CLL constant tiredness: I've been diagnosed with... - CLL Support

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CLL constant tiredness

GD-K profile image

I've been diagnosed with CLL. It's in the early stages and I'm told not to panic about it too much yet . I can feel the symptoms starting to kick in though. One infection after another which the doctors are helping me with but what I can't deal with is the tiredness. Just completely exhausted constantly and I just don't know how to deal with it. Has anyone else experienced this and found a practical solution that at least helps.

15 Replies

Hi GD-K, so sorry to hear that you are struggling with symptoms of your CLL and hope that you can find a way to cope with them soon.

I was diagnosed with CLL in 2015 after years of recurring flu like infections which were explained away as being due to exposure ( I was working in a hospital ), stress ( yes, I was working in a hospital! ) over exercising ( CMA 10-12 hours a week and keeping an alotment )

I’m so sorry you are feeling like that. Unfortunately you are not alone. It’s 11:30 am here in London and after briefly getting up to make sure the kids left to school on time, I went back to sleep and I’m still in bed now! And feel like going back to sleep again.....

Some people do find treatment improves their fatigue and mine is indeed better than it was before I was treated. But not back to normal.

GD-K profile image
GD-K in reply to AdrianUK

Thank you for replying. Most kind. May I ask a question. I'm being told there is no treatment at the moment. What treatment did you have?

sllincolorado profile image
sllincolorado in reply to GD-K

What country do you live in - because that may impact some of our suggestions. One of my docs goals with determining when to start treatment was to start before I started getting infections because that becomes a slippery slope. You can be tired from the infections - you can become more prone to additional infections. I have noticed we all have different suggestions for tiredness. Since I work and I am not opposed to caffeine, I start with a very strong cup of tea in the morning and another less strong one before lunch. Not a perfect solution but usually helps me get through the day. The other thing I do when I feel I am starting to get tired is to go outside for a walk even a few minutes seems to make a difference.

Sending you healing thoughts -

(Sorry for that my big fingers and a small phone!). Anyway with further investigation my CLL has been shown to have the correct profile for a good prognosis I am on W&W and I have been told that I may never need treatment. Of course that's very good news for me, but it meant that my haematologist did not accept that any of the symptoms ( breathlessness, the sudden extreme fatigue that could come on in an instant and the muscle and bone aches) were due to my CLL. This caused me a lot of distress and a long fruitless search for the "cause" of my symptoms including counselling with CBT, anti anxiety drugs and eventually a very reluctant diagnosis of fibromyalgia. I retired early due to ill health this year at 63 after a lot of stressful meetings with management and Occupational Health and I can now pace myself through the day although there is no improvement in my symptoms. I have not been offered anything and haven't found anything yet that has improved my quality of life and find the fatigue has had a huge impact on me as I never feel able to commit to anything because I can not be sure how I will be.

What I am trying to get across is that you are the best expert on your own health and that it's so important that you have at least one strong ally on your side ( I have a brilliantly supportive GP ) or you can be constantly doubting yourself which certainly isn't good for mental health. This community is so supportive and the best place to get advice as we are all experts on our illness and know how the same blood results can affect people so differently. You will be believed and supported by this community as we know what it's really like.

Sorry for droning on so much about myself and hope that we can both find some helpful answers to this very common and underestimated problem.

Hi GD

Forgive the grammar

So to be honest my CLL is considered mild with a WBC in the 28 to 32 range

Doesn’t really feel like that to me but that’s what they tell me and when trying to live in a before CLL fashion it just kicked my butt mentally and physically

I was already really good at kicking myself mentally and intense activity was my control method which just got me constantly sick starting in 2017

This went on until summer of 2019 when I was completely fried in every way possible and I took a leave from work and I am just sort of recovered

For me despite walking everyday and going to the Gym with my BIL I just have to realize I am limited and will make a decision in early 2020 about how much work I can do in the future

I wasn’t really planning to due nothing but am finding it really hard to be allowed to work in moderation

GD-K profile image
GD-K in reply to Tommays56

Thank you for taking the time to reply. It's good to know I'm not alone . Right now lifer just doesn't seem worth living but I'll fight on and hope it gets easier. Thank s

JigFettler profile image
JigFettlerVolunteer

1099 to be exact Scott, 558 for "tired".

;-)

JigFettler profile image
JigFettlerVolunteer

Fatigue is the biggest issue for us all. The reason relates to cytokine production, to which we all react slightly differently.

How to cope?

If you search the Forum for "fatigue" you get 1099 hits, for "tired"558. Testifies to how much discussion there is on this,

No easy answer.

Check with your Family Dr for:

Thyroid, Sugar, Vitamin levels, Anaemia, Heart strength, side effects to drugs etc and so on first. BP. Ideal weight too...

Fitness is important, enough water and eat well.

Judicious rest.

It is hard. Like many I know, Ive been there.

Kind regards

Jig

GD-K profile image
GD-K in reply to JigFettler

Thank you for taking the time to reply. It's good to know I'm not alone . Right now lifer just doesn't seem worth living but I'll fight on and hope it gets easier. Thank s

Hello GD-K, I am 51 dx a little over 2.5 years ago. My main issue is dealing with the fatigue. I do get infections frequently. I have had c-diff, pneumonia and numerous sinus infections.

I am in w and w. 13 q deleted which doc says good prognosis. WBC range anywhere from 28K to 52K. Hemoglobin range from 11.5 to 13.5. Platelets are good.

My current doc says no way the fatigue is coming from the Cll. I swear it feels like it is cause since dx the fatigue has gotten worse and now I have some shortness of breathe and some dizziness. I am going to another doc a week from today to get a second opinion since this current doc got nothing for me other than do more moderate exercise and maybe try some yoga???

I must admit mild exercise does make me feel better but is not solving the issue of fatigue in which it feels like I can sleep most of the day as some days are better than others.

Hope you start feeling better soon. Happy holidays.

GD-K profile image
GD-K in reply to Dew77

Thank you for taking the time to reply. It's good to know I'm not alone . Right now lifer just doesn't seem worth living but I'll fight on and hope it gets easier. Thank s

Thank you for taking the time to reply. It's good to know I'm not alone . Right now lifer just doesn't seem worth living but I'll fight on and hope it gets easier. Thank s

GD-K,

I feel ya in the Fatigue area, I'm 54,I was diagnosed January 15th,2018, my main symptoms were severe night sweats,pain in my lower abdomen(I thought it was Kidney stone pain), AND fatigue, a CT scan showed abnormal Lymph Nodes in the lower abdomen,and after another CT scan with Biopsy, I was diagnosed with CLL, I was W&W,and within 2 months, I went from Stage 1 to Stage 2(almost Stage 3) and was put on Imbruvica,but within that time frame, I was put on Short-term Disability,and after 6 months of STD, I went to Long-term Disability and was terminated from my job(yes, it's legal for them to do that),my blood work is like a rollarcoaster, one month,most of the numbers look good, then the next month,they're sky high( last month,my WBC was 20K, this month,it's at 45K), All I say to you is take things one day at a time(sometimes it has to be one hour at a time),listen to your body, if you need to take a nap in the middle of the day, do it. You are not alone with your fatigue,just breathe and try to relax

Frenchie

GD-K profile image
GD-K in reply to tonyfrench

Thanks for the reply. Good to k ow I'm not alone. Thank you

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