W&W for 17 years, numbers going up recently.
For several years, on most days I wake up with a groggy head. I want to just close my eyes, put my head back on the pillow and sleep.
At times, I've gotten into bed again and slept for 15-20 hours, but I've learned that if I force myself to stay up and fight the urge I eventually 'wake up'.
I don't have body tiredness, just the feeling in my head.
Anyone else have the same experience?
TIA.
Andrew
Head and body exhaustion..... If I'm lucky enough to get any sleep, it would be for no more than 4 hours, on a really good night.... My dad was also a terrible sleeper.... Hereditary?
Andrew,
I experience what I call "weariness" I am most aware of being weary/slugglish when I get out of bed each day. The awareness is there off and on all day, but not there at all when I am doing my exercise walking in the neighborhood. I suppose, if I were a cartoon character, there would be a dark cloud over my head wherever I went.
For the most part, I do not do much that is physically taxing anymore but, I am 81 and also having some cardio issues that are most likely slowing me down, too.
I did not experience as much fatigue for my first 20 years of Watch and Wait.
During the day I find if I close my eyes the grogginess is still there. I try to keep going to avoid that feeling.
Andrew,
That is a good practice in regard to CLL fatigue. I do hope, however, when a rest is needed, you will take it. I have been instructed (forget which Dr.) to take a 30 minute nap time daily. I don't do it very often, however. I don't notice the heaviness of fatigue when I am moving about. I am most aware of it around 6:30 PM when I am ready to turn on the news and veg out in front of the TV.
You are still on WandW? I am in treatment, so that also is a factor of difference.
My labs were consistent for 17 years but now they are changing. I go to see my Doc on Thursday and am trying to get up to speed.
Thanks.
If I can make myself take a 15 minute walk, I usually feel better. I wonder if some of the fatigue/tiredness is "non optimal" oxygenation of our body. I am at high altitude (6200-7200 feet) so this effect is more pronounced.
Plus, IMO if you don't get real, actual sunlight in your eyes for at least a few minutes early in the AM or whenever you first wake up, your melatonin cycle is thrown off contributing to daytime exhaustion. I have a little full spectrum lightbulb in each room, I turn it on for the first few hours of the day if I can't get outside or if it's grey/overcast. I do notice a difference.
I am hoping with long covid research people with CLL might benefit from the findings.
It is all in the brain for me. I can jog or lift weights fine but I could be endlessly yawning at the same time. Purely cognition impacts. Thinking is really slow. I'm in my thirties so very concerned.
Me. Feel the same way
Bizarrely I have not had any fatigue at all, was diagnosed Nov 2020 stage 4. Never had an abnormal WBC. CLL is such a individual experience. Keep safe.
Hi I was diagnosed last year, but I’ve had fatigue for over ten years and it has gotten gradually worse over time. Doctors ignored my concern over my fatigue because I still tried to maintain a lot of activity.
Up until four years ago I was able to nap around my schedule and was able to alter my life around the fatigue. I had my own business and could do so . I didn’t have body tiredness just the feeling in my head that you described. I was also able to be more active because my body wasn’t tired.
Now the fatigue has worsened, I’m needing naps daily to being in bed by4:30 if I don’t take a nap. It can be very debilitating where I can’t stay awake at all. I may sleep 24 hours straight and just waking for water and the bathroom. Sometimes I am so exhausted that sitting upright and just walking across a room is too much.
It does cause me to have foggy brain…I recognize I need to do mental activities that require a great deal of attention before noon each day because after that mental fatigue sets in a bit.
The things that have helped me are: if I am able to go for a short walk in fresh air, doing a small qi gong routine, and acupuncture.
The weird thing is the insomnia that I get too!!
Hope this helps.
Hi gardener58,
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We had two discussions on fatigue 4 days ago, here is my long response that might have some useful suggestions that you may want to explore: healthunlocked.com/cllsuppo...
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You also can read some of the many replies here: healthunlocked.com/cllsuppo...?
and here: healthunlocked.com/cllsuppo...?
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As well as the list of 1450 postings that mention fatigue: healthunlocked.com/cllsuppo...
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Len
Sorry. I'll use the search feature from now on. I should know better.
Hi gardener58,
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No problem, no need to apologize. -
I do many responses like that each week,
I feel that I am following the old saying: "Give a man a fish....teach a man to fish" en.wikipedia.org/wiki/Give_...
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Introducing our members to the search feature and the "Related Posts" box on every page seems to be my primary role here.
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So if you want to help, please feel free.
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Len
Hi MistyI get very tired at the end of each day but I Wouldn’t blame this tiredness on CLL although I’ve been taking Imbruvica for about 2 years which may contribute to tiredness. I sleepnwell about 7 hours and don’t need day naps . so I do have issues with my eyes I had two cataracts done last year and one eye is causing me problems which I will be checked in April and see why I have this problem of blurriness and causes tiredness at night. besides this I am very active I bike a lot and play other sports.
I actually love the feeling when I do not want to wake up in the morning just want to continue sleeping. It happens seldom. What I hate is getting up in the middle of the night or early morning and not being able to fall back asleep.
I have a hard time getting up in the morning. I generally get 9 hours of sleep but not unbroken sleep--due to the 56 oz. of water I am supposed to drink due to Venetoclax so i get up at least 2 times a night ( what goes in must come out) but once I force myself up, I get around ok. But I do find it so easy and so comfy to just go back to sleep.
Yes, I have to get at least 8 hours a night or I'm absolutely useless. My brain just won't function correctly at all without my sleep. To me it feels like being in a half asleep haze or a fog for sure. I have been known to sleep 12-16 hours a day in the past. I didn't do that for long and ended up being diagnosed with pneumonia. I have to drag myself out of the bed some mornings. If I'm dragging I try to take a short afternoon nap if I have to function. B12 used to help me but it was only short fix.
If not for my dog needing to walk I would give in to the exhaustion. I do nap often.
What helpful information do YOU wish you'd been told at diagnosis?
CLL (W&W) Fatigue and Adderall
For those of you on Ibrutinib- what foods have you been avoiding?
