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Sleep problems in ME/CFS - discussion thread

Discussion in 'Sleep Disturbance' started by rvallee, Oct 27, 2021.

  1. rvallee

    rvallee Senior Member (Voting Rights)

    Last edited by a moderator: Oct 29, 2021
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    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:

    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.
  3. Mij

    Mij Senior Member (Voting Rights)

    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.
  4. bobbler

    bobbler Senior Member (Voting Rights)

    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."
  5. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Aotearoa/New Zealand
    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.
    Michelle, Mij, alktipping and 3 others like this.
  6. Wits_End

    Wits_End Senior Member (Voting Rights)

    UK London
    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.
    rainy, Missense, Trish and 2 others like this.
  7. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Aotearoa/New Zealand
    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.

    Michelle, Trish and Peter Trewhitt like this.
  8. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    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.
    Fizzlou, rainy, bobbler and 6 others like this.
  9. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Aotearoa/New Zealand
    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.
    Mij, Michelle and Peter Trewhitt like this.
  10. Michelle

    Michelle Senior Member (Voting Rights)

    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. :arghh:

    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. :unsure: 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. :grumpy: Or, rather, I might if I actually had the strength.
    ahimsa, Missense, alktipping and 11 others like this.
  11. Binkie4

    Binkie4 Senior Member (Voting Rights)

    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.
    ahimsa, Michelle, Missense and 7 others like this.

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