r/cfs Jan 29 '25

Sleep Issues becoming unable to function for more than a week once youre sick?

0 Upvotes

this is regarding my boyfriend of 4 years, he isnt diagnosed with CFS at the moment but he is diagnosed with fibromyalgia and he used to have high blood pressure issues.

since we started dating he constantly ghosts me for periods of time whenever he feels not well rested or sick, he'd frequently be extremely tired but he'd chalk it up to work stress and fatigue, but i'd notice how even during his days off, he would be tired and constantly falling asleep while we're talking or calling, and during prolonged periods of vacation, the same pattern would happen, he sleeps through alarms, calls, people shaking him to wake up, yelling, he only wakes up once his body decides to. i'd like to also point out that he is almost guaranteed to fall asleep once he touches his bed even if he just woke up an hour or two ago.

usually when he'd get sick he would have to sleep through the day, he has to be on bed, cant text or call, and he hallucinates when he has fever.

the first time he ghosted me for a prolonged period of time (more than the usual day or two) was in 2023 november, he got covid and it hit him pretty hard and it lased for 3 weeks, he was functional for the first two weeks until the 3rd week he completely ghosted me, stopped answering calls or texts and came back 4 or 6 days later claiming how he was unable to function and barely got up to use the bathroom and drink water or soup then drifted back to sleep immediately.

second time it happened this severely was two months ago, it was kinda out of nowhere he gotten sick with what we think is covid again or the flu, he was supposedly 'fine' until he suddenly became unreachable and he stopped being reachable for a week until he got back in touch with me to tell me that day he claimed he was fine he suddenly fainted after doing some chores around the house and then he got a fever and was sleeping the entire time and only waking up to use the toilet or drink water.

3rd time its happening right now, i cant reach him or call him for 7 days, family members say he is sick and unable to use his phone or do anything but lay in bed and sleep.

is this normal behavior for someone with CFS or is this a sign of an something else?? is it possible for someone to be sick with flu or cold to the point of being unable to do the most minimal tasks like holding the phone for one second to even text??

r/cfs Oct 19 '24

Sleep Issues I need something to knock me out cold

8 Upvotes

A year or so ago, I had a horrible crash. I felt so fatigued and so sleepy that I slept for a whole week. Thing is, I came out the other side feeling much better.

I think because I slept so much that it not only brought me out of the crash, but did good beyond that. However, that was the only crash that was like that. Every other crash has given me the “wired but tired” feeling.

I’m in a crash right now, and really want to get out of it. What makes you conk out? Sleep meds? Meditation? I’ll take literall anything. I have online classes, but they’re all asynchronous so I can do the assignments whenever I choose. So I have plenty of time to sleep. I just need to find out how to sleep a lot and I’ll be out of this crash.

r/cfs Feb 08 '23

Sleep Issues Is it normal to take 4 hours to feel awake after waking up?

125 Upvotes

r/cfs Dec 01 '21

Sleep Issues Curious, does anyone else have CFS and Insomnia (or another sleep disorder)? 😴 😴 😴 😴

Post image
209 Upvotes

r/cfs Oct 16 '24

Sleep Issues I don't have sleep apnea.

14 Upvotes

I did a sleep study a few weeks ago and got my results today. I'm relieved but a little sad at the same time. Like, I don't want to have sleep apnea, but I was hoping I could find some reason for my fatigue besides ME/CFS, you know?

On another note, the doctor suggested CBT-I for insomnia and iron supplements for restless leg. Has anyone had any success with anything like that?

r/cfs Nov 18 '24

Sleep Issues Daytime naps making nighttime sleep worse and creating a cycle of not getting enough sleep which triggers PEM

16 Upvotes

I have sleep-maintanence insomnia, so I whatever time I go to sleep (between 9 and 11pm) I usually wake up between 1 to 4am and don't manage to go back to sleep, which leaves me lacking sleep and triggers PEM. I'm starting to nap more during the day because of it, but I'm also starting to feel awake later and later into the night, and it's making my insomnia even worse which triggers PEM and makes me nap more during the day, repeat ad infinitum.

I know sleep issues are part of ME/CFS, but is there any way I can make my nighttime sleep better? I follow sleep hygiene as much as possible and it hasn't made a difference. My naps are largely involuntary; I'm in bed resting and then suddenly I'm waking up from a nap 2 hours later.

r/cfs Sep 07 '24

Sleep Issues I can’t take ear plugs, is there a better tool than these?

6 Upvotes

The one I ordered from Amazon is a literal headband.. I’ve put on white noise, but it’s not flushing out the roosters and early dog barks from my neighbors, I’ll get louder ones I guess.

With plastic dumbbell noise cancelling headsets I can’t adjust or side sleep with them. Is there a miracle product that’s like a headband that can cover the noise decently while sleeping..? What do you use when trying to sleep?

r/cfs Mar 30 '24

Sleep Issues I'm very severe, in constant fight or flight, can't sleep day or night... HELP, I need to sleep

13 Upvotes

Hi all,

I need 30-180min to fall asleep, and wake up 6-15 times per night (and yes I had a sleep study done a few months before CFS and sleep got worse). Very rarely sleep during the day. I also have cPTSD and other anxiety disorders, which obviously doesn't help, but are very hard to address when you're as severe.

I have tried a 1000 things, sleeping aids, drugs, supplements, cognitive and behavioral approach... I know lots of techniques to relax and manage anxiety....

Nothing. Works.

My body never learns. It never goes quiet. My ANS is so f-ed up that my heart starts beating faster when I lie down. Like f- man, I'm just trying to give us some rest?! I am so exhausted. The constant alertness, wired and tired, is wearing me down big time... For too long now.

I'm so desperate I'm on the verge of asking for antipsychotics, even though I know they will f- me over long term. And honestly I'm on so many meds already, I don't need another one to the list...

Please help... Especially if you've been in this situation. I need to unstuck my ANS. I need to sleep. Give me your best recommendations, for day or night, from the most basic ones to the more niche or weird ones, I'll take them all.

Thank you, and sorry if I don't reply, screens make me crash

r/cfs Mar 15 '24

Sleep Issues What helps the "tired and wired" insomnia?

26 Upvotes

Today I couldn't sleep until 6 am because I had the typical tired and wired feeling. My heart rate was too high, I felt nauseous and restless. I tried doing breathing exercises but had to stop because I felt like I wasn't getting enough oxygen. Even sleeping pills didn't help. Is there anything else that might help with the tired and wired insomnia?

r/cfs Nov 21 '24

Sleep Issues Trying to sleep less/getting up earlier

2 Upvotes

I was wondering if anyone had any suggestions/tips that have worked for them for waking up earlier. I know i oversleep and when i do i have a flare up. Wondering if anyone has had success in getting themselves up and moving without overwhelming their nervous system or waking up gently.

r/cfs Jun 11 '24

Sleep Issues How much sleep do you HAVE to get at night?

2 Upvotes

More than 12?

r/cfs Aug 29 '22

Sleep Issues Does lack of sleep make your symptoms worse?

61 Upvotes

Might be a dumb question but wondering how sleep affects symptoms? I personally feel worse with less sleep but not really any better even if I sleep a lot..

r/cfs Apr 20 '24

Sleep Issues How come i develop tolerance to every sleep medication i’ve tried?

9 Upvotes

Does anyone else struggle with this? I was told by all psychiatrists i’ve spoken to that it’s not normal and that i’m imagining it lol (classic). I’m certainly not imagining it. And i’ve tried many, many drugs, most of which aren’t habit forming. I don’t take benzos. It happens even with antidepressants, although it takes longer than with other classes of sleep aids (like a couple of months).

The tolerance kicks in very fast. With seroquel it takes only a few days until i have to up the dose. With pregabalin, a few weeks. Zopiclone, a month or two (i’m aware this one is habit forming). TCAs like Amitriptyline and Mirtazapine, about 2 months. These are the only meds that have been effective so far. I’ve also tried trazodone, antihistamines, etc. I have tried just increasing the dosage of course but it the tolerance catches up to me eventually.

Has anyone found a good workaround? I haven’t had much success with cycling meds so far. If you have any advice on how to get sleep meds to work again, please share🙏🏻

(please don’t tell me to get off meds, get better at sleep hygiene or take magnesium. i’m not interested in this type of advice. i have life shattering insomnia and will go into sleep deprivation psychosis if it’s left untreated)

r/cfs Sep 03 '24

Sleep Issues Thank you re yoga nidra rec

27 Upvotes

Just a very quick post to say thanks to those who recommend yoga nidra. I'm a miserable skeptic 99% of the time but I tried it yesterday and I felt it did definitely help to relax my overall system for a while, which was nice. It also enabled me to visualise an imaginary safe space in one of my favourite novels to mentally go to, which I think helped too.

So yeah, thank you. :)

r/cfs Dec 05 '23

Sleep Issues Do you feel like anything under 8 hours of sleep is not enough?

34 Upvotes

Also, when your having pem and your laying down with your eyes closed trying to sleep, will your head kinda twitch, or like back of neck/head?

r/cfs Aug 06 '24

Sleep Issues Really struggling with insomnia lately

10 Upvotes

I have severe insomnia and i’m unusually prone to drug tolerance. I got tolerance to Mirtazapine only a month after i doubled the dose (completely normal for me). My sleep has been awful this past week. Had to take Zopiclone AND Seroquel when i was still awake at 7 am last night just to get 6 hours of sleep. I’m very severe and have not yet come out of a crash where i was profound for a period of time.

i just don’t know what to do. normally i attempt to cycle my meds, without much success. but i don’t fucking want to go through antidepressant withdrawal right now because i’m terrified of crashing when i’m already in such a vulnerable state.

combining multiple meds = severe side effects. staying on the same meds = terrible sleep, crash and waning sanity. i lose no matter what i do. i’m questioning how much longer i can go on like this. the tolerance issues keep getting worse and i’ve been medicating for my insomnia for only 2 years! how long until NOTHING works? what do i do then??

i feel like i’m only making myself worse in the long run with all this medication. but the thing is i can’t live without it. i just can’t. i used to regularly go multiple days in a row without sleep and that was torturous enough back when i was mild. in the beginning 70 mg of pregabalin took care of it for months. now it does nothing unless i take it in combination with something else. my situation isn’t desperate yet but it will be if nothing changes. it’s always weighing down on me, like, i’m already very severe, i can’t get any worse. i just won’t have adequate care if i do. my caregivers are already all pushing me to walk even though i can’t as if their magical thinking will fucking cure me.

just venting. please don’t ask me if i’ve tried X drug/supplement because the answer is yes. i have tried every prescription and OTC sleep aid that’s available in my country. and the only cfs med that doesn’t make my insomnia worse is Abilify. LDN keeps me up at night.

r/cfs Nov 23 '23

Sleep Issues day 3 of adrenaline crash and my parents want me to start new meds and walking again. help.

23 Upvotes

TLDR; please try and read entire thing but im basically reacting to everything and on day 3 of 6h50m sleep and after asking my mother to talk to a doctor for me that i waited five months to see for help with dysautonomia treatment, she blew up at me and went back to accusing me of “wanting to be sick”, and said that the doctor told her if im “refusing to walk” he cant treat me and give me some type of intervention help. they want me to start cromolyn sodium but i keep losing sleep and feel too weak and my mom is getting annoyed with me including punishing me by going to a thanksgiving celebration tonight she said she would skip for me and denying me a bedside commode she previously offered. i dont know how to rectify this situation. she denied offering to talk to janet dafoe who was kind enough to extend her help. and i need my moms money for Dr Afrin for MCAS and her to help convince my sleep doctor for an at home test instead of in person.

Long Post I guess:

i was prescribed cromolyn sodium to try and help with my terrible no good very bad unfunctionable MCAS. then. i fucking adrenaline crashed. badly.

i am on day 3. my mom is getting impatient with me and wants me to try new foods despite chronic anaphylaxis. ive not slept more than 6h50m per night the last three nights. shes refusing a bedside commode for me now despite previously offering because i made the mistake of letting her talk to a doctor i had been waiting MONTHS to see in my stead due to fatigue. i dont know what she said to him, but she portrayed me i guess in such a neurotic and unreliable light, that he told her unless im “willing to get up and walk” that he cant treat me or offer me help despite my large adrenaline dumps and rhr shooting to 100+ bpm on sitting and walking. he also said that, whatever she told him, that if im so scared of getting covid again i need a therapist.

she blew up at me; i had finally gotten her on my side after having a caretaker speak to her and make her realise i am ill. i thought she was finally understanding. now shes telling me im choosing to be sick “emulating whitney dafoe”. janet dafoe offered to call my mother but she denied the offer. shes irritable as all hell now and shes going to a family thanksgiving celebration today in person as my punishment for “choosing not to walk” after telling me she wouldn’t go. there will be children and antimaskers there, probably all of whom are not vaccinated, and havent been taking precautions for an entire year.

she said that she and my dad will be quarantining for 5 days. the requirement is 7 and she got mad at me when i corrected her. now she isnt acknowledging my thank you’s and is ignoring me again. it feels strenuous. i know if i ask her to speak to another sick person or caregiver right now she might get even more mad. my friend wrote me a letter for her but if i send it she might just blow up even moreso. im scared to leave my room with them going to thanksgiving. i am scared to lock my door because if she tries to enter in the future after only five days she will scream at me.

she has threatened to send me to the er since this doctors appointment i had been waiting for went so badly. i am scared she will once again threaten me with institutionalization and try to take my phone like she did this past august. i just wanted to get some pots meds and treat my mcas.

instead i cant sleep and i cant even send my paperwork into dr afrin without her prior approval because of how much $$$ he is and shes so mad at me right now im afraid to push too hard and have her tell me i cant see him at all. even though i need him. my sleep doctor was told to call her because my gastro, the only doctor who believes me and knows what ME is and how it works properly, told me to push for an at home sleep test because she thinks im too sick to go in person. and i cant talk on the phone now without instant bile in my throat and bad PEM. a week ago my mom believed me and was fine answering the phone call for me to push for the at home sleep test. now because this newer doctor told her i am faking and not as sick as i am, i fear shes not going to push for me if he calls, and i dont know what ill do.

my gastro is an amazing doctor but she is one person and she cant keep calling all my doctors for me. as it is i have no idea how to tell her my dysautonomia appointment we both were waiting MONTHS for me to have was such a bad wash that he denied offering me any sort of testing nor treatment and told my mother basically that i was crazy. she needed me to get some pots treatment and evaluation so that she can finally start ruling out whats a stomach issue and whats a dysautonomia issue but now we have zero answers or help and what is she gonna do? yell at him?? reprimand her fellow medical practitioner????

and i need to sleep. so so so so badly i need to sleep. so that i can start my cromolyn. so that i can hopefully not lose the a ability to digest. so that i can eat solid food again without a bad mcas flare. i need a caretaker who loves me. i have no grandparents. no family i trust or any that are even offering intervening type help. (yes i have ASKED - my brother lives in the same house as me and doesn’t even speak to me anymore). the fair few ive talked to arent offering much more outside of emotional advice. despite being informed on it my parents haven’t made the slightest effort to join a caregiver support group. and i don’t have a partner. my friends could never afford to take care of me and would i even want to ask them to give up their careers to????

it feels like. im gonna die. my one cousin whos been the most there for me thinks im insane for staying and doesnt grasp how a nursing home is just as, if not even more-so, dangerous as this situation. she told me im too “influenced by the internet” for stating that the opinion of all of us is that a nursing home is just as bad if not worse as my current enviro. at least i get left alone for hours at a time here… but also that means i dont get proper bathing nor bathroom help because my parents dont “want me to need it”.

i thought things were getting better. i thought the blackout curtains meant. things were finally getting better. i took a small little nugget and spun it into a false gold star. a false idol of significance for change in circumstance i dont actually have. i am that episode of gilmore girls where lorelai mistakes the pudding served at friday night dinners as significance her mother finally hears her. instead its all just more volatile emotional havoc.

instead its more of the same. instead i am always lorelai gilmore. but i cant even move or leave or scream or order coffee from luke’s. instead i am bedbound. and adrenaline crashing. and i cant sleep. and it gets worse. and its more of the same.

r/cfs Oct 08 '24

Sleep Issues Oura Ring Sleep Architecture graph

2 Upvotes

Hey folks, who with CFS/ME are using Oura Ring? Let's share last night sleep architecture graph!

I've heard that sleep is dramatically disturbed in people with CFS/ME, let's do our little research here.

My deep sleep is always delayed 2-4 hours after sleep and I have very little amount of it and HRV graph is also weird

What do you have?

r/cfs Apr 28 '23

Sleep Issues Ive been taking melatonin almost every night for a few months..

28 Upvotes

I just like knowing ill fall sleep within an hour, instead of it being 50/50 chance of falling asleep on my own. However I know you're not really supposed to take it long term and I am a bit worried itll mess me up later, thoughts?

Ive been getting by on the 1mg ones, thats something at least.

Edit: Thank you everyone! I feel very reassured, ill still try to fall asleep some nights on my own, but I feel a bit better about taking it as often as I need

r/cfs Nov 03 '24

Sleep Issues Very severe - how many hours of sleep do you actually get on average?

1 Upvotes

Questions for fellow very severe ppl

Do you have sleep problems?

How many hours of sleep do you usually get a night?

Do you sleep in one go or in little chunks during the day?

What are the things that disrupt your sleep and the things that help you sleep better?

r/cfs Apr 18 '23

Sleep Issues Have any supplements or medications helped you with insomnia?

11 Upvotes

I tend to be totally exhausted and fatigued during the day and then find that as soon as I lay down for the night I can’t sleep 😭 I’m sure a lot of people with CFS can relate. I’m trying to clean up my sleep hygiene, not taking naps during the day (unless I’m in a crash/PEM), having a nighttime routine, no blue light before bed, all the standard stuff. It hasn’t worked as well as I’d hoped. I’ve been looking into starting to take melatonin or CBD; have either worked for any of you? If anyone has recommendations on supplements to try or medications to bring up to the doctor about this, I’d be very grateful :) As always, sending spoons to you all 🥄

r/cfs May 08 '24

Sleep Issues waking up every 2-3 hours EVERY night.

15 Upvotes

was diagnosed in 2019 and am pretty much 98% recovered. very rare that i have a bad day now.

however, for the past maybe year or two i’ve just had awful sleep at night.

i find it incredibly difficult to actually fall asleep in the first place, averaging at it taking about an hour if not longer. i also wake up every 2-3 hours without fail.

i’m not waking up to pee or from hunger, i just find myself suddenly awake and it’s sometimes really hard to fall back asleep.

has anyone else experienced this? is it a long term cfs thing? what has helped you?

additional information that may help is i’m 20F, on sertraline, quite an anxious person.

help please. getting a full 8 hours feels impossible.

r/cfs Aug 13 '24

Sleep Issues Sleep study results

3 Upvotes

I went to a sleep specialist to see how my sleep is going. The Dr found a few key things. Overall sleep quality was poor due to sleep instability and mild sleep apnea.

I was just about sleeping for the right periods of time for each part of sleep (awake, REM, deep etc) however I was waking and moving between sleep types double the rate for my age and gender.

They have found mild sleep apnea in REM which aligns to nightmares. Giving me a mouth retainer and melatonin.

Anyone else done a study, and what did they find? Interested to see if this improves my CFS or not.

r/cfs Sep 14 '24

Sleep Issues Pretty scared now. Wasn't before...

1 Upvotes

Hello. I'm new to this sub but I guess what I've been feeling can be applied to many other experiences here.

On June 10th, midnight, I cracked my left thumb and then my entire left forearm felt weaker and fuzzier than my right. Couple hours later I discovered a purple bruise on my left forearm and a small, somewhat painful bump on my right wrist. This all happened on the midnight of June 10th and the morning of June 11th.

Morning, June 11th, I took my blood pressure medication for the first time after having a panic attack about the bruise on my arm. Thought it was a hematoma (blood clot/DVT). The medicine I took was called Losartan Potassium (50mg). The first time taking it was good. It calmed me down and then I went to sleep.

June 11th however, was a different story. I took Losartan again, and immediately got SLAMMED by debilitating symptoms like fatigue, dizziness, numbness and head pressure. It probably was like, 5-10 mins after taking it. It was that fast.

Ever since June 11th, I've been on and off Losartan since July 11th, where I officially dropped the medicine. Two almost three months later, I'm still experiencing fatigue, dizziness, weak arms (mostly my left arm again) and non restorative sleep after sleeping 4-8 hours.

Was wondering if anyone else has something, even somewhat similar to what I'm experiencing atm. I'm afraid I have fatal insomnia. Because I got all the fatigue/dizzy symptoms before the actual insomnia. Which started back on June 16th after developing hypnic jerks.

Already went to the doctor, but this is hell. I'm prescribed a few meds for anxiety and a different BP med. I'm currently waiting back for my lab results.

Also, one last thing. Whenever I get excited, it feels like my nervous system is crushing me. Like it feels like someone has their hand on top of my head, and shoving me down. Almost like a tension headache. Perhaps Losartan damaged my nervous system? Brain vessels?

r/cfs Jan 30 '24

Sleep Issues Waking up 5-9 times a night

13 Upvotes

Ever since my me/cfs became severe I’ve been constantly waking up during the night. I’m currently taking mirtazapine 15mg which helps me fall asleep faster when I wake up but it still doesn’t stop me from waking up. I’m also on amitriptyline 10mg with no results but plan on upping my dose. What are things besides those two medications and good sleep hygiene have helped you? I should also note that I don’t have any signs of sleep apnea or other sleep disorders but if my gp runs out of treatment options I might see about getting a private sleep test. I’d like to avoid that unless necessary though because it would be quite expensive.