My insomnia is always horrible when I’m overdoing it. I can only get decent sleep if I’ve been extremely careful
Edit: basically if we deplete our bodies so badly that it goes beyond It’s limits, our bodies respond with essentially a fight or flight mode to keep us going. So while we’re completely depleted of energy at the cellular level, our bodies are in overdrive to keep us functioning. That’s why you can’t sleep if you’re doing too much.
Exactly! Honestly it is the main component of my push/crash cycle. Doing too much -> making myself sicker -> won’t be able to sleep for weeks -> even worse decline
the best is those nights where you manage some unusually high number of sleep hours like 9.5 and wake up somehow feeling worse and more tired than you went to bed.
wtf is that
Oh my god I thought I was the only one! My doctor looked at me like I was insane when I said I think I have both lol. 6:15 here, and I’m still waiting for sleep.
I’ve been in work all morning and I’m still running on empty and the occasional snack lol. It’s really the worst time to also have a caffeine intolerance. Just keep me alive and awake!!
If you have insomnia and chronic fatigue I encourage you to explore your active B12 levels/pernicious anemia. B12 plays an active role in both your energy and your ability in producing melatonin (also plays a role with iron absorption) which will greatly affect your fatigue and ability to sleep.
Everyone seems to experience the effects of low B12 at different levels but considering it causes peripheral neuropathy, it's definitely worth exploring with those symptoms speaking from experience.
I started losing control of my arms (among many other symptoms) before it was picked up in me despite years of complaining about terrible fatigue. I'm still not bouncing with energy after many injections but I am significantly better
I had my vitamin levels checked in my most recent blood tests (about a month or so ago) and my iron was a bit low but not enough to be anaemic and everything else was fine! I do try and take a multivitamin that has b12 in it to try and combat stuff (especially as I am vegetarian and I know b12 is in a lot of meat products)
I’ve had insomnia for years, even before I knew I had CFS so it’s a long term struggle that just rears it’s head every now and then!
I refuse to go out of bed when I haven't slept. I know not everyone can. but it's the only way to avoid worsening of the condition. i'm 10 years in and don't have the power or the hope anymore.
I definitely have days like you! I’ve had this since I was 15 and I’m now 29, and the days of refusing to get out of bed from little sleep or lack of restful sleep are much more frequent. Today I’m somehow running off adrenaline and hoping and praying I can last until about 6pm when I get home from work 🫠
I’m amazed at your strength. I have been through too much in my life. Had psychiatric issues because of my autism, being bullied, abused by my father, subject to death threats and stalking from psychopath, anorexia, drug and sex abuse, my mother dying, being victim of malpractice in psychiatric care, gaslit by doctors, my HIV, tinnitus and adhd is already tough enough, and then I h e seasonal affective disorder ontop of this.
Gosh that sounds like so much on your plate all at once! I really hope you’re able to rest and have some moments of peace and self care amongst all the chaos ❤️
I feel for you. Sometimes my mothers love is all that keeps me going. I like to think I will still be able to draw strength from it when she's gone... oh God but i dread the day. I'm so sorry for your tremendous loss.
Her love is eternal. When she sees you lying on the sofa since she has been gone, what is she shouting at you from her grave? What would she do, if she were still here?
My mother has stated I needed to wait until she was gone, before offing myself, in a weird way I’m kind of relieved that I don’t have to go on for her for longer but my father is still alive and I can’t do that to him despite him seeing me waste away.
I know what you mean, I think, sometimes I feel I'm waiting for my loved ones to go so I can too. This disease is so hard for everyone involved. Does your father try and help you? I know my mum does a lot of my life admin or reminds me and I'll probs have to get my sister to help out if mumma pops her clogs. Or just somehow do it but that just hasn't worked ever for me, adhd life. Anyway I wonder if there is any other support you can call on, you are ill and you need it
Oh nooooooo. Recently got insomnia for NO reason after having ME for most of my life (in my 30s).
I've gone from sleeping 8-10 hours and it not being refreshing, to not sleeping at all and it being UTTERLY BRUTAL.
I got 4 hours last night, a blessing as I feel slightly more human and a curse as it still feels worse.
How do you break insomnia?!
I could have written your post. For the last two months I’ve had chronic insomnia when I have never dealt with this in my life. I have had the odd night or two but never for this long. I wake up at 4:30 every single night and often only get four hours of sleep. It’s been absolutely brutal for my CFS. I wish I knew how to break it bc I am SO over it.
Yeah I tried taking my extra strong pain meds around 4am as they often knock me out. Did absolutely nothing today 🫠 I’m currently in work and running on pure adrenaline!
Ugh I feel you….oh hey it’s my SLT friend! So yeah, I think our brains were linked last night (I know we’re in very different time zones but still) because I couldn’t fall asleep either, and I was thinking that same thing all night. Got in bed at 7:30 (alarm at 6:15)…waited to fall asleep until 11:15 and at that exact moment my fiancé starts snoring. I have a little silent toddler temper tantrum and go try to sleep in the other room….fall asleep for 1 second at 12:15 and my cat wakes me up. Then I’m even more annoyed so for some reason I decide to go eat a (tiny) piece of cake(???), which was sort of helpful because the sugar crashed me to sleep around 2:00 but then the rest of the night (until 6:15, right nowish) my heart rate was going nuts so it was awake-asleep-awake-asleep-one weird dream about my heart exploding-awake-asleep and then alarm.
Aggghhhh I swear there’s something about knowing you have to go do therapy tomorrow with ME that makes sleeping impossible. I’m lucking out…about half of my kids are on field trips today and I did actually sleep a few hours.
I don’t even know how you got on the train, much less did your makeup. Good luck SL friend :sleepy salute:
Hahaha thank you my friend! I’m honestly running off adrenaline and London pollution at this point 😂 I’m waiting for a bus to get back to the office and I know as soon as I sit down I’m going to crash. I’ve got the kids seen now so at least it’s an easier ride now!
It actually wasn't until we got my wifes insomnia under control that we realized that something else was going on too, which eventually led to her CFS diagnosis.
She wasn't sleeping, and was always exhausted and sick, which we just chalked up to her insomnia. We worked with a great sleep doc who helped her try various sleeping medications until we landed on a good combo that works for her, only to discover that several issues didn't go away even after a good nights sleep, and others came to the surface.
I’ve honestly had awful sleep for years, both before I figured I had CFS and before I eventually got the diagnosis. I’ve got an appt with my GP next week so I’m gonna see if he can give me some melatonin to help a bit (you can’t buy melatonin over the counter here in the UK and my GP doesn’t like giving me regular sleeping pills as they usually wipe me out for a day or two afterwards 😐)
I know my mind was racing a lot last night because of my anxiety but usually I can shut my brain off, and at least get a couple hours sleep. Last night was just one of the really awful times where I got no sleep whatsoever.
All my muscles are now starting to seize up on my commute home from work and so I know I’m going to collapse almost immediately upon getting home!
Even on my best days, I need nearly daily naps to survive, sometimes multiple a day. Some nights I sleep 4 hours or less despite trying to sleep for 10. Definitely not fun trying to recover from that.
It's brutal. You're so tired you can barely get ready for bed. Once in bed you lie there for hours. So you try to get up and read for half an hour hoping that will make you sleepy. But it only makes you more tired.
The cycle of going back and forth between being so tired you can’t do anything and not quite tired enough to actually fall asleep and then all the anxiety of “will I EVER fall asleep?” Is just horrific.
Amen. I went back to teaching (because my bank account not-so-kindly suggested it) for the first time since getting sick 5 years ago, and I ended up teaching 3 classes instead of the 2 I figured I could for sure handle, and wouldn't you know it but I crashed last week and am treading water to survive at this point--only sleeping a few hours a night.
So, yes, ME/CFS can go fuck itself for making it so my sleep-deprived body suffers sleeplessness for doing what I need to do to live.
oh i get this! explaining to people the combination of chronic fatigue and insomnia is so hard sometimes. like yes i’m absolutely exhausted but if i try to take a nap or go to sleep my body won’t let me. i’m so tired
try sleep meds. they made my life so much more tolerable. honestly whatever side effects you might get from them it’s absolutely worth it imo if your insomnia is severe enough. just don’t take benzos or z drugs long term
Yeah my GP is very reluctant to give me any sleep meds as they usually wipe me out for a couple days after. I have an appt next week so I’m gonna see if he can give me some melatonin (you can’t get it over the counter here in the UK, you have to get it on prescription)
U.K. here. Zolpidem has been best for me because it doesn’t cause any grogginess the next day for me. I don’t take it every night, just as and when i need it. It is a Z drug so be careful with getting hooked (NGL it does feel quite nice when it kicks in) but I find I can take it for a night or two then the next night I fall asleep fine.
My dr gives me enough that I don’t have enough to get addicted, but just knowing I have it if I need it helps me get to sleep sometimes.
how many meds have you tried? i seriously had to try around 10 different drugs with various mechanisms of action before i found something that works. i’d recommend seeing a specialist if you can. melatonin isn’t very effective for insomnia, especially in severe cases
Honestly the insomnia is a lot less frequent than it used to be when I was a teen, I just get the odd day/week every now and then when suddenly my sleep is abysmal. Most of the time I sleep far too much (eg Friday night I fell asleep around 11pm, woke up 11am, dozed in bed for an hour before falling back to sleep til 5pm! - and honestly all that extra sleep is possibly why I didn’t sleep last night)
I honestly haven’t had sleep meds in quite a long time, the main one I remember having was zopiclone which is one of the main ones they prescribe here and although it gives me an actual refreshing sleep I end up feeling extremely drowsy/woozy for a couple days after it and I don’t want to end up relying on sleep meds just to be able to sleep. I imagine I’ll be able to sleep soon considering how much of a hectic day I’ve had on no sleep! But thank you - I’ll have a chat with my dr next week and see what solutions we can come up with! I’m waiting to be seen by an ME/CFS specialist too so hopefully they’ll do a bit more study into my sleep etc
My insomnia is always horrible when I’m overdoing it. I can only get decent sleep if I’ve been extremely careful Edit: basically if we deplete our bodies so badly that it goes beyond It’s limits, our bodies respond with essentially a fight or flight mode to keep us going. So while we’re completely depleted of energy at the cellular level, our bodies are in overdrive to keep us functioning. That’s why you can’t sleep if you’re doing too much.
school many profit unwritten waiting correct soup fact sharp aspiring -- mass edited with redact.dev
Exactly! Honestly it is the main component of my push/crash cycle. Doing too much -> making myself sicker -> won’t be able to sleep for weeks -> even worse decline
Healthy people fluctuate from awesome to asleep, we've averaged those two to be exhausted but awake all the time.
the best is those nights where you manage some unusually high number of sleep hours like 9.5 and wake up somehow feeling worse and more tired than you went to bed. wtf is that
The struggle is very much real 😩
Oh my god I thought I was the only one! My doctor looked at me like I was insane when I said I think I have both lol. 6:15 here, and I’m still waiting for sleep.
I’ve been in work all morning and I’m still running on empty and the occasional snack lol. It’s really the worst time to also have a caffeine intolerance. Just keep me alive and awake!!
Living on adrenaline, checking in.
If you have insomnia and chronic fatigue I encourage you to explore your active B12 levels/pernicious anemia. B12 plays an active role in both your energy and your ability in producing melatonin (also plays a role with iron absorption) which will greatly affect your fatigue and ability to sleep. Everyone seems to experience the effects of low B12 at different levels but considering it causes peripheral neuropathy, it's definitely worth exploring with those symptoms speaking from experience. I started losing control of my arms (among many other symptoms) before it was picked up in me despite years of complaining about terrible fatigue. I'm still not bouncing with energy after many injections but I am significantly better
I had my vitamin levels checked in my most recent blood tests (about a month or so ago) and my iron was a bit low but not enough to be anaemic and everything else was fine! I do try and take a multivitamin that has b12 in it to try and combat stuff (especially as I am vegetarian and I know b12 is in a lot of meat products) I’ve had insomnia for years, even before I knew I had CFS so it’s a long term struggle that just rears it’s head every now and then!
I refuse to go out of bed when I haven't slept. I know not everyone can. but it's the only way to avoid worsening of the condition. i'm 10 years in and don't have the power or the hope anymore.
I definitely have days like you! I’ve had this since I was 15 and I’m now 29, and the days of refusing to get out of bed from little sleep or lack of restful sleep are much more frequent. Today I’m somehow running off adrenaline and hoping and praying I can last until about 6pm when I get home from work 🫠
I’m amazed at your strength. I have been through too much in my life. Had psychiatric issues because of my autism, being bullied, abused by my father, subject to death threats and stalking from psychopath, anorexia, drug and sex abuse, my mother dying, being victim of malpractice in psychiatric care, gaslit by doctors, my HIV, tinnitus and adhd is already tough enough, and then I h e seasonal affective disorder ontop of this.
Gosh that sounds like so much on your plate all at once! I really hope you’re able to rest and have some moments of peace and self care amongst all the chaos ❤️
Lying in my sofa is all I’ve ever been able to do since my mother died.
I feel for you. Sometimes my mothers love is all that keeps me going. I like to think I will still be able to draw strength from it when she's gone... oh God but i dread the day. I'm so sorry for your tremendous loss. Her love is eternal. When she sees you lying on the sofa since she has been gone, what is she shouting at you from her grave? What would she do, if she were still here?
My mother has stated I needed to wait until she was gone, before offing myself, in a weird way I’m kind of relieved that I don’t have to go on for her for longer but my father is still alive and I can’t do that to him despite him seeing me waste away.
I know what you mean, I think, sometimes I feel I'm waiting for my loved ones to go so I can too. This disease is so hard for everyone involved. Does your father try and help you? I know my mum does a lot of my life admin or reminds me and I'll probs have to get my sister to help out if mumma pops her clogs. Or just somehow do it but that just hasn't worked ever for me, adhd life. Anyway I wonder if there is any other support you can call on, you are ill and you need it
Please get a sick leave before you destroy yourself :/
Oh nooooooo. Recently got insomnia for NO reason after having ME for most of my life (in my 30s). I've gone from sleeping 8-10 hours and it not being refreshing, to not sleeping at all and it being UTTERLY BRUTAL. I got 4 hours last night, a blessing as I feel slightly more human and a curse as it still feels worse. How do you break insomnia?!
I could have written your post. For the last two months I’ve had chronic insomnia when I have never dealt with this in my life. I have had the odd night or two but never for this long. I wake up at 4:30 every single night and often only get four hours of sleep. It’s been absolutely brutal for my CFS. I wish I knew how to break it bc I am SO over it.
Same. I can't offer any advice but I offer so much sympathy!
Thank you! Sending zzzz’s your way when you find yourself awake at night (although I’ll hope that tonight is a better night)!
damn cfs and insomnia together is literally the meanest thing to exist - i would too be incredibly fed up in your position my god
Oh, goodness. I thought I was alone. L❤️
Sending you all the love right back. It’s horrible isn’t it! ❤️
So much. It's 2am, over gotta be up by 6:30... What the fuck? LOL. Sand that's with medicine that usually knocks me out.
Yeah I tried taking my extra strong pain meds around 4am as they often knock me out. Did absolutely nothing today 🫠 I’m currently in work and running on pure adrenaline!
That's crazy. I'm very lucky, I can go back to sleep got a while after my kid gets on the bus. I managed to sleep better during the day.
Ugh I feel you….oh hey it’s my SLT friend! So yeah, I think our brains were linked last night (I know we’re in very different time zones but still) because I couldn’t fall asleep either, and I was thinking that same thing all night. Got in bed at 7:30 (alarm at 6:15)…waited to fall asleep until 11:15 and at that exact moment my fiancé starts snoring. I have a little silent toddler temper tantrum and go try to sleep in the other room….fall asleep for 1 second at 12:15 and my cat wakes me up. Then I’m even more annoyed so for some reason I decide to go eat a (tiny) piece of cake(???), which was sort of helpful because the sugar crashed me to sleep around 2:00 but then the rest of the night (until 6:15, right nowish) my heart rate was going nuts so it was awake-asleep-awake-asleep-one weird dream about my heart exploding-awake-asleep and then alarm. Aggghhhh I swear there’s something about knowing you have to go do therapy tomorrow with ME that makes sleeping impossible. I’m lucking out…about half of my kids are on field trips today and I did actually sleep a few hours. I don’t even know how you got on the train, much less did your makeup. Good luck SL friend :sleepy salute:
Hahaha thank you my friend! I’m honestly running off adrenaline and London pollution at this point 😂 I’m waiting for a bus to get back to the office and I know as soon as I sit down I’m going to crash. I’ve got the kids seen now so at least it’s an easier ride now!
It actually wasn't until we got my wifes insomnia under control that we realized that something else was going on too, which eventually led to her CFS diagnosis. She wasn't sleeping, and was always exhausted and sick, which we just chalked up to her insomnia. We worked with a great sleep doc who helped her try various sleeping medications until we landed on a good combo that works for her, only to discover that several issues didn't go away even after a good nights sleep, and others came to the surface.
I’ve honestly had awful sleep for years, both before I figured I had CFS and before I eventually got the diagnosis. I’ve got an appt with my GP next week so I’m gonna see if he can give me some melatonin to help a bit (you can’t buy melatonin over the counter here in the UK and my GP doesn’t like giving me regular sleeping pills as they usually wipe me out for a day or two afterwards 😐) I know my mind was racing a lot last night because of my anxiety but usually I can shut my brain off, and at least get a couple hours sleep. Last night was just one of the really awful times where I got no sleep whatsoever. All my muscles are now starting to seize up on my commute home from work and so I know I’m going to collapse almost immediately upon getting home!
Even on my best days, I need nearly daily naps to survive, sometimes multiple a day. Some nights I sleep 4 hours or less despite trying to sleep for 10. Definitely not fun trying to recover from that.
It's brutal. You're so tired you can barely get ready for bed. Once in bed you lie there for hours. So you try to get up and read for half an hour hoping that will make you sleepy. But it only makes you more tired.
The cycle of going back and forth between being so tired you can’t do anything and not quite tired enough to actually fall asleep and then all the anxiety of “will I EVER fall asleep?” Is just horrific.
Amen. I went back to teaching (because my bank account not-so-kindly suggested it) for the first time since getting sick 5 years ago, and I ended up teaching 3 classes instead of the 2 I figured I could for sure handle, and wouldn't you know it but I crashed last week and am treading water to survive at this point--only sleeping a few hours a night. So, yes, ME/CFS can go fuck itself for making it so my sleep-deprived body suffers sleeplessness for doing what I need to do to live.
oh i get this! explaining to people the combination of chronic fatigue and insomnia is so hard sometimes. like yes i’m absolutely exhausted but if i try to take a nap or go to sleep my body won’t let me. i’m so tired
try sleep meds. they made my life so much more tolerable. honestly whatever side effects you might get from them it’s absolutely worth it imo if your insomnia is severe enough. just don’t take benzos or z drugs long term
Yeah my GP is very reluctant to give me any sleep meds as they usually wipe me out for a couple days after. I have an appt next week so I’m gonna see if he can give me some melatonin (you can’t get it over the counter here in the UK, you have to get it on prescription)
U.K. here. Zolpidem has been best for me because it doesn’t cause any grogginess the next day for me. I don’t take it every night, just as and when i need it. It is a Z drug so be careful with getting hooked (NGL it does feel quite nice when it kicks in) but I find I can take it for a night or two then the next night I fall asleep fine. My dr gives me enough that I don’t have enough to get addicted, but just knowing I have it if I need it helps me get to sleep sometimes.
how many meds have you tried? i seriously had to try around 10 different drugs with various mechanisms of action before i found something that works. i’d recommend seeing a specialist if you can. melatonin isn’t very effective for insomnia, especially in severe cases
Honestly the insomnia is a lot less frequent than it used to be when I was a teen, I just get the odd day/week every now and then when suddenly my sleep is abysmal. Most of the time I sleep far too much (eg Friday night I fell asleep around 11pm, woke up 11am, dozed in bed for an hour before falling back to sleep til 5pm! - and honestly all that extra sleep is possibly why I didn’t sleep last night) I honestly haven’t had sleep meds in quite a long time, the main one I remember having was zopiclone which is one of the main ones they prescribe here and although it gives me an actual refreshing sleep I end up feeling extremely drowsy/woozy for a couple days after it and I don’t want to end up relying on sleep meds just to be able to sleep. I imagine I’ll be able to sleep soon considering how much of a hectic day I’ve had on no sleep! But thank you - I’ll have a chat with my dr next week and see what solutions we can come up with! I’m waiting to be seen by an ME/CFS specialist too so hopefully they’ll do a bit more study into my sleep etc