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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
    Frankie, Sly Saint, Ravn and 12 others like this.
  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.
    Michelle, ahimsa, Ravn and 6 others like this.
  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.
    Michelle, Lilas, Trish and 2 others like this.

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