Occassional Fatigue

[mpaull]

With CLL is there any drug or recommendation on what to take to lessen fatigue. I seem to get fatigue every two to three weeks that last for a day or two. I take vitamin supplements every day.

Thanks...Mitch

[helenolton]

Hi, I had fatigue it was so horrible. I work everyday and all I wanted to do was close my eyes and sleep at my desk. I started juicing and eating lots of vegetables and take black strap molasses and it has helped me.

Thanks

[mpaull in reply to helenolton]

Hi Helen, I too started juicing and eating more veggies. I will give the black strap molasses a try. It sounds like you're fatigue is or was more severe than I have could imagine. Hopefully your a little better now????

[Cllcanada Top Poster CURE Hero]

Hi Mitch

I was forced on long term disability for 14 years due to what is called CLL fatigue. Not much you can do except eat well and exercise, improve your overall health... some patients get relief from Ritalin, but it did nothing for me...

Talk to your doctor... and if you have neck node enlargement a sleep study might be in order, because nodes can cause or effect sleep apnea...

Hope you find some answers...

~chris

[mpaull in reply to Cllcanada]

Thanks Chris! I will ask. I am so sorry that you have dealt with fatigue that long. I like the idea of a sleep study. I wasn't fatigued until I was told I have CLL. Hopefully mind is not playing tricks.

[Cllcanada Top Poster CURE Hero in reply to mpaull]

Actually CLL fatigue is not really fatigue... it is thought to be a chemical imbalance in the immune system...that triggers the feeling of being 'sick'... which we incorrectly interpret as fatigue...

So...it is more sick than tired... cytokines and chemokines are out of wack...

It iscactually caused by the good B cells we have, and as CLL progresses the balance changes and the feeling of sick and tired tends to lift....

~chris

[JosephVidmar in reply to Cllcanada]

Chris, I have enjoyed and learned a lot from your posts, but this one is incredible. Did I hear this correctly, that as the CLL gets worse, we begin to feel better with more energy? Would you expand on this please? No one seems to have a handle on the fatigue syndrome.

Joseph

[Cllcanada Top Poster CURE Hero in reply to JosephVidmar]

Hi Joseph...

Well it did in my case and other CLL patients have reported similar observations... as CLL progressed my fatigue lifted, but also I lost a great deal of weight through exercise... so who knows.

Dr. Keating thought it was caused by good B cells and as the balance shifts and malignant cells prolipherate, then the fatigue or sickness lifts.

However it is insidious... after treatment for CLL my fatigue totally vanished and I felt 20 years younger... so it was impacting me, but very slowly over 14 years...

Although my counts are escalating again... after 6 rounds of FR, 6 rounds of RCHOP and a brief and bloody encounter with Imbruvica (ibrutinib) a year ago, my fatigue has never returned... and it has been 4 years... post chemoimmunotherapy.

However, on days I don't brisk walk now, the fatigue begins to fall again like a veil...

Causation and attribution... hard to say...

~chris

[mpaull in reply to Cllcanada]

Hi Chris, I wanted to reply to you again. You mentioned CLL fatigue and 14 years of long term disability. That is such a long time to be down for the count. Were you able to do anything? We're you able to do any of the day to day stuff at home? Is it just sitting in a chair with no energy? I feel I am going down this road and asking how you were able to cope and what you did to alleviate some things. If you get time to respond...great! If not that's ok too! Mitch L