What do you do to deal with or help yo... - CLL America Support
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.
I generally limit my work day to 3-4 hours. If I try to go longer I become completely exhausted.
Good point!
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.
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.
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.
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-...