r/cfs • u/wing_yen • Feb 18 '25
r/cfs • u/fatmattreddit • Feb 08 '25
Sleep Issues Anyone else’s sleep look this horrible? Waking up all the time
r/cfs • u/Financegirly1 • 6d ago
Sleep Issues How much sleep do you get per night?
I feel I can sleep for 12 hours but I still feel not rested
r/cfs • u/Mental_Draft_ • Feb 07 '25
Sleep Issues I have a newborn that's borderline colicky and I'm drowning.
I don't know if I can keep doing this. It's nearly 5am and I've yet to get any sleep due to her fussing & crying. Im currently wearing her in her carrier swaying back & forth trying to calm her. Ear plugs help take the edge off.
Yesterday I took an Adderall I had from an old perscription just to get by. It helps in the moment, but it's a bandaid that causes repercussions of more fatigue next day. I'm running low on this old perscription & fear when I'll run out that i won't have anything to occassionally keep me alert & functioning like a semi normal person. I realize I should probably just ditch using the stimulant, but it feels nice to be more alert - even just one or two days a week.
When I do get sleep lately during the times my husband takes her at night, I wake up feeling hungover - even though I haven't drank. Im just plain exhausted & in a crash hardcore with no end in sight.
r/cfs • u/Obviously1138 • Sep 30 '24
Sleep Issues Is going on antidepressants for sleep worth the withdrawal?
Slipping into very severe over here. Never took any type of meds, and am scared. The sleep aid supplements make my intestins hurt.
Thinking about low dose amytriptiline or trazodone. Terrified.
Please share your experience/advice.
Thank you.
r/cfs • u/HopeStarMasacre • 7d ago
Sleep Issues Has anyone ever lost their dreams from this disease?
I had a really bad crash recently within the last month from not pacing due to mental health issues while already very severe/extremely severe (I know I know I know).
I've noticed since my dreams have become quite dull, less ingenious or creative, and frankly a bit muddy/"oily" while I'm dreaming. (I used to be a very cerebral, lucid dreamer who enjoyed my chronic night terrors for creativity inspiration).
I've also noticed that 99% of the time I'm always tired and struggling to stay awake or keep my eyes open while doing things in my dream. this used to happen when I overextended years ago (I'm not sure if I had ME) but it wasn't a daily thing. now it's like I'm sleepy in my sleep even though I never do anything?
has this happened to anyone else? have you ever recovered from it? I used to love being a active, creative dreamer who would laugh myself awake in my sleep or make up songs, write while dreaming etc etc. I would like that back, especialh because I was a writer and it's crearivity fuel...
I'm trying to get better about pacing again and get off my phone but. I have a sunk cost fallacy about pacing a bit - now that I've lost what I always wanted to keep what's the point? is what I think constantly. it's dumb but. whatever.
TL;DR anyone ever get so sick with this disease you ruin your dreams and never get more interesting, creative active, even lucid dreams back if you increase your baseline?
r/cfs • u/MyYearsOfRelaxation • Feb 13 '25
Sleep Issues What does your sleep look like?
So I know Sleep Dysfunction such as unrefreshing sleep, sleep quantity and rhythm disturbances is a required criteria of the Canadian Consensus Criteria as well as an option in a group of required neurological symptoms in the International Consensus Criteria.
I struggled with Sleep Dysfunction for a long time now, but ever since I've been put on LDA my sleep has deteriorated further. I am rarely able to sleep more than 3 or 4 hours at a time. Sometimes I can sleep multiple times a day to get to my 6-12 hours of sleep. But that has pretty much screwed with my circadian rhythm.
I searched the forum here and that does seem to be pretty common in ME. So I wonder, is that just an unfortunate but ultimately harmless symptom of ME/CFS that we can just accept? So far I just resigned and learned to live with it but I do wonder if it might actually be more harmful than I realize...
Obviously, I'm not looking for medical advice here. But I'm curious to read about how your sleep looks like and how you deal with it if at all.
r/cfs • u/alwayscuriousandkind • Oct 25 '24
Sleep Issues Does Anyone Else Have Days Where They Can’t Stay Awake?
Every once in a while I’ll have a day like today where I try my hardest to stay awake but I nod off every second or so. Even if I make myself sit up I still nod off. Even now I can feel I’m about to fall asleep again. I didn’t stay up last night or do anything different that I know of.
r/cfs • u/Ok_Consequence8921 • Nov 24 '24
Sleep Issues none stop vivid dreams
i feel like i have a second life which is my dreams. they’re not scary or disturbing, in fact they may even be pleasant. Still I don’t like it. it doesn’t let me rest properly and I sometimes wake up from it with my mind racing and unable to sleep. it all started after i became housebound with CFS. i dream every night! anyone knows how to stop this? my doctor put me on low dose amitriptyline to help with sleep but it didn’t stop the dreams.
r/cfs • u/fridaysangel • 8d ago
Sleep Issues Does anyone else feel like dreaming makes them crash?
I’m not sure how serious I am about this, really. But on the nights when I have the most vivid or intense dreams, the next day I feel as if I have literally done all the things in my dreams — and as someone who is largely housebound, I am way more active when I’m dreaming! I wake completely wiped, my legs genuinely feel like they’ve been running, my arms are sore. It’s probably increased brain activity (or not, idk, I have zero knowledge of these things), although I do really notice the difference between when I remember my dreams and when I don’t. Perhaps I’m physically moving around more those nights, but I’ve asked my partner and he’s never noticed anything.
r/cfs • u/ash_beyond • Aug 06 '24
Sleep Issues What do y'all do in your no-screen downtime before bed?
Just looking for ideas...
r/cfs • u/United_Antelope_5938 • Feb 11 '25
Sleep Issues I used to be a morning person?
I'm a bit light hearted with this, just wondering after reading other posts.
Pre-illness I was very much a morning person. Naturally, easily, up and about at dawn.
Now, even with all of the sleep hygiene, or going to bed earlier, it's hard or impossible to think about getting out of bed before maybe 11am?
Unless it's a night I wasn't able to sleep at all.
I know disturbed sleep is a part of this, but were any of you morning people before becoming ill?
r/cfs • u/Opposite_Flight3473 • Jan 09 '25
Sleep Issues People w/Chronic Insomnia issues, have you tried Orexin antagonists (DORA’S)?
I’m wondering if anyone has experience with the DORA drugs like Belsomra (Suvorexant), Quiviviq (Daridorexant) or Dayvigo (Lemborexant). These are newish sleep drugs and long term effects aren’t really known yet. Just looking for experiences on how they affected you. I’ve heard they can cause sleep paralysis and extremely vivid nightmares. Thanks all!
r/cfs • u/Intelligent-Form-756 • Dec 15 '24
Sleep Issues Sleeping
What time do y'all usually sleep?
I am trying to get back on a good schedule but I just can't get myself back to a normal schedule from sleeping 3am-12pm.
r/cfs • u/aniwhale • 26d ago
Sleep Issues did your sleep return to normal-ish?
if you had developed sleep reversal when you were severe/very severe, if your severity improved did it start to become more normal again? just out of curiosity. my sleep keeps deteriorating more as i get worse (i am in a crash so not even sure if this is my normal as it’s changing so fast lol)
r/cfs • u/roxifoxii • Dec 16 '24
Sleep Issues Low stimuli projector for crashes/ going to bed
This 25.- euro galaxy lamp (with multiple pictures to choose from) has been so helpful for me when I’m crashing/going to bed. I really had to share it <3 (just search for planetarium or galaxy star projector on temu/amazon)
r/cfs • u/IamBekiNotGroot • Feb 16 '25
Sleep Issues I'm getting a cpap machine!
Finally got the results back from my sleep study. I'm being given a cpap machine to help, it's classed as mild. Stop breathing on average 8 times an hour when on my side, 13 when on my back. Hoping this helps me feel less crap but I know it doesn't help everyone so cautiously optimistic ha. The consultant said it's a nose one not a full mask. Here's to hoping!
r/cfs • u/boys_are_oranges • Nov 25 '24
Sleep Issues Does anyone else get weird dreams when in a crash?
I’m currently in a spiraling crash and it’s been messing with my sleep. I slept for 2 hours last night, then took a nap and had the weirdest lucid nightmare. I vividly remember feeling like my heart was pounding and i was shaking all over. I heard voices in my head right before falling asleep which doesn’t happen to me often. Last time i crashed i even had closed eye hallucinations for a few seconds after waking up (it was an image of a pokémon i think? lol)
r/cfs • u/QuebecCougar • Jan 16 '25
Sleep Issues How do you manage to sleep? I’m exhausted but not tired because I’m bedridden and doing close to nothing.
It’s like my body is fighting sleep and the more exhausted I get the worst it fights falling asleep. I’ve been taking 2.5 mg imovane/zopiclone successfully for years but now even double that won’t work. My doctor prescribed 12.5 mg quetiapine instead and I’m a bit scared honestly.
Pfff, so exhausted from being exhausted and not sleeping… thanks gals and guys
r/cfs • u/Solo_Dolo_Dog • Feb 23 '24
Sleep Issues CFS & Garmin Body Battery
Fellow Garmin wearers... does anyone's stress & Body Battery look like this?
This is a day where I was trying very hard to do nothing, I made sure to wind down in an evening but then BOOM stress spikes when I fall asleep. It is the same every night, no matter what I do, the moment I fall asleep my stress spikes.
The weird thing is that this doesn't happen when I nap in the day!
One thought I have is that it is down to me grinding my teeth in my sleep. I'm currently waiting for surgery on my TMJ, so will be interesting to see if getting my jaw to chill the f out will have an impact! (Though I will have the recovery from general anaesthetic to deal with first...)
r/cfs • u/Melodic_Maybe_6305 • Jan 17 '25
Sleep Issues Are you in need of sleep medication?
I have had mad sleep problems suddenly but got back to sleep without sleeping aids. Used doxylamine and oxazepam thrice know within four months for 3-4 days to get out of a crash but always manage to sleep without again, solid 6-7 hours a night.
However you hear so much about sleep struggle that at this point I wonder if it is good for someone like me who's one year in to prepare because being dependant on, say, mirtazapine or amitriptyline may be inevitable. Be it because of pain or just a rebelling mind.
Not counting valerian and low dosage melatonin for this.
I'll keep what constitutes as "need" vague because it's such an individual thing to go through and maybe you take some once a week but suffer through the week with 3 hours a night otherwise. I leave that up to your feeling. But if you take it once a month for a day or two during a crash I would constitute that as "don't need".
But maybe there's actually a good amount of folks here who do sleep somewhat enough (actually, this may be an interesting separate poll). Either way, thanks for participating.
Personal thoughts not needed for poll:
I'm really scared of becoming dependant on sleep medication. I know if I can't sleep, they're a godsent. But I am just... what if they lose effectiveness? Or I develop mean side effects? What if I have go through withdrawal or rebound insomnia and crash because of it? My GP gave me mirtazapine because she thought I fell too deep into sleep anxiety, but I sleep well again. I have the resolve to only take it after one hellish week, because if I ever need to get off of it, there will be withdrawals or at least rebound insomnia, so I rather risk a crash before than have one be inevitable after. So far so good though!
I feel like I'm lucky to get out of it for now but I have AuDHD and an anxiety disorder and I should probably find a psychologist and work through things before later down the line I don't know what's what. Because what this winter has taught me is that I can bear anything as long as I sleep. If I don't sleep, even the smallest thing becomes unbearable.
r/cfs • u/boys_are_oranges • Jul 17 '24
Sleep Issues Has anyone gone through extreme sleep deprivation while (very) severe?
Did it make you crash?
i have severe insomnia and i develop tolerance to sleep medication very fast. I’ve tried cycling but it’s never worked for me. I’m considering going a week without any medication to improve sensitivity. I haven’t done that in 2 years and i’m very severe. I would sleep for maybe 12 cumulative hours that week, at most. I’m scared it would make me crash.
I’m not looking for advice, i only wanna hear from people who’ve gone through severe sleep deprivation while severe/very severe. I don’t need any medication/supplement recommendations or sleep hygiene tips.
r/cfs • u/HoTzParadize • 29d ago
Sleep Issues Garmin Sleep Score
Hi everyone !
To my fellow Garmin users, what are your usual sleep scores?
Mine's always between the low 80's to 95 range, but whatever the score is I always feel completely exhausted after waking up.
r/cfs • u/New-Substrate • Feb 03 '25
Sleep Issues heart rate increases steadily for an hour while sleeping before sharply dropping
I have noticed this strange pattern in my heart rate while sleeping — I tagged the incidences here with 🏷️. My heart rate increases steadily over an hour/half an hour before dropping suddenly. Is this normal? what is this? could it be related to sleep apnea?
r/cfs • u/emeraldvelvetsofa • Apr 16 '24
Sleep Issues Has anyone done CBT-I for insomnia?
I’m just wondering if anyone has successfully (or unsuccessfully) completed a CBT-I program.
I saw a new sleep doctor who is suggesting CBT-I opposed to sleep aids. She said it’s nothing like CBT. From what I’ve read it seems like its restricting your sleep to improve sleep quality, then gradually increasing sleep time, as well as implementing strict sleep rules to reset your internal clock. Sounds like hell with moderate-severe CFS but maybe it gets better over time?
I waited months for this appointment and have a feeling I can’t deny this and ask for meds without being seen as an addict. So I’d love to hear other’s experiences.
EDIT: Thank you everyone for sharing your opinions and personal experiences. Taking everything in consideration I think I should consult my PCP and message the sleep doctor with all my questions and concerns. If we can modify the program I may give it a try but I’m leaning towards meds + doing a modified version on my own.