Dysautonomia and other symptoms
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@river Yes! the clothes layers on and off game at nights.
For the longest time I wore 4 layers (sometimes more!) to bed. The cold was such an issue - I'd still feel it with 2 or 3 layers. I'd target feeling warm, toasty even.
Turns out that was bad for my sleep.
I've been able to transition now. I target being comfortable with clothes, but if anything, just on the cold side of the comfortable range.
Like you @river the right thickness of doona is crucial - in winter that means two doonas (can put them in the one doona cover), or even 3 doonas! On the hottest days it means having a sheet around too.
But having the ability to kick the doona off, then bring it back on, is really important for me, for staying in the "don't get on the toasty side of comfortable thing".I absolutely must wear two pairs of socks still though. That is a deal breaker. 365 days a year - 2 pair of socks. On the leap year, when it's 34 degrees at 10pm, I can maybe get away with wearing one pair of socks. Maybe. Probably need to wear two pairs then even.
The transition required a few other symptom sets to fall into place, e.g. environmental reactivity and sinus congestion reduction.
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In winter, I found it didn’t matter how many doonas I had, it was the room temperature that mattered. I could have three doonas, but if the room itself is freezing and the only extremity I have exposed is my nose, it doesn’t matter, I won’t be able to sleep for this icicle on my face.
Heaters on, all day every day in winter. It was tough, because my house is... very drafty (no insulation at all) but I had to stop worrying about the power bill, because heating is more important.
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@PaulB the new doona I got is actually two doonas you can clip together - one is thinner and one is thicker. I'm using the thinner one right now and in winter I'll try adding the thicker one on. They're from ikea
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@river It's one of those symptoms that has so many variables, it's hard to map. I've found that I am always on 'standby sleep'. As soon as I feel sleepy, no matter what time of day it is, I will grab the opportunity to do so, even if I wake up unrefreshed. The downside is irregular sleep patterns and I am notorious for being up at 2am. I'm glad you have found a way to get yourself to sleep. How long have you been practising this routine and has it been successful each time?
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@crashdummy I am nowhere near as disciplined as I appear to have come across haha. Like you I have to take every opportunity to sleep even if it's a weird time or I haven't brushed my teeth or whatever - cause I so rarely feel sleepy. I've only been practicing the pre-bed rest period for maybe a week intentionally. It's definitely helping but there's also the fact that I stay up until 2am every few days which actually has been helping me get to sleep as well. That makes it harder to tell if my new technique is actually working 'every time'. I'm a night owl by nature and I have a bit of a delayed sleep phase so it's easier for me to fall asleep sometimes if I stay up late.
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Hi @river. I'm a bit slow to this thread but one of the things suggested by my doctor for sleep dysfunction is meltonin. You can't buy it in Australia without a prescription but you are allowed to import it (e.g. if buy directly from the US), either way, worth checking with your doctor first. It seems to help a great deal for me in getting to sleep (which like you is one of my biggest problems).
The other thing I started doing that also seems to help is meditating just before going to bed. I'm not very patient and am terrible at meditating but if you find a good channel that suits you it can help a lot. The one I found that I really like is the youtube channel The Honest Guys (https://www.youtube.com/user/TheHonestGuys), I particularly like their visualisations (there is one running in the forest with wolves, I love it haha)
Anyway, hope those suggestions might help
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@Katt melatonin is actually one of the first things I tried for my sleep, but sadly it did absolutely nothing for me. If I've been pacing really well and not overdoing it (rare!), I do actually get sleepy around the right time of night, so I guess my melatonin production is fine. It'll be different for everyone though.
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Hi again everyone,
I think the sleep discussion is so interesting. It is an issue for so many of us, and there are a range of potential sub-threads, both in terms of challenges, opportunities and approaches to management.
We've already chatted about temperature / doonas.
You good people, @river, @crashdummy and @Katt started chatting about sleep opportunities and melatonin. So I might put some thoughts in there too.
I'm going to talk about an approach that helps me. It is a different approach to one given above - I hope that's ok. I am not doing it to be contrarian
I understand that in different people's different situations different decisions are made, etc.Something I learnt in the first 5 or so years of my 30 year CFS journey was that, for me, not having day sleeps, little or big, was very important. Even if I was sleepy tired in the daytime, the decision I made was to not go with that, to stay awake, get through to night time, and try and go to sleep then.
Whenever I did go to have an extra sleep in the day, further fatigue issues would generally result. Generally a feeling of a build up of lactic acid, with lots of related other symptoms.
This decision making relates to a bigger conversation about diurnal rhythms. I'll save more writing for a possible other post.
Briefly, linking to an item raised above - whether we get it all naturally, or look to have an extra boost, Melatonin - I believe - works with our natural day / night experiences.The approach I follow above, of choosing to generally only sleep at night and not in the day also seeks to work with the natural day / night experience.
regards,
Paul. -
@PaulB it's definitely good to hear different people's approaches! That way it helps whoever reads this to understand their own condition and which ways might be best for them to manage it
I am curious about your comment on lactic acid build up as I hadn't ever really thought about this in relation to sleep. When I think about lactic acid and ME/CFS I generally think gut imbalances and D-lactate producing bacteria and IBS. I did just find an article "Sleep quality and the treatment of intestinal microbiota imbalance in Chronic Fatigue Syndrome: A pilot study" as well as "Open-label pilot for treatment targeting gut dysbiosis in myalgic encephalomyelitis/chronic fatigue syndrome: neuropsychological symptoms and sex comparisons". Both mention some possible improvement in sleep functions with reduced Streptococcus count. Anyway, sorry, I think I'm going down a rabbit hole and maybe getting too off topic but just a thought that I wonder if we should be looking also into our gut in relation to sleep.
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@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.
Pronouns: they/them - ME/CFS since 2017
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@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.
Pronouns: they/them - ME/CFS since 2017
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@river thanks for the info, much appreciated! Sorry I did go off on a complete sidetrack and I apologise for that. Recently I was delving into gut dysbiosis and saw the idea of D-lactate and it made me think (e.g. https://me-pedia.org/wiki/Dysbiosis). But you are right, unrelated here... I will stop side-tracking
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@river I really like that "unfinished cleaning cycle" description - I have no idea how closely it relates to what's going on physiologically (not suggesting it isn't close, just that I have no idea), but I really like the analogy
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@Katt said in Managing sleep dysfunction:
I think I'm going down a rabbit hole and maybe getting too off topic but just a thought that I wonder if we should be looking also into our gut in relation to sleep.
Agreed that the gut is soooooo important for a lot of us - me included.
Is there a gut thread yet?
Any research you find @Katt on sleep and the gut would be great to hear about it! This is the thread for that.
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@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?
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@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.
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@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 brain
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@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?
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@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.
