Being newly diagnosed, I'm still learning & trying to accept what is happening to me.
I have insomnia, can't seem to sleep for more than a couple hrs at night. But I'm always feeling exhausted. I take a 2 hr nap during the day cause I find myself falling asleep doing the simplest task. I'm wondering if I've just gotten myself into a bad routine of sleeping during the day and that is what is causing me to not be able to sleep at night. Anybody else going through this and have any suggestions?
You are not alone. I have a super hard time falling asleep, once I am asleep it’s hard for me to stay asleep. On average I get about four hours of sleep a day. Sometimes I’m lucky enough to be able to take a nap but the planets just about have to be aligned for that to happen (if my pain is too high or my anxiety is going wonkey it’s not going to happen) so that may happen a day or two a week. I always feel tired, which is frustrating cause if I’m so tired I should be able to sleep right? Eventually about every two weeks or so I will hit a tipping point though and I think my body just gives out. When that happens I’ve been known to sleep for nearly twenty hours straight. I feel rested after but my pain usually skyrockets from being in one position for too long. I am wondering how many other people pull a Rip Van Winkle like I do a couple times a month.
The only advice I can offer is something my doctor suggested. Only use your bed for sleep. If you are reading or watching tv try to be on the couch or at least sitting up in bed. That way your body will hopefully have a Pavlovian response after awhile. She suggested I give it no more than 45 minutes to try to sleep, after the 45 minutes is up, get out of bed and do a quiet activity for a bit then return to bed to try again. Also if you have a clock beside your bed, turn it around so you can’t see the time. I know when I have a hard time sleeping I tended to stare at the clock which just added to my frustration. I also have an app on my iPad that plays soothing sounds that seems to help when my mind won’t quiet down because it gives me something to concentrate on other than the thoughts going through my head. You might want to ask your doc about melatonin too. It’s the chemical your body uses to regulate your circadian cycle (sleep cycle) it can be found in the supplements aisle just about anywhere. My dad used to use it when he would travel (he was in the military) overseas to help him adjust to new timezones. I have used it too, it isn’t something that will knock you out but it does seem to help a bit, especially if you go to bed the same time every night (which is why I’m not using it now, my bed time is all over the place lately because my pain levels have been so high). Good luck, I hope you find some relief. I’m going to keep an eye on this thread to see if anyone has some new tricks I might try.
I have lots of trouble falling asleep and afterwards I wake up at least twice (sometimes more) a night. I also have to take 1-1.5 hr naps during the day. I agree that Melatonin supplements help. I take 5mg every night to help ease me into sleep. There not sleeping pills that'll knock you out, but they will help get you a bit drowsy. I also listen to something soothing at bed time. Trust me...you're not alone!
I've had sleep problems for many yrs after diagnosis with Lupus. I take 2-4 Tabs of Doxepin & sleep better. You could have a sleep study. Active Lupus can cause fatigue. Sleeping during the day may cause a problem at night. I'd talk to your Rheumatologist & see what they recommend. Not getting enough sleep isn't good for your body
Tiredness is the thing that annoys me most about my conditions!
I can fall asleep 2+ times a day and stilll be absolutely exhausted , I’ve started to plan out my days in advance wherever possible to save as much energy as I can and try to get myself into a good sleeping pattern, but it’s easier said than done when you wake up through the night and have ‘broken sleep’ as I call it which doesn’t help at all!
I’m going to see my doctor soon to discuss being put on thyroxin being I have a under active thyroid which hoping will help!
So I totally understand where you’re coming from, you’re definitely not alone!
Thank you everybody for your replies: The fatigue is horrible.
I was diagnosed by my primary Dr and have my 1st Rheumatologist appt next week.
Any advice or things I should know about the 1st visit?
I think at some point in every lupie’s life there is a period of exhaustion. I for one, typically get 8-10 hours of sleep per night and still take 2 sometimes 3 naps a day. It is just part of it. It is very hard to adjust to. I am going on 9 years of being diagnosed and I still get frustrated. Hang in there, and rest when ever you can!!! Hope you find some relief soon.
Tiffany
I also had trouble both falling and staying asleep. Low dose of amitryptiline before bed has been immensely helpful -- it is similar to doxepin which another poster mentioned, both are tricyclic antidepressants which are given in low doses for sleep issues. I have tried both, but for me, the doxepin seemed to cause weight gain. It was the rheumatologist who suggested it for me -- I would mention the sleep issues at your appointment next week.
You could also try getting yourself back into better sleep pattern by taking tylenol pm or benedryl for a few nights before bed -- if you get a few good night's sleep that may reset your system. Or the melatonin -- I have taken that before and it was effective, but for me, that caused some very vivid dreams so I stopped taking it.
I also used to have problems staying asleep because of staying in one position for too long. After being dx with lupus my first rheumy put me on Nortyptiline, and that worked wonders beginning the first night I took it. I slept AND dreamed, which I didn't realize wasn't happening. But now I, too, still have to take naps during the day and feel like I waste so much time. But the pain went away, too. Yes, talk to your rheumy bout this...it's really common with fibro, too.
I agree, talk with your Dr. about insomnia it is quite common. I wish you the best.
Ann you beat me to the punch! Melatonin, bactrim, rozerem, alfalfa, and echinacea should be avoided- some people say garlic too- but I for one ain’t giving that up! These cause flares in SOME people, so if you’ve already been taking them without an issue don’t worry, but if you are struggling and having trouble figuring out why, it’s worth trying to eliminate these common culprits.
Also, for sleep I like trazodone- doesnt make me feel hung over in the am. I typically need Nuvigil in the morning so I don’t fall asleep driving.
Interesting fact: narcolepsy is an autoimmune disease. Makes you wonder what all those pro inflammatory chemokines are doing running around lupies brains when we aren’t looking.
Flutter, you have already gotten good advice. And I will say melatonin is the most natural choice to use with chronic inability to get to sleep.
Ask the new rheumatologist if a sleep study might be in order. You absolutely can have co-existing conditions, one of mine is central sleep apnea (brain related, you stop breathing while asleep) versus the kind caused by excess weight or too much tissue blockage in the back of your throat.
I have learned to sleep when my body says to. It tends to be in shifts, a few hours asleep, a few awake, and repeat. Not everyone has that luxury, especially if caring for their children or holding down a job.
Take care, and best of luck with the new doctor. I hope you are more comfortable soon.
This is very common and if I am not mistaken one of the determining factors of lupus.
That said, someone posted and article not long ago about how Lupies tend to not stay in the stage 4 REM cycle which is what we need to recharge. I slept nearly the entire day away on Sat the 6th of July and don't recall another full nights sleep since Thanksgiving.
I try to stop drinking caffeine after 4 pm. I keep ALL lights, including the my lights on my alarm clock dimmed, cover the light, I don't have a TV in my room anymore, and if I do wake up I don't turn on any lights. These are the tips that I have read on ways to avoid insomnia. The "lights OUT" tip is the one that really seems to help. Such a minor thing but what a big help.
As Anne said, a cool room is very important.
Hope some of these tips help until you see your doc
DeAnne
I have the same issues with sleep and napping. I have tried not napping but it doesnt seem to help, I just get more exhausted. I have been using a hypnosis app on my Ipad that I found, it is specifically to help you sleep. It really seems to help me fall asleep and stay asleep on those nights when my mind just wont shut off, or my pain is bad.
I was just diagnosed with lupus about two months ago and I to sufferr from extreme fatigue and insomnia. It take me for ever to get to sleep but once I fall asleep I usually sleep until I wake up which can be any where from 6-12 hrs. Although I slept so long I still feel exhausted and still have to take naps in the evening/afternoons. I never feel rested after sleeping.....
Wow. Me too! I have to get that app. I find that doing something for myself works-treadmill. I no longer drink coffee or soda. I had to cut my social obligations down and avoid stress. Good luck.