What do you do to deal with or help yo... - CLL America Support

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What do you do to deal with or help your CLL-related fatigue?

tclementi profile imagetclementi13 Voters

Please select all that apply:

10 Replies
Ducksoup profile image
Ducksoup

I feel like my otherwise wonderful oncologist is far too dismissive of my fatigue. I'm frustrated that this aspect of the disease is not taken more seriously.

jtaeross profile image
jtaeross in reply toDucksoup

I agree.

tclementi profile image
tclementi in reply tojtaeross

I hear you, ducksoup and jtaeross - hopefully the more patients and advocacy groups speak about this topic, the more doctors and pharma will pay attention!

I generally limit my work day to 3-4 hours. If I try to go longer I become completely exhausted.

tclementi profile image
tclementi in reply to

Good point!

jtaeross profile image
jtaeross

I exercise most every day. I have accommodations at work (flexible schedule). On "cancer days" (that's when I feel unusually exhausted for no reason and have to perform), I take 5mg of prednisone (once a month?). I don't know why prednisone helps. On rare occasions, I will take 2.5mg of dexedrine (half of a pill). Fatigue and stamina are very hard to deal with. I have to work full time.

tclementi profile image
tclementi in reply tojtaeross

Thanks for sharing what works for you!

Ducksoup profile image
Ducksoup

I'm fortunate that I don't have to work full time. I simply wouldn't be able to make a living. And I'm still in Stage 1--it could get way worse.

Bellarosez profile image
Bellarosez

My oncologist said to have as much coffee as I need to combat fatigue - but to make sure I drink lots & lots of water in between cups. This actually worked for me but I wanted a more natural approach so I gave up sugar (all forms of sucrose) one and a half years ago - my fatigue is rare now!

I recently read an article by a CLL specialist at MD Anderson - he said the fatigue is caused by cytokines in our systems. Non-CLLers only produce them when they have a cold or the flu & it's the thing that makes people so tired with those infections. Cll-ers have cytokines present all the time. He suggested Ritalin for fatigue.

tclementi profile image
tclementi in reply toBellarosez

I'm so glad coffee and cutting out sugar has helped you!

Thanks for sharing that info- it's really interesting. We have a video too that discusses it here-patientpower.info/video/im-...

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