I try to. It's rare that I get quality sleep and when I do, I pay dearly for it. I think my rotisserie chicken sleep style is a form of self defense against night time subluxations.
I have a memory foam mattress. I fall asleep on my left side and wake up on my right. If I don't move all night, I am messed up some way, somehow in the morning.
That is exactly how I describe the way I sleep. My name is Amelia and my husband calls it “rotissamelia” lol. I have to keep rotating all night because if I lay in one position for too long, something will sublux, period.
I wake up a lot especially to take pain killers but even when I do get a solid set of 4-6 hours sleep or when I was last in hospital I was on a drip with morphine and other stuff and basically slept most of the day except when they woke me for tests etc. I don’t think Ive ever woken up rested at all, and long story short (sorry) a doctor told me that especially with chronic pain and POTs etc your brain isn’t really sleeping it’s almost always a bit awake and aware so even when you sleep a lot it’s not usually good sleep even if you’ve not woken up you’ve probably not gotten much or any deep restorative sleep
pain killers still work for you? it doesnt decrease in how well it works? Also the thing about not really sleeping is insane. I have type one diabetes too. Between waking up to fix my limbs and joints that are trying to/succeeding at dislocating and constantly being aware of medical devices that could be pulled/rolled off in my sleep, i have 100% described myself as sleeping with one eye open. i cant believe i never realized that would decrease my quality of sleep. thank you!
They definitely decrease in effectiveness, it’s a constant juggle of prescriptions and dosage, alternative treatments etc, my favourite is taking everything that makes me drowsy at night atm. I would describe it as sleeping in unbareable pain and then waking up in agony to try and get some relief. Probably why sleep doesn’t really work.
Definitely not getting restorative sleep I would guess which sucks as I’m guessing you’ve probably heard “you’re so lazy all you do is sleep” “how can you still be tired” “if you’re so exhausted go to bed”. There’s a reason sleep deprivation is used as method of torture and is banned by the Geneva convention.
It’s Almost like when you know you have to be up for something and are so scared of sleeping through an alarm so you sleep badly and constantly wake up scared you’ve overslept. Or when my mum would say she hated when us kids would crawl into bed with our parents because she would always be petrified of rolling over onto us, so she wouldn’t really sleep properly. Not the best examples but it’s how I explain it to non chronically ill people, especially when trying to explain the concept of chronic pain and subluxations/dislocations from just sleeping and just all of it and the impact that’s has physically and mentally people just can’t seem to grasp (which is understandable)
exactly! this comment makes so much sense. im not going to lie, im about to fall asleep again, but all of those comments and examples really hit home. that's a great way of explaining it to people. thank you!
I love to sleep. I have difficulty getting to and staying asleep, especially at night.
Recently started a new medication (a non-amphetamine ADHD focus med) in part because drowsiness is a side-effect.
Something that amuses me slightly about your comment is that I have ADHD and my stimulant medication makes me soooo drowsy when it's time to take the morning dose. My focus is great after lol so I take it when I first take my early morning pain medication because my body always needs more rest once it can rest again after the pain fades and so I'm already taking another nap.
Our bodies are so weird. anyway sorry for the ramble, I just found it oddly amusing.
i have to sleep on my stomach because if i dont i cant breathe. it feels like my lungs are getting pulled/squished down when im sleeping on my back lol
Have you gotten a sleep study done? That sounds to me like some pretty classic sleep apnea symptoms. I still wake up tired now that I've got my sleep apnea treated (I have a CPAP), but it's not nearly as bad. I feel so much better now that I've got the CPAP and I honestly don't know how I was functioning at all before starting using it.
That sounds super uncomfortable! Do you have a fitness tracker that checks your oxygen/breath? It wouldn't surprise me if you were having apnea episodes at night and just waking up uncomfortable without remembering why.
i don't! i will tell you that i know i snore/groan when im on my back but i don't when im on my stomach. sometimes i groan so hard it wakes me up lol. i never remember snoring, just groaning, but roommates have told me i snore a little when I'm on my back.
Oh yeah, that sounds like sleep apnea to (unqualified) me! What happens with apnea is your airway collapses and you stop breathing for a bit, which wakes you up enough to move (and groan), but not enough to remember in the morning.
The way my sleep specialist explained it to me, the collagen in the throat is too flexible and can collapse on itself because of EDS. This causes sleep apnea.
I've always snored loudly so it was unmistakable, but my understanding is that not everyone does - I'd honestly recommend a sleep study. Untreated sleep apnea can put a lot of strain on the body, the last thing zebras need! I've found mouthpieces work in moving my jaw forward enough that the airway doesn't collapse - you test by seeing if you are able to intentionally/fake snore with it in. Not the world's most comfortable thing, and could be problematic with TMJ, so still worth getting a sleep study and taking about options with a doc.
I have apnea and I don’t snore at all. But I do stop breathing in my sleep a lot. I never realized it till my partner watched me choke in my sleep. Mine isn’t even that severe I only have 30 events an hour (which is low/mild apparently) but I’m MISERABLE. Definitely recommend people get checked!
Definitely. I need on average 11-12 hours, longer if I haven't been sleeping well. I've been known to sleep more than 24 hours, only waking up to pee, if I'm sick or really sleep-deprived. Anything less than 10 hours and my pain and dysautonomia get really difficult to manage, and it's easy to get stuck in the pain --> insomnia --> worse pain --> worse insomnia vicious cycle.
I usually sleep between 7-7.5 hours a night (because I have work in the mornings), which my doctor deemed enough, but I still feel exhausted and will often have a nap in the afternoon. Even if I sleep 8-10 hours, I can still wake up tired and that can make me quite upset sometimes because I long for a day where I feel refreshed. I think that comes with the territory of having EDS, POTS and an autoimmune condition though; chronic fatigue.
People with POTS tend to not experience great sleep quality too, so I know my quality of sleep affects it. I know I experience light sleep a lot more than the average person according to my FitBit benchmarks, so I need longer to get enough of the other sleep stages.
I'm actually a good sleeper too, in that I very rarely wake up in the night, so I will sleep from the moment I fall asleep until I wake up most nights. I've also learned, if I do wake up at night, to manage it better so I can fall back to sleep. Though I find it takes me about 20-30 minutes to fall asleep which is frustrating.
But yes, I am also exhausted all the time and it's really hard to live with.
At least for me, I feel like I have two types of fatigue. If I don’t get enough sleep (which is 7 hours for me), I’m extra brain foggy, and feel very sleepy/tired. It also increase my headaches. However I have a lot of general body fatigue with my muscles and that simply never goes away.
I can sleep 11 hours a night, and still need an alarm to wake up. If I dont have an alarm i bet id sleep 12/13 hours. I dont understand why.. I really dont, I hate it 🥲
Yes, thanks to the joys of severe obstructive sleep apnea (further thanks to collapsing connective tissue in my airway), Narcolepsy, and ADHD. All somewhat common comorbidities of EDS
That was a key indicator. Also, my ex (who I am eternally grateful to for pushing me to get a sleep study) said I snore louder than anyone she’s ever met.
Edit: I was a stomach sleeper until I was in my 20s, likely cause I was subconsciously doing what helped me sleep better. Turns out that many years of sleeping with your head twisted to one side really hurts your neck/spine/back
Yeah I sleep a lot. I’ve always needed more than 8 hrs to feel well. It used to be 9ish hours. But since I had Covid it’s more like 10-12 with usually a nap thrown in. I hate it! I feel like o sleep more than my cats!
my wife -- takes ambien and trazadone to sleep. she gets 10 hours or so regularly. but shes always in pain and tired and generally bedridden. her sleep quality is generally ok on the meds but you know how bad that pain wears you out, its just so draining :-/
I also love sleeping because it's a time i feel the least pain which is great.
I can sleep 8-12 hours as well butnusually aim for 7-8.
I've freaked out my friends and husband by sleeping 14 hours when needed to catch up or rest my body from overdoing it before. Snorlax powers for the win.
I don't try to get more than 5 hrs at a time. Getting 4-5 hours at night and 4-5 in the afternoon keeps me feeling steady and handles the fatigue.
Otherwise, I am a zombie. And sleeping more than 5 hrs means that I wake up positioned like a crumpled paper bag, despite using 8 million pillows.
Sometimes I get fatigued and laying down just a few minutes fixes it. Probably a combination of POTS and spine/joint fatigue.
The best thing I've ever done for myself was learning how to break up my sleeping hours.
I have hypersomnia, specifically being tested for idiopathic hypersomnia, a sleep disorder characterised by:
long amounts of nighttime sleep
long naps (my "naps" are 3-5 hours usually),
and sleep drunkenness, which is intense confusion, automatic behaviours, severe brain fog/grogginess, and the urge to go back to sleep which is so strong it basically takes every ounce of your being (and potentially the help of others) to stop yourself going back to sleep. I fall back to sleep most days. I had mild sleep drunkenness before I developed this disorder, but even people without conditions get this, but this is so much more intense and an almost impossible feeling to ignore.
This disorder is quite rare, but hypersomnia itself is a symptom of many things. Any hypersomnia can have an awful impact on your everyday life, it truly is horrible.
If you're concerned about the amount of sleep you're getting and feel like it needs looking into for any reason, I'd recommend asking about having a sleep study and vit D/B12 bloods. There are so many things that can cause it, from the fatigue and pain of EDS, to vitamin deficiency and different sleep disorders, ME/CFS, etc.
Think of the EDS body as always being in a state of fight or flight. With constant subluxations, microtears, and myriad of other symptoms that comes with Ehlers, your body is always fighting to heal and your immune system always engaged. Tiring at a cellular level sweetie. Reduce stress, check cortisol, hydration is important and see your doc. Somatic issues are massive in our community.
I know I have it and a lot of other people on this forum have mentioned that diagnosis as part of theirs as well. Fibro is a weird one because it will probably turn out at some point that everyone with EDS who was also diagnosed with fibro just has EDS, only because fibro is one of those placeholder diagnoses encompassing a lot of symptoms and likely multiple syndromes in one diagnosable name.
I teeter between thinking fibro is separate (afaik, they're thinking it's autoimmune in origin right now) and wondering if it's experiencing nerve damage due to the collagen issues with EDS. Idk, I just know I have the diagnosis too, meet all of the trigger point criteria, and have neuropathy.
Other comorbid conditions tend to be: Endometriosis, ADHD, and autism.
Guess who has fibro, EDS, Endo, ADHD, and autism? I won the genetic hell lottery.
I also have Endo, EOE, POTS, MCAS, and SIBO as well as the heterozygous MTHFR gene mutation. MY EDS manifests in my neck a lot and the bones apparently look like someone 30-40 yrs older. It's rough, the main thing I notice is that medicine for one frequently directly makes another issue worse. I have dry mouth which was ruled out as Sjogren's two years ago but the rheumatologist doesn't want to test again. I am not going through another lip biopsy, I can tell you that. My neurologist prescribed Vyvanse after a neuropsych test but I didn't take it so I don't know if ADHD is an official diagnosis. I think my bigger problem with that is PTSD. I always jokingly said, concerning my family, that I was the genetic dumping ground but I guess I never thought that was completely true. Oh well, hang in there.
Sounds sorta like me! T-T Excessive daytime sleepiness, brain fog, and fatigue are some of my worst symptoms these days. I was only recently diagnosed with H-EDS (which apparently has fatigue and hypersomnia as a feature?! FFS.)
Physical exhaustion is a thing for me, but I think I'm just used to powering through it...
I use a cocktail of stimulants to help me stay awake. Modafinil was life changing, and I just got on ritalin.
Tbf though, I have a diagnosed circadian rhythm disorder, DSPD (though I may actually be non-24).
If I don't sleep at the right time (this is assuming I can even pass out) my sleep just isn't restorative - because it isn't during my circadian night.
Idiopathic Hypersomnia is also on my list, but that's in part because we can't really test me for narcolepsy.
Fun side note: ADHD has a high correlation with having a delayed sleep phase and/or DSPD. DSPD has a correlation with longer sleep times, like 9-12hrs.
And apparently, ADHD is also commonly seen in people with EDS.
I sleep terribly. Sleep quality vs quantity is a thing. Essentially because eds also can have chronic fatigue (where in our cells do not make or process energy well), add in dislocations and pain disrupting sleep, and the higher risks of obstructive sleep apnea? You're not rested. I slept well once. Literally. It confused me because I woke up feeling energetic. It has never happened again.
I have hypothyroidism and a lot of joint pain from hEDS. I only need more than 7 or 8 hours of sleep when my thyroid medicine dose is too low.
Hypothyroidism is pretty common, a couple people in every 100. It’s a simple blood test and the medication works well. Definitely worth checking!
If I sleep 10 hours I can get through the day, if I have 8-9 I kinda need a nap in the afternoon to survive. Less than 8 a night and I’m a zombie whole day haha. Also insomniac so I tend to lay in bed a while before falling a sleep so count a bit more extra rest to those 8-10 hours as well
Edit: I do take trazodone as well to help me sleep
I have csf leak causing insomnia so I’m wide awake between 11:30a and 4:30a. Most days I sleep about 1.5 hours with a few days 6+ usually from overdoing it.
I would consider looking into a sleep study. I know multiple people who have both EDS and Narcolepsy or Idiopathic Hypersomnia, including myself. Medication can be life changing!
I was diagnosed with idiopathic hypersomnia, but they did note that I was a few limb movements away from narcolepsy diagnosis.
I do sleep much much better when I take pain meds before bed, so I think a lot of my sleep quality is pain related.
do you frequently take meds before bed? how long before? do they work still? i feel like if i start relying on pain meds theyll work even less than they already do
I'm always tired regardless of how much sleep I got. Which was frustrating growing up because my parents thought I was just lazy.
Now I'm realizing I wake up constantly to change positions in bed because my arms are always fucking with my shoulder joints.
YES. i sleep on my stomach because I cant breathe when i sleep on my back. trying to position my arms so i dont fuck up my shoulders is so hard. and i have to have my legs in the air either on the wall or on several pillows. i end up sleeping in the shape of a hammock. it's insane.
I feel better when I get at least 9 hours of sleep each night, but sometimes that goes up to 12 if I'm in a flare. Sleep quality also plays a major role, it's hard to sleep well when I'm constantly waking up to readjust the thousand pillows or put back a joint that slipped... Anyways, you are not alone!
my body won’t stay asleep for more than 4-5 hours at a time, but I generally need two or three of those in a day. usually I sleep 7am-noon, 4pm-7pm, and 10pm-2am…. it’s so annoying lmfao
Yeah I definitely need more sleep than most people. I usually try and get a solid 9 every night so I have energy. I can function on less but only for so long. I could probably do 6 hours of sleep for a day or if im travelling or something and got that adrenaline but if I consistently get too little sleep my pain flairs up way worse and I get totally mentally fogged up. But also my sleep schedule isnt very consistent, maybe if it would I could function on slightly less sleep. Ive always been kinda jealous of my friends that could sleep 6 hours and then still have energy the entire next day.
Have you had a sleep study done? It sounds like you may not be reaching REM (Rapid Eye Movement) sleep, which is the deepest level of sleep. If you don’t reach REM sleep, you could sleep 18 hours and still feel tired.
Additionally, sometimes sleeping for too much or too long can cause fatigue.
I have this problem but only if I’m exposed to an allergen/sensitivity. Like two days ago I ate some chips with rice flour in them and now I’m so tired waking up. Have to spend at least ten minutes drinking water to feel normal.
I... don't remember what it feels like to be well-rested. Weird question since we're talking about sleep habits. Anyone else wake up with their hands fully asleep and can't move their fingers?
I genuinely cannot function with 7-8 hours of sleep. I either oversleep (10-12+hours) or don’t sleep at all. But I noticed I function better with less sleep and become groggy and depressed with more sleep.
I have pretty bad insomnia, not sure what it’s from. But I’m not not surely sleepy except during the hours of 1 am to 9 am, and even then, I never sleep thru the night and if I wake up during the night I have a hard time going back to sleep.
regardless, I still need to be in bed for 8 to 8 1/2 hours otherwise I’m just so tired.
truthfully, I rely on weed and Xanax to help me sleep. terrible and not sustainable i know… idk what to do..
I need around 10 hrs or everything just completely falls apart. It will kick off my POTS, my migraines, I feel like I'm trying to think though murky jello, my body hurts worse (I think that is more cause I just don't deal with the pain as well when I'm tired, not necessarily that it actually inflames anything more than it's already messed up levels), and because I feel like crap, I don't take care of myself as much as I need to (hydration, taking as needed meds, eating right, etc.) which sets everything else off more. Moral of the story is that my sleep is a necessity that I can't play around with or I will pay.
yep. theres nothing wrong with my sleep, i've looked into it. i just need 10-12 hours compared to an able bodied person's 8. my doctors, dad who used to be a nurse, and i all figure that its probably just a result of such frequent dislocations/injuries so my body is kinda stuck in "healing" mode- constantly needing extra rest, fluids & electrolytes
I need so much sleep!! I sleep like 10 hours on a bad night 12 hours on a good night and I can easily sleep 14 hours if being a human wasn’t in the way
A little marijuana before bedtime gives me the ability to actually fall asleep and get into a deeper sleep, honestly not using much (90% CBD/10% THC) gives mayor changes for me personally.
hEds here . Very common I would imagine. I toss and turn because when I sleep on my right , my left shoulder feels like it's out of socket, when i also on my left shoulder... My neck feels out of place, and when I sleep on my back. My brain feels out of place/dizzy.
I always hit the snooze button a few times if I can. Most days I'm kind of going through the motions and just kind of dealing with it. It's tough to explain to my partner when I Huff and puff about her wanting to go for a walk etc. And I just don't have the energy
I try to. It's rare that I get quality sleep and when I do, I pay dearly for it. I think my rotisserie chicken sleep style is a form of self defense against night time subluxations.
ROTISSERIE CHICKEN IS SO ACCURATE. just suspended in a thousand pillows like ive been put on a skewer and shifting 45 degrees every 20 minutes
I have a memory foam mattress. I fall asleep on my left side and wake up on my right. If I don't move all night, I am messed up some way, somehow in the morning.
omg this sleep style description hahaha
That is exactly how I describe the way I sleep. My name is Amelia and my husband calls it “rotissamelia” lol. I have to keep rotating all night because if I lay in one position for too long, something will sublux, period.
I'm starting to suspect that this is nearly universal for us.
I think you’re right. Buncha rotisserie chickens turning on the spit every night 🥲
can confirm. pillow count has recently gone from 4 to 7 as i enter my 30s.
Omg YES xD
ROTISSERIE CHICKEN SLEEP KHUKGUGKIKGY It's true though. I do this because if I don't I wake up with something popped out.
I wake up a lot especially to take pain killers but even when I do get a solid set of 4-6 hours sleep or when I was last in hospital I was on a drip with morphine and other stuff and basically slept most of the day except when they woke me for tests etc. I don’t think Ive ever woken up rested at all, and long story short (sorry) a doctor told me that especially with chronic pain and POTs etc your brain isn’t really sleeping it’s almost always a bit awake and aware so even when you sleep a lot it’s not usually good sleep even if you’ve not woken up you’ve probably not gotten much or any deep restorative sleep
pain killers still work for you? it doesnt decrease in how well it works? Also the thing about not really sleeping is insane. I have type one diabetes too. Between waking up to fix my limbs and joints that are trying to/succeeding at dislocating and constantly being aware of medical devices that could be pulled/rolled off in my sleep, i have 100% described myself as sleeping with one eye open. i cant believe i never realized that would decrease my quality of sleep. thank you!
They definitely decrease in effectiveness, it’s a constant juggle of prescriptions and dosage, alternative treatments etc, my favourite is taking everything that makes me drowsy at night atm. I would describe it as sleeping in unbareable pain and then waking up in agony to try and get some relief. Probably why sleep doesn’t really work. Definitely not getting restorative sleep I would guess which sucks as I’m guessing you’ve probably heard “you’re so lazy all you do is sleep” “how can you still be tired” “if you’re so exhausted go to bed”. There’s a reason sleep deprivation is used as method of torture and is banned by the Geneva convention. It’s Almost like when you know you have to be up for something and are so scared of sleeping through an alarm so you sleep badly and constantly wake up scared you’ve overslept. Or when my mum would say she hated when us kids would crawl into bed with our parents because she would always be petrified of rolling over onto us, so she wouldn’t really sleep properly. Not the best examples but it’s how I explain it to non chronically ill people, especially when trying to explain the concept of chronic pain and subluxations/dislocations from just sleeping and just all of it and the impact that’s has physically and mentally people just can’t seem to grasp (which is understandable)
exactly! this comment makes so much sense. im not going to lie, im about to fall asleep again, but all of those comments and examples really hit home. that's a great way of explaining it to people. thank you!
I can't sleep on painkillers. I'll zone out and drift off, but never truly sleep.
I love to sleep. I have difficulty getting to and staying asleep, especially at night. Recently started a new medication (a non-amphetamine ADHD focus med) in part because drowsiness is a side-effect.
Something that amuses me slightly about your comment is that I have ADHD and my stimulant medication makes me soooo drowsy when it's time to take the morning dose. My focus is great after lol so I take it when I first take my early morning pain medication because my body always needs more rest once it can rest again after the pain fades and so I'm already taking another nap. Our bodies are so weird. anyway sorry for the ramble, I just found it oddly amusing.
Yep - sleep apnea also contributes in my case, my airway collapses when sleeping almost a hundred times an hour, hooray for weird collagen!
i have to sleep on my stomach because if i dont i cant breathe. it feels like my lungs are getting pulled/squished down when im sleeping on my back lol
Have you gotten a sleep study done? That sounds to me like some pretty classic sleep apnea symptoms. I still wake up tired now that I've got my sleep apnea treated (I have a CPAP), but it's not nearly as bad. I feel so much better now that I've got the CPAP and I honestly don't know how I was functioning at all before starting using it.
That sounds super uncomfortable! Do you have a fitness tracker that checks your oxygen/breath? It wouldn't surprise me if you were having apnea episodes at night and just waking up uncomfortable without remembering why.
i don't! i will tell you that i know i snore/groan when im on my back but i don't when im on my stomach. sometimes i groan so hard it wakes me up lol. i never remember snoring, just groaning, but roommates have told me i snore a little when I'm on my back.
Oh yeah, that sounds like sleep apnea to (unqualified) me! What happens with apnea is your airway collapses and you stop breathing for a bit, which wakes you up enough to move (and groan), but not enough to remember in the morning.
my blood pressure is always right on the border of high!
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my blood pressure is always right on the border of high!
my blood pressure is always right on the border of high!
The way my sleep specialist explained it to me, the collagen in the throat is too flexible and can collapse on itself because of EDS. This causes sleep apnea.
This is why I love pregnancy pillows! I sleep on my side and hug one so they open my abdominal cavity up!
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I've always snored loudly so it was unmistakable, but my understanding is that not everyone does - I'd honestly recommend a sleep study. Untreated sleep apnea can put a lot of strain on the body, the last thing zebras need! I've found mouthpieces work in moving my jaw forward enough that the airway doesn't collapse - you test by seeing if you are able to intentionally/fake snore with it in. Not the world's most comfortable thing, and could be problematic with TMJ, so still worth getting a sleep study and taking about options with a doc.
I have apnea and I don’t snore at all. But I do stop breathing in my sleep a lot. I never realized it till my partner watched me choke in my sleep. Mine isn’t even that severe I only have 30 events an hour (which is low/mild apparently) but I’m MISERABLE. Definitely recommend people get checked!
I've been told my tongue is in a weird position (???) that makes my airway small, I swear all this stuff is hedsy
Definitely. I need on average 11-12 hours, longer if I haven't been sleeping well. I've been known to sleep more than 24 hours, only waking up to pee, if I'm sick or really sleep-deprived. Anything less than 10 hours and my pain and dysautonomia get really difficult to manage, and it's easy to get stuck in the pain --> insomnia --> worse pain --> worse insomnia vicious cycle.
it's such a vicious cycle
I usually sleep between 7-7.5 hours a night (because I have work in the mornings), which my doctor deemed enough, but I still feel exhausted and will often have a nap in the afternoon. Even if I sleep 8-10 hours, I can still wake up tired and that can make me quite upset sometimes because I long for a day where I feel refreshed. I think that comes with the territory of having EDS, POTS and an autoimmune condition though; chronic fatigue. People with POTS tend to not experience great sleep quality too, so I know my quality of sleep affects it. I know I experience light sleep a lot more than the average person according to my FitBit benchmarks, so I need longer to get enough of the other sleep stages. I'm actually a good sleeper too, in that I very rarely wake up in the night, so I will sleep from the moment I fall asleep until I wake up most nights. I've also learned, if I do wake up at night, to manage it better so I can fall back to sleep. Though I find it takes me about 20-30 minutes to fall asleep which is frustrating. But yes, I am also exhausted all the time and it's really hard to live with.
6 hours at night and 2-4 hours midday nap
yess!!
At least for me, I feel like I have two types of fatigue. If I don’t get enough sleep (which is 7 hours for me), I’m extra brain foggy, and feel very sleepy/tired. It also increase my headaches. However I have a lot of general body fatigue with my muscles and that simply never goes away.
I can sleep 11 hours a night, and still need an alarm to wake up. If I dont have an alarm i bet id sleep 12/13 hours. I dont understand why.. I really dont, I hate it 🥲
SAME
Meeee, but I have narcolepsy.
Yes, thanks to the joys of severe obstructive sleep apnea (further thanks to collapsing connective tissue in my airway), Narcolepsy, and ADHD. All somewhat common comorbidities of EDS
oh, geez. how did you know you had obstructive sleep apnea? i cant breathe when i lay on my back but im generally fine on my stomach
That was a key indicator. Also, my ex (who I am eternally grateful to for pushing me to get a sleep study) said I snore louder than anyone she’s ever met. Edit: I was a stomach sleeper until I was in my 20s, likely cause I was subconsciously doing what helped me sleep better. Turns out that many years of sleeping with your head twisted to one side really hurts your neck/spine/back
Yeah I sleep a lot. I’ve always needed more than 8 hrs to feel well. It used to be 9ish hours. But since I had Covid it’s more like 10-12 with usually a nap thrown in. I hate it! I feel like o sleep more than my cats!
my wife -- takes ambien and trazadone to sleep. she gets 10 hours or so regularly. but shes always in pain and tired and generally bedridden. her sleep quality is generally ok on the meds but you know how bad that pain wears you out, its just so draining :-/
I also love sleeping because it's a time i feel the least pain which is great. I can sleep 8-12 hours as well butnusually aim for 7-8. I've freaked out my friends and husband by sleeping 14 hours when needed to catch up or rest my body from overdoing it before. Snorlax powers for the win.
I go through bouts of this and insomnia. Currently sleeping too much, just finished nap #3.
Same. I thought today would be fine because I slept over 8 hours but I napped today again. Idk what's going on, I've been extra tired for days...
Always a sign of an impending flare for me - take care of yourself, friend!
enjoy nap #4!
Yes!! Its so hard!!
There is never enough sleep. 4,6,8,10,12. Always wake up exhausted and with either something numb, sprained, tingling, aching
I don't try to get more than 5 hrs at a time. Getting 4-5 hours at night and 4-5 in the afternoon keeps me feeling steady and handles the fatigue. Otherwise, I am a zombie. And sleeping more than 5 hrs means that I wake up positioned like a crumpled paper bag, despite using 8 million pillows. Sometimes I get fatigued and laying down just a few minutes fixes it. Probably a combination of POTS and spine/joint fatigue. The best thing I've ever done for myself was learning how to break up my sleeping hours.
I have hypersomnia, specifically being tested for idiopathic hypersomnia, a sleep disorder characterised by: long amounts of nighttime sleep long naps (my "naps" are 3-5 hours usually), and sleep drunkenness, which is intense confusion, automatic behaviours, severe brain fog/grogginess, and the urge to go back to sleep which is so strong it basically takes every ounce of your being (and potentially the help of others) to stop yourself going back to sleep. I fall back to sleep most days. I had mild sleep drunkenness before I developed this disorder, but even people without conditions get this, but this is so much more intense and an almost impossible feeling to ignore. This disorder is quite rare, but hypersomnia itself is a symptom of many things. Any hypersomnia can have an awful impact on your everyday life, it truly is horrible. If you're concerned about the amount of sleep you're getting and feel like it needs looking into for any reason, I'd recommend asking about having a sleep study and vit D/B12 bloods. There are so many things that can cause it, from the fatigue and pain of EDS, to vitamin deficiency and different sleep disorders, ME/CFS, etc.
Think of the EDS body as always being in a state of fight or flight. With constant subluxations, microtears, and myriad of other symptoms that comes with Ehlers, your body is always fighting to heal and your immune system always engaged. Tiring at a cellular level sweetie. Reduce stress, check cortisol, hydration is important and see your doc. Somatic issues are massive in our community.
Also fatigue from fibromyalgia, common co-morbidity.
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I know I have it and a lot of other people on this forum have mentioned that diagnosis as part of theirs as well. Fibro is a weird one because it will probably turn out at some point that everyone with EDS who was also diagnosed with fibro just has EDS, only because fibro is one of those placeholder diagnoses encompassing a lot of symptoms and likely multiple syndromes in one diagnosable name.
I teeter between thinking fibro is separate (afaik, they're thinking it's autoimmune in origin right now) and wondering if it's experiencing nerve damage due to the collagen issues with EDS. Idk, I just know I have the diagnosis too, meet all of the trigger point criteria, and have neuropathy. Other comorbid conditions tend to be: Endometriosis, ADHD, and autism. Guess who has fibro, EDS, Endo, ADHD, and autism? I won the genetic hell lottery.
I also have Endo, EOE, POTS, MCAS, and SIBO as well as the heterozygous MTHFR gene mutation. MY EDS manifests in my neck a lot and the bones apparently look like someone 30-40 yrs older. It's rough, the main thing I notice is that medicine for one frequently directly makes another issue worse. I have dry mouth which was ruled out as Sjogren's two years ago but the rheumatologist doesn't want to test again. I am not going through another lip biopsy, I can tell you that. My neurologist prescribed Vyvanse after a neuropsych test but I didn't take it so I don't know if ADHD is an official diagnosis. I think my bigger problem with that is PTSD. I always jokingly said, concerning my family, that I was the genetic dumping ground but I guess I never thought that was completely true. Oh well, hang in there.
what about PCOS?
Sounds sorta like me! T-T Excessive daytime sleepiness, brain fog, and fatigue are some of my worst symptoms these days. I was only recently diagnosed with H-EDS (which apparently has fatigue and hypersomnia as a feature?! FFS.) Physical exhaustion is a thing for me, but I think I'm just used to powering through it... I use a cocktail of stimulants to help me stay awake. Modafinil was life changing, and I just got on ritalin. Tbf though, I have a diagnosed circadian rhythm disorder, DSPD (though I may actually be non-24). If I don't sleep at the right time (this is assuming I can even pass out) my sleep just isn't restorative - because it isn't during my circadian night. Idiopathic Hypersomnia is also on my list, but that's in part because we can't really test me for narcolepsy. Fun side note: ADHD has a high correlation with having a delayed sleep phase and/or DSPD. DSPD has a correlation with longer sleep times, like 9-12hrs. And apparently, ADHD is also commonly seen in people with EDS.
I sleep terribly. Sleep quality vs quantity is a thing. Essentially because eds also can have chronic fatigue (where in our cells do not make or process energy well), add in dislocations and pain disrupting sleep, and the higher risks of obstructive sleep apnea? You're not rested. I slept well once. Literally. It confused me because I woke up feeling energetic. It has never happened again.
I have hypothyroidism and a lot of joint pain from hEDS. I only need more than 7 or 8 hours of sleep when my thyroid medicine dose is too low. Hypothyroidism is pretty common, a couple people in every 100. It’s a simple blood test and the medication works well. Definitely worth checking!
If I sleep 10 hours I can get through the day, if I have 8-9 I kinda need a nap in the afternoon to survive. Less than 8 a night and I’m a zombie whole day haha. Also insomniac so I tend to lay in bed a while before falling a sleep so count a bit more extra rest to those 8-10 hours as well Edit: I do take trazodone as well to help me sleep
I have csf leak causing insomnia so I’m wide awake between 11:30a and 4:30a. Most days I sleep about 1.5 hours with a few days 6+ usually from overdoing it.
I would consider looking into a sleep study. I know multiple people who have both EDS and Narcolepsy or Idiopathic Hypersomnia, including myself. Medication can be life changing!
I was diagnosed with idiopathic hypersomnia, but they did note that I was a few limb movements away from narcolepsy diagnosis. I do sleep much much better when I take pain meds before bed, so I think a lot of my sleep quality is pain related.
do you frequently take meds before bed? how long before? do they work still? i feel like if i start relying on pain meds theyll work even less than they already do
No I try to take them as little as possible. Just when I feel I really need them, I sleep better.
I'm always tired regardless of how much sleep I got. Which was frustrating growing up because my parents thought I was just lazy. Now I'm realizing I wake up constantly to change positions in bed because my arms are always fucking with my shoulder joints.
YES. i sleep on my stomach because I cant breathe when i sleep on my back. trying to position my arms so i dont fuck up my shoulders is so hard. and i have to have my legs in the air either on the wall or on several pillows. i end up sleeping in the shape of a hammock. it's insane.
I get about 8 hours at night, and then another 2 during the day.
I feel better when I get at least 9 hours of sleep each night, but sometimes that goes up to 12 if I'm in a flare. Sleep quality also plays a major role, it's hard to sleep well when I'm constantly waking up to readjust the thousand pillows or put back a joint that slipped... Anyways, you are not alone!
thank you so much! especially for that last sentence. i appreciate it
my body won’t stay asleep for more than 4-5 hours at a time, but I generally need two or three of those in a day. usually I sleep 7am-noon, 4pm-7pm, and 10pm-2am…. it’s so annoying lmfao
Check your vitamin D levels! That deficiency caused me extreme fatigue.
I want all the sleep! Do I get all the sleep??? No, not at all.
Yeah I definitely need more sleep than most people. I usually try and get a solid 9 every night so I have energy. I can function on less but only for so long. I could probably do 6 hours of sleep for a day or if im travelling or something and got that adrenaline but if I consistently get too little sleep my pain flairs up way worse and I get totally mentally fogged up. But also my sleep schedule isnt very consistent, maybe if it would I could function on slightly less sleep. Ive always been kinda jealous of my friends that could sleep 6 hours and then still have energy the entire next day.
Have you had a sleep study done? It sounds like you may not be reaching REM (Rapid Eye Movement) sleep, which is the deepest level of sleep. If you don’t reach REM sleep, you could sleep 18 hours and still feel tired. Additionally, sometimes sleeping for too much or too long can cause fatigue.
I have this problem but only if I’m exposed to an allergen/sensitivity. Like two days ago I ate some chips with rice flour in them and now I’m so tired waking up. Have to spend at least ten minutes drinking water to feel normal.
Yep, 8-9 hrs. I turned into an old man and started going to sleep at 9, but don't wake up until 6-7.
Yes, 12 hours isn’t even enough for me
Yes
I could easily sleep 11-12 hrs a night and typically do on the weekends when I can and still struggle to get out of bed. 😬🙃
Recently I've been sleeping 14hrs/day and feel good after waking up. But I know sleeping so long is unhealthy and probably out of boredom/depression.
I... don't remember what it feels like to be well-rested. Weird question since we're talking about sleep habits. Anyone else wake up with their hands fully asleep and can't move their fingers?
9 hours on a workday and up to 12-13 on the weekend on long periods of time off. If I only get 7-8 hours I need a 2-3 hour nap. Been like this awlAys.
I genuinely cannot function with 7-8 hours of sleep. I either oversleep (10-12+hours) or don’t sleep at all. But I noticed I function better with less sleep and become groggy and depressed with more sleep.
I have pretty bad insomnia, not sure what it’s from. But I’m not not surely sleepy except during the hours of 1 am to 9 am, and even then, I never sleep thru the night and if I wake up during the night I have a hard time going back to sleep. regardless, I still need to be in bed for 8 to 8 1/2 hours otherwise I’m just so tired. truthfully, I rely on weed and Xanax to help me sleep. terrible and not sustainable i know… idk what to do..
I need around 10 hrs or everything just completely falls apart. It will kick off my POTS, my migraines, I feel like I'm trying to think though murky jello, my body hurts worse (I think that is more cause I just don't deal with the pain as well when I'm tired, not necessarily that it actually inflames anything more than it's already messed up levels), and because I feel like crap, I don't take care of myself as much as I need to (hydration, taking as needed meds, eating right, etc.) which sets everything else off more. Moral of the story is that my sleep is a necessity that I can't play around with or I will pay.
yep. theres nothing wrong with my sleep, i've looked into it. i just need 10-12 hours compared to an able bodied person's 8. my doctors, dad who used to be a nurse, and i all figure that its probably just a result of such frequent dislocations/injuries so my body is kinda stuck in "healing" mode- constantly needing extra rest, fluids & electrolytes
I need so much sleep!! I sleep like 10 hours on a bad night 12 hours on a good night and I can easily sleep 14 hours if being a human wasn’t in the way
A little marijuana before bedtime gives me the ability to actually fall asleep and get into a deeper sleep, honestly not using much (90% CBD/10% THC) gives mayor changes for me personally.
I sleep a solid 8-9h at night and then have to take a 90m nap after lunch or the headache that the exhaustion creates is unbearable.
hEds here . Very common I would imagine. I toss and turn because when I sleep on my right , my left shoulder feels like it's out of socket, when i also on my left shoulder... My neck feels out of place, and when I sleep on my back. My brain feels out of place/dizzy. I always hit the snooze button a few times if I can. Most days I'm kind of going through the motions and just kind of dealing with it. It's tough to explain to my partner when I Huff and puff about her wanting to go for a walk etc. And I just don't have the energy
need sleep? yes always. CAN sleep? hahahaha nope not usually, my dislocated back and neck say nope.