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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLeukemiaTeam Member asked a question in Side Effects group 💭

I was diagnosed with CLL a year and a half ago. Dropped down to 123lbs from 180ish. I have a few issues that I cannot find any answers to and was wondering if anyone else had these? I cannot sleep more than 4 hrs. I walk around in a haze all day but my body will not allow to sleep. Secondly is Im short of breath. Dr keeps telling me "it's nothing, it will get better" and so on. I was a person who was running 3 to 7 miles several times a week and I cannot bounce back no matter how much I try to… read more

August 4, 2025
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A MyLeukemiaTeam Member

We have a lot in common. My first year with CLL I was a runner and visited the gym 3 times a week. My doctor was surprised about my high energy & health? I know my lung capcity is 4 liters. I also during the second year had that breathing situtation when I am at the gym lifting wieghts and find myself breathing harder? I think those excess bad WBC collect in the lungs and are a problem? My sleep has been regular but I do wake after 2 to 4 hours and try to get 7 to 8 hours in bed. I noticed in the evening my feet (extremity) are cool so I cover them with a blanket. I think this may be those excess WBC pooling and reducing my warmth? When I workout or walk excessive I developed a skin color change (pink, then reddish, then purple) that gets darker (damaged) the more I exercise. I know this is the excess WBC bursting the capilarieries in the skin. It took several months to clear up because I did not know I should rest a few days so the skin could recover? I like the idea of you wearing warmer clothes to keep you circulation flowing? Your body may not be working but your approach to stay warm is helping the flow moving with heat? Those excess WBC do cause some interesting concerns which not every doctor knows about nor do they recommend solutions? Only in the past year has information come out that those bad WBC do cause nerve damage by attacking good cells. People discuss "brain fog" but do not know about possible damage by bad WBC attacking the nervous system? The skin is the biggest organ in the body and there can be all types of problems caused by attacks of bad cells attacking good cells? I had read last autumn that in the nose and sinus it has been determined the excess WBC collect to attack invaders entering the body from the air. There is much which is not known by doctors who may be learning as they treat people with their illness? I think we learn more from others then from medical people? I think the more you learn the better you will be able to resolve your health problems?

August 7, 2025
MyLeukemiaTeam

The symptoms you're describing are common with CLL and its treatments. Many people with CLL experience severe fatigue that doesn't improve with rest, along with shortness of breath. These symptoms can significantly impact daily activities and exercise tolerance, especially if you were previously very active.

Common Show Full Answer

The symptoms you're describing are common with CLL and its treatments. Many people with CLL experience severe fatigue that doesn't improve with rest, along with shortness of breath. These symptoms can significantly impact daily activities and exercise tolerance, especially if you were previously very active.

Common CLL-related symptoms include:
- Extreme tiredness that affects daily activities
- Shortness of breath that develops suddenly or worsens over time
- Difficulty with previously manageable physical activities
- General discomfort and malaise Treatment side effects can include:
- Neuropathy (nerve pain/tingling)
- Extreme tiredness
- Changes in temperature regulation
- Sleep disturbances

It's important to discuss these ongoing symptoms with your healthcare team, particularly if they're affecting your quality of life. Consider asking about palliative care options, which can help manage symptoms and side effects while improving overall wellbeing. Many people find that pacing themselves and taking rest breaks helps manage fatigue and breathing difficulties.

August 4, 2025

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