How much sleep do you need?

At a recent rheumy visit the doctor seemed shocked by the amount of sleep I currently need. Which is 11-12 hours at night & 1-2 hours in the afternoon. This has recently increased by a few hours & my bloods are showing that lupus is more active. So that makes sense to me, as fatigue has always been my worst symptom.

I sleep really well, thank fully, but wake up still tired & need to pace myself carefully throughout the day. The rheumy says I should have lots of energy with this amount of sleep & she wants me to take amytripiline to improve sleep quality. I'm not keen as I have 2 friends who got nasty side effects with it, & I struggle with taking tablets due to ibs. So I would be very interested to hear from everyone out there about your sleep patterns & energy levels.

Best wishes. X

15 Replies

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  • I was never a good sleeper. As i've gotten older i sleep better. However i can't stay up later than nine and i usually get up between five and six in the morning. I always feel better at night if i can have a short nap in the afternoon.

    I usually feel okay in the mornings, but as the day wears on i more and more fatigued and stiffer. I go bed early because i am uncomfortable and need to be laying down.

  • I too sleep for a good 12 hours a nite bt sadly never wake up feeling energised or refreshed. By maybe mid afternoon, even after pacing myself for 3 or 4 hours I will be fighting sleep again.

    It depresses me as I have always been a very busy and active person bt it jst seems that my "get up and go........ Got up and went"

  • im the same mandy. sometimes if i sleep longer, i feel worse...like i have had no sleep at all.

  • I sleep at night, not solidly, but for about 8 hours or so, and then nap in the afternoon for up to 2 hours. I think for us Lupies that it is fairly normal to sleep a lot, surprised that you rheumie is not more sympathetic. Also Lupus seems to affect each person differently so nothing is 'normal' for a Lupie! The key is that the sleep does not refresh, and that is the really hard part to explain to others or accept yourself, especially if you have always been active and busy.

  • hi,

    my sleeping pattern is usually in bed by 10pm as im literally aching and ratty from fatigue by then. i wake at two and then lay and rest as too early to get up. doze until 4 ish and then go down stairs and read a book or do something quiet so not to wake anyone.

    i do have alot of nightmares and night sweats since having lupus and often wake up screaming.

    what ever amount of sleep i do get never refreshes my batteries and i have to pace myself everyday before fatigue and pain and stiffness set in.

  • I suffer terribly with insomnia so sometimes I literally survive on 2 hours a night & others, I sleep 4 14 hours straight. Some days I'm fine, others I need a couple of little naps during the day. Listen 2 u're body, if it needs sleep it will let u know & 4 how long.

  • If I can stay up past 9pm that is good. I still work so am up at 7 ish. I find it takes me a while to get going. I work until 3pm and no way could I do more hours. I have tried Amitryptiline and they do seem to help the pain but they give me a dry mouth and a really spaced out feeling the day after. I take them as a last resort, if my pain is bad or I know I have a quiet day the day after. I rarely have a full nights sleep as I wake with pain

  • When l am in a flare l sleep up to 12 hours at night and again in the afternoon for an hour or too, but as the flare calms l cant sleep at all just cat nap for an hour. Rhumie put me on Amitryptiline but one tablets ughh felt foggy in the morning, but l cut them in half and find this is great it not only helps me get some really deep sleep but it really helps my IBS. not really supposed to cut pills in half but this really helps for me. Good Luck

  • I tend to have 9 hours a night and between 12 & 14 on a Friday or Saturday depending on which day it's my turn for a lie in. I will sleep at least 13-15 hours in a flare. I only have a sit down in the avo not a nap but I would if I could. My rhumie s not surprised by the amount of flare sleep & said.my normal sleep should improve too. All I know is I have had 2 of the most stressful days and today I do not want tobe awake!! X

  • Sorry to hear you have had such a stressful time, jemmy. I hope things improve asap. X

  • hi roobarb, most of the stress is my own doing, a very long story. but its exasperated by the building work we have had ongoing for last 3 months, xmas and school hols. I am just tired, so so so incredibly tired. But it will get better. I have been better since staying on a constant prednisolone dose and i think the azathioprin are kicking in as I certainly do not feel so confused. I have to say my sleeping has been better since I had my nose operation done last year. I hope the sleeping sorts itself for you, I am not sure I would want to take anything to help me sleep, especially as I have children and would be frightened that I would not hear them when they wake in the night. J x

  • I think the amitrip would be worth a try to see if it improves the quality of your sleep - perhaps then you wouldn't need as much and you might feel better. It's certainly worth trying a low (10mg or so) dose to see what happens. AFter all, side effects vary so much between us all that it's the only way to find out how it will affect you!

    I sleep 9 hours a night and usually manage without a nap, but certainly more if I'm flaring.

    Best of luck

    Jennie

  • I am currently sleeping at least 12 hours per day and, then wanting a nap in the afternoon, although I try hard to avoid it. Last night I feel asleep on the sofa at 8.30pm. Got up midnight, when to bed, then woke up at 11am. I do toss and turn during the night and never get a restful sleep. Even when I do sleep through, I still never feel refreshed. Its frustrating as other people don't understand this. They simply think you've been asleep for ages you should have had enough. Well, its not!!!! I know that when I first started taking steriods, I felt refreshed. But that feeling didn't last long. A one week at most. When I am not flared up, I still need about 9-10 hours. I wish I could get up early and stay awake, make most of the day, but when the tiredness is so strong, it takes over. It gets to the point I don't feel that I can't talk, and I can hardly move.

  • I am so glad that I am not the only one more than ready for sleep by 10pm!! I don't sleep long at night because I get too stiff and sore. I am on amitrityline because I couldnt sleep at night at all. I now sleep about 7 hours at night and 2-3 during the day. I am currently off work because I am so tired and in a flare. And, I agree about the steroids, although the help the initial pain but the side effects are horrendous. I like the idea of cutting the amitriptyline in half :)

  • So glad to hear I'm not the only one suffering from insomnia. I usually start watching the clock at 9pm waiting for bedtime. I usually crawl into bed at 9:30 or 10 and sleep til 7 or 8 the next morning. Its not the best sleep especially with night sweats. I was on Trazadone at bedtime for about 9 months to help me sleep. Thought I would try without it but after 6 weeks decided not worth it so taking it again. Its a non narcotic non addictive anxiety med with a side effect of making you sleepy. So far works for me. I don't sleep in the afternoon but will curl up in my easy chair for 1-2 hrs when needed usually everyday. I just listen to my body and do what it tells me to do.

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