Do sleep medication or sleep aids support PEM recovery?

[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?

 

[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.