View Full Version : sleep issues

05-25-2009, 08:19 PM
Hi, I was hoping to get some info about sleep issues i have when i flare. It's so strange that every flare starts with the same particular sysmtptoms that then evolve in turn the next set of symptoms and so on. After a flare has gone on for some time I notice a problem with my sleep. I am tired, exausted in fact and can fall alseep deeply quite quickly. But there's a problem with wakeing only a short time, even just a few minutes later. I feel like I have had a little siezure or something and I am hot. I mean hot to the touch my skin and soft tissue just burns. I have difficulty laying down flat as it seems to exacerbate the sleep problems so I end up giving up and proping myself up with several pillows. My muscles seems like they are tightening around myself. I end up having to apply hand lotion to my hands and arms and sometimes even my legs and body to cool it down. When "quake awake" or that siezure thing happens I always awaken and feel like I need to eat. How wierd is that? No matter what time it is sometimes I just have to go and eat something or I just won't go back to sleep. I hate it as i worry so much about my weight becasue of the steroids. Surely being these late blooming sleep symptoms can't be just me as all of the others I share with many. Do you have any of these kinds of sleep probelms?
Sometimes all I can do is take extra amitriptyline, or clonazapin or advil for the pain or even gravol as it halps me to fall into a deep enough sleep to actually stay asleep.
Am I weird or do any of you get these symptoms too? Thanks Sandra

05-26-2009, 12:06 AM
You may want to ask for some type of muscle relaxer to help keep you asleep at night. I usually take one when I find myself waking up several times thru the night. I usually wake up with burning pain in my shoulders, neck, wrists, and back. I have bad bouts of insomnia and sometimes that is the only thing that will help me sleep. It is worth a shot!

05-26-2009, 09:24 AM

I feel your pain, hon. Sleep has been the bane of my existence for as long as I can remember. Insomnia, night sweats, pain...you name it. Amitriptyline and Clonazapin don't even work. Some nights, I take four Benadryl in a last-ditch effort to fall asleep. I'm also a night muncher...I'll wake up and just have to eat something. Usually something small like a handful of pretzels, but I just HAVE to eat. I also sweat like crazy...especially in the summer months. I can't even sleep with clothes or covers on. I actually have a bottle of Solarcaine next to my bed that I use if I get too hot...Solarcaine is used for sunburns and has a cooling effect. I also keep a bottle of The Body Shop Peppermint Lotion in my 'fridge that I use at night (and sometimes during the day). You may want to put your lotion in the 'fridge...it gives it that little extra "oomph."

Long story short...if you're weird, I'm right there with you!

05-26-2009, 09:59 AM
Ah, what I would give for a good night's sleep. I totally understand what you are going through. I start to burn on the inside about every place I bend...that then turns into a deep aching pain all the way through my bones. When that starts, I may catch only minutes of sleep, because I can't lay in any one position for any amount of time. I am propped up on the couch with about ten pillows around me and the remote in hand. Channel surfing takes my mind off of it for a little while.

My doc just put me on Mobic...I take it at night, about one hour before bed. It doesn't eliminate the pain, but has taken the edge off a little, which results in at least a couple hours of sleep. Maybe this would be something you could try.

Best of luck.


05-28-2009, 12:10 AM
I'm trying flexeril right now and good grief it wipes me out! It helps put me to sleep and stay asleep, but it's hard for me to wake up. It also relaxes my muscles nicely. I'm told eventually it won't make me feel so tired. I'm giving it a week.

05-28-2009, 01:13 AM
I cant take flexeril . . . ALLERGIC! But, I hear it does work great for sleep!

05-28-2009, 09:49 AM
You might want to consider doing a sleep study. I was found to have sleep apnea this past winter. I would have similar issues. Tired all the time and then fall asleep and kept jolting awake. Apparently, when you stop breathing, you get an adrenalin surge to prompt you to wake up and get oxygen going again. Makes sense...

Something to consider.


05-28-2009, 01:26 PM
Yes!!!! I couldnt sleep until i started on Flexeril along with 3mg of melatonin. Ive never slept BETTER!!!!! :sleepy:

06-12-2009, 04:43 AM
when i was in flare.... i would sleep ALL day long... like, im talking- - wake up for school, sleep all day during school, on the busride home, as soon as i get home... and all night long. then do it alll over again!
it was CRAZY how much i slept !

06-12-2009, 06:48 AM
I definitely get hot while sleeping. Sometimes I wake up because I get so hot and sweaty. It doesn't matter if it's a cold or hot night. There have been times when I thought I might spontaneously combust. Seriously!

06-12-2009, 10:37 AM
I have sleep issues to the extent of sweating a lot! I am almost convinced the 40lbs I lost came from sweating in my sleep!!! I too prop myself up. In fact I sleep like Abe Lincoln at the washington monument!! Hands to the side of me just like old Abe. When I lay flat...i have pain in my chest..doctor said I have flares around the lining of my lungs...so painful! I use to sleep on my stomach...pre Lupus...not anymore. I am most comfortable on my back and some nights I am able to sleep on my side. I don't have the issue with eating but Sleeping sometimes is painful and when I was having flare ups going to sleep or seeing time change to night was something I dreaded cause I knew I was goin to be in pain or cold yet sweating. Yes it is all weird. Dunno if it was the drugs my body was adjusting to or the drugs/flare/lupus just working through my body!