I figured it out! If I get less than 5 hours of sleep at a time I am able to get out of bed with just a moderate but manageable amount of pain.

But then I am exhausted all day. And unable to get anything done and forgetful, which is causing me to feel crazy and my day is spent scheduled around a nap that still leaves me sleepy.

Or I can sleep like a normal person and spend the entire day battling pain and stiffness and wishing the stupid pain pills will kick in. The pills help to a point but the pain is still debilitating.

Today I am tired. 100 degree heat around here and no sleep. Doctors appts all day tomorrow is the ty infusion.

I don't know which choice to make tonight. No sleep or more pain. Its like a never ending battle with this cruddy disease.

I was going to start a thread on sleep. I'm glad you did. I'm sorry for your pain..

My problem seems to be the heat? Since the temps have been in the 90s, I can't seem to get enough sleep. I wake up and have to force myself to get up and about. I yawn till nap time and then yawn till bedtime.

I sleep, normally for me, for 4 hrs at a time and that hasn't changed. I should be getting enough sleep, but my body doesn't agree. I think it's weather/heat/humidity/barometer related.

Maybe the heat is your problem too, Leggs??

I hate Summer!!!!

I'm like Sally......I sleep in 4 hour increments. But I've never needed a lot of sleep.

I tend to sleep better in the winter or when it's cooler outside. I tend to keep the temp in my house about 70 degrees year round. I find if I get too hot I cannot sleep. But I won't take sleep aids as they tend to make me feel drugged the next day and I don't like that feeling.

I keep my house between 68 and 70 yr round too. What stinks is going from cold house outside to 100 degrees to cold car (awesome ac!) To hot 100 degrees into cool store or doctors office and back home. Its these days when I begin having hot flashes in the evening even though I have been in the cold house for hours.

Problem is I can't nap for more than an hour or two before I have to get up and get the kids/ watch the kids/ cook dinner help with homework etc etc.

I am so unbelievably worn out feeling all of the time.

Legzz, I honestly don't know how the folks who have kids to look after do it. I'm fortunate enough to be able to lie down whenever I need to during the day. And I just stay indoors on hot days like today. But I remember when my kids were young how tiring it was......and I was presumably healthy back then!

Do you take a multi-vitamin or any type of supplements? I feel so much better since beginning my supplement regimen. B-12 has helped me so much. I take several different supplements every day and, after about 2 months of regular, daily dosing I really do feel better and more energetic. This along with cleaning up my eating habits has done wonders for me.

i sleep in naps. sometimes it is just hot, other times I am uncomfy and need more meds, or the cats wake me, or I simply cannot get my body to understand what time it is. its a bad game. no one wins.

I was lucky and mostly in remission or denial, whilst bringing up the brats..

Yes my docs all insist on supplements. Plus extra doses of calcium and vit d and all of the omegas.
I crashed last night. I went to lay down w dh2b trying to be the good wife because I know today is going to be a really hard one for him. I fell asleep and slept through the alarms going off this morning.

And my whole body hurts.