Sleep problems in ME/CFS - discussion thread

Posts moved from Open Medicine Foundation (OMF)


Could be interesting to check.

https://twitter.com/user/status/1453380066281345026

 

Variability between people with ME and within the same person is significant, and I suspect there may be more than one factor determining this variability:

Hypersomnia
I experience hypersomnia at times when my ME feels like an active disease process, it was a feature of when my ME began, and it also occurs when I am experiencing a marked relapse in my ME. It has been an issue perhaps some five or six times in the approaching 30 years of my ME, though it can last for months even years.

Unresfreshing Sleep
Unrefreshing sleep and disrupted sleep patterns are ongoing symptoms of my ME. However unrefreshing sleep does not necessarily seem to be related to the quality of my sleep, and a good night’s sleep can result waking feeling terrible, as much as a disturbed nights sleep. It is not uncommon to wake requiring several hours of rest before attempting any activity.

Disturbed Sleep Patterns
Even in periods of very disrupted sleep patterns, with trouble getting to sleep, waking in the night, needing sleep during the day, a body clock in free fall I can still find, often to my surprise, that the daily total of time a sleep remains relatively constant around seven or eight hours.

Sleep and PEM
Sleeping seems to be associated with coming out of the worst of an episode of PEM, particularly when an episode feels particularly acute linked with severe pain, including a worsening migraine that leads to vomiting and particularly explosive episodes of IBS. If I can get to sleep it seems to help stop this worsening, though I can’t be sure if getting to sleep is a cause or a consequence of starting to come out of PEM.

Sleep reversal
A body clock in free fall can result in being awake at night and asleep during the day. Most of the time if I don’t fight the shift, I can grab a more normal sleep routine when my body clock next passes synchronisation with the actual clock. Trying to force my body clock to change can result in insomnia, and certainly feels more disruptive to daily activity than just letting the free fall happen.

Night sweats
Night sweats are possibly associated with disrupted sleep, though waking up with as soaking wet torso requiring a change of both my clothing and the bedding. This profuse sweating only seems to occur when I am asleep, either at night or during a daytime sleep. It is perhaps associated with periods where I am experiencing more PEM than usual, though it also can be a consequence of eating food that I am intolerant to. If I am in the process of eliminating a food stuff that I am intolerant to night sweats are also common.

I can not be sure that the more general night sweats are unrelated to those in a ‘cold turkey’ like situation, because I can not be certain they don’t relate to further food intolerances I am unaware of.

Insomnia or hyposomnia
At times I also experience insomnia in the sense of marked reduction in the total amount of sleep time. This is perhaps the most disruptive to my daily activity as it seems to be associated with an increased need for rest. I am less clear of any pattern though it can last for a matter of days or for several weeks. It seems to result from trying to force changes in disturbed sleeping patterns, but also occurs independently of that.

I feel we desperately need a better understanding of the natural history of sleep in ME and of the patterns of sleep disturbance, before we do any intervention other than gentle coaxing. Certainly we have no idea if the ‘sleep police’ are likely, like GET, to do more harm than good.

 

My sleep is not the typical experience for pwME.

I sleep fine during PEM, so in case anyone thinks that sleep prevents or relieves PEM in some way- it doesn't. Only time relieves PEM.

Fist 10 years I slept like a baby and woke up feeling refreshed even though I had PVFS and couldn't stand or walk.

At the 11 year mark my sleep completely switched off one night as though someone had flipped a switch, I went from sleeping like a baby to absolutely nothing for almost 2 years. Something else was 'off' during that period. I can't explain it and don't know what it was.

I went to a sleep lab and laid wide awake all night b/c they didn't want me to take sleep meds, so the tech came in and told to 'try and sleep', I explained that I was unable to initiate sleep and it wasn't going to happen, she left. A few hours later she came back and allowed me to take the meds. In the early morning the tech told me my sleep was 'good' and 'normal'. They never sent my doctor the lab report.

My natural sleep returned after 2 years and I no longer need meds.

I've had hypersomnia and insomnia on and off ever since. Sometimes I can't lift my body b/c it feels like lead and aches I need to sleep for 2 days to recover.

Lots of night sweats with menopause that keep me up, but it's been leveling off of the past year.

 

There is a book review of the following in the times: Life Time: The New Science of the Body Clock, and How It Can Revolutionize Your Sleep and Health by Russell Foster,

Times link (I'm sorry I haven't done share token as not on the right device/can't work it out right now): https://www.thetimes.co.uk/article/life-time-by-russell-foster-review-6c3mjhp53

Whilst when you look at the description on amazon etc it looks like the usual blurb of self-help, the times description seems to note there is a bit more to it.

I can't remember which thread it was here that was noting we now know that there are cells outside the brain that are involved with circadian rhythm/keep time and that hence different systems can be out of sync etc. Anyway I've copied the following quote and don't know whether this is new or the same old. But if it actually is the case that these are produced every 24hrs and only last as long (rather than it being the old light theory alone) what might that mean re: sleep reversal in PEM and so on?

"This mechanism is, appropriately enough, controlled by chemicals called clock proteins, which are themselves made by clock genes. The clock proteins come together into a kind of molecular machine, but, like a protein mayfly, they can survive in the body for only one day. By the time the 24th hour has passed, they have broken down — turning into useless protein pumpkins when the clock strikes midnight at the circadian ball — and the genes are free to make clock proteins again. In this way they provide the tick-tock of our body, the time signal on which our daily rhythms depend."

 

I have an unusual pattern to my sleep and ME, every autumn, even though my ME is stable, I will have a relapse.

It’s annoying as often comes during the time I have to adjust to all the temp changes and my tolerance for that is not good. I live in a place that literally can have four seasons in one day and feel like a human barometer, get very stiff in winter and can feel a southerly coming by having an increase in joint aching. This adds to any sleep problems but take regular analgesics and always have one dose up my sleeve for night time pain

I take a 1/4 tab of zopiclone at night, have for years, that is a lot better than not falling to sleep….especially after some unexpected event during the day ruins my pacing and rest, It has no hangover effect as only lasts for four hours in the system. Other sleep meds ineffective like melatonin or low dose TCA which had too many side effects

Normally I have to get up in the night to pee but settle back to sleep and when feel most well have increasing frequency of vivid dreams until waking. If a bad storm happens in the early hours it will make it difficult to return to sleep. I dislike oversleeping as I feel even more unrefreshed and groggy.

Then within a few days everything goes down quickly and I am waking at 4 and can’t return to sleep, then more pain starts while lying there waiting for the sleep cycle to start. I become restless and know I will start getting increasingly frustrated so get up, trying to resettle after a break, usually fill my hottie, keep lights off etc. I have learnt to just run with it and usually get up and start my regular routine and adjust my rest schedule and after about 6 weeks things return to normal, I increase my Zopiclone to 1/2 tab which helps and when feeling Ok reduce it. have tried a longer acting benzo but doesn’t work and I am not willing to take anything else after having had a severe reaction to meds in the past.

I don’t tend to sleep long during the day, usually have one or two naps, usually wake myself up snoring. 30mins almost to the minute. but when most well can get by with one nap. I do not feel refreshed by sleep at all. During relapses I do not have vivid dreams.

Have been able to fall asleep almost immediately and wake within 30 mins prior to ME and felt very refreshed, family found this very odd but useful for work when had to work long hours and coped with night duty until ME gradually worsened and stopped nights and kept to strict work hours if possible.

This is a seasonal pattern and is likely to be due to circadian rhythm disturbance (like in seasonal affective disorder but my mood does not change).

The other unusual thing related to the pituitary and my relapses is that my thyroid function nearly always suddenly changes, I am on replacement following a toxic nodule getting irradiated, so my thyroid doesn’t produce as much thyroxine. This is very unusual as it should stay stable and puzzles my endocrinologist and GP. So for me this shows the inter-connections of the HPA specifically the thyroid, the pituitary and the pineal gland which produces melatonin to regulate sleep. I just have to run with it, when I relapse I always get my thyroids checked then adjust the dose myself as I have clearance to do this from GP and specialist because I am a doctor. Sometimes I go hyperthyroid and sometimes it is hypothyroid but very similar crashes.

 

While we're on the subject, I noticed on the front page of one of the UK papers today that GPs are being told to prescribe a sleep app (Sleepio, was it called?) as first-line treatment for insomnia as it produces better results than meds such as zopiclone. Or something like that, anyway.

 

GP’s are very reluctant here to give anything but a short supply of Zopiclone as a lot of insomnia is short-term due to situational stressors and resolves if the person gets the right type of social and practical support and help eg counselling.

Also if you take Zopiclone for more than a month there is a risk of withdrawal symptoms especially rebound insomnia and then the cycle of insomnia starts again especially if stressors not resolved.

There is a big drive here to move milder forms of mental health problems like insomnia out of primary care (to free up resource which is being overwhelmed by increased distress in population, especially youth) and by improving resilience, if possible, and to use self-management strategies rather than relying on sleep meds. Many are free and promoted by the Mental Health Foundation, which is a patient led organisation, and the population wanted this too.

The wellness industry has subsequently taken over with yoga/mindfulness/CBT, online and using apps to track sleep with smart watches etc.

This UK Daily Mail Article seems to sum up the Sleepio app quite well.

https://www.dailymail.co.uk/news/ar...ts-set-make-fortune-GPs-told-use-new-app.html

 

What in the name... insomnia is not a mental health problem, it is physical. I've had my ME made permanently worse by insomnia. I've been taking zopiclone since 2009. If you tell people that sleep problems are a mental health issue they will treat it as if it is inconsequential, and the patient's condition will deteriorate as I have experienced.

There is nothing mild about my insomnia.

 

Yes, totally get this, but insomnia is a brain disturbance from physical and mental health problems and I am also coming from a clinical and public health policy perspective and in NZ it is on the health continuum but also on the mental health and physical health continuum using cultural models. It is Psychiatry’s knowledge of sedating medication that is used to treat it and psychological interventions (and many other things related to sociocultural determinants)

I appreciate PwME do not want a bar of this but so many of us are on sleep meds and a lot of pwME find them very useful and are not offered sleep studies in NZ or investigation into ME-driven sleep disturbance as they are a very expensive and a scarce resource (because, here at least, they are focussed on sleep apnoea arising from obesity) Psychiatry does a lot of research into Sleep arising from brain disorder at a range of severity of many neurological and other medical disorders with neurophysiologists that specialise in Sleep. Also Avindra Nath at the NIH has just finished his big project on ME and he did sleep studies so maybe we will all get some more insights.

And I am not saying your insomnia is mild or mental health driven, as I have stated I have major insomnia issues myself, arising from ME and medical disorders. Also I am not in clinical practice now as I am retired but all of my past clients with ME were not on sleep meds, nor did I prescribe them for their MH problems.

 

I have been having this exact thing! The last three Octobers I've crashed--the crash in October 2020 was the worst crash I've ever had and was otherwise completely unprovoked. During that crash, among other things, I had a few times where it was as if the biology of sleep just stopped. Twice I went over 40 hours without any sleep. Did two hours of guided relaxation meditations. Listened to boring books. Nothing put me to sleep. Which was especially awful because the malaise of the crash was so miserable and I couldn't even get a few hours of respite through sleep. I'm at the point where I don't know what to expect this coming autumn. But I've been wondering if there is something about light duration that interacts with whatever causes PEM in the same way that trees know when it's spring.

Sleep has always been one of my biggest problems with ME/CFS. As Peter mentioned up thread, there are multiple problems: can't fall asleep, disjointed/early waking (I only get 7-8hours of uninterrupted sleep 1-2x a year; usually I sleep in two shifts of 3-4 hours--or less), sleep reversal, and/or unrefreshing sleep. At times I've taken as much as 12mg of melatonin in a 12 hour period. Most nights melatonin helps me fall asleep 1-2hours earlier than I would have otherwise--except when it doesn't. Early on in my illness we tried TCAs like Trazadone and Doxepin. Nothing. I've been reluctant to try hypnotics/Z-drugs because I'm on a long-acting opioid for pain (which can exacerbate insomnia but is only sometimes a cause of it--though reducing that opioid can cause insomnia that lasts far far far beyond the amount of time expected for withdrawal symptoms i.e. over 6 weeks; to add to the mystery, short-acting opioids wake me up like a cup of coffee does for everybody else, making me reluctant to take one at bedtime as I'm likely to then be up all night). Being perimenopausal is just making it all worse.

As for sleep hygiene, I have two words: f**k off! Not only have I yet to hear of a single PWME for whom it's actually worked, the research I've seen suggests at best patients with insomnia from most causes fall asleep maybe 10 minutes earlier. I've not done an exhaustive systemic review though my memory is that even those don't show significant clinically meaningful improvements--but then my memory sucks so don't trust me. I do a sort of modified sleep hygiene: get ready for bed at the same time every night (though almost never go to sleep then; just like to be ready just in case), play soothing music, take my meds, etc., but it's mostly because the rituals are soothing. It's has no impact on my sleep. And the next provider who says how surprised they are when I tell them this I'm going to stab in the eye with a rusty fork. Or, rather, I might if I actually had the strength.

 

You could be describing my bedtime experience @Michelle, apart from the autumn pattern. I just have such problems sleeping- have tried everything you describe even the modified sleep hygiene which doesn't work. Calming music, boring books etc. Never get 7-8 hours of uninterrupted. A good night would be 2 or 3 about 3 hour spells. At the moment it may be almost nothing. Lying here sending thoughts to you. Sleep meds don't work.

 

discussion on BBC Radio2 with Dr Sarah Jarvis.
https://www.bbc.co.uk/programmes/m001pfzv

One person came off Zopiclone using melatonin. Interesting to hear the NHS position on use of melatonin.

Dr Jarvis highly recommends CBT.

The app recommended by NICE is called Sleepio.

Insomnia: NICE recommends digital app as treatment option

https://www.bmj.com/content/377/bmj.o1268

https://www.sleepio.com/cbt-for-insomnia/

 

CBT for insomnia is a joke. I'm left wondering about what tricks they used to give the illusion of success, we've seen them do it with exercise and I'm betting this is no different.

 

100%. It's a blatant market grab, building up a market for a product they've got warehouses and a huge supply chain of. There are plenty of good apps for meditation that work far better than this junk. CBT is all about thinking and falling asleep is the opposite.

And this says everything about how much this is all a joke:

There has never been a single RCT of CBT. Because you can't control for it, it's an active thing. They're clinical trials, and especially bad ones at that since they are comically biased towards not just finding but producing an effect, and routinely report one even when there isn't.

Even with drugs they are very hard to achieve and fail often, with debunking often taking far too many years of sunk cost and escalation of commitment. As gold standards go, it's literally the worst one in all the expert professions. Where they have, you know, actual objective standards instead of this series of judgments, opinions and evaluations.

Truth is medicine has never actually achieved effective sleep medication or treatment that doesn't have huge side effects, if at least long term. It's a hard problem but it's still on them. Offering the same old tired pseudoscience is just layers upon layers of having given up a long time ago.

Sleep is weird, no one understands it yet. Since I've developed POTS some weeks ago, with a few exceptions I've been sleeping so well. I fall asleep quickly and either don't wake up at all or fall back asleep shortly. It's some of the best sleep I've had in my life. I don't know if it's a coincidence, probably, and not a damn MD or PhD could scientifically understand why because sleep is just not understood at a sufficient level yet. It's barely at the "faces on Mars" level of resolution.

This really continues the descent into pseudoscience and alternative facts that medicine has been obsessed with for far too long. Truth is they're out of their depth, have reached the limits of what humans can understand and apply, and it shows everywhere. AI is the only way forward at this point, humans can no longer make significant progress at this point on those basics aspects of physiology.

And blatant horseshit on the AI in this app. AIs can many things now but not this. It's a cheap marketing gimmick added on top of an even cheaper gimmicky quackery.

 

I think someone should take a good look at the trials on which NICE based their conclusions and ultimately recommended use of this product.
Sleepio to treat insomnia and insomnia symptoms
Medical technologies guidance [MTG70]Published: 20 May 2022
Overview | Sleepio to treat insomnia and insomnia symptoms | Guidance | NICE

 

I haven't been able to see full text but please tell me that the 'trial' of insomnia at least used... sleep trackers and not asking people 'whether they feel more positive about their insomnia' [after they've had x sessions persuading them 'why are you worried about not sleeping, given you are still here aren't you' type thing]?

 

First, huge apologies for rarely coming on this site (which I recommend to everyone wanting/needing to learn about ME), and then coming on just to ask questions. My ME (Dxed Dec 27, 2022 but probably dating back to 1994) has been getting progressively worse. I'm now mostly housebound and should be bed-bound but have to manage other health conditions, feeding cats when husband is away, etc., whereas just two years ago, before knowing I had ME and shouldn't have been doing this, was exercising daily--moderate walks of up to an hour-- and running errands, doing laundry, etc. and driving long distances at least once a week to medical appointments. I first figured out from this site that I might have ME when the amazing @Trish answered my question wondering if anyone had this issue: the more exhausted I am (and the less sleep I've had), the harder it is for me to sleep. Trish said many in the ME community refer to it as "tired but wired," possibly/probably related to PEM. (I think I may be in a near constant state of PEM, as I do have some slightly better days--like today, when I'm able to sit up and type, though I will pay for this later.)

I am having increasing insomnia and have been in a state of almost never getting drowsy (except if I'm post-op from anesthesia) for about 16 years. I don't want to be on all of this medication (currently needing 1.25 mg of clonazepam, 100 mg of gabapentin, 1 mg of tizanidine for afternoon nap; 1.25 mg of olanzapine [trying to get off that--prescribed a decade ago for major depression episode], 1 mg tizanidine, and 200 mg of gabapentin at night--and with all of that, I still slept only 5 hours last night). I've tried everything (except CBT, which I've used extensively in the past for everything from eating-disorder recovery to just worrying about something a lot, and which I KNOW will not help the insomnia)--meditation of various types, a heating pad when it's not 100 deg F outside (that does help a bit, when the meds aren't working enough), reading something boring (only "lights up" my racing mind), practicing really good "sleep hygiene," etc. None of those non-medicinal things work for me, especially not without meds. And if I don't get about 9-10 hrs of nighttime sleep and 1-2 hours of afternoon sleep, it's like a snowballing effect--I get symptoms like mind-racing, feeling like someone injected me with caffeine (which I've avoided for the past 30+ years), leg cramps, etc., that make it even harder for me to sleep.

I've also tried tapering off just one of those meds (the tizanidine), and after two weeks of so little sleep that my heartbeat was quite irregular, my GP told me to go back on the medication because my body desperately needed sleep.

Anyone else in the same boat and/or offering suggestions? Thank you!

 

Ah, yes. I sleep through the night maybe once or twice a year going on 15 years or more now. And perimenopause has just made it worse. I've had two occasions where I've gone 48 hours without sleep. Like the biology of sleep just stopped. Lots of nights of only 1-3 hours (and not even necessarily concurrent hours). And when I've tried tapering off opioids, I went about 6 weeks with only 3-4 hours of sleep each night before I just cracked and returned to my former dose. It's absolutely miserable.

The game changer for me (but your mileage may vary) has been cannabis edibles with a 1:1:1 ratio of THC, CBD, and CBN. Apparently the CBN is key for sleep. Like you, I'm on a lot of the same medications. But adding 1/2-1 gummy with my bedtime meds and then a half gummy when I wake up after five hours means I fall asleep much faster than before. I still have one night every 10 days or so when I don't fall asleep until 6am or so. But I'm sorta resigned to that at this point. Given your location, that may be an option for you.

I've found audiobooks more effective than meditation. The key is to make sure it's not too plot driven (so no thrillers or mysteries!). So for me, I listen to books about history or certain types of literary fiction or classics like Proust (who is brilliant for this as you won't miss much plot wise if you fall asleep during an hours-long dinner party lol). And if I can't fall asleep, well, at least I have a good book to listen to.

 

HRT has made all the difference to me. I went from 3-4 hours sleep a night for 18 months to a fairly normal sleep pattern within 2 weeks of starting a low dose. The first time I took progesterone I was so zonked I couldn't lift my head up for about twenty minutes.

Being in the UK I had a GP surgery that would only prescribe me antidepressants, so had to go privately to be taken seriously about perimenopause. I tried three GPs at my surgery but not one of them connected insomnia in a woman in her early fifties to hormone problems. And one of the GPs is a woman in her early fifties.