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Does your ME cause problems with falling asleep at night at a normal time? (Without sleep meds)

Discussion in 'Sleep Disturbance' started by leokitten, Jan 28, 2019.


Does your ME cause problems with falling asleep at night at a normal time? (Without sleep meds)

  1. Yes. Equally bad regardless of exertion

  2. Yes. Worse after exertion

  3. No when well rested but yes after exertion

  4. No. No change or only occasionally worse

  5. No I fall asleep more easily

Results are only viewable after voting.
  1. leokitten

    leokitten Senior Member (Voting Rights)

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    A note for those who use sleep medication to help combat ME sleep issues - this might be more difficult to answer since the body becomes somewhat dependent on medication when taken chronically. If you could try to answer based on your time with ME before you ever took sleep meds or, if that is not possible, try your best to guesstimate how sleep-related symptoms would be now if you had never taken medication.
  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    UK East Midlands
    Good poll topic @leokitten

    Thinking back to a few years ago when I wasn’t aware I had gradual onset ME I’d say it was no general problem but I was definitely starting to get some tired but wired episodes.

    Since I got diagnosed after becoming more towards moderate on mild/moderate end of ME spectrum my sleep has got more and more delayed pretty much all the time but a lot worse when PEM
    Last edited: Jan 28, 2019
    Ravn, andypants and leokitten like this.
  3. Ravn

    Ravn Senior Member (Voting Rights)

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    Overexertion always causes trouble falling asleep.
    When not overexerted I cycle through periods of weeks to months when I don't have major troubles, and periods when I do.
    Have never worked out why.
  4. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    I have to be the contrarian. My ME causes problems with sleep that are less after exertion. Exhaustion overrides it.
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Oregon, USA
    Same for me. Overexertion always leads to worse sleep. Resting for a few days makes my sleep better (not great, but better).

    But I didn't vote because the poll is about falling asleep. I never have trouble falling asleep at night.

    [ Well, almost never. Very rarely something will keep me up but the last time that happened was more than 2 years ago. ]

    My problem is staying asleep.

    I wake up many times during the night for no apparent reason. I don't wake up because I'm hot/cold, or having a nightmare, or anything like that. I'm just awake.

    And I never lie awake worrying (that's something my husband often does). I'm always able to go back to sleep very quickly (less than 5 minutes).

    On a good night, I only wake up 4-5 times. On a bad night I wake up 12-14 times. That means I'm sleeping in short bursts that range from 20-30 minutes. And for all I know I also wake up more often and I'm just not conscious of waking up. These are just the times when I know I'm awake.

    Some years ago I did a home sleep test to check for apnea. I did not have any apnea. It's not just that I was below some threshold number of apnea events per hour. I had zero apnea events. And my blood oxygen (measured by a thing attached to my finger, forgot the name) was also fine (98%).

    I never did a full sleep study because the doctor (sleep specialist) was pretty much fixated on the apnea thing. She knew nothing about autonomic issues and I think these are related to my sleep problems (I could be wrong). Anyway, I didn't have much faith in her ability to help me. So I gave up.
  6. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    I started out having very little sleep at all (2-3hrs per 24hrs - not exaggerating - I actually thought I got more til I did the numbers).

    Lots of stuff between then and now.

    Now I’m pretty stable, on a good level compared to how bad it has been. And sleep-wise so good that I wondered for a while if I maybe can’t have ME/CFS if I no longer have sleep problems.

    I can’t say this is a cardinal symptom of ME or anything but it certainly is a very distinctive symptom of my illness:

    Now, when I exert past that day’s envelope (or few days cumulative envelope), I have trouble sleeping - both getting to sleep and staying asleep. And it gets worse the more into PEM I get.

    It’s hugely distinctive from my healthy response: that more activity, exercise, etc improves sleep.

    I can now rest my way into being able to sleep. I can even nap my way into more and better sleep.

    It’s hugely counterintuitive. But replicated on myself ad nauseum.
    andypants, Wonko and leokitten like this.
  7. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Sorry, my point is:

    When I was in my first year or two, and had not found how tiny my envelope had to be, I would have picked option 2.

    Now, with my pacing under control (except when the envelope randomly changes on me or I have no control of life events), I say option 3.

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