CLL

[Pezza123]

Hi I was diagnosed with CLL 2 years ago and am on watch and wait. I have also suffered with chronic fatigue syndrome (ME) for a number of years and wondered if anyone else has these two conditions and what effect it is having on their condition as some symptoms are the same and I I’m really struggling with fatigue, sleep problems etc and would appreciate any advice please.

[Ricky234]

Hi Pezza

Welcome to our group, sorry to read about your fatigue issues.

I was diagnosed with a type of CLL called SLL and put on watch and wait quite a few years ago myself. Fatigue has been a challenge for me at times, it has reduced a lot following treatment.. Reading about CLL, it seems that fatigue issues are very common in CLL patients, it is listed as the number one symptom in the Leukaemia Care CLL patient booklet, leukaemiacare.org.uk/resour... It would be very interesting to learn, how others cope with this too?.

[HAIRBEAR_UK]

Hi Pezza,

Welcome, sorry to read you are struggling with fatigue. a CLL patient myself i have struggled at times with fatigue too, especially while on watch and wait and during treatment. I was on watch and wait for 7 years before treatment and tried many things. Pacing myself, sleeping enough and trying to exercise regularly seemed to be most productive. i admit though at timesIi had to just give in.

There is a blog written by Leukaemia available here leukaemiacare.org.uk/blog/c... i am sure others with experience will reply soon.

I am sure others will share their experience soon

Another good source of information for CLL people is the CLLSA group here on HU, this is a search return for fatigue discussions by CLl patients, there are many: healthunlocked.com/search/f...

Nick

[littledab]

Hi Penza

I get the same, very hard for me.. as i know for you also. Cause you want to be active... but this is what it does, i try to do what I can, and learn to rest if i can’t do any more..

take care

Littledab