Hi, CLLers, I’ve been absent from this site for some time so just a recap- CLL diagnosed 5 years ago, on watch and wait.
my question: is anyone having sleep issues? I believe I’m doing all the right things: diet, exercise, no phone before bed, no caffeine late in the day, going to bed at the same time every night, etc. Etc. I do not have sleep apnea.
Sometimes I sleep well, although it’s rare, and most of the time I fall asleep and then wake up maybe two hours later and am wide awake, unable to sleep again. But it can vary…
I was always a good sleeper and I’ve learned that CLL and insomnia can be related. I just was wondering if others have difficulty and if so, what can be done? Tx in advance , Lisa Alice
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Oh, well then it could be any variable or variables. I didn't know if the chemo, monoclonals, or small molecule -ib's affected sleep.
If you've never taken any cancer meds, they cannot be a factor. So, unless there's a relationship between B cells and sleep regulation, I don't see how CLL would cause sleep dysregulation.
I think stress can be a factor if your mind is racing some. Maybe consider some breathing techniques, chamomile tea, lemon balm, reading a quick chapter from a light book, and don't rule out an occasional tylenol pm Sleep is so important.
I got very excited but that seems a very off off label use unless you are describing a beneficial side effect with the prescription being for some other reason
Sleep issues for women can be related to the waning hormones of menopause. When I started low dose bio identical hormones, my sleep issues resolved, as well as my energy levels increased.
This may not apply to you, but I thought I’d put it out there as a consideration; something to ask your doctor about.
I think this is a real consideration. Peri menopause and menopausal symptoms can last decades and sleep issues are high on the list. The additional conscious and or unconscious stress linked to our condition probably makes a wonderful insomnia cocktail:/
Looks like you're already taking sleep hygiene seriously. I don't know if you might find some sort of therapy helpful? Apparently CBT has been shown to reduce PMT symptoms.
I've found simple breathing techniques really helpful too.
My naturopath tests my hormone levels and then prescribes a personal bio-identical formula, which a compound lab makes. It costs $70.+/month. The testing is covered by insurance. Functional Medicine doctors also do this.
We retest every few months, making any adjustments needed. I ran out a couple of times when I changed doctors and was shocked at how poorly I slept and how tired I became. My new doctor will be testing every hormone, not just sex hormones.
Hi Lisa, I was diagnosed 2.5 years ago and I’m also on watch and wait. I totally relate to what you’re going through. Some nights I sleep straight through, but other times I’m wide awake after just 2 hours and can’t fall back asleep. I’ve noticed that it usually happens when I’m stressed or have something big coming up the next day. Otherwise, I sleep fine. I hope things get better for you.
HiSince my fatigue kicked in 2020, I too have struggled with insomnia.
Again as described the same if I fall asleep and wake 1 to 3 hours later, I know that's me done for the night.
All what I've read is there is no direct link, but a lot of CLLers do suffer, especially those with fatigue.
I listen to audio books as I get quality rest if not sleep and seem to be able to function on that.
I also, have sleeping pills to take, to break up the cycle, almost as a reset. Instead of daily sleeping pills as it has a bigger knock on effect to my fatigue.
I've had trouble sleeping for last 10 years, i fall asleep ok but wake up 4 or 5 time during night, i just put mine down to menopause, I alao have Osteoarthritis up my spine so am always turning in the night so could also be a factor to.
Hi Lisa, yes I have almost the same pattern. Go to sleep straight away then wake 3 hours later then cant sleep so listen to audio books podcasts etc. usually drop off again around 6am then can't get out of bed at 7.30!!Feel utterly drained then and often take 30 min nap mid afternoon to catch up. Unlike you I have been treated with O&V 3 years ago and that's when my sleep problems began. Almost as though when I started feeling much better in a good remission my sleep got worse. Don't like taking sleeping pills as I worry they become addictive and like most with CLL I take enough pills as it is!!
I'm seeing consultant for 6 months review in a few weeks so will ask her for advice which I'm happy to share. Good luck and best wishes. Patrick
Hi. I was diagnosed 3 months ago and on watch and wait. I too am experiencing the same thing. I exercise, eat right etc. I sleep soundly for 2 hours and wake up and can’t go back to sleep. I end up taking a sleep aid after a couple of nights of not sleeping. Helps a bit. Good luck!
Hello. I'm 3 years of initial W&W now. I really think the sleeping issues we are sharing are mainly due to the underlying stress of knowing we have cancer. When we sleep, our mind processes everything we did, heard, & saw. Our body heals while we sleep. If you're like me, any little thing that irritates or bothers me will be on my mind when I wake. Whether mental or physical, I think my body is trying to "heal" the problem. In its frustration, wakes me up.My solutions: I pray for guidance to make the right decisions and trust my prayers were heard; I take time to appreciate nature- walking, gardening, loving up our puppy; sharing our bountiful garden with the neighbors & sharing recipes; hobbies- geneology ( it's been thrilling to discover people my mom had searched for all of her life); sewing for family, friends, & people in need...at the end of the day, I find all of these blessings make me greatful to God. That brings me peace that pushes the cancer thoughts away and sleep returns. Covid has separated us from the world we knew. That doesn't help. So, I'm claiming as many reconnections as I can as safely as I can. Thankfully, I now have a ton of new found family to scrapbook for future generations ❤️.
Hi Lisa. I also have sleep issues on Watch and Wait. Sometimes better, sometimes worse. CLL Society just had information on a sleep study that may be of interest. I just returned from being out of the country and have not had time to check it out further. cancer.uthscsa.edu/heme-study
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