The lack of Sleep, A Chronic Pain Pt's real nightmare

Beck, this sounds like me. I've had CRPS since 1999 - been really bad since 2008/09. My nights - I'm usually awake until maybe 3 or 4am, get 2-3 hours of very broken sleep and then I'm up again. I crash for short periods - maybe 20 minutes at a time - a few times through the day, and that's my sleep. Train wreck is right and not much seems to help. When I look at my med list it's a joke because everything should make me sleep and nothing does.

Laura

I have CP and Fibromyalgia. I think my last good night's sleep was in the 80s. Yes the lack of sleep gets to me but I guess I'm stuck with that.

I have trouble both getting to sleep and staying asleep. I usually end up sleeping a few hours here and there. Since I sleep whenever I can fall asleep I'm not always awake during the day. My aunt calls me and comes over often and always starts the conversation with 'oh, you're awake'. It makes me want to scream because I really don't get decent sleep at all.

Hi Beck
It seems everyone with CP has had problems with sleep. I started having problems after the first time I had an anxiety or panic attack which I was told is also a side effect of CP. I've been sleeping on the couch ever since. That was about 3 years ago now or more. I grab sleep whenever I can and sometimes hear all the negative comments as others do. I'm at a point where I don't care anymore what anyone says. Getting sleep has become far to valuable to me to give up any I can get because someone thinks I sleep to much when in reality I barely get any. I gave up stressing about not sleeping because stressing just made it even worse.I also have a hard time staying asleep. I rarely get more than 3 hours sleep at a time. I usually crash at some point and finally sleep just out of sheer exhaustion. I hope you can find a solution. I wish you all the best. Take care.
Stingray

My sleep is horrible. I too, may sleep for a couple of hours then am up for 2 more hrs or for the rest of the night. Many nights I'm up at 2 am for the day. Well actually I have to lay down in the morning, and often the afternoon. I've been known to sleep the weekend away.

I let everyone know I have to rest in the afternoon and if one more person calls me during that time, I'm going to scream. I'm easily woken and once I am, that's it.

I've never been one to catnap, I feel MUCH worse with 20 min. of sleep than I do with none.

The worst is when my friends say, "the more you lay around the more you want to lay around". WHO wants to lay around? I'd much rather have a normal sleep schedule and feel good enough during the day to be awake and pain free! Arrrgghhh.

every night. meds like Elavil and Trazadone can really help. in your case i would exchange the Xanax to Klonopin or Valium or one with a longer half-life, Xanax can cause what your having sometimes. if still no luck Seroquel in a low dose or Cloryl Hydrate are guaruntees to work or should be. tizanidine and gabapentin can help sleep structure.

Beck,

You sound like you are talking my language. I had had severe sleep issues all my adult life, years and years before I was dealing with either cancers or CP or fatigue. I have been on Ambien for over 12 years now, even though it no longer can keep me asleep for long periods, it still has the ability to knock me out when I am finally ready to give up and go to sleep.

I am rarely asleep before 3 AM, and almost always awake and up by 9, but it doesn't mean I am getting 6 hours of sleep, I wish, lol. The single longest period of sleep I get a night, is perhaps 2 1/2 to 3 hours. I either wake up a lot from chronic nightmares, or wake up in severe pain.

My personal routine, and it's been this way for years, and my doctors approve. Is I take a 7.5 mg Tranzene about an hour before I want to be asleep. What it does is slow my mind down from run-away thinking, which can keep me up all night literally. Once my brain starts to slow down for the night, I start feeling sleepy. Then when I am ready to call it a night, I will take the Ambien. The Ambien will put me out in 15 minutes or less, sometimes as little as 5 minutes. I view it as a mercy drug, or else I would never get to sleep.

I also have to be watching tv or a movie to go to sleep, even if i am taking a nap, or else I will lie there thinking about every stupid thing that comes into my head. I use a sleep timer to turn the tv off on its own once I am asleep.

Unfortunately, my combination of pain meds including fentanyl and Loratabs has zero sedation effect on me, I only wished they would help me sleep.

I have learned in the last year alone, that I have to have a late afternoon nap in order to function during the evening hours. Its typically starts at 330 to 400 pm, while my wife is still at work. If I am real lucky, I will fall asleep for perhaps 30 minutes to an hour. I would say I only sleep during 2 out of 5 nap times, but at least I am off my feet during that time.

I do believe that sleep issues plague we with CP, it seems to be a common story, and we each have to do what we have to do to sleep and function. Even when I was able to work, typically 45-50 hour work weeks plus commute time, I would still be up at 2 or so in the morning and lucky to get 5 hours of sleep. I come from a family of insomniacs, we all have our own sleep issues in my family.

Good luck to you, hope you can find more ways to steal some sleep. It's miserable enough being awake for 18-20 hours a day feeling pain, and still have to deal with while attempting sleep.

david in sc

2y4t said...
Hi beck, I injured my back in April, since that day, even now, the pain and muscle spasms have only afforded me 4hoursto of sleep at the most, but generally 2 to 3 hours. Get an hour, and Im up for two, get another hour, and I'm up again, get another hour, and my son wakes me up, and he's just too little to be left unsupervised once he's up.

Every night, I go to sleep, wondering if I'm going to be too tired to wake up when he does and him get into something, or go out the front door, and something aweful happen. I think that though racks my brain for at least an hour each night while I sit waiting to get tired enough to go to sleep.

I did alot of lonely miles as a truck driver for 4 years, and I found that my brain is the scariest place on the earth if I let it take over. I made a lot of money, but the solitude, even with cell phones, was driving me insane, plus, at the time, I was 24 and single, that was also wearing on me, and is wearing on me again these nights, as I feel responsible to find a real mother for my son.

Lets face it, my brain is a bottomless pit of worries if I let it be, and this forum has been a life saver since I found it two weeks ago, gets me out of my head, or at least lets me think productively again. If I'm not careful, I know my brain can take me to that same dark place I was at when I came off the road 4 years ago, and having my style of thinking doesn't aid in that, I have aspergers, so when I think about a problem, my mind is instantly able to come up with every possible detail, of every possible scenario for the next 100 years. I think thats why my apptitude for legal issues and mechanical things is so high, I catch details that no one else does.

Sorry for rambling, maybe my little novel will give you a minute out of your own mind, hope you can get some sleep, I still have 2 or three more hours before my body reaches super tired, where its worth trying to lay down, having been a trucker, I had to learn about my tired levels very thoroughly, and it has been pretty useful, since when I lay down, my legs start spasming through the soma, and I won't sleep if I'm not tired enough. Good night, and God bless.

 I totally agree with you. I wish I could turn my mind off during the night. But Thank God for this forum and others to me busy..Tonight I woke up @2am and I am still up @6am I will try to go to sleep in about an hour...Take Care Beck

I don't have a collapsed lung so I couldn't possibly understand what you are going through, but when pain keeps me up and I'm unable to sleep I make myself some chamomile tea and take my bt medicine. The tea gives you that boost to feel a little more sleepy and the bt meds help with pain. So you will be a bit more drowsy than normal.