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I have CLL, frankly, I’m getting very tired of complaining about FATIGUE but

A MyLeukemiaTeam Member asked a question 💭
Toledo, OH

It comes on somewhat fast and leaves me needing to lay down. So here comes my request. I’d appreciate if others would tell me about the fatigue you are experiencing. I fell like I’m the only one ( although I know I am not ). It’s difficult. I’m planning a trip down to Florida to see my my son, his wife and my granddaughter but frankly, I don’t know how I’m gonna do it

October 16, 2024
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Answer Summary

Members connected deeply over the exhausting reality of CLL-related fatigue, describing how it strikes suddenly and demands immediate rest,... Read more

Members connected deeply over the exhausting reality of CLL-related fatigue, describing how it strikes suddenly and demands immediate rest, often derailing daily plans and making even simple activities feel impossible. Several members shared practical strategies that have helped them cope, including pacing activities throughout the day, scheduling regular naps without guilt, planning rest time into travel and visits, communicating openly with family about limitations, and for those on treatment like Brukinsa or Calquence, noticing gradual energy improvements as white blood cell counts decreased. A recurring theme was the importance of listening to your body instead of fighting it, accepting that fatigue is part of the disease rather than laziness, building supportive networks of family and friends who understand when you need to stop, and finding ways to still enjoy meaningful experiences like family visits by building in rest periods and letting go of the pressure to do everything.

A MyLeukemiaTeam Member

Hopefully we can all find peace in knowing we don't NEED to get everything done in one day. If we're tired, accept it, embrace it, relax and try it again tomorrow. Enjoy the blessed time we do have. We are luckier than some.

April 1, 2025
A MyLeukemiaTeam Member

Listen to your body rest when possible, a good healthy diet is important also small portions of food regularly puts less stress on body and is better to conserve energy wherever possible
All the best.. eat greens . Chamomile tea and coriander ✌️

August 7, 2025
A MyLeukemiaTeam Member

John, you are definitely not alone. Fatigue has been my major complaint since diagnosis. As the years go by, it seems like the fatigue gets worse. Even though my numbers are good, I still have the fatigue.
Our bodies are in a constant battle to fight and destroy cancer cells. Most of the time, our B and T cells only go into fight mode if we have an infection, but with leukemia, they are fighting all the time and of course that affects how we feel.
It's very frustrating to a person that has been active for all of their life but it's what we have to deal with.
We have to pace our activities, take a rest when needed and get lots of sleep including naps. Our body will heal when we sleep and allow everything to slow down for a while.
It's the pits but it's what we're dealt with. I hope you are doing well otherwise. 😊

October 16, 2024
A MyLeukemiaTeam Member

Hey John yes it's it's a continual thing the hire your wbcs the worst of fatigue I dealt with it for almost four and a half years sometimes I would have to sleep all day long with no energy so you're not alone but I will tell you that it wasn't until I started getting treatment and I'm probably sounding like a broken record Brukinsa killed cancer cells lowering my infected wbcs it wasn't until my wbc's got down to 18 to 9000 that I started getting energy back not having to sleep all day at least for me I tried diet I tried vitamin B12 I tried vitamin d none of it worked I hope this helps God bless you have a great day

October 16, 2024
A MyLeukemiaTeam Member

We all have many days of feeling too tired to do anything. Our bodies are fighting the best it can but it needs extra rest.

April 4, 2025

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Has anyone experienced extreme fatigue before getting treatment for CLL?

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Decatur, GA

What is up with Wait & Watch? It seems to me that CLL is the only diagnosis for which Early Detection is irrelevant. Why wait to treat?

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Entiat, WA

As I acquired CLL from poisons (Dieldrin) which has been banned world wide, I believe it’s the same family as agent orange.

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