂 Sandra
I need to work on that, as its something I dont do.
I was diagnosed in 2022. I live in northern New England and winter does seem colder with CLL. I wear a lot of wool clothing.
Need to buy more woolly jumpers lol.
Hi,
I find that I am now (since CLL) experiencing temperature extremes. If I get hot, I overheat to the point of not being able to cool down until I remove myself and get into a cooler area. When I get cold, same situation. I also have developed Raynaud’s, so I also get the blue/purple hands, lovely. All my life, I’ve never loved the cold. Now, I cannot tolerate any extreme temperature. Not sure if this is menopausal related or CLL.
Best,
Sandy
Hi SandyThanks for that, maybe that is what this is, I have just had my bloods done this morning so I'll see if that turns anything up.
I do have a lot of problems with the menopause but I'm usually hot. Lol
Good morning PusscatGoodies and all... I am 64 - male and diagnosed in 2018 -live in a Iowa and there's snow on the ground today.. I noticed the same, when I get cold to the core - I am really, really cold.. I have poor circulation anyway...but the CLL made a noticeable difference.. I wear socks to bed..... I think we just have to bundle up... and when others are running around in t-shirts and shorts - I usually have on a sweats...😉
That makes a lot of sense, we do have a little snow this morning but gone now, I'm sat in 2 pairs of trousers 2 pairs of socks and 2 jumpers and am still freezing. My husband says it's not that cold and I'm frozen lol.
So many reasons given here. I assume somewhere in there a fever has been mentioned. That's about the only time I feel cold (I'm always feeling too hot). With fever, I can literally shiver in a warm room. But if have fever for 2-3 wks, should have that checked out because most viral reasons are gone by then, but bacteria can last somewhat longer, as I understand it.
Might be an idea if I make an appointment as I've had it a while now.
For me wool is a life saver, wool socks, wool leggings, wool thermal top, wool hat. Synthetics just don’t perform like wool.
I have just bought a few new jumpers, I think new fleesy leggings will be next on the list that I can put under my trousers. Lol.
Personally, I do believe it is related to my CLL. This always cold feeling started just before diagnosis. I think it has to do with CLL interfering with our internal “thermostat”. My normal base temperature has dropped to 97.3 degrees (US) from 98.3. So when my temp goes up to 99 degrees, I am pretty sure I have an infection f some kind.
I stay cold all year long. As I tell my husband, it is an inside the body cold! My skin temperature will feel normal but will have chills on the inside, very frustrating. For Christmas last year, my husband gave me a heated vest, when I complain of being cold while watching TV, he gets my vest and tells me to turn it up to high. It really does help.
Thanks for you response Becky, my husbands just ordered some heated throws.
Looks like it is the CLL that is causing it then.
Donnax
Make sure you have checked out all the other things that have been suggested. It appears to be causing my temperature issues, but everyone’s CLL is different! Good luck!
Will do, My bloods have just come back I'm guessing they are not happy with something in there as it says they want a re test.
I also am much more sensitive to the cold in the cooler months. And yes, I have sometimes had the chills without getting sick. Although I've not had to wear them yet, I recommend Smartwool tops and bottoms because they don't pick up perspiration and last forever. I also have a variety of fleece vests and jackets which are easy to carry in my bag when I'm not home.
Thank you for your reply, I will have a look for that make, think I'm gonna need something for the winter.
Among the many possible reasons for your feeling cold is one that affected me recently: hypothyroidism (underactive thyroid gland). A test of your thyroid hormone levels could rule that out. In my case, the simple fix was taking a low-dose levothyroxine pill every morning.
Good luck!
I will have a word with doctor when I go. Thank you.
I have been getting SO cold I shiver for hours and my hands shake. I thought I was the only one with this problem. I went into Treliske hospital in Truro yesterday morning and had blood tests, urine tests and throat swab because I have got Candida on my tongue. It gives me a bad taste and therefore my appetite has gone down. I have been given Amoxicillin for a week to see if that does anything ? I am 76.
I dont have any other symptoms at the minute that I'm aware off just the freezing cold.
Donnax
You may want to have your thyroid checked. I too am menapausal and I'm always hot. I'm normally sweating most of the time. About a year ago I noticed every afternoon around 4 PM I would start freezing. Totally out of my sweaty norm. I talked to my hematologist oncologist about it because I thought it was CLL related. She did a blood test specifically looking at the thyroid hormones. I think it was called a T4 test . My results came back really low indicating that I have hypothyroidism. This may not be the case for you but it just sounded so similar I thought it may be worth mentioning to you. Is it your whole body that gets cd or just hands and feet?
It's mostly hands feet and legs so far. I've just had my bloods done this morning so will see if something shows up then ask about testing for that next.
I'm also always hot so this is different to me, and I dont think I like it lol.
Donnax
Get checked for Hypothyroidism. Blood test
Will get them to check for that next.
Back when I was diagnosed, my GP commented that CLL is like having the flu every day. Maybe "every day" is a stretch but I get "flu-like" symptoms routinely (have for a lot of years already), including the chills (like today) and short-term sore throat with swollen neck glands, etc. Sometimes I wake up feeling like I'm starting a 5-6 day cold/flu but by noon or mid-afternoon I feel fine again. A lot of these flu-like symptoms, for me, last less than a day; sometimes only an hour or two and then I wonder if I somehow dreamt feeling godawful earlier that day.
My doctor told me the same thing. It’s feeling like you are coming down with something, but not actually getting it every time!
Funny you should say that I occasionally wake up with a sore throat but goes later in the day or next day. I have also been having a lot of pain in my neck the last couple of months, doctors sent me to physiotherapy she gave me some exercises to do but it just makes it worse, she is ringing me again on Thursday.
Not what you're looking for?
You may also like...
feeling cold when its hot
Hi there I have had CLL for 10 years now don't' need to have a treatment just yet but I need an...
Feeling very depressed.
I have for some time been feeling very low, I’m a proud man and never ask for help from anyone but
Feeling very annoyed
causing him major pain. His temperature has been up and he is very lethargic.....I am so annoyed...
Cold
there everyone. About 4 weeks ago my husband got a bad cold. He just can’t seem to shake it and...
A COLD AND VENETOCLAX
Hi all….has anyone had a cold and paused Venetoclax? Still waiting to hear back from my Oncologist.
On calaquence and cold all the time
Repetitive cold infection
Cold showers - good or bad?
Any post FCR warriors struggling with the cold?
Head cold and aching body 
