I was just changed from monthly blood tests to 6 months and 6 month check ups....the doc said I was stable and there was a good chance i would never need treatment. I am 76 and maybe he thought I would naturally not live that long. Anyway, my concern is this ongoing fatigue that smacks me in the face at times. I take a nap every afternoon. I did just have a covid vac and it knocked the crap out of me.....I was told I have probably had CLL for 2 years and there should be no symptoms.....but today I am wiped out again just doing a few things around the house....is this normal? I lay down for a few minutes and it is better...I just dont like it....I have one kidney left and that is damaged. i was told if I dont exercise, which I cant when I am dragged out, the kidney will have to do more work and has already decreased in function slightly.........do I start preparing my will or just take a nap...
fatigue: I was just changed from monthly blood... - CLL Support
fatigue
Hi Diane,
CLL related fatigue is probably the most challenging symptom we all face. We have nearly 1,700 posts mentioning fatigue! healthunlocked.com/cllsuppo...
Rather than focusing on your will, do what you can to exercise; it really does help with CLL related fatigue and comes up all the time as the most promising intervention to extend life expectancy. healthunlocked.com/cllsuppo...
That said, there are times when CLL related fatigue can only be addressed by having a nap - and that's okay too.
Neil
I am just concerned that it is so early in the disease and I am supposed to be stable enough to not be seen for 6 months....I have had no treatment. I just feel 'changed'
Fatigue was the only symptom I had prior to my stage 4 diagnosis. I had to learn to work around it for a further 11 years of watch and wait. I found it extremely frustrating that I just couldn't concentrate enough to do tasks that were previously easy to do. It's so annoying that with CLL, best practice is still not to treat. The problem is that even treatment isn't guaranteed to reduce fatigue.
M D Anderson checked whether Ruxolinib for symptom control in patients with chronic lymphocytic leukaemia: a single-group, phase 2 trial could help pubmed.ncbi.nlm.nih.gov/280...
As you can read, they found that Ruxolinib helped enough to warrant further research, but it's a very expensive treatment without guarantee of success.
Neil
I'm 4 years from diagnosis, And still on watch and wait because my numbers remain low. I've struggled with fatigue as well. There seems to be no pattern to it - for weeks I feel ok & suddenly I will feel exhausted for days... Exercise does help but some days it can be a struggle to do anything. It is generally worse ffor me in the afternoons & sometimes a cola (caffeine &sugar) plus exercise will help me thru the day. Good luck & if you find anything that helps let us know!
Gonna 2nd Neil. The most effective way to battle fatigue is the most counter-intuitive. Getting out to exercise will help give you more energy long term.
My suggestion is always to start the day with breakfast/coffee and then exercise and to work your way up very low and very slow. Walk as far as you can easily the 1st day - maybe it's just the mailbox and back, and then slowly add steps day by day, and week by week (even if it's just 10 more steps/day - 5 more away from your house and 5 back) til you are at 1/4 mile, then 1/2 mile, then a mile...and then just start adding steps until you feel like that's the routine you can do. And then just do it every day.
Whatever you can do will help. Don't think it has to be a lot to get an effect - every little bit counts.
I was walking around our 2 1/2 acre property at least once, sometimes 3 times a day...I just think I am too early into this thing to have days of such super fatigue....thank you for your advice and I know exercise is the trick.....just hard to move at times...is it too early to have this fight with myself?
You are getting good advice from others here. It is not necessarily the "degree" to which you have CLL/SLL that gives you fatigue - it is just having it that makes you fatigued. Fatigue has been the most pervasive symptom by far for me. Worse when I needed treatment (couldn't chew the salad I just made), to what it is now while I am in remission - similar to what you are experiencing. I cannot do all that I used to do (am ONLY 61 😄) but I limit home projects - cooking, cleaning, repotting porch plants, etc... - not the Olympics but I still have to limit and pace myself for day to day chores and responsibilities. I do gentle exercise - stretching, light weights and resistance bands, and marching - 5 days a week. Wishing you the best in adjusting to this diagnosis.
and that is just what I needed to know...it doesnt matter what stage or degree to have fatigue. With the oncologist brushing it off as old age or CLL being just a condition now due to my good blood tests (so far)....he says I may never need treatment so it had be baffled why i was so knocked out. Thanks to all of you it has helped me realize I just have to sleep on those days I need to sleep...I did sometime on the treadmill this morning and will gradually try to work that time up...today is a good day and I am trying to be as active as I can
As i said, the big thing was to know that this fatigue was normal at any stage....what would I do without this group?
No one can predict how the course of your fatigue will run. I could barely walk outside the house for a year (2016) on my first line of treatment and it took me more than two years (mid-2018) on my second treatment before I could walk 3km a day. I'm now on my third treatment and I have less energy than in mid-2018 even though my bone marrow has very low evidence of CLL. I can walk about 2km once a day but that's it.
Doctors told me that I needed to try harder but I always walked and biked everywhere before I got ill with CLL . I know they were well-meaning but it used to really annoy me. Pushing myself meant I would have to spend the following days in bed.
Even within the CLL community, many don't really understand just how severely debilitating fatigue is for some of us and that it can't be helped by pushing ourselves. I have just had to learn to live with it, and be grateful I'm still alive. But it certainly isn't easy to come to terms with.
Oh Diane, I so feel for you. Tiredness just hits us all at times. Maybe more so with CLL but I just put it down to aging. I am 71, reasonably fit but appreciate that I cannot do the things I did in my 40s. Just do what you can, when you can. I was diagnosed when I was 68 and started treatment three years later. Take care, stay warm and safe.
Hi Diane, Here is a suggestion for consideration: try doing a 2-3 strength exercises after your nap when you feel rested. I have been run/walking for years but it wasn't until I added 3 days a week of 2-3 strength exercises that I noticed a difference in my fatigue. After about 2 or 3 weeks I think you may feel a difference. -Lily
I'm gonna add more strength training! Good to know it might help.
One thing I found useful for fatigue was to improve my sleeping patterns and especially make sure that I got enough deep sleep. I used a fitbit to monitor sleep and work out what made a difference. Earlier bedtimes. Background soothing noise if I woke early. Etc. Concentration is still an issue, especially if I am recovering from frequent infections.
I find that going outside to exercise first thing in the morning is helpful. I’m also suffering from CLL fatigue and I often have to rest in the afternoons.
You all are angels and have relieved my mind and helped me so much. I had a bad reaction to my covid vac last week and feel like I had to recover from that.I hate it but I am learning that when 'it' hits to go directly to the couch and take a nap. It always hits some time in the afternoon and has become a regular thing. This spell of fatique has been worse and I wondered if I was getting ready for treatment....but you have answered my main question...is it normal to have fatigue so early in the game and you have told me yes it is...I also watch my diet pretty strictly and I know how good I felt when I was out walking every day. I live in the northeast, am 76, and dont cherish the thought of getting out in the cold and freezing weather to work out. I bought myself a portable cycle thing. I can sit in any chair and use it. I just need to get it out of the box. In the summer walks were part of my morning routine. Today we have a hard frost.
I also know stress has a lot to do with this. The stress of recovery from my covid vac and life in general but yesterday I took a few steps in changing some thing in my life to ease myself and that has already made a difference with me. Between the changes I have made and the messages and support you all have given me I feel a lot better and more worry free. I thought I was getting ready to make my final arrangements (smile)
I am so thankful to be part of this group and to have the reassurance you all have given me. You all are angels........and I thank you
Diane
Just wanted to add that there are other causes of fatigue that can coincide with CLL.
You could have your primary care look for things that are treatable like low thyroid, sleep apnea, and a list of other conditions
Hod bless
Skipro
I realize that. I have already had two cancers which took a bit out of me and I am pre-diabetic.....my doctor moved and i dont get to see him until February but I think I am ok now, thanks to life changes and the aid of all of you
Hi Diane, as you can see from the number of us who've posted after reading your message, fatigue is something that hits and (frustratingly) isn't predictable. Everyone here has given great feedback and advice, the only thing I'll add is that I found it helped to mix up my exercise and try to make it fun. So for me that meant going to the gym with a trainer who knew I might flake out half way through a session but would find something I could do and kept it challenging but fun, mixing it up. Some days I dragged myself there thinking it was a big mistake but most of the time it helped to get me out of the mind set of 'I'm so knackered' as I was chatting with my trainer and trying new things. Afterwards I always felt lighter even though I'd often want a nap by the time I got home. This is so easy to say and so hard to do but try to find the joy .... somewhere, it helps to feel lighter at a time when you often feel like your options are tightening around you and you find yourself down the rabbit hole of 'I used to be able to do ...... with ease'.
Good luck
I look at exercise as cleaning out those darn dead cells.......A long walk? "There, take that you dead cells!"......also I am told if I dont do it by exercise the kidney has to do it and I have only one damaged kidney.....so yes, i understand trying to make it fun....my personal contest to see how many dead cells I can clean out....beating the enemy in me :-)...again. I cant thank all of you enough. This has been the answer i was looking for and needed. Now to just have patience on those bad days....
Nuvigil---- WOW
After the up comes the down
Severe reaction to Phiser 6th jab.
Treatment already!!!
How I Deal With Fatigue
