Dysautonomia and other symptoms
I just woke up at midday after a much needed and appreciated 11 hour sleep, feeling relatively good, and felt inspired to start a thread on managing one of the major and most frustrating symptoms of this illness: sleep dysfunction.
Sleep dysfunction is caused by the illness and is an important part of the diagnostic criteria for CFS. For many of us, traditional sleep remedies and sleep hygiene have no effect because the underlying cause is pathological. This has certainly been my experience.
I have terrible, terrible insomnia a lot of the time, especially when I'm in "rolling"/long term PEM. Sometimes it's caused by symptoms themselves e. g. severe headache or nausea keeping me awake, but more often my body is simply incapable of entering a sleep state even if I feel ok.
I recently discovered that in order to sleep well I need to be completely horizontal and not do anything requiring cognitive effort for at least 5 hours before I go to bed. At the moment this effectively means I set an alarm on my phone to make sure I'm in a resting state by 7:30pm, and then I do nothing but lie there (maybe listen to some music or podcasts) until it's bed time. It's important that I keep my heart rate as low as possible during that 5 hours of it won't work. It's incredibly boring but wow the sleep is soooo worth it!
That sounds like a good routine you've got there River and excellent work investigating/experimenting and discovering it - and much credit that you've got the discipline to follow it through as well
My sleep's not great, but I somewhat unusually have no trouble getting to sleep - which is good, because sleeping for more than an hour or two at a stretch is unusual. Background discomfort seems to have a significant impact on the quality of my sleep, such that I sleep better earlier in the night, and worse later (with bonus awake patches between three and five or so if there's a bug in the mix that's triggered enough of an immune response).
Experiments with panadol osteo and panadeine have yielded benefits (both using normal dosages and with doctor's supervision, and panadeine on prescription). However, one of my many experiments early last year with another medication caused something to go out of whack and now I can only take either about once every couple of weeks (any more and it gives me nausea) - and in any event, both the panadol osteo and panadeine start to have diminishing effects if taken too often. But I do get to have a better nights' sleep once a fortnight or so, which happily happens to be tonight - woo! I usually take panadol osteo at about three in the morning, so it sees me through the end of the night where the discomfort usually wakes me earlier than I'd prefer.
thanks for your post. Very interesting.
- I've never heard of PEM before.
From the Internet "protein-energy malnutrition (PEM) include the following: ... Behavioral changes - Irritability, apathy, decreased social responsiveness, anxiety, and attention deficits."
Ooh, that rings a bit true for me too.
I will have a good think about that, especially when I may be in such a symptom set phase. Might it be PEM?
Same here, sleep is a major ongoing issue of my ME/CFS.
One thing I've discovered in the last couple of years is that body temperature is important for me for potentially getting to sleep. Too hot, and it just won't happen. Similar with too cold - and not just sleep issues on that end; heightened chance of immune issues there.
Similar to @Daffy_Dave I use supplements to help with sleep.
With the support of medical professionals, I have found drowsiness-inducing pills that seem to help me, ones that are sustainable for me to take every night. 20 years of investigation in that journey.
All the best,
- I've never heard of PEM before.
@PaulB I've never heard of the PEM you discovered! PEM stands for post-exertional malaise and it's the key defining feature of CFS. I am really sorry and a little shocked you have never heard of it before - it's such an important concept to understand in managing this illness!
@river Haha - acronyms got the better of us there.
Have certainly heard of post-exertional malaise.
@PaulB haha I should have spelled it out! I'm glad you mentioned the other thing actually because I am most definitely not getting enough protein (and nutrition in general) and I daresay it could be making things worse.
Also can relate to your temperature issues at night. I get temperature fluctuations a lot and often take off and put back on all my layers of clothes throughout the night. Having the right thickness of quilt helps a lot - the one I used to have was too thin and in winter I couldn't sleep from being so cold. Got a thicker one a few months ago and it took some adjusting to but my temp is so much better regulated now.
@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.
RatsAreFluffy last edited by
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.
@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
@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?
@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.
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
@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.
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.
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.
@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.
@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.
river last edited by river
@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.
@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
@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
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.