Managing sleep dysfunction

  • @river said in Managing sleep dysfunction:

    @PaulB I know what you mean, if I sleep during the day (very rare for me, it usually only happens if I'm extremely sick from non-PEM causes) I wake up feeling worse, kinda poisoned. Same if I'm woken too early from night time sleep. I'm not sure if it's lactic acid, but it's definitely cycle disruption related. I always visualize it as your brain is cleaning the dirty dishes while you sleep, and if you wake up before its finished, your brain is full of dirty dishwater.

    I love that metaphor! haha.

    I'd expand it to say the whole body is cleaning the dirty dishes, and if you wake before the cycle is over, your body is full of dirty dishwater.

    The 'kinda poisoned' is a good line too.

    A very random / weird thing I often feel in those circumstances (which as I say, I avoid where possible) is a hollow teeth feeling. The two front teeth in particular. Weird hey. Does anyone else get that?

  • @river said in Managing sleep dysfunction:

    @Katt lactic acid is the waste product that accumulates in your muscles when you exercise and causes muscle pain and fatigue. Some research shows that people with CFS have a rapid build up of lactic acid following mild exertion because we can't clear it properly, and/or produce more of it due to inefficient energy production.

    Yeah, when I'm in a flare (which is rare nowadays, touch wood), I can get what feels to me like lactic acid buildup. It's like I've just run an 800m (I did athletics pre-CFS).
    And, to confirm, it can be after little exertion at all - it was sometimes caused by daytime sleep!

    To get out of it, I need to wait it out. Eat little, and certainly nothing problematic (avoiding FODMAPs is crucial for me).
    Like I've said above - not sleep further.
    Do no other activities that could deepen the issue.
    But wait it out, and get beyond it.

  • One more little addition from me for now, on managing sleep dysfunction.

    And sorry if I'm going on too much about this particular thing 😳
    I'll talk about different sleep stuff next time, I promise.

    One result, for me, of sleeping in the pre-sleep time is that I'd have worse insomnia in the sleep-time night.
    e.g. This could even be going to sleep at 6pm. I'd wake up at 9pm and be WIIIIREEEEDDD. And it was horrible.

    My goal is to go to bed in the approximate range of a normal bed time. For me at the moment that is 8pm-9pm.

  • @PaulB It's just so complicated trying to find a good sleep pattern/arrangement. Last year, I was referred to a sleep centre to hook me up for an overnight stay to get data. Covid put a stop to the booking and I haven't initiated re-booking. My sleepiness is constant and I was needing advice on how to stay awake during the day for longer periods of time and to train my body to rest better at night. What rings true, is the constant efforts to find what works. So far, I sleep when I have to. My body just shuts down; usually without warning. I grab the wakeful time to do whatever I am able to. Oddly I wake unrefreshed most of the time, yet I must be sleeping or I wouldn't be able to function at all. Marvellous thing the brainπŸ€“

  • @crashdummy I feel for you. I haven't had situation like that - sleepiness constant - for a long time.
    I'd love for us to workshop through it, and try and hunt for ideas.

    Probably, generally, I need to leave that your health care professionals. But if you are interested in workshopping on a "shooting the breeze" level, I'm in.

    On a different matter - I'll start up a sub-thread now: the idea of different types of tiredness.
    Probably not a profound idea to many - but it's one that has helped me lots.

    Two of the tireds are: sleepy tired. And body tired. I get leg tired at times, and I get whole body tired at times.
    There's at least another 4 tireds.

    Does any one else have different tireds?

  • @PaulB restless tired. I need to do something, I can’t do anything tired. This is the kind of tired that so often prevents me from sleeping properly.

  • Brain tired. Like brain fog, but a flavour of tiredness thrown in there.

  • @crashdummy said in Managing sleep dysfunction:

    @PaulB Last year, I was referred to a sleep centre to hook me up for an overnight stay to get data.

    I got myself a booking at a sleep centre a few years ago - was really happy when I had insomnia on the test ...

    was crazy annoyed for the following year when they gave me a sleep-apnoea diagnosis and didn't tell me about the insomnia at all.

    Long story short - the management they gave for sleep-apnoea is 1000 times worse than the problem, and costs $1500 to boot.
    Thank goodness a specialist helped me get of the stupid machine - nasal spray was all I needed, to stop sinus / glandiness. And what a great benefit that is, for more than just getting rid of sleep apnoea.

    So a bad interim from that sleep study led to a long term massive positive.

  • @PaulB I had a similar experience when I had a sleep study. I didn't sleep ALL NIGHT LONG (thanks to the exertion from getting to the appointment and back, and the discomfort from all the equipment). I go into the clinic the next day and get told I slept perfectly and just have mild sleep apnea. What?! Then I'm told the insomnia is actually a psychological phenomenon where I'm sleeping but don't realize I'm sleeping.

    I've since learnt that a) people with CFS can have EEG graphs that make them appear to be asleep when they're actually wide awake, and b) if my sleep quality is very very poor, I will just experience short periods of amnesia between longer periods of full wakefulness, instead of "sleeping". I think both of those things happened that night.

    Fortunately, I wasn't pressured into any fancy equipment, as my specialist didn't think my apnea was bad enough to warrant it.

  • @PaulB @river @RatsAreFluffy
    Just scratched Sleep Centre off my list of things to get around to doing! There's another sort of tiredness 'fed up tired'πŸ€“

  • Community Moderator

    @crashdummy Just as am example of a different outcome (and I'm not saying this relates to your situation, and it clearly doesn't to @river 's (that sleep study sounds all sorts of unpleasant 😞 ) I had a sleep study done and it turned up sleep apnea, and it was treatment for that, that got me my capacity to read a bit back. My sleep apnea symptoms weren't "normal" either (ie, I wasn't sleepy during the day), but treating it did help (although I still sleep badly - just not quite as badly as before).

    I do like (and empathise with) the "fed up tired" 😁

  • @Daffy_Dave

    Do you use a cpap machine Dave?

    Like you say, something like a cpap machine can be wonderful for some.

    It wasn't for me personally - I had a description of what it was like, but I've removed it, as - again - it could be a good thing for some, and I don't want to unnecessarily prejudice that.

  • Community Moderator

    @PaulB Aye, a CPAP machine gave me my reading back, and a tiny bit of energy as well (marginal in an ME/CFS context, but as we all well know, even marginal gains in an ME/CFS context are welcome!) That said, as per your experience, it's not for everyone, and there seems to be more than a few different varieties of sleep apnea, and I definitely wouldn't recommend people jumping to get a CPAP machine (not cheap) speculatively. I'm glad your situation could be resolved without it πŸ™‚

    I'd obviously prefer not to have the machine on (I'm not sure too many people would say sleeping with a mask strapped on and higher pressures in their airways adds to comfort!) but I'm lucky in that for me it doesn't really bother me too much, and the benefits well and truly outweigh the costs.

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