Do sleep medication or sleep aids support PEM recovery?

[MinIreland]

I am currently going through a pretty bad PEM episode (it's actually the first time I realise I have PEM; I used to call it 'a setback').

One of the symptoms is insomnia/sleep disturbances (trouble falling asleep and staying asleep). It makes sense to me that better quality sleep would support PEM recovery.

My personal experience with sleep medication (zopiclone) and PEM is really bad. I start to feel way worse when I use zopiclone a couple of days in a row. I have now taken quetiapine (12.5 mg) or melatonine (2 mg) occasionally. They help me sleep better, but I'm very cautious using them, because I don't want to make things worse (eg would masking my sleep problems prevent me from tracking if my sleep is getting better - cause that would likely be a sign that I'm starting to feel better). On the other hand, not sleeping sucks big time as well.

I did a quick Google Scholar search but couldn't find any research. Any knowledge or experience in this area would be helpful. Thanks!

 

[Utsikt]

I don’t think we have any good data on sleep medications for ME/CFS in general or for PEM recovery specifically.

Personally, I’m using whatever sleep medications that lets me sleep a bit more. I’m severe and stopped sleeping for almost a month for unknown reasons, and it completely wrecked me.

I’m not too worried about masking symptoms because there are so many of them so I’ll be able to judge most things from the ones I can’t mask. And it feels like my sleep is still better when I don’t have PEM, but the baseline is higher due to the meds.

 

[MinIreland]

I don’t think we have any good data on sleep medications for ME/CFS in general or for PEM recovery specifically.

Personally, I’m using whatever sleep medications that lets me sleep a bit more. I’m severe and stopped sleeping for almost a month for unknown reasons, and it completely wrecked me.

I’m not too worried about masking symptoms because there are so many of them so I’ll be able to judge most things from the ones I can’t mask. And it feels like my sleep is still better when I don’t have PEM, but the baseline is higher due to the meds.

Not sleeping is the absolute worst. I'm so sorry you stopped sleeping completely, that must be absolutely awful. I usually fall asleep after 3 hours or so, then am awake, then fall asleep around 7 in r morning, when all my family members get out of bed, and they I wake up around 10 am.

I'll try using the quetiapine for a while. It at least helps me to fall asleep!

You're probably right that the other symptoms will continue to show me the petty state I'm in.

Thanks so much. I feel so unsure about what to do sometimes, and I've been living with this for almost 3 years now.

 

[Kitty]

I went through this too for many years, especially before I learned about PEM. I tried various meds.

Long story short, I realised that for me at least, the drugs made no difference at all. What they gave me wasn't sleep, it was just not-awakeness. I didn't feel any worse, or have worse function, if I didn't take them; also, not taking them meant I didn't get the side effects.

The only effective treatment for it was not to get wired-but-tired PEM in the first place. If I do get it (it's sometimes unavoidable of course), the best thing is just sitting it out.

If I can't sleep I get up and do something like reading using a neck-light, or listening to a quiet podcast—not staying in bed seems to help. Sometimes I sit under a warm shower for 10 minutes then wrap myself up in a big bathrobe and sit down until I'm dry. Anything to stop my brain going round and round like a squirrel in a cage.

Sometimes I don't sleep at all, and that can go on for more than one night. I've learned not to worry about it, eventually the PEM will pass if I pace well enough.

 

[Yann04]

stop my brain going round and round like a squirrel in a cage.

It’s such an uncomfortable feeling. Thank you for sharing your experience.

 

[MinIreland]

I went through this too for many years, especially before I learned about PEM. I tried various meds.

Long story short, I realised that for me at least, the drugs made no difference at all. What they gave me wasn't sleep, it was just not-awakeness. I didn't feel any worse, or have worse function, if I didn't take them; also, not taking them meant I didn't get the side effects.

The only effective treatment for it was not to get wired-but-tired PEM in the first place. If I do get it (it's sometimes unavoidable of course), the best thing is just sitting it out.

If I can't sleep I get up and do something like reading using a neck-light, or listening to a quiet podcast—not staying in bed seems to help. Sometimes I sit under a warm shower for 10 minutes then wrap myself up in a big bathrobe and sit down until I'm dry. Anything to stop my brain going round and round like a squirrel in a cage.

Sometimes I don't sleep at all, and that can go on for more than one night. I've learned not to worry about it, eventually the PEM will pass if I pace well enough.

Thank you, @Kitty, for sharing your experience. I am usually too tired to get up if I can't sleep and I don't think I would be able to read. I recognise the buzzing brain. I used to have severe mental anxiety (with which I mean worrying a lot, what if, ruminating, having made up difficult conversations with people, etc), but I think a 'PEM brain' is different, at least for me. It's like a randomly wild popping up of memories, thoughts, ideas, etc, and it just doesn't stop. With it comes the wired body, as if my blood is racing through my veins and it's buzzing. It's so uncomfortable.

I can at least see a pattern now of people saying that you can really do nothing to speed up PEM, except for letting it run its course. Strangely enough, maybe, I find that comforting, because now I feel the added stress of looking for solutions, and wondering what I'm doing wrong.

 

[Trish]

I sleep badly quite often, particularly on the first night of an episode of PEM. I try to be relaxed about it, put on an audiobook I've heard before and enjoyed, and if it gets too bad or I get too restless, I put the light on and play a few rounds of something very boring and repetitive like mahjong on my phone. I don't use sleeping pills because I tend to react badly to drugs.

A whole night without sleep is horrible, and for me so far, fortunately rare. If I did have that problem a lot, I would probably try sleeping pills.

 

[MinIreland]

I sleep badly quite often, particularly on the first night of an episode of PEM. I try to be relaxed about it, put on an audiobook I've heard before and enjoyed, and if it gets too bad or I get too restless, I put the light on and play a few rounds of something very boring and repetitive like mahjong on my phone. I don't use sleeping pills because I tend to react badly to drugs.

A whole night without sleep is horrible, and for me so far, fortunately rare. If I did have that problem a lot, I would probably try sleeping pills.

Thanks so much, @Trish.

I had an endocrinologist who prescribed a 2-week course of Zopiclone to help with sleep. After 3 days, I felt so awful that I had to stop (and then I didn't sleep at all for a couple of nights). I 'treat' myself to a sleeping pill very rarely (only when I feel very desperate). Sleeping aids (like quetiapine or melatonine) work a bit better for me (perhaps because the sleep you'll get with them is more 'natural'?). But I still have withdrawal symptoms when I stop using them (= sleepless nights).

The audiobook is a good idea. I sometimes do yoga Nidra, but I feel that I'm too focused on "I want to sleeeep" then.

 

[Trish]

The audiobook is a good idea. I sometimes do yoga Nidra, but I feel that I'm too focused on "I want to sleeeep" then.

I have tried yoga nidra and various relaxation visualisation audio over the years. I seem to be one of those contrary people who fight against someone telling me to relax. They were sometimes quite pleasant if I was already quite relaxed, but never when I'm stressed or insomniac. They just make me cross!

I'm much more likely to relax and fall asleep to Stephen Fry reading me a Sherlock Holmes murder mystery!

 

[Kitty]

I try to be relaxed about it, put on an audiobook I've heard before and enjoyed

That's a really good point, actually. I sometimes listen to things I know so well I could practically recite them myself.

Someone asked why I did that—it's the same with music, I listen to things I've already heard a million times—and actually the point is that you don't have to listen. You don't have to pay any attention, it's just something to engage your brain in a really superficial way. And because it's so familiar, it won't keep you awake if you do become sleepy.

Music's a bit different, I guess; I use that more as an autism support thing, though it is useful for ME/CFS. If I'm in a distressingly noisy environment, I put on really loud music so I can't hear it. If it's really bad it's a Paranoid situation! Thing is, I've been familiar with that track since it came out in 1970, I know to the millisecond what's coming next, so in a weird way I don't really hear it. It's noise I can control and don't need to listen to, blocking out noise that's driving me into meltdown because I can't control it and I can't ignore it.

 

[Utsikt]

This is so much easier said than done, but I have a much easier time falling asleep if I trust that I will fall asleep. The month that I barely slept anything was a nightmare, especially because it ruined my trust in my ability to fall asleep.

If I get worried about not falling asleep now, I just remind myself that I’ve fallen asleep every night the last 8 months so there is no reason to think it should change tonight. That will obviously only work as long as I actually continue falling asleep..

Believing that I will fall asleep probably doesn’t affect if I fall asleep, but it puts my mind at ease and helps with the worry.

 

[DHagen]

I used to have severe mental anxiety (with which I mean worrying a lot, what if, ruminating, having made up difficult conversations with people, etc), but I think a 'PEM brain' is different, at least for me. It's like a randomly wild popping up of memories, thoughts, ideas, etc, and it just doesn't stop. With it comes the wired body, as if my blood is racing through my veins and it's buzzing. It's so uncomfortable.

Very interesting - I am terrible at identifying when I am in PEM (to say nothing of what causes PEM) and am pretty much terrified that I am in PEM all the time and just not aware (and consequently making myself worse). I experience both what you describe as "severe mental anxiety" and as "PEM brain" on a regular basis, but I am not sure I can distinguish between them... I will try to pay more attention. If there is a distinction for me, it may well be that the "PEM brain" triggers the anxiety, but who knows.

 

[DHagen]

Long story short, I realised that for me at least, the drugs made no difference at all. What they gave me wasn't sleep, it was just not-awakeness.

My experience has been that they often shut down the body, at least in part, but leave the wired brain flailing away, panicking all the more as it registers the body slowing. It is awful.

That said, if sleep meds do work for you, I would recommend giving them a try. I would think it unlikely that they would hurt your recovery (though do be wary of this, anything seems possible with this condition, as long as it's bad), and less time conscious is less time experiencing PEM.

 

[DHagen]

Referencing a now deleted post about a symptom of feeling 'wired'

Wow... as someone diagnosed years ago - long before ME - with GAD and OCD (and more than one professional as told me they suspect ADHD as well), this has me second-guessing a LOT.

 

[MinIreland]

Very interesting - I am terrible at identifying when I am in PEM (to say nothing of what causes PEM) and am pretty much terrified that I am in PEM all the time and just not aware (and consequently making myself worse). I experience both what you describe as "severe mental anxiety" and as "PEM brain" on a regular basis, but I am not sure I can distinguish between them... I will try to pay more attention. If there is a distinction for me, it may well be that the "PEM brain" triggers the anxiety, but who knows.

My current 'hypothesis' for my own situation is that the process goes as follows (not necessarily sequential, I usually jump back and forth between 1 and 2, before I deteriorate and fall into 3 (what I used to call 'setback', and what I now call PEM).

1. Baseline functioning (for me this means that I potter about during the day, I can go to the gym 2-3 times a week (if I adapt my effort to the level of slightly fluctuating fatigue), and I have 3 other main activities during the week, 1 art class and 2 times volunteering at a charity shop).

2a. When I do too much, my physical anxiety increases (I feel nervous, chased) first, and when I keep pushing, my head and eyes start to bother me (pressure on forehead, eyes, face), and my brain fog increases. When I notice this, and take a step back, I recover back to 1 quickly, BUT when I keep going ...
2b. I start to get 'hyper' and wired. I cannot yet distinguish well between 1 and 2b. So, if I think I'm back at 1, but I'm actually in 2b, then I'm pushing myself over the edge and end up in...
3. PEM (In sum, feeling weak, profoundly exhausted and sleepy - can't keep my eyes open -, restless, uncomfortable, extreme brain fog and pressure on head and around and behind eyes, and my muscles 'burn' quickly).

So, I hope I can learn to recognise 2b.

I very much recognise what you're saying about being afraid you're in constant PEM. I think I was in the first 18 months or so. I think it's because you can't grasp how little you can actually do, so you keep overdoing it, because you feel that you can't do any less. At least, that's how it felt for me (I remember often thinking: "This is ridiculous! I should be to do X!" (eg, go for an hour walk or meet up with a friend for an hour). Until I accepted that I really couldn't and only then I started resting more and improved slightly.

And yes, my PEM brain definitely triggers anxiety!

 

[Kitty]

2a. When I do too much, my physical anxiety increases (I feel nervous, chased) first, and when I keep pushing, my head and eyes start to bother me (pressure on forehead, eyes, face), and my brain fog increases. When I notice this, and take a step back, I recover back to 1 quickly, BUT when I keep going ...
2b. I start to get 'hyper' and wired. I cannot yet distinguish well between 1 and 2b. So, if I think I'm back at 1, but I'm actually in 2b, then I'm pushing myself over the edge and end up in...
3. PEM (In sum, feeling weak, profoundly exhausted and sleepy - can't keep my eyes open -, restless, uncomfortable, extreme brain fog and pressure on head and around and behind eyes, and my muscles 'burn' quickly).

2a and 2b sound like PEM to me.

I recognise the "chased" stage. I realised I needed to make sure I didn't get to that point whenever possible—bearing in mind that it probably wasn't today's activity that triggered it, even though it did make it worse.

 

[MinIreland]

2a and 2b sound like PEM to me.

I recognise the "chased" stage. I realised I needed to make sure I didn't get to that point whenever possible—bearing in mind that it probably wasn't today's activity that triggered it, even though it did make it worse.

Would you say that 2a is just a shorter PEM than 2b?

 

[DHagen]

My current 'hypothesis' for my own situation is that the process goes as follows (not necessarily sequential, I usually jump back and forth between 1 and 2, before I deteriorate and fall into 3 (what I used to call 'setback', and what I now call PEM).

1. Baseline functioning (for me this means that I potter about during the day, I can go to the gym 2-3 times a week (if I adapt my effort to the level of slightly fluctuating fatigue), and I have 3 other main activities during the week, 1 art class and 2 times volunteering at a charity shop).

2a. When I do too much, my physical anxiety increases (I feel nervous, chased) first, and when I keep pushing, my head and eyes start to bother me (pressure on forehead, eyes, face), and my brain fog increases. When I notice this, and take a step back, I recover back to 1 quickly, BUT when I keep going ...
2b. I start to get 'hyper' and wired. I cannot yet distinguish well between 1 and 2b. So, if I think I'm back at 1, but I'm actually in 2b, then I'm pushing myself over the edge and end up in...
3. PEM (In sum, feeling weak, profoundly exhausted and sleepy - can't keep my eyes open -, restless, uncomfortable, extreme brain fog and pressure on head and around and behind eyes, and my muscles 'burn' quickly).

So, I hope I can learn to recognise 2b.

I very much recognise what you're saying about being afraid you're in constant PEM. I think I was in the first 18 months or so. I think it's because you can't grasp how little you can actually do, so you keep overdoing it, because you feel that you can't do any less. At least, that's how it felt for me (I remember often thinking: "This is ridiculous! I should be to do X!" (eg, go for an hour walk or meet up with a friend for an hour). Until I accepted that I really couldn't and only then I started resting more and improved slightly.

And yes, my PEM brain definitely triggers anxiety!

Thank you so much for this. I'll try to stop de-railing the thread after this, but suffice to say, your PEM sounds a lot like what I have been identifying as my baseline, or, at least it describes a fair portion of the way I experience most days. The language I have encountered surrounding PEM seems to treat baseline/PEM as a sort of binary, so I had been identifying PEM as the state in which I spend multiple days plagued by nausea, a bad headache, vertigo, burning pain, and being barely able to stand even if I were inclined to do so. The brain fog, periods of "wired" body and mind, pressure in the head and so forth all seem to ebb and flow throughout the day. Doing my best to experiment over the first 6-7 months of this year seemed to suggest that weeks of staying in bed (essentially living as if bed-bound) did little to improve this and that being more active (mostly housebound) did not significantly worsen it (or does it? I really don't know and trying to figure this out is just breaking me), so I thought... ok, that's baseline. But, of course it's actually just me making myself worse.

I am very grateful to you for describing your experience, particularly when stuck in a bad PEM episode (I don't think I could manage the same); it really is so helpful. I dearly hope that you are able to get some at least half-decent sleep soon and that your recovery comes sooner rather than later.

 

[boolybooly]

This is why imho PWME have a care need. The cognitive impact of abnormal fatigue makes it difficult for one to judge and manage one's own exertion and relapse state, so in theory one needs to be supervised and managed by another party.

When I get PEM, I have been having some today I think but I digress, I can get to a point where I feel beside myself. Just unable to calm my mind. So I take D-ribose and L-carnitine tartrate and just try to do as little as possible for at least three days. It can be hell for a while but the only thing which really fixes it is rest. I also use hop tea and magnesium as they help a tiny little bit but not a lot. Even when rested, good sleep is a lottery.

 

[DHagen]

2a and 2b sound like PEM to me.

I recognise the "chased" stage. I realised I needed to make sure I didn't get to that point whenever possible—bearing in mind that it probably wasn't today's activity that triggered it, even though it did make it worse.

May I ask whether you recognize any "warning" between "baseline" and "PEM", or do you experience any deterioration from baseline as PEM? Is there any fluctuation?