im tired but just cant sleep!!!!!!!!

hi everyone, my body is so tired but my mind is wide awake. why is that? i finished my coarse of steroids 2 days ago, and i think thats what kept me awake. i sleep every 48 hours litterally. then i dash down and ww3 can happen next to me i wouldnt wake up. i tried to just calm down and getting in bed but the sleep just doesnt come. im highly irretated with almost everything and every one. im sore all over and that makes me even more irratable. i dnt feel depressed as yet and try to take things slow. thanx for always being here for me. i value your opinions and hugs. have a great week ahead.

6 Replies

Hester, welcome to the world of steroids! They completely mess with your head and emotions. The sleeplessness, then hyper alert and irritability you feel are a completely normal reaction to the medication. If the sleeplessness carries on for much longer go and see your gp as you may need something to help your body get back into rythmn again. Sending you lots of hugs and spoons x


thanx Amethyst, i am truly not fond of this stupid meds. my head is killing me. i just read that lupus is the cause. thanx for all your support. ((((((hugs))))) for you too.


Hi Hester, I'm new to this site and only recently diagnosed with probable sle. I was on 30mg of steroids for a couple of months and towards the end if it was as if I did not have eyelids, I had to get out of bed and do things, even though I was totally exhausted. It's so annoying as you know you should be resting. I was slowly taken off the steroids - to my detriment, and everything returned with a vengeance along with a horrific depression and the feeling that there was no point to life. I am back on the steroids on 15mg and my depression and self loathing has improved a lot, but that's because I'm on other meds to help with the symptoms. I was a horrible person a lot of the time during the high dose of steroids, however, before diagnosis I would have really strange days when I would take things out on the one I love for no reason at all! - and on reflection it appears to have been the curse. The side effects of things are quite scary, but I'm quite glad I'm on the 15mg at the moment. I'm so sorry you are having these difficulties, I really feel for you. I hope you have a peaceful sleep tonight.



I'm not on steroids just now, but I get that too- SO frustrating!! I tend to get it after I've slept cause of my fatigue, I generally lie down, do the deep breaths n relaxation stuff (which helps) maybe a nice warm bath would help too. General relaxation techniques n trying not to force yourself to sleep, but when u do, set an alarm n get up if your still tired, after a few he's, have a nap- might help break the pattern.

Only suggestions, I hope something helps



Hester, i swear i should live on a maternity ward, night feeds would be a breeze my sleep is that erratic, i'm either wired, bouncing off walls or bumping into everything, dropping stuff and slurrng my words im so tired, but that doesn't mean i'll sleep. From not sleeping at all to falling off the toilet as i've fallen asleep while going for a wee! My body can ache so much i can't get into a bath or so much that even though i fall asleep i wake every time i move. I've tried relaxation cds, lavender drops on my pillow, a warm bath...etc and these and many other things can work, but when it gets so bad that depression kicks in and it's hard to see the point in things any more cos i'm pyhsically and mentally in pain with tiredness my tried and tested solution is reflexology. I'm skint so i can't afford it often, but find the right therapist and it's heaven, like someone gets inside and unknots your knots without having to touch a single tender spot and induces a wonderful sleep. If poss get someone to come to your home and treat you while you lie in bed. Get room ready, draw the curtains, leave a window slightly ajar for air, have a bottle of water beside the bed, play a soothing and relaxing cd and have a friend to lock up after the therapist has gone as you should be asleep before they're finished, i all goes well. If you have a family then either banish them for 48 hours or stay at a friends if you can :) Really hope you find the solution to give you the strength to keep fighting this constant companion of ours. You really are not alone, are understood and yes though it may not feel like it, totally normal, well for a lupie at! Good luck and sweet dreams. Rxxx


thanx for all your comments. i really appreciate it. hugs to you all.


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