Do sleep medication or sleep aids support PEM recovery?

[Kitty]

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

I can only answer for myself, but it was part of rolling PEM that I didn't even know I was experiencing.

Partly because PEM wasn't really known about back then, but even when I cottoned onto the idea it took me far too long to make sense of it. The trouble was that it involved acknowledging I was doing too much, and I didn't want to know that.

One of the reasons I didn't realise the extent to which PEM can be an ongoing thing was because the symptoms fluctuated. I felt okay some of the time. I only recognised what not being in PEM felt like when I finished work. It was already a massive life change—I'd worked for decades—so I decided to stop everything except basic daily living activities and low-key social stuff for a year. Then I got it.

Obviously I can't know whether or not it's the same for you. But for me, some of what you describe is the result of over-activity.

 

[Kitty]

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?

There is something of a warning system—my movements start to get a bit clumsy, among other things—but by the time it's started I either don't recognise it, or I can't make myself stop (as ridiculous as it sounds, that is a thing!). It's too late.

The only way I can pace is to organise my weeks and months so they don't contain more than I can manage, and recognise that sometimes it's still going to be too much. Apart from very infrequent medical appointments, I won't organise or commit to anything I can't cancel the day before. Friends don't seem to mind this; I'm now experienced enough at managing it that on the whole I'm as reliable as anyone else.

I don't get long term deterioration even after severe crashes, let alone PEM, but that seems to be unusual. I've got much more cautious after becoming aware how often people seem to end up severely ill after just one of the sort of crash events that I've pushed myself into God knows how many times.

 

[DHagen]

There is something of a warning system—my movements start to get a bit clumsy, among other things—but by the time it's started I either don't recognise it, or I can't make myself stop (as ridiculous as it sounds, that is a thing!). It's too late.

Everything about this stupid condition sounds ridiculous - but I absolutely recognize "I can't make myself stop".

The trouble was that it involved acknowledging I was doing too much, and I didn't want to know that.

I recognize this as well, which is rather terrifying. All the worse for the many, many among us for whom "doing less" means losing a roof over one's head, or, if one is very lucky, becoming a dependent. I know that's not new and everyone here knows it, most better than I, I'm sure. Still hard. Still impossible.

I don't get long term deterioration even after severe crashes, let alone PEM, but that seems to be unusual. I've got much more cautious after becoming aware how often people seem to end up severely ill after just one of the sort of crash events that I've pushed myself into God knows how many times.

That's the kicker, isn't it? Whether what I am experiencing PEM or not, it seems (mostly?) sustainable, but if it is actually pushing me closer to a feeding-tube and never being able to tolerate any stimuli or movement ever again... that's obviously a very different matter.

Tying this, at least in part, back to the original topic, it also makes the insomnia, PEM-driven or otherwise, that much more hellish when the racing thoughts in the early-morning hours aren't "I am going to be so tired because I didn't sleep" but rather "how much damage is this lack of sleep doing and how much closer am I to permanent collapse as a result?"

 

[Kitty]

All the worse for the many, many among us for whom "doing less" means losing a roof over one's head, or, if one is very lucky, becoming a dependent. I know that's not new and everyone here knows it, better than I, am sure. Still hard. Still impossible.

Yes, I live alone so I had to go through all that. I worked for years longer than was good for me because it was impossible to do otherwise. Until I was forced by redundancy, that is. I was lucky even to have that, they could have sacked me for increasingly poor performance due to an additional chronic illness.

It's amazing how necessity turns things around. Suddenly it was something I had to make not-impossible, and eventually I did. It was really scary at times (there was a 12-month period of stress I hope I never have to go through again), but I eventually got the help and housing I needed. At which point, obviously, I realised I could have done it sooner. And I was kidding myself to think it wasn't pretty much inevitable as I aged.

Anyway I'll stop there because I'm taking @MinIreland's thread off topic.

 

[DHagen]

Thanks so much for taking the time, @Kitty

 

[rapidboson]

As mentioned in other threads - medication that actually improves deep sleep, such as gabapentinoids and baclofen help me immensely for sleep. Personally used as needed, e.g. when having PEM.

Other medication used for sleep without increasing deep sleep, such as H1 antagonists/inverse agonists, benzos, z drugs don't help me (with restful sleep). They knock me out but don't improve my sleep.

 

[Holinger]

As mentioned in other threads - medication that actually improves deep sleep, such as gabapentinoids and baclofen help me immensely for sleep. Personally used as needed, e.g. when having
Other medication used for sleep without increasing deep sleep, such as H1 antagonists/inverse agonists, benzos, z drugs don't help me.

Z drug hypnotics are the only drugs that have helped my sleep

 

[MinIreland]

I can only answer for myself, but it was part of rolling PEM that I didn't even know I was experiencing.

Partly because PEM wasn't really known about back then, but even when I cottoned onto the idea it took me far too long to make sense of it. The trouble was that it involved acknowledging I was doing too much, and I didn't want to know that.

One of the reasons I didn't realise the extent to which PEM can be an ongoing thing was because the symptoms fluctuated. I felt okay some of the time. I only recognised what not being in PEM felt like when I finished work. It was already a massive life change—I'd worked for decades—so I decided to stop everything except basic daily living activities and low-key social stuff for a year. Then I got it.

Obviously I can't know whether or not it's the same for you. But for me, some of what you describe is the result of over-activity.

Wow. A lot of things click into place for me here.

When I first called in sick (5 years ago), I was in really bad shape and 'diagnosed' as having a burnout. I stayed home for 2 months, and then slowly went back to work, but have been ill since (still worked full time with hardly any sleep, thick brain fog, severe anxiety and fatigue, and feeling as if my brain was a brick). No one noticed anything, I was still a high performer (how is beyond me).

Then, when I called in sick again, there were about 6 months of insomnia, severe anxiety, brain fog, and fatigue, yet unable to rest/relax. My body started to calm a bit after these 6 months. I have slowly improved over time, not without hickups, but still, some very slow improvement (mostly spending in State 2a).

@Kitty, you wrote "The trouble was that it involved acknowledging I was doing too much, and I didn't want to know that."

This is where I'm at now. Based on your comments, I start to realise that I need to be do even less to stay in State 1. I should avoid 2a as much as possible and try to not move to 2b. The fact that 2a might be PEM already, is a big aha.

Don't worry about 'derailing' the conversation, everyone. I'm learning what needs to be learned, although I definitely don't like the idea of doing even less.

 

[Utsikt]

If all you care about is finding out what a sustainable activity level currently looks like for you, scaling everything way back might be the best option.

In general, I think most pwME/CFS would say that physical activity costs the most, so that’s probably a good place to start.

 

[Kitty]

No one noticed anything, I was still a high performer (how is beyond me).

That made me grin. I remember once crawling out of bed, going in to the office for an important meeting, and hiding in the disabled toilet in a crumpled heap until three minutes before it started.

Next thing I heard myself confidently telling 14 arts managers that I thought they were going at something the wrong way around, cogently explaining why, and hearing several people (mostly more senior than me) agree and say it was a much better way forward. And then challenge the doubters, saying "Yes, but if we adopt Kitty's approach..."

I've no idea how I managed it, but I did things like that for years. But I guess it's no different to someone going through bereavement or divorce, or struggling with addiction, or who's the parent of a new baby. They also hide in the toilet trying to assemble a professional face, or secretly email the budget sheets home because there's no way they're getting the monthly figures out until they can achieve full consciousness.

This is where I'm at now. Based on your comments, I start to realise that I need to be do even less to stay in State 1. I should avoid 2a as much as possible and try to not move to 2b. The fact that 2a might be PEM already, is a big aha.

It took me a while to realise that when people are still trying to function, they've probably forgotten what it feels like not to have some level of PEM.

They might blame themselves for not managing better, not seeing patterns sooner, but if they never get chance to stop for long enough to experience minimal PEM—and then experiment with how much they can do before they start getting clobbered afterwards—how are they supposed to recognise the difference?

 

[MinIreland]

I've no idea how I managed it, but I did things like that for years. But I guess it's no different to someone going through bereavement or divorce, or struggling with addiction, or who's the parent of a new baby. They also hide in the toilet trying to assemble a professional face, or secretly email the budget sheets home because there's no way they're getting the monthly figures out until they can achieve full consciousness

it's crazy what people can still achieve when they are so ill. Until they can't.

 

[Utsikt]

They might blame themselves for not managing better, not seeing patterns sooner, but if they never get chance to stop for long enough to experience minimal PEM—and then experiment with how much they can do before they start getting clobbered afterwards—how are they supposed to recognise the difference?

This 100 %.

Stop while you can, and preserve what you have. Not what you believe you have or what you want to have, but what you actually have according to your actual health.

 

[bobbler]

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.

Indeed. But often the 2a is after a stage of starting to ‘feel it’ but pushing through. When doing something exciting or interesting it can be hard to notice. It’s really obvious when it’s eg needing to get home and you know you are having to pick the lesser of the other evil of being stranded somewhere you can’t get good rest.

But often somewhere before all of this or around it is a stage where you feel strangely great. And that’s where the thru the wall has kicked in.


Whether I finished a work day in 2a or exhausted depended on how busy I had been. It’s like ‘another level’ of being over-threshold. And horrible because when stuck on it’s like the body eating itself because you kniw it’s a state not resting and exerting so causing more PEM like being already drunk but still drinking so just adding to hangover. But it won’t switch off because it’s worse than ‘just’ overdoing it. Which also causes PEM but without that extra

And the PEM would come after eg I’d wake up or rather not be able to wake up eg the next day. Or the day after.

 

[MinIreland]

Indeed. But often the 2a is after a stage of starting to ‘feel it’ but pushing through. When doing something exciting or interesting it can be hard to notice. It’s really obvious when it’s eg needing to get home and you know you are having to pick the lesser of the other evil of being stranded somewhere you can’t get good rest.

But often somewhere before all of this or around it is a stage where you feel strangely great. And that’s where the thru the wall has kicked in.


Whether I finished a work day in 2a or exhausted depended on how busy I had been. It’s like ‘another level’ of being over-threshold. And horrible because when stuck on it’s like the body eating itself because you kniw it’s a state not resting and exerting so causing more PEM like being already drunk but still drinking so just adding to hangover. But it won’t switch off because it’s worse than ‘just’ overdoing it. Which also causes PEM but without that extra

And the PEM would come after eg I’d wake up or rather not be able to wake up eg the next day. Or the day after.

This sounds scarily familiar to me... How can you stop yourself when you're feeling great? Who the hell invented this illness? It seems impossible to manage!

 

[Kitty]

How can you stop yourself when you're feeling great?

Well there's the feeling great, but there's also a drunk-but-what-the-hell stage that @bobbler describes, and a kind of driven stage where you actually can't stop.

You know how centuries ago, people used to think someone had been taken over by the devil? Only explanation that makes sense.

 

[MinIreland]

Well there's the feeling great, but there's also a drunk-but-what-the-hell stage that @bobbler describes, and a kind of driven stage where you actually can't stop.

You know how centuries ago, people used to think someone had been taken over by the devil? Only explanation that makes sense.

I find myself quite annoying when I'm in that state. I feel like a not very funny clown.

 

[bobbler]

I find myself quite annoying when I'm in that state. I feel like a not very funny clown.

Me too

 

[DHagen]

But often somewhere before all of this or around it is a stage where you feel strangely great. And that’s where the thru the wall has kicked in.

This also sounds familiar to me, even in my PEM confusion. I find it is not always feeling "great" or excited or energized (though it may be any or all of these things), but I have identified a specific moment in which I have the thought "I almost don't feel tired any more." Over-doing things cognitively doesn't seem to cause this very often - I skip straight to the deterioration most days - but physical exertion often does.

I am not entirely sure that it is the same thing, but I found a while ago that taking a hot shower will trigger something like this state almost immediately. I can get 2-3 minutes of feeling "normal" - (mostly) clear-headed, no desire for sleep, no heavy limbs when standing under scalding hot water and breathing in the steam, but then everything comes roaring back in an instant and I get hit with the absolutely necessity of lying down NOW. I've stopped doing that, but those 2-3 minutes are so heavenly, the temptation is always lurking at the back of my mind, like the siren call of a cigarette or maybe just one drink following years of sobriety....

 

[Kitty]

But often somewhere before all of this or around it is a stage where you feel strangely great. And that’s where the thru the wall has kicked in.

I've always thought this needs explaining. It feels like a warm-up or second wind effect, where once you've broken through the wall and built up some momentum, you can keep going.

The really strange thing is that my pronounced limp partly disappears. My gait's closer to normal; I'm no longer walking almost straight-legged and using my hips to swing my legs around because it's painful to raise my knees to lift up my feet.

I have the thought "I almost don't feel tired any more."

Once I've established the momentum I don't feel fatigued. I still have OI, so if what I'm doing involves standing at the sink or the hob I do keep having to sit down, but not because I'm tired. Eventually I'll become extremely tired, but it feels more like the tiredness healthy people get when they've been on their feet all day than ME/CFS-tired.

But by that time I'm being driven by the , so I can't stop anyway.