I was curious if anyone else experienced this.

So I'll be in like horrible horrible pain once I lay down and get ready for bed and get extreme painsomnia. And then like aound the times (depending how bad the pain gets) 5-9am I will finally fall asleep and sleep for about 2-4 hours and wake up in terrible pain again. I'm basically living off naps at this point. Is this just me or does anyone else have this happen?

This happens to me a lot of nights. Including last night. I always get a startled feeling from all the pain, and I wake up confused about every 2 hours. One thing that I have connected it to is my emotions. If I've spent a great deal of the day sad, mad, or overwhelmed, I have a terrible time trying to sleep. Then I add a night of fretting over no sleep, and by morning I am a mess. I've found something that works most of the time to break that cycle. Take today for instance. I have already decided that I am not going to let myself think negatively today. I am going to give myself permission to be okay with napping as much as I need to. It seems counter intuitive because I don't want to sleep all day and stay awake all night. I try not to be too hard on myself especially after a long night of no real sleep. If I force myself to think positive or even just neutral thoughts, and allow myself to rest as much as my body tells me I need, I am usually able to get a break between the bad nights. I hope you have a good day.

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Thanks so much
I'm going to try that today since it is now 7am and still have only slept for about an hour

Sleep is a constant issue. I do find it is worse when I have over extended myself during the day. That includes physically and yes, stillsmiling, emotionally too. I hope you both have a good nap today. I may try that myself.~mac

yup yup part of living with the monster......

According to my neurologist it is an emotional thing.
This monster we all deal with can make our emotions get all screwed up in many ways.
I'm always having bouts of emotional outbursts that seem uncontrollable. I'm finding myself apologizing to folks I get loud and angry with asking for some understanding. Understand that sometimes I can't control myself. I often keep to myself so not to offend anyone.
I just wanted to let you know you're not alone...

My pain skyrockets at night too. Starts in my back then down both legs. Im ok for awhile on my side then my hips start. Then its my neck etc etc. A while of this then my body is on fire from my waist down. I have been on sleeping meds for years because i am in so much pain i cant sleep much at all during the night. I havent had a night of normal sleep since 2009 when this all began. So if nothing else, know that others struggle with this problem too.