It has been a while since I have posted anything but do try to keep up with you all.
I have a question to see if i am weird or if any of my brothers and sisters out there experience this problem also.
I go to sleep in my regular bed and can only stay in it about 1-2 hours and then it becomes uncomfortable , I move to to either the spare bed room or my recliner , the the same thing happens in 1-2 hours . both of these beds used to be comfortable but now I start to hurt after the 1-2 hour period, this has been going on for six months or more.
Any advice
james
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BlueGillfisherman
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I could write volumes on the topic of sleepless nights and no there is no day time napping!!! If someone figures this out please please let me know....I have tried everything you can imagine. By 4:00am I simply get up as I can’t fight it any longer!!!
Have had to CLL since 2002. Has now morphed into Hodgkin’s lymphoma. CLL has been sent into remission recently with Ibrutinib a drug I have been taking for 4 years! Except now the Hodgkin’s has appeared. Third stage. Am optimistic with the ABVD chemo that I am now taking in Toronto. My health handlers are not quite sure if there’s any connection between the CLL and the lymphoma. Richter’s Trabsfirmation? But I am suspicious. To your point especially, I’ve had sleep issues for years. Do resort to sleeping pills from time to time. Now during the chemo especially. Ambien and zopiclone. Unless you are the addictive type in the first place, I would use them at least from time to time. Speak to your doctor if you haven’t done that already. Without decent sleep there is no good health. Leopardo.
There are so many reasons we can hurt at night and have our sleep interrupted, many of which reasons are unrelated to cll. Without knowing more than that you hurt at night and cannot get comfortable, its hard to give you any meaningful feedback.
I do not think of cll causing muscular pain, except in those situations where a swollen node or spleen is pushing on something. I do see a lot of reports of joint pain, but that is most often treatment related. Without even knowing where you hurt, I would not know where to begin. Personally I have had a few painful nodes, but not to the point it interfered with my sleep. It seems to me if you are looking for a fix for the problem, you first need identify a cause for the pain.
If the pain is better when you sleep upright in a recliner and you are not breathing well, I would wonder about heart issues and excess fluid. I hope whatever it is it gets better.
As an aside, I never heard of a bluegill growing up in Louisiana, we call them bream. I never heard of crappie or white perch either, we call them sac-a-lait. No matter what you call them, they sure make for a tasty pan fish.
"Well, son, its part of life." I couldn't resist that, having read your most inspirational post of several months ago!
It is my experience off and on, just as you describe it. Sometimes after I have been asleep for a few hours, it is my mind that goes off on tangents. However, it is often discomfort of some kind and tossing and turning does not help--I often get up and go to my recliner, turn on the tv and either fall asleep or watch a movie (not that there are a lot of those on without a more expensive tv package.)
Other times I get up and get an ice pack and place in on whatever part is ailing me--sometimes the spleen area, sometimes a hip---that calms down any pain and usually lets me drift off for the rest of the night.
Hi, James! I’m sorry you’re having trouble sleeping. After 2 years of tossing, turning & changing bedrooms, spending hundreds of dollars (I am NOT exaggerating) on pillows, I finally gave in to the nagging of several friends & bought a My Pillow. I take a Tylenol Arthritis at bedtime & now sleep 6 to 8 hours (unless Mother Nature calls). Even when she does, I never have any trouble going back to sleep. I know that not everything works for everyone. But getting the right pillow worked for me.
I had the exact same sleep issues you speak of. I thought it was because of muscle pain, knee pain, shoulder pain, drinking too many liquids too late. My daughter diagnosed sleep apnea which I denied for years. However, a cardiologist finally talked me into taking a sleep test and sure enough - sleep apnea! I got a CPAP machine and suddenly I go to sleep quickly and sleep all night. It is really quite remarkable!
The enlarged nodes on the neck can make sleep apnea much worse so you might look into a sleep test.
I too have the same sleeping problem. I can get a couple of hours then I wake up and move to a recliner to try and get back to sleep. As a matter of fact I am writing this at 2:50 am after a 2.5 hour sleep stint. There's lots of us who just can't shut it down like we did before diagnosis. I plan to bring this up with my doc the next time see him.
I've had sleep problems ever since diagnosis 10 years ago. About a year after diagnosis, I went to my GP to find out what could be done and he just listed of a bunch of sleeping pills - none of which helped.
My best advice is to look at your sleep hygiene if you haven't done so already. Changes I've made include:
a) Not using my computer after 7pm
b) Not drinking coffee after 10am.
c) Reading a book before going to bed (I find reading helps to shut my brain down).
d) Maintaining a strict bed time schedule. I'm always in bed by 10:30 on the dot.
e) If you can't fall asleep after a while, get up and read a book until you start to feel sleepy. Don't lie there tossing and turning and looking at the clock.
f) Have a dark bedroom.
g) Don't watch TV in bed.
h) Don't have a clock that is visible in your bedroom.
i) Exercise. I see a personal trainer 3 times a week. It makes a big difference in many respects.
I had severe lymph node pain before starting treatment. So sleep was always at a loss rolling over on enlarged painful node can wake you up right now let me tell you! Also try to make sure you are at peace with yourself before going to bed! I’d tell the CLL that I beat it again today and then let it go... I think at times we all hold on to it to tight and we forget to breathe so give it a try! But as you stated me and my recliner had become very good friends. :). Good luck
Just a thought...my mom had sleep issues such as you describe and she found that taking a Tylenol every night before bed knocked down the aches and pains that she would have while in bed. She only took one because of her size, but it helped her.
I too have sleep issues, sometimes due to pain, other times I do not know why. My normal pattern is I fall asleep fine, sleep 1 1/2 to two hours, wake up and then cannot get back to sleep until 4-5 or in the morning. I have tried melatonin and valerian but nothing seems to work and like you my best sleep is the one after I finally fall back to sleep at 4-5. My GP had me on a mild older antidepressant, Doxipin, for about 5 years, but it stopped working. Since I am in treatment my GP wants my CLLdoc to decide if I could take a prescription sleep med (which I do not want to do!), but my CLL doc does not like to prescribe sleep meds. He told me to take Benadryl. I don’t like Benadryl, but good sleep is so important to the body, that I leave it beside my bed and if I have enough time to get 4-5 hours of sleep after waking up in the middle of the night, I will sometimes take it. It will still take a half hour to an hour or so for it to take effect.
I experienced a condition such as you describe soon after being diagnosed. As the condition progressed, I had a barage of blood test which showed no conclusive influences, and the doctors informed me that it was more likely age related.
In desperation over a three year period I tried numerous supplements including turmeric. I bought an adjustable bed with a theraputic mattress, changed my diet, tried exercise and regular stretching, I took NSAID's and used creams, I tried heat and cold. In addition, I spent hours researching remedies, and although each thing that I tried seemed to have made a small improvement, the discomforts progressed and fatigue increased exponentially.
From reading medical publications and commentary that I determined to be credible, I guessed that my problems were resulting from connective tissue inflammation. I also guessed based on my disease markers that the influence was somehow CD20 cytokine related. In speaking with a specialist, I found that there is no reasonable or affordable way to measure or prove the idea.
Although my Lymphocytes count was only 60 K/uL, my condition progressed over 40 months to the point that I was having trouble getting around and performing daily tasks. I decided to be treated with obinutuzumab (CD20 Mab) and venetoclax (Bcl-2 Ih) primarily due to severe fatigue.
Within three weeks of obinutuzumab I was pain and discomfort free with the exception of what I would deem normal age related "58 yrs". It is also interesting to note that shortly after the obinutuzumab (Cd20 Mab) was stopped, a small amount of aches returned even though I am still taking venetoclax (Bcl-2).
My actions and outcomes are not going to fit everyone else circumstance I am sure. However in my case, between my specialist's educated guess and my own measure, I think we got it right.
I am not trying to play doctor here nor inaccurately influence your measure for making health decisions, I am just stating my circumstance and perspective current outcome.
Smakwater, thank you for sharing your story. I have recently been told by my CLL specialist that O+V is what he recommends as treatment or me, when the time comes (and it is probably not far off), so I appreciate your sharing your good experience with that combination therapy.
I understand fully that my experience may differ, just appreciate having a bit of news regarding the success you had.
I have some minor aggravations including mild neutropenia, however, all is manageable at this time. My quality of life is improved greatly.
The aggravations are just part of the cost of doing business, and they pale in comparison to the symptoms and influencing comorbidities of progressive disease.
The full report for a trial for O+V is due out next week--will be presented in Chicago, according to my specialist. I will be reading it carefully. I am not eager to be treated, and my only real complaint is the possibility of my spleen causing some shoulder pain and some inability to eat a full meal and be comfortable.
It will be interesting to see the full report. Our trial with U.S. Oncology will be ongoing into 2020, and I am not sure when there will be any published data.
From what I am reading and discussing with cohorts, I believe that in many cases the O+V is showing better outcomes with less adversity. Of course this is relative to treating appropriate to risk markers.
We may be talking about the same trial--I didn't ask the name of it or the length of the study---it could just be an update after a year on the trial and not a final report. We should get something before long as some journal will pick up the info and put it on line---may be a video.
Do you have an end date of one year for your treatment?
Interesting. I too have sleep problems and like someone else on this forum I fall into a deep sleep at 4am. I have a feeling this insomnia is partly due to CLL as I do not know anyone who has CLL who sleeps well. Then again as we get older many people Cll or not suffer from insomnia.
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