There are loads of members suffering with post viral fatigue / ME / CFS – how is it affecting your sleep?
I attended the Sleep Clinic at John Radcliffe Hospital back in February and it was suggested that I may be suffering from Chronic Fatigue, I’ve done some basic research I don’t really understand CFS and why it’s affecting my sleep. Surely if my body’s as tired as it is then it would jump at the chance to get some rest!
Does anyone else suffer from CFS that is affecting their sleep, how do you cope?
Does anyone have any experience with CFS and sleep they don’t mind sharing?
During a recent visit to the sleep clinic it was suggested that I may have CFS and this would need to be investigated further, I’m a bit confused why this would affect my sleep as surely if my body is fatigued then I should have no issues with sleep (I’m guessing it doesn’t work like that though)!
Hello, my first time on here, and I want to speak up for the CFS/ME folk like me who can't sleep for hours in the day or night! My sleep has been a challenge since I got clean from using wet and dry drugs 15 years ago. I was diagnosed with CFS in 2008, and am now trying this Sleepio as part of a sleep clinical trial, nothing to do with CFS. Thanks
There have been several members here with CFS, so you will be able to find some posts of interest in the library and discussion topics. Good luck with the course.
Does anyone suffer from m.e and insomnia? I am in the midst of a relapse and could do with some support.
I've been waking during the night for 8 months or so which coincided with me getting some kind of chronic/post-viral fatigue thing. At my worst I was pretty much bed bound, but 5 months on from that I'm doing much better and can walk 500m or so, and seem to be recovering (even if it's slow progress!). Still sleeping badly so decided to give Sleepio a go.
I've just hit the SR week. First night was tough and I felt dizzy and achey the next day but by making sure I got plenty of lying down rest on the sofa I found I could actually do the same amount of activity as normal. I think it's important to replace any time you would normally be in bed with lying down rest during the day so you don't overdo it. Does anyone else have any tips on how to deal with SR?
Thanks Jinny. The first day was definitely the worst, after that my sleep efficiency increased to about 80% so I am getting a bit more sleep even if it's still less than before I started SR. I was worried about it making me more ill but seems to be ok at the moment as long as I rest enough. Really struggling with the QHR though, just seems such a mammoth task to get out of bed.
Hi SunnySide. A bit late, but I've just picked it you post. Good advice from Jinny. I hope that you are coping a little better now. You are in the worst weeks of the course -- and doing so well with SE of 80%!
As Jinny says, QHR is tough, don't clock watch, you will know when you are not going to get to sleep, don't worry if you go over 15 minutes, but don't leave it longer than 25 minutes.
You will find what works best for you at these times, I often read for a short time, but if I have been up several times I make a hot drink.
Make sure you practice relaxation. The profs Downloads are very good. I found I had to actually work hard at relaxing, but practicing twice a day and before bed , has really helped me with my sleep.
I use Andrew Johnson's relaxation apps on my iPad. You can find some free ones if you google him.
Also do you practice Mindfulness?
Again you can find free Mindfulness meditations on the net.
SR and QHR are at the heart of the Sleepio course, keep plugging away and you will soon find that your stats are gradually improving
We are here to help so do keep posting to let us know how you are getting on
Thanks Jinny and Megwich for your help :)
I've been using the autogenic training audio when I get into bed. I find the tensing in progressive relaxation is too much physical exertion for my chronic fatigue but autogenic works well, but I can't do it without the audio. I haven't tried any others so I'll have a look at the ones you suggest! I've just had the session on imagery so might give that a go too.
Sometimes I'm properly awake in the night, so using the QHR seems beneficial. Going downstairs can be a challenge (going up and down the stairs a few times can really tire me out physically), so I've ended up just lying on my bedroom floor with a cushion and listening to an audio book. Maybe not as effective as getting out the room but I'm guessing it's better than being in bed?
Other times I'm awake but not fully, like last night I needed a drink but couldn't muster the energy to reach for my water bottle so just lay there being thirsty for ages until I eventually woke up enough to drink. I think I got to sleep in about 15-20mins after that so didn't use the QHR at all. I'm wondering if I should actually try and wake up and get out of bed when I'm in this half asleep state or not?
Hi SunnySide, QHR is there to get you mind and body to accept that bed is for sleep, so as long as you leave your bed that's fine.
If your audio book is relaxing that's OK – I find that just being up in the dark for about 10 minutes is often enough to make me feel sleepy tired and ready to sleep again.
You don't need to use QHR if you think you fall asleep within about 20 mins.
I think you are doing so well! Keep posting, we are here to help
I've had a difficult couple of days. I went away at the weekend which is a big thing for me. Often after I've done something big I end up spending the day in bed, listening to audio books, maybe napping a bit and doing things on my phone if I have the energy, and I'd usually settle down for sleep at about 8/9pm and get up after 12 hours or so. Since I'm not using my bed except for sleeping now, I rested on the sofa during the day on Monday, and napped for about half an hour. I went to bed at my usual sleep window time (11.30pm) but let myself have an extra half hour in the morning. Did the same thing Tuesday but was feeling pretty rough (dizzy, headache, muscle aches, unable to hold a conversation for long). Yesterday I was feeling even worse so gave in and spent a few hours of the afternoon in bed and probably slept for about an hour. I went to bed properly at 9 and went straight to sleep, but was awake during the night. It's killed my sleep efficiency streak but it was still 70% so not too bad.
I am feeling much better today so I think it was the right thing to do. The lesson I have learnt is that resting on the sofa is just not as good as proper bed rest, and if I've done extra activity I do just need to go to bed even if I'm not sleepig. I will try and only do this in special circumstances though, and only for 'lying in the dark rest', not using my phone etc.
Hi. I’ve just joined Sleepio (in my 2nd week) and thought I’d reach out to others with ME/CFS. I’m having a hard time with the ME currently, I’m very limited in what I can do, but I did recently have a week of more energy so I know I’ll get there again. Without a doubt my serious sleep problems are stopping me from recovering so I need to tackle them head on, hence Sleepio. I know it’s going to me extremely tough as my body is aches and weak, but my determination is stronger.
I will post updates if anyone else with ME is interested.
Hi, I've just stumbled into the thread re ME/CFS. I've had CFS for many years – but learnt to cope, after several 'lost years', and lead a relatively normal life now. Regarding your 5 mins. lying flat – I was a yoga teacher, and of course lying flat is actually a very important posture 'Savasana', where the whole body is relaxed, and at rest. So I guess you've stumbled on something the Yogis have known for thousands of years! As well as Savasana, I've found the Alexander Technique very helpful over the years, as I have very bad back and neck problems (horse riding and car accidents): with Alexander you lie on the floor but with your knees bent, feet flat, head resting on 2 or 3 slim paperback books. There's quite a lot more to it than that, which I could go into if you wanted me to. So most days I spend 1 or 2 times in either Savasana or Alexander pos'n., and get quite deep rest. So many people think with ME you sleep a lot – I've never slept well, and even after 4 months on Sleepio only sleep about 5 hours. I NEVER wake up feeling refreshed and well-rested. That would feel like a miracle if it ever happens. I live in hope!
I’ve had ME for just over a year now.
I’ve just completed my second week of SR, although it’s taken me a long time to get down to the hours required in bed as I keep crashing. Still averaging 2-3 hours and can’t see it ever improving. The Prof doesn’t seem to register that my sleep is still diabolical, just that sleep efficiency is improving, which of course it will if you spend less time in bed.
Lots of old posts here.
I have ME/CFS and find that although tired I often wake after 2 hours – then get a tired headache when I cannot drop back off to sleep.
I am currently on week 5 of the course, and I really do appreciate being given the opportunity to be on it. As with so many ME/CFS/AFS sufferers, I dream of getting more (and better) sleep to boost my energy, and while I have tried just about everything else, I hadn't tried sleep restriction before. The idea behind sleep restriction does make a lot of sense, and I could see that perhaps my spending 10-12 hours in bed every night but sleeping for only 0-4 hours of that time had been partly to blame for removing my natural sleep rhythms.
However, my first piece of advice for anyone with ME/CFS/AFS coming on to this course is DON'T undergo sleep restriction.
It's a pity that there isn't an option when signing up to Sleepio to check a box to say that you have ME/CFS/AFS, because I believe that people with these conditions need to undergo sleep compression not sleep restriction.
I only found out about sleep compression after starting sleep restriction, and I wish I had known about sleep compression sooner. As I've seen explained on these discussion boards, sleep compression involves taking your existing sleep period and cutting off 15 minutes of that time each week until you find a happy medium.
Sleep restriction is simply too harsh on someone with ME/CFS/AFS. I'm only just starting to get back to a resemblance of 'normal' health some two weeks after attempting sleep restriction with adherence to all the guidelines for just two days. By doing the sleep restriction, it's allowed me to see very clearly that ME/CFS/AFS sufferers HAVE TO by necessity of their energy levels spend more time lying down and trying to sleep. It's just not something that should be interrupted by a sudden shock of change to this period of resting.
I also found with sleep restriction that whereas I wasn't stressed about going to bed before (in fact I loved the chance to get into bed in the evening because being awake all day takes its strain), I suddenly started getting anxious. With sleep restriction, my mind knew that I only had a short window to 'get my sleep done', and it all of a sudden felt like the time in bed would either be a 'success' or 'failure'. Previously I always went to bed without automatically assuming my 'fate' for the night.
I have had ME/CFS/AFS and associated sleep disturbance since 1995 (I won't go into the details of what ME/CFS/AFS and insomnia have cost me, but it's been hell), so I really feel confident in advising all people similarly affected not to attempt sleep restriction but to instead try sleep compression. I hope that designers of this course will take notice of this point.
Unfortunately, I am not noticing any other improvements in my sleep since I started this course (although again, I want to highlight my gratitude for being able to try it). But I'll continue to look at how I can keep applying the techniques of this course, and I'll do a re-set at the end of this month by commencing sleep compression and see how that goes.
As some people will be relatively recently diagnosed with ME/CFS/AFS, I would like to share my understanding what is going on with our sleep. To stress, I am not a qualified medical expert. This knowledge has been gained from the research that I have undertaken on ME/CFS/AFS, but it's important to share because many of you will have had the same experience as I had in that your GP/physician will just tell you that you're fine and either lacks knowledge of or disbelieves in the existence of ME/CFS/AFS.
So, things worth knowing about:
1) Our hormones and their messaging systems are all out of whack. It's questionable whether this can be truly fixed, but it's advisable to look at diets and nutrition for adrenal fatigue syndrome to try and address this.
2) We paradoxically find it harder to sleep the more tired we are; this is due to hormonal messengers being constantly switched on to power the body to stay awake when it's tired, and they become even more upregulated the more tired we are.
3) Waking up regularly through the night could be due to a cortisol spike. Again, it's our hormones playing up. There are certain supplements that can help some people better regulate their cortisol.
4) The only thing that I've found in 25 years that has some effect are non-prescription sleeping tablets that contain an anti-histamine element. However, I would say that they only work about 3 tablets out of pack of 10 for me. (Don't mistake this for saying take three tablets at a time.)
Based on the above, I can imagine how having severe hormonal disregulation can mean that the sleep restriction and the sleep compression method don't work. With such disregulation, the body just doesn't follow the mind, and maybe doesn't pick up on the logic of having less hours in bed. It would be interesting to have more research into this. I would love more researchers to take an interest in helping specifically ME/CFS/AFS sufferers with their sleep. We are a desperate group of millions of people worldwide who are largely ignored and will sadly probably get even less attention now that long COVID has emerged. Of course I empathize with long COVID sufferers, but I don't want those whose fatigue has been brought on by other viral infections to be forgotten.
@zoh your comment is very helpful. I have had ME/CFS for 12 years and really did not think sleep restriction would be helpful in my case, in fact it could be detrimental ….. The sleep clinic I attended found shallow non restorative rest – one of the hallmarks of ME/CFS – so I tend to spend longer in bed overnight to allow my body to rest and be able to have some functionality when out of bed …
Excellent summary of the predicament of ME/CFS. I was directed to the Sleepio app by my GP, who knows I have ME/CFS .... this is another example of how little our chronic condition is understood and the need for specific research, including in the field of sleep.
Thank you to Unrest, Zoh, gingerpuss, JV , sunnynorth and others who have raised MS/CFS. After a couple of years being rather poorly with a variety of illnesses, having lots of time off work and NEVER getting the benefit of restorative sleep, I was diagnosed last September. It has been such a rollercoaster professionally and personally. The result has been the loss of my job (teacher) and , dare I say, loss of my identity.
I have been fortunate to have attended on line courses on living with chronic pain, ( another story, 14 years and counting) group CBT course and am now lucky to be receiving 1:1 CBT sessions. I would love to be able to go to bed, knowing that I will fall asleep and feel refreshed in the morning. This is a luxury which has not been accessible to me for many years now. The frustration of having a “crash” and spending 5 days in bed sleeping on and off can make one feel like a huge failure.
Sleepio was recommended to me to try to get a more ‘normal’ sleeping pattern as I am slowly becoming nocturnal! It is difficult to know what is best to do. I am only on week 2, but hearing about the sleep deprivation/restriction which is coming up does worry me. Thanks to those of you who said NOT to do this. Do you follow such programmes to the letter? Or,
as many people have said to me, do you listen to your body? There seems to be some contradiction here for myself and fellow ME/CFS sufferers. Such a misunderstood illness but so debilitating and isolating.
I DON’T want to sleep during the day or for so long. I literally cannot get out of bed. There is no lack of motivation which my therapist is constantly seeking for, to fit in with the ‘depression’ diagnosis. I am constantly feeling a failure because I can’t get up to do things. And when I do the most normal of things, I run the risk of suffering from post-exertional malaise (PEM) which can make one want/need to sleep more!! There seems to be no explanation for such situations. It is a shame as it could help us to manage the fatigue/exhaustion better.
I apologise for my lengthy rant. It was so helpful to hear that there are people like me out there. People who are not just tired, whose bodies and their needs are very misunderstood by professionals and friends alike. The exhaustion is totally consuming and controlling. We need help to understand the role of sleep in all of this and how we can manage it best to enable us to get the best out of life, hopefully avoiding the understandable loneliness and depression which comes as a result of the symptoms. I am not depressed. I just want me back and would love to here the experiences and advice of other ME/CFS sufferers.
Thank you. Tootsie Roll
Hi Tootsie Roll,
I’ve had ME/CFS for decades.
It sounds as if you could really use some help with learning to pace yourself. This comes before addressing sleep, and for the reasons you mention. When you are having crashes, and overdoing things to the point that you need to sleep during the day for long stretches, you won’t be able to follow a regular sleep routine.
I struggled with sleep restriction. This was partly because as luck would have it, I kept having other medical issues crop up that meant I had to sleep during the day. The flu. Painful conditions that kept me awake at night, etc. So I never gave it a fair trial. Now that things have calmed down for me, I’m doing sleep compression instead. It is definitely easier, although not easy!
Try not to become nocturnal. Many patients do, and it ends up making life more difficult as you end up struggling mightily when you have to wake up at normal hours. I’ve been there and it’s not a good place to be. Sleepiness and PEM are two different things. You can be under slept and not have PEM. It’s OK to get up earlier than you might like to avoid becoming nocturnal. It’s best to get up at the same time every day and rest or nap later if needed.
Here are some resources to start with, if you decide you want to learn to pace yourself:
Make sure to click on store. She has a new chapter on sleep available for purchase. https://www.eleanorsteinmd.ca/offers/tEU2YijC/checkout
I don’t think she covers sleep compression, but she does recommend both sleep restriction and sleep compression for patients, depending on their starting point. She says repeatedly that no one intervention helps every patient. I know she thinks you have to address pacing first. This doesn’t mean your pacing has to be 100% perfect!
You can search for topics that interest you.
If you want to know how my sleep journey goes with compression, I do post from time to time on my profile. (If you can’t figure out what this means, please ask.)
Your current situation sounds overwhelming, but trust me, you can improve things. Many of us have. There are support groups out there to join, if you feel that would be helpful.