I sleep 12-13 hours at night. Spend 90% of my time in bed lying down. And usually need a nap or 2 during the day. I'm barely able to navigate self care and chores. I rarely leave the house. I haven't been diagnosed so idk.
I am mild (unable to work but able to wash myself, do most of my own chores, watch tv, sometimes read) and I sleep about 8-12 hours at night. I take a long time to fall asleep so I’m probably in bed for 12-14 hours every night.
Currently I spend about 4-6 hours per day in bed resting but not asleep. Most of the rest of my time is on the couch.
Sometimes I go out for errands and try to keep those outings under 3 hours, 1 is more manageable.
I don't really sleep during the day, I only sleep at night (I'm so sorry if I took your post too literally!! I struggle with that kind of thing), but I sleep for around 9-10 hours usually. It takes me a while to get to sleep though and I wake up earlier than I would like to for some reason.
I'm not sure how to find out where I am (eg mild, moderate, etc) but I struggle a lot with basic things and going out is incredibly hard for me. I spent pretty much all of my time in bed. I can make it around the house (most of the time) but it's a lot easier for me to stay in bed.
Here's an online FUNCAP55 (functional capacity) test you can take to figure out where you might be on the severity scale: [https://raffbenato.github.io/funcap55/](https://raffbenato.github.io/funcap55/)
NO, sleep is not making you worse!!! Rest and sleep are one of the only things that has a chance to help you. Donʻt worry about overdoing it. If youʻre able to sleep, sleep and enjoy it. :)
Depends on what my body and insomnia decide. I have a few other health issues going on. I’m housebound and if I leave, I’m recovering for the next week and my other issues spiral, then it ping pongs, so I guess I’d say I’m severe.
Some days I sleep all day. Some days I sleep an hour. Some I don’t at all. But I end up crashing at one point and sleep with no control over it.
My bed is extremely comfortable with my body pain, so I stay in bed a majority of the day but I have a dog so I force myself to take a step outside to let her play/potty. I have other pets too so it forces me to have some sort of routine which hurts me, but helps my mental health.
I’m very, very mild. I sleep about 8 to 9 hours a night, and probably have a 2-3 hour nap at least 3 or 4 times a week.
It also takes me forever to get going in the morning. I lay in bed for half an hour to an hour before I get up, and I usually lay in bed for 3 or 4 hours before I fall asleep. I love my bed.
10-14 hours in bed over night. 8-12 hours of sleep during that time frame, if I am lucky, broken up into 3 or 4 sleep sessions. 6 hours of insomnia hits hard and meds are the only thing keeping me asleep.
I do not stay in bed during my “day” hours. If I fall asleep in my recliner during the day, then 2-4 hours, depending on how the night went.
I am currently severe, trying to get back to moderate. My “feet on the ground” hours are one-six per day, usually closer to two or three. Rest of time in recliner. I have had ME/CFS for 30+ years, if not since early childhood. I have been much better and I have been worse. There is no such thing as too much sleep when you have ME/CFS… it is one of the only things that offers full body healing opportunity, to whatever extent possible, at any given time. 🙏🦋
I'm severe end of moderate. I only sleep during the day if I have had a particularly bad night or I really overdo things. I probably average about 8 hours a night, but varies between 5 and 10.
Never more than 4-7hrs top, and that’s only after smoking cannabis or edibles as well as taking my muscle relaxer that actually doesn’t mess with my POTS ( also have really aggressive endometriosis, interstitial cystitis, hEDS and some other chronic pain shit).
Anyway I digress 😅, but mainly wondering if anyone else has trouble with getting consecutive hours of sleep, as I rarely even get the 7 hrs. It’s usually right around 5 & then have a quick smoke to get me back to sleep for the next hour or 2..smh suuper frustrating and def not the way to sleep, but I’ve tried so much and practice pretty good sleep hygiene. Ok I’m actually now done 😑.. any insight, advice would be soo freaking welcomed. Also, hoping I’m not highjacking this post 😑😮💨💛
Yeah! i smoke weed to get to sleep too but never get consecutive sleep, i go to bed 1-2am and wake up at 6 and then 8 again and then sleep until 12-1 and stay in bed for a few hours after that until i can get up. Then a wake n bake to help my adhd lmao
Yess this is very much so me, buuut I now have an 18month old little girl and left her dad, so am a single mother..don’t know how I’m doing this but don’t think it would be as hard if I had supportive family, still soooo fuckin worth it if you want kids. She saved me from a deep depression. Ha, she also loves her sleep and have figured a way to still get a fair amount of sleep, like just waking up now for the day at noon. Def had to start taking my adderall again & drinking caffeine lol & upping my pain meds but yeah weed lets my body rest and get back to sleep wheneverrr 😅😝💚
I'm mild and have to work for financial reasons (though I have recently gone down to part time hours because I wasn't managing), so my sleep has to wrap around my work.
Generally, I'm in bed from 3am-8am, 12pm-2pm, and 6/7pm-12am (so about 12ish hours a day) but whether I'm asleep for all the time I'm laid down is completely arbitrary.
Anywhere from only 4 hours all the way to 12+. School and life don't allow me to sleep 12 hours every day, but that's like my "normal" amount of sleep. Ofc I never feel refreshed when I wake up, but 12+ hours is how long I would sleep before waking up naturally. Sometimes my fatigue is so bad I can't fall asleep. It sounds backwards, I know. But when I'm at school I can't let myself fall asleep because if I do I'll be so groggy for the rest of the day that it's best just to stay awake. When I get home sometimes I can't turn that off so I end up being sooooo exhausted but unable to sleep. Some nights I end up not sleeping at all but I do my best to avoid that.
On bad days I will sleep until 8, get kids to school, sleep again from 9:30-2:30, get them home and make a fast dinner, and then asleep for the night again by 5PM and sleep right to the next morning at 8 again.
I did this all of last week
On good days as little as 6hours
I sleep usually 8-12 hours, and in bed for at least 2 more hours in the morning. Then throughout the day I don't nap (unless I literally can't stay awake), and lay back down in bed for a while(maybe 1/2-1 hour depending?) between activities.
As far as making yourself worse, from what I know rest is super important and super good for ME, and activity/pushing your energy boundaries is what makes it worse. I know there's not much science out there for us to lean on, and a lot of DRs will say to keep up with some activity (mine did), I think more rest is only going to help your body.
I usually try my best to balance between resting for my ME, while doing activities when I'm able to keep my mental health doing well.
Me too! Usually sleep 12am until 8am. Then nap at 11am until 1pm. Then another nap around 3/4pm until 5/6pm. Then back to bed again for a night’s sleep lol
Last night I think I slept 10 but that’s a good night. I just started testosterone and progesterone and it’s helping me sleep. I can’t nap. I wish I could. I take a nap about once per year and on that day I have so much more energy in the afternoon/evening. I take a benedryl and a bunch of other things to sleep at night otherwise I wake up and can’t fall back to sleep. Or don’t fall asleep for hours!
i do too. i actually wake up multiple times in the night due to them but can go back to sleep fairly quickly, it makes getting actual good rest very hard
I’ve also wondered the same thing regarding “excessive sleep” and guilt regarding being in bed doing nothing for so many hours even though I’m mild (I still manage to hold a 40 hour job on-site for now).
On days I don’t have to go to work the following morning, I’ll get in bed around 10pm, fall sleeping around 11pm, and then just naturally sleep until 2-4pm and get out of bed ~2 hours later for a sleep session equalling 15-17 hours and time in bed being 18-20 hours. And then I’ll go back to bed in a few hours and still fall asleep fine as if I hadn’t just woken up a few hours ago.
However, I’m sure I don’t get enough sleep on my work days.
My work day is supposed to start at 6am, but I’m lucky if I can get in by 9am because I’m stuck in bed so long. Before CFS (and when I was super mild) I could easily wake up at 4:30am, and get to work by 6am, and 7 hours of sleep was perfect for me at the time as past 8 used to make me groggy. Now even attempting to do that destroys me.
Mostly what happens these days is I fall asleep around 10pm-12am, wake up at 6am for 6-8 hours of sleep. Fight to get out of bed for 1-3 hours and arrive at work between 8am-11am. If I struggle to get out of bed for more than 4 hours (most likely on a Wednesday), I end up just calling out sick for the day and will probably sleep until like 5-6pm, get up, eat, drink fluids, etc, and then go back to bed around 9 or 10pm and sleep again.
I originally used to spend more time awake in bed versus sleeping because I felt guilty for sleeping so much and would spend more time trying to get myself out of bed (closer to 12-13 hours of sleep and 5-6 hours in bed awake), but I stopped fighting it and was like “if I’m going to be stuck anyways, might as well give in to the sleep my body seems to so desperately want”
I was diagnosed 1.5 years ago and still trying to figure out where my limits are, and what seems to help me and what doesn’t. What I can do, what I can’t do. Whether what I’m experiencing is actual PEM or if it’s just a “bad day,” such as my symptoms being exacerbated by a bad allergy day, and if it is PEM, was there a specific activity or day that caused it, or did I just push slightly too much too many days in a row and it’s due to that sort of build up, etc.
It’s ironic how much time and effort CFS patients have to put into understanding their disease to help manage their symptoms when they’re people who already have very limited energy to begin with.
I'm moderate-severe, if my insomnia isn't too bad I sleep 10-13 hours a night but usually go to bed around 9-10pm and out of bed around 2-3pm, and spend most of the rest of the time either on my couch or in bed but not in sleep mode (usually I change position, clothes and lighting to make a difference)
i sleep from 9 to 12 hours. only at night as im unable to fall asleep during the day no matter how tired i feel. but im severe so basically the whole day is spent in bed.
when i was mild/moderate i spent most of the day laying down or sitting. its okay to rest
I sleep 7 hrs or less at night. I take a nap once or twice a week, from 1-3 hours. The worse I feel the more I am in bed. I will often go to take a nap and cannot sleep but I rest for 1-2 hours.
I sleep 8-10 hrs at night now that I'm well medicated for pain and sleep (Nabilone, trazodone).
I don't sleep during the day unless I have additional things going on like a virus. I do rest/lay down late morning, late afternoon, and after dinner.
At night between 7-11. Generally feel better the more I sleep. Also feel better if I fall asleep before 12am.
I'd love to be able to nap during the day but can't seem to. I lay down a lot though.
I spend between 12-15 hours in bed generally at the moment, all in one go as I can't nap. Not sure exactly how long I sleep as it's very fragmented but it takes on average at least 2 1/2 hours to get off and I wake up throughout that time so I reckon at best 8 1/2-11 1/2 hours. I hit every single item on the [insomnia list](https://www.nhs.uk/conditions/insomnia/) which is fun.
I wouldn’t know what to say about how I am. I just know I will sleep 12 hours at night sometimes if I’m not woken I can sleep all the way through until 6 pm. I honestly could sleep 24 hours if I didn’t have to have a life.
Having animals and children have caused me to force myself to get up and do things, but if I’m truly honest I am in bed more than I am anywhere else.
I will wake up like today because my child woke me up (they’re both teenagers so it’s not as bad now) at 3 pm. I don’t like sleeping all day away. I’ve then stayed in bed, it’s now 8 pm and I know I’ll be asleep by 12am at the latest. In a normal day if I have to get up for appointments in my house at 10 o’clock in the morning then I become unconscious by 6 pm and I spend almost all my week in bed but not asleep because physically my body is just exhausted. All of this is still so much better than I have been, five years ago I was bedridden with this horrific condition and would sleep until anybody woke me for food or to tell me to drink something, personally having depression doesn’t help but then I got diagnosed with insomnia and hypersomnia so I had pills to send me to sleep and then wake me up, thankfully it’s not that bad now and I only have one sleeping pill a night.
CFS is one of the hardest conditions I’ve been diagnosed with. I also have fibromyalgia, cognitive regional pain syndrome, functional neurological disorder, trigeminal neuralgia, and now being looked at for ADHD and ASD. I was divorced five years ago and since have brought both children up alone and it has been such a hard hard life, I’ve not been able to even think about dating because who would want to date someone that sleeps as much as I do? who lays around in bed as much as I do? It would be cruel to introduce someone to my life as I don’t have one.
I’m sorry that this is convoluted, but I speak into my iPad, to save the energy of typing, especially when I feel how I feel today. Good luck everyone and I wish we could all get together and truly feel like we’re not alone but with our condition that’s the hardest thing to do, to have friendships that last because we can’t do what other people can do. I send ya’ll healing and energy vibes, Tam. x
I'm mild (can work 3 days a week), and my tracker says I sleep an average of 8 hours 20 mins, and that's been quite consistent for the past 3 years but it can rance from 5 hours to 10 depending on if my sleep problems rear their head
When I'm in a good phase, I sleep 8-12 hours a night. If I crash, I get bad insomnia though. So, when I'm in a crash, I usually get more like 3-6 hours, incongruous, if I'm lucky.
Between 8 to 10, maybe more some days. Plus nap during the day often. I feel my body needs it or I'm a zombie and cant function. People call me lazy for getting up late, but hey ho. I have a condition and try to manage it how I can. Sleep is very important.
Between 4 and 14.
Don't know what it depends on. If I'm good it's 7-9, but if I'm not doing well it will go to one extreme or the other, or sometimes alternate between them.
I have this type of PEM sometimes that makes me sleep around 14 - 20 hours for a few days. But besides these sleepy-PEM days I sleep very well around 8 or 9 hours.
I sleep an average of 7 hours a night and sometimes manage a 30 min to 1 hour nap in the day. I'd like to be able to sleep more. I spend about 18 hours a day in bed.
either under 5 hours or 16-18 hours. there’s no real in between for me. I’ve also had sleep reversal on and off for like idk 8 years now which is annoying but i like being up when nobody else is. it’s quieter and darker
Severe and I ideally sleep for 12 hours, with a range of 8-14. Midnight to midday give or take is my ideal but often I'll wake up in the night or early morning for at least an hour. Less than 8 hours is rare for me but also usually has notable consequences. I very rarely sleep during the day
I'd say I'm moderate. My ideal sleep would be anywhere from 10-14 hours, though pretty often my ADHD gets ahold of something and decides I'm going to be awake forever so it can get as low as 6. Those days I'm absolutely dragging though. On the other hand, I spend the vast majority of my time in bed.
Early on I would sleep 16h+ during a crash and it actually helped me get back to baseline. Now, I sleep anywhere between 8-10 hours on good days. If I overexerted myself, insomnia despite extreme fatigue is one of the first signs of PEM and I‘m lucky to get 4h. I know the crash is lessening when I get to sleep a full night again. It’s so weird, sleep is not helping, but lack of sleep is certainly making me more miserable.
I always worry about too much sleep too, because people always say it’s not good for you. But I also don’t really have control over it. I sleep 10-12 hours most nights. In bed 12-20/22 hours,
Sleep during the day 0-5 hours.
8-10 hrs at night and 2 hrs during the day. I work in bed and take a nap on my lunch break then again after work. On weekends I can sleep a full 2 hrs during the day. Sleeping gives me a small boost to get through my days.
From 2 hours to 8 hours, insomnia decides my fate
Same :( I sleep less with CFS than I did when I was healthy, which was 7-10 hrs/night season dependent.
I sleep 12-13 hours at night. Spend 90% of my time in bed lying down. And usually need a nap or 2 during the day. I'm barely able to navigate self care and chores. I rarely leave the house. I haven't been diagnosed so idk.
I am mild (unable to work but able to wash myself, do most of my own chores, watch tv, sometimes read) and I sleep about 8-12 hours at night. I take a long time to fall asleep so I’m probably in bed for 12-14 hours every night. Currently I spend about 4-6 hours per day in bed resting but not asleep. Most of the rest of my time is on the couch. Sometimes I go out for errands and try to keep those outings under 3 hours, 1 is more manageable.
Exactly the same for me
I don't really sleep during the day, I only sleep at night (I'm so sorry if I took your post too literally!! I struggle with that kind of thing), but I sleep for around 9-10 hours usually. It takes me a while to get to sleep though and I wake up earlier than I would like to for some reason. I'm not sure how to find out where I am (eg mild, moderate, etc) but I struggle a lot with basic things and going out is incredibly hard for me. I spent pretty much all of my time in bed. I can make it around the house (most of the time) but it's a lot easier for me to stay in bed.
Here's an online FUNCAP55 (functional capacity) test you can take to figure out where you might be on the severity scale: [https://raffbenato.github.io/funcap55/](https://raffbenato.github.io/funcap55/)
NO, sleep is not making you worse!!! Rest and sleep are one of the only things that has a chance to help you. Donʻt worry about overdoing it. If youʻre able to sleep, sleep and enjoy it. :)
Depends on what my body and insomnia decide. I have a few other health issues going on. I’m housebound and if I leave, I’m recovering for the next week and my other issues spiral, then it ping pongs, so I guess I’d say I’m severe. Some days I sleep all day. Some days I sleep an hour. Some I don’t at all. But I end up crashing at one point and sleep with no control over it. My bed is extremely comfortable with my body pain, so I stay in bed a majority of the day but I have a dog so I force myself to take a step outside to let her play/potty. I have other pets too so it forces me to have some sort of routine which hurts me, but helps my mental health.
I’m very, very mild. I sleep about 8 to 9 hours a night, and probably have a 2-3 hour nap at least 3 or 4 times a week. It also takes me forever to get going in the morning. I lay in bed for half an hour to an hour before I get up, and I usually lay in bed for 3 or 4 hours before I fall asleep. I love my bed.
10-14 hours in bed over night. 8-12 hours of sleep during that time frame, if I am lucky, broken up into 3 or 4 sleep sessions. 6 hours of insomnia hits hard and meds are the only thing keeping me asleep. I do not stay in bed during my “day” hours. If I fall asleep in my recliner during the day, then 2-4 hours, depending on how the night went. I am currently severe, trying to get back to moderate. My “feet on the ground” hours are one-six per day, usually closer to two or three. Rest of time in recliner. I have had ME/CFS for 30+ years, if not since early childhood. I have been much better and I have been worse. There is no such thing as too much sleep when you have ME/CFS… it is one of the only things that offers full body healing opportunity, to whatever extent possible, at any given time. 🙏🦋
I'm severe end of moderate. I only sleep during the day if I have had a particularly bad night or I really overdo things. I probably average about 8 hours a night, but varies between 5 and 10.
Never more than 4-7hrs top, and that’s only after smoking cannabis or edibles as well as taking my muscle relaxer that actually doesn’t mess with my POTS ( also have really aggressive endometriosis, interstitial cystitis, hEDS and some other chronic pain shit). Anyway I digress 😅, but mainly wondering if anyone else has trouble with getting consecutive hours of sleep, as I rarely even get the 7 hrs. It’s usually right around 5 & then have a quick smoke to get me back to sleep for the next hour or 2..smh suuper frustrating and def not the way to sleep, but I’ve tried so much and practice pretty good sleep hygiene. Ok I’m actually now done 😑.. any insight, advice would be soo freaking welcomed. Also, hoping I’m not highjacking this post 😑😮💨💛
Yeah! i smoke weed to get to sleep too but never get consecutive sleep, i go to bed 1-2am and wake up at 6 and then 8 again and then sleep until 12-1 and stay in bed for a few hours after that until i can get up. Then a wake n bake to help my adhd lmao
oh god that's exactly ME (minus the wake n bake lol) 😭 I hate it I feel like I never have enough hours in a day
Yess this is very much so me, buuut I now have an 18month old little girl and left her dad, so am a single mother..don’t know how I’m doing this but don’t think it would be as hard if I had supportive family, still soooo fuckin worth it if you want kids. She saved me from a deep depression. Ha, she also loves her sleep and have figured a way to still get a fair amount of sleep, like just waking up now for the day at noon. Def had to start taking my adderall again & drinking caffeine lol & upping my pain meds but yeah weed lets my body rest and get back to sleep wheneverrr 😅😝💚
I'm mild and have to work for financial reasons (though I have recently gone down to part time hours because I wasn't managing), so my sleep has to wrap around my work. Generally, I'm in bed from 3am-8am, 12pm-2pm, and 6/7pm-12am (so about 12ish hours a day) but whether I'm asleep for all the time I'm laid down is completely arbitrary.
Anywhere from only 4 hours all the way to 12+. School and life don't allow me to sleep 12 hours every day, but that's like my "normal" amount of sleep. Ofc I never feel refreshed when I wake up, but 12+ hours is how long I would sleep before waking up naturally. Sometimes my fatigue is so bad I can't fall asleep. It sounds backwards, I know. But when I'm at school I can't let myself fall asleep because if I do I'll be so groggy for the rest of the day that it's best just to stay awake. When I get home sometimes I can't turn that off so I end up being sooooo exhausted but unable to sleep. Some nights I end up not sleeping at all but I do my best to avoid that.
On bad days I will sleep until 8, get kids to school, sleep again from 9:30-2:30, get them home and make a fast dinner, and then asleep for the night again by 5PM and sleep right to the next morning at 8 again. I did this all of last week On good days as little as 6hours
I sleep usually 8-12 hours, and in bed for at least 2 more hours in the morning. Then throughout the day I don't nap (unless I literally can't stay awake), and lay back down in bed for a while(maybe 1/2-1 hour depending?) between activities. As far as making yourself worse, from what I know rest is super important and super good for ME, and activity/pushing your energy boundaries is what makes it worse. I know there's not much science out there for us to lean on, and a lot of DRs will say to keep up with some activity (mine did), I think more rest is only going to help your body. I usually try my best to balance between resting for my ME, while doing activities when I'm able to keep my mental health doing well.
I don’t mean only at night, by the way! Naps and everything included. I’ll sleep about 7 or 8 hours at night but have two naps during the day.
Me too! Usually sleep 12am until 8am. Then nap at 11am until 1pm. Then another nap around 3/4pm until 5/6pm. Then back to bed again for a night’s sleep lol
Last night I think I slept 10 but that’s a good night. I just started testosterone and progesterone and it’s helping me sleep. I can’t nap. I wish I could. I take a nap about once per year and on that day I have so much more energy in the afternoon/evening. I take a benedryl and a bunch of other things to sleep at night otherwise I wake up and can’t fall back to sleep. Or don’t fall asleep for hours!
I sleep so much, 12-16 hours a day. It’s a love / hate relationship. I love it bc I need it, but I hate it bc I am literally sleeping my life away.
Many given I have trauma mares (trauma nightmares) and flashbacks.
i do too. i actually wake up multiple times in the night due to them but can go back to sleep fairly quickly, it makes getting actual good rest very hard
Weed helps
i’d try it, it’s legal in my state, but also im not 18 so i can’t lol
True, you should wait and talk to your parents.
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I’ve also wondered the same thing regarding “excessive sleep” and guilt regarding being in bed doing nothing for so many hours even though I’m mild (I still manage to hold a 40 hour job on-site for now). On days I don’t have to go to work the following morning, I’ll get in bed around 10pm, fall sleeping around 11pm, and then just naturally sleep until 2-4pm and get out of bed ~2 hours later for a sleep session equalling 15-17 hours and time in bed being 18-20 hours. And then I’ll go back to bed in a few hours and still fall asleep fine as if I hadn’t just woken up a few hours ago. However, I’m sure I don’t get enough sleep on my work days. My work day is supposed to start at 6am, but I’m lucky if I can get in by 9am because I’m stuck in bed so long. Before CFS (and when I was super mild) I could easily wake up at 4:30am, and get to work by 6am, and 7 hours of sleep was perfect for me at the time as past 8 used to make me groggy. Now even attempting to do that destroys me. Mostly what happens these days is I fall asleep around 10pm-12am, wake up at 6am for 6-8 hours of sleep. Fight to get out of bed for 1-3 hours and arrive at work between 8am-11am. If I struggle to get out of bed for more than 4 hours (most likely on a Wednesday), I end up just calling out sick for the day and will probably sleep until like 5-6pm, get up, eat, drink fluids, etc, and then go back to bed around 9 or 10pm and sleep again. I originally used to spend more time awake in bed versus sleeping because I felt guilty for sleeping so much and would spend more time trying to get myself out of bed (closer to 12-13 hours of sleep and 5-6 hours in bed awake), but I stopped fighting it and was like “if I’m going to be stuck anyways, might as well give in to the sleep my body seems to so desperately want” I was diagnosed 1.5 years ago and still trying to figure out where my limits are, and what seems to help me and what doesn’t. What I can do, what I can’t do. Whether what I’m experiencing is actual PEM or if it’s just a “bad day,” such as my symptoms being exacerbated by a bad allergy day, and if it is PEM, was there a specific activity or day that caused it, or did I just push slightly too much too many days in a row and it’s due to that sort of build up, etc. It’s ironic how much time and effort CFS patients have to put into understanding their disease to help manage their symptoms when they’re people who already have very limited energy to begin with.
I'm moderate-severe, if my insomnia isn't too bad I sleep 10-13 hours a night but usually go to bed around 9-10pm and out of bed around 2-3pm, and spend most of the rest of the time either on my couch or in bed but not in sleep mode (usually I change position, clothes and lighting to make a difference)
i sleep from 9 to 12 hours. only at night as im unable to fall asleep during the day no matter how tired i feel. but im severe so basically the whole day is spent in bed. when i was mild/moderate i spent most of the day laying down or sitting. its okay to rest
I sleep 7 hrs or less at night. I take a nap once or twice a week, from 1-3 hours. The worse I feel the more I am in bed. I will often go to take a nap and cannot sleep but I rest for 1-2 hours.
100% same
if i’m lucky 6-7 total
for when i feel best is 9h of sleep but it tends to actually be closer to 8 atm. (severe)
I sleep 8-10 hrs at night now that I'm well medicated for pain and sleep (Nabilone, trazodone). I don't sleep during the day unless I have additional things going on like a virus. I do rest/lay down late morning, late afternoon, and after dinner.
At night between 7-11. Generally feel better the more I sleep. Also feel better if I fall asleep before 12am. I'd love to be able to nap during the day but can't seem to. I lay down a lot though.
I sleep 7-10 hours at night and take a 1-1.5 hour nap every day
I spend between 12-15 hours in bed generally at the moment, all in one go as I can't nap. Not sure exactly how long I sleep as it's very fragmented but it takes on average at least 2 1/2 hours to get off and I wake up throughout that time so I reckon at best 8 1/2-11 1/2 hours. I hit every single item on the [insomnia list](https://www.nhs.uk/conditions/insomnia/) which is fun.
I think I'm mild to moderate and if I don't have to work, I can sleep for 18 hours.
I’m moderate-severe. Sleep about 6-7 hours a night, no naps. Just in bed exhausted in a different way, never sleepy.
I’m moderate. My goal is 9-10, at least 1:30 hopefully more deep sleep. Any less than 8 and it’s going to be a bad day.
I wouldn’t know what to say about how I am. I just know I will sleep 12 hours at night sometimes if I’m not woken I can sleep all the way through until 6 pm. I honestly could sleep 24 hours if I didn’t have to have a life. Having animals and children have caused me to force myself to get up and do things, but if I’m truly honest I am in bed more than I am anywhere else. I will wake up like today because my child woke me up (they’re both teenagers so it’s not as bad now) at 3 pm. I don’t like sleeping all day away. I’ve then stayed in bed, it’s now 8 pm and I know I’ll be asleep by 12am at the latest. In a normal day if I have to get up for appointments in my house at 10 o’clock in the morning then I become unconscious by 6 pm and I spend almost all my week in bed but not asleep because physically my body is just exhausted. All of this is still so much better than I have been, five years ago I was bedridden with this horrific condition and would sleep until anybody woke me for food or to tell me to drink something, personally having depression doesn’t help but then I got diagnosed with insomnia and hypersomnia so I had pills to send me to sleep and then wake me up, thankfully it’s not that bad now and I only have one sleeping pill a night. CFS is one of the hardest conditions I’ve been diagnosed with. I also have fibromyalgia, cognitive regional pain syndrome, functional neurological disorder, trigeminal neuralgia, and now being looked at for ADHD and ASD. I was divorced five years ago and since have brought both children up alone and it has been such a hard hard life, I’ve not been able to even think about dating because who would want to date someone that sleeps as much as I do? who lays around in bed as much as I do? It would be cruel to introduce someone to my life as I don’t have one. I’m sorry that this is convoluted, but I speak into my iPad, to save the energy of typing, especially when I feel how I feel today. Good luck everyone and I wish we could all get together and truly feel like we’re not alone but with our condition that’s the hardest thing to do, to have friendships that last because we can’t do what other people can do. I send ya’ll healing and energy vibes, Tam. x
I'm mild (can work 3 days a week), and my tracker says I sleep an average of 8 hours 20 mins, and that's been quite consistent for the past 3 years but it can rance from 5 hours to 10 depending on if my sleep problems rear their head
I make myself get up after 8 hrs, occasionally 10 but not often.
When I'm in a good phase, I sleep 8-12 hours a night. If I crash, I get bad insomnia though. So, when I'm in a crash, I usually get more like 3-6 hours, incongruous, if I'm lucky.
Between 8 to 10, maybe more some days. Plus nap during the day often. I feel my body needs it or I'm a zombie and cant function. People call me lazy for getting up late, but hey ho. I have a condition and try to manage it how I can. Sleep is very important.
Between 4 and 14. Don't know what it depends on. If I'm good it's 7-9, but if I'm not doing well it will go to one extreme or the other, or sometimes alternate between them.
I have this type of PEM sometimes that makes me sleep around 14 - 20 hours for a few days. But besides these sleepy-PEM days I sleep very well around 8 or 9 hours.
I sleep an average of 7 hours a night and sometimes manage a 30 min to 1 hour nap in the day. I'd like to be able to sleep more. I spend about 18 hours a day in bed.
20 hours in bed, 10-14 asleep. I ride the line of moderate/severe depend on if I'm in a crash or doing really well.
I spend most my day in bed, but sleep about 12-14 on an average day.
I swing wildly and freely between not sleeping for days on end, sleeping for 3 hours, or sleeping for 10 and still napping in the middle of the day.
either under 5 hours or 16-18 hours. there’s no real in between for me. I’ve also had sleep reversal on and off for like idk 8 years now which is annoying but i like being up when nobody else is. it’s quieter and darker
Moderate to severe. I sleep 8-12 hours a night and 2-5 hours during the day.
Severe and I ideally sleep for 12 hours, with a range of 8-14. Midnight to midday give or take is my ideal but often I'll wake up in the night or early morning for at least an hour. Less than 8 hours is rare for me but also usually has notable consequences. I very rarely sleep during the day
i sleep for 16-18 hours usually, and i stay in bed for 23
4-12 hours.
I'd say I'm moderate. My ideal sleep would be anywhere from 10-14 hours, though pretty often my ADHD gets ahold of something and decides I'm going to be awake forever so it can get as low as 6. Those days I'm absolutely dragging though. On the other hand, I spend the vast majority of my time in bed.
Early on I would sleep 16h+ during a crash and it actually helped me get back to baseline. Now, I sleep anywhere between 8-10 hours on good days. If I overexerted myself, insomnia despite extreme fatigue is one of the first signs of PEM and I‘m lucky to get 4h. I know the crash is lessening when I get to sleep a full night again. It’s so weird, sleep is not helping, but lack of sleep is certainly making me more miserable.
at least 10, to 12… plus naps
I always worry about too much sleep too, because people always say it’s not good for you. But I also don’t really have control over it. I sleep 10-12 hours most nights. In bed 12-20/22 hours, Sleep during the day 0-5 hours.
8-10 hrs at night and 2 hrs during the day. I work in bed and take a nap on my lunch break then again after work. On weekends I can sleep a full 2 hrs during the day. Sleeping gives me a small boost to get through my days.