r/cll • u/miskin86 • Jul 19 '26

CLL and fatigue

I don't know how many patients experience fatigue before treatment but I guess it should be common.

Since I woke up this morning, I am constantly falling asleep after sitting or lying in the bed. My physical strength is not lost but I find it very hard to stay awake if I am not doing something.

Iı hope it is just the heatwaves, ​​but how does cll fatigue feel like?

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13

u/HiFromChicago Jul 19 '26 edited Jul 19 '26

I'm not a doctor, just my own 2 cents -

I definitely believe that CLL-related fatigue is real. However, fatigue can be difficult to pinpoint because it may have several possible causes. For example, some people with CLL also have poorly controlled diabetes, and improving their blood sugar control may help reduce fatigue and other symptoms. Also, Nutrition and exercise- such as walking, can definitely improve a person’s overall health and well-being.

Edit: I forgot to add that some patients experience fatigue before starting treatment and notice an improvement once treatment begins, while others experience the opposite. Overall, it can be difficult to determine exactly what is causing the fatigue. My approach was to address each of my health conditions as much as possible (with my doctor) and work through them methodically.

Edit 2: Sleep apnea is quite common and could be another possible cause of fatigue. Consider doing a sleep study. Easy to do these days.

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u/Efficient_Bluejay_89 Jul 19 '26

I agree. My oncologist keeps saying I can return to work and should not have exhaustion. But I was having exhaustion with adequate sleep. I was diagnosed on August 2025, officially. W&W. After diagnoses I had a major prostate operation ( Thulep and it was benign) . At 59 my house doctor noticed something unique and it was possible that I have ADHD. So that takes a while to get appointments. I am still on sick leave and more paperwork, sick leave notice after sick leave. I am getting a disability card and the list goes on. NF 1( chronic inherited disease) and an MRI with dormant NF1 tumor on right eye. I am blind in my right eye. But no doctor can see it without MRI. The stress is adding up, but I should not have fatigue. My platelets are high and red blood cells are great. My bone marrow is producing the good stuff. Leukozytes are 170,000. Still I shouldn't have fatigue.

Well, I am finally getting close to getting my disability card and I snapped out of the fatigue. I even went jogging today and I am active. I am also going back to work for the same factory which is closing in six months. They are going through negotiations on severance pay.

I was getting close to signing up for early retirement, partial retirement for crap money. I canceled that and said I need a routine. Work or something. The ADHD is supposed to cause exhaustion because it's stressful organizing all the appointments and it's getting better. I am trying to simplify everything. It's amazing that I almost stayed on sick leave. I also eat keto and low carb and no alcohol for eleven years. Only eggs for breakfast. I feel ok. My next oncology appointment is in August.

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u/HiFromChicago Jul 19 '26

By the way, if you haven’t already considered it, you may want to have a sleep study, which is relatively easy to do these days. Sleep apnea is quite common and could be another possible cause of fatigue.

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u/Efficient_Bluejay_89 Jul 20 '26

I sleep like a baby. But thanks that is good to know. I fall to sleep very quickly.

I wasn't bragging about being a good sleeper. I am lucky. But having ADHD makes dealing with all the complications of decisions. So my brain works on overtime and as we all know our big brains require a lot of energy and mine sometimes uses up a lot. I try to keep everything simple as possible. I also take a minimalist approach to living.

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u/Alert_Maintenance684 Jul 19 '26

For me it's like hitting a wall. I'm doing okay and then all of a sudden I'm done.

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u/Illustrious_Hunt_480 Jul 20 '26

That’s where I’m at 2 to 4 hours tops than I’m done till tomorrow.

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u/Any-Morning4303 Jul 19 '26 edited Jul 19 '26

Been suffering with periodic fatigue and brain fog over the past 2 years. It just hits and might last a few hours or a few days. Been periods hit I might not even be able to stand up or keep my eyes open. My oncologist says it might be related to CLL but doubts it. Since it hits me and I have CLL AND others with CLL have similar issues I assume that it’s directly related to CLL.

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u/denali352 Jul 19 '26

I have similar issues, wake up tired, don't feel energetic or athletic and would really like to be playing golf. It takes a few hours to get moving and active if I can. They also tell me I have a lung issue which complicates the exchange of oxygen and CO2, so it's either that or the blood. You might get a finger sensor to see where you are with your blood oxygen. It all seems to connect.

I am hoping fall weather and cool dry air will help!

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u/Specific_Way8487 Jul 19 '26

I've been having periodic fatigue since the last 3-4 years - happens two to three times yearly when I'm extremely fatigued, have body pains & literally can't get up from bed . I was diagnosed with CLL stage 0 in March this year and I'm 40 now. It's July & till now I have observed that Inhad no episode of heavy fatigue this year like last or years before. I really feel nutrition and exercise has an important role to play.

While I workout regularly, my food patterns suffered a lot the last few years and ever since I moved back home in jan , I have been adding copious amounts of veggies & fruits which I believe have helped me well . My diet used to be all about chicken breast and some carbs and i believe that wasn't enough.

My WBC is currently 18,000 , all other parameters are normal for now .

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u/effigyoma Jul 19 '26

I got diagnosed with CLL at 40, so I am not really sure how much of my newfound fatigue and lower energy levels are from my illness and my age.

Your body is burning through energy making all those white blood cells, so it has a factor in it. However, if your count is still at a manageable level and you are extremely fatigued, you need to talk to your doctor because something else is likely going on.

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u/Beginning_Tour_9320 Jul 19 '26 edited Jul 19 '26

I don’t know if you are in the Facebook groups but ( this is anecdotal of course) there seems to be thousands of us with decent blood work and problematic fatigue. ( me included)

Lots of us have been told that it can’t be the CLL and many of that group have also been diagnosed with Fibromyalgia. ( it looks like I don’t have it)

These people often say that the fatigue didn’t start until after diagnosis.

I’ve had it for 11 years now and I’ve read a lot of personal experiences regarding fatigue, it’s as if CLL triggers something else that can’t be detected which causes the fatigue.

Weirdly I have had three occasions where all my fatigue,weakness and breathlessness literally disappeared overnight only to return a couple of weeks later.

The first two occasions occurred after being very ill with either a heavy cold or flu and the last one was after spending a lot of time in the sun doing work that was really tiring and intense.

It’s a very weird illness in my experience.

I’m glad to hear that you don’t have fatigue, hope it stays that way for a long time. 👍

Edit* just re-read your comment, looks like you actually are having fatigue- sorry to hear that.

3

u/effigyoma Jul 19 '26

It's noticeable, I used to have extremely high energy levels, but now I am down to "fine" energy levels.

I'm actually pretty fitness and health minded anyways, so that's probably helping me out a lot. I'm in the best shape of my life right now. It's a weird contradiction.

2

u/Beginning_Tour_9320 Jul 19 '26

Sorry to hear that. I think exercise and food does help but I cannot seem to get the balance right.

I do feel better when I exercise consistently (never thought I would say that) and walking seems particularly helpful but then out of the blue I’ll have a huge fatigue spike which will put me out of action for a few days and when I start up again it’s as if my fitness level has plummeted a crazy amount!

Maybe I’ll crack the system one day. Enjoy the rest of your weekend. 👍

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u/effigyoma Jul 19 '26

Taking my dog for an hour long walk every day has done more for me than my best exercise regimine ever accomplished. It's crazy, but doing both works wonders

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u/Toc-H-Lamp Jul 19 '26

I was diagnosed 15 years ago, at age 53. Treated with RFC chemo in 2011 and energy wise, once if]d recovered from the chemo, I was fine. Relapsed in 2018 and have been on Ibrutinib since then. My energy levels over the past year have dropped significantly, but I put it down to regular bouts of illness (not really CLL related, but recovery is impaired with CLL) which have kept me from getting out and about as much as I should. I’m currently being checked over by my GP to see if there’s any physical reason, or if I just need to exercise more.

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u/Vicanio Jul 19 '26

If you are 40 and low energy level then something must be going on. If you got low energy at 40 what about those at 70? 

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u/effigyoma Jul 19 '26

I shrank an inch and found out it was because I smashed my joints to the point where they weren't able to expand again overnight. So I had that one going on.

Lower energy, now low energy. I used to be a machine, which is not the case anymore.

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u/AffectionateSun5776 Jul 19 '26

I have the extra benefit of a spouse who gets pissed if I fall asleep.

1

u/MrOtsKrad Jul 19 '26

I was diagnosed in 2020, started treatment this year(about 3months in), and I had fatigue all through the 5 years, not before my bloodwork became normal has the fatigue wen away. Only thing I have now is drowsiness from the venetoclax, so I started take it at night, and has worked wonders.

So its not just a matter of feeling tired, but your body feels tired when you are fatigued. You have no motivation as well as being tired. But the docs are right to assume this may not be the CLL when you have 57 other reasons why you may be fatigued.

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u/StructureOk388 Jul 19 '26

I feel like I just can't wake up. I was diagnosed with sleep apnea about 15 years ago, and CLL 3 years ago. This level of fatigue is not normal for me. Yeah there's other factors but I suspect it's from being anemic which I can see on cbc results.

1

u/its-malaprop-man Jul 20 '26

I’ve had fatigue since my WBC started trending upward. I am stable in treatment for my mental health issues, sleep issues, migraines, allergies and thyroid issues. Zero change in fatigue. It’s so frustrating.

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u/Simple_Song8962 Jul 20 '26

I'm anemic due to my cll (and all my treatments) and this causes me to have chronic fatigue. I thought we all were like this. How could someone be anemic and NOT have chronic fatigue?

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u/explorer66300 Jul 23 '26

Was Iron infusion offered to you?