Do You Sleep Better When...

Good day everyone.

- Generally - sleep is poor, disturbed and non-refreshing for our ME/CSF folk, yes?

Is it the experience of the ME/CSF community folk that with a sleeping aid (sleep meds) do people 'feel' they had a bit of a better sleep and have a bit of a 'better' day?

Thank you

 

Hi Aldebaran's Star welcome to S4

It depends what you mean by a 'better' day?

If you mean whether more sleep predictably improves ME/CFS symptoms? then no not necessarily.

Disrupted sleep is part of the symptom profile, but disrupted sleep is not the cause of the symptom profile.

So while lack of sleep certainly doesnt help the overall picture, its just not that simple...
I can have a 'better' day after no sleep at all, and a terrible one after a healthy amount (ie 7-9hrs).

For many of us we feel ill, rather than tired or sleepy, so it doesnt necassarily hold that a better night (whether pharmaceutically or naturally achieved) will improve things.

It might help us to give detailed answers if you were able to expand on your question a little... for example your reasons for asking? What your experience of the ME/CFS field is, whether you're patient/carer/researcher/clinician etc.

Edited to add: just to clarify as youre a new member & may not be familiar with things around here... I not suggesting you need to share more than you're comfortable with, you can say as much or as little as you like, i was just meaning that I'd find it easier to answer in more detail if I had more detail about the context of the question

 

I suspect like everything with ME there is a lot of variability.

Having a very disrupted night with little or no sleep can leave me exhausted and needing to rest, but then I can also have a ‘good’ night’s of seven or eight hours undisturbed sleep and wake up feeling terrible needing several hours rest lying flat before I can attempt to do anything.

Having a ‘good’ day is likely to be preceded by a good night’s sleep, but a good night’s sleep is just as likely to be followed by a bad day.

(Note - I have a perhaps irrational aversion to ‘unnecessary’ medication and haven’t tried any sleeping tablets.)

 

Good evening everyone, thank you all for your detailed and comprehensive replies.
@JemPD, @Peter Trewhitt, @oldtimer
(I hope I did that right)

To a doctor, what you all shared looks like complete gibberish, but I completely understand what you described, it sounds like what my child says. I mean absolutely no offense. What you all took the time to share has reinforced her experience which gives some vindication, Thank you.

I am a mum with a daughter who seems to fit the Pediatric Primer criteria for ME/CFS.
If someone were to ask me to describe her symptoms, they all fit into that terrible basket. The sleeping pills help to knock her out. She generally feels like they help her plow through the day better. Without medication, she doesn’t sleep well at all.

Because she feels ‘better’ after being knocked out as opposed to not sleeping at all for days on end, the doctor says she doesn’t fit the criteria for ME/CFS. It doesn’t really matter, it’s just how the doc pounced on that that made us feel invalidated. Thank you for listening and sharing.

Kind regards

 

For a long time my sleep wasn’t too bad in terms of length except during periods of PEM/crashes. And I could sleep or even have a nap and feel ‘better for it’ but not ‘better’ if you see what I mean? Over recent years things fell apart after a particularly big trigger and I used and had very mixed experiences with sleeping meds including some rebounds the following day.

Like a lot with ME it is all very confusing and different experiences vary between individuals and things seem different at different severities too.

I’m probably just repeating what others have said but hope it helps a little. And I’m sorry about your experience with the doctor, it is not uncommon for them to not really understand and try to stick to a checklist, even if they’re well meaning.

 

that's the opposite to me

The more exhausted I am the worse my sleep is, PEM causes insomnia for me. Because it causes the shift into 'wired but tired'. Which I have discussed at length with many PwME over the yrs so I know its common.

So sorry to hear you had such an experience with your doctor, and that your child is suffering.

I think it only sounds like gibberish to some doctors. Others would recognise all these issues as being part of ME.
As far as I'm aware 'sleep disturbance' covers all types of disturbance, its not just one thing or 1 pattern. there is so much variability.

PEM is the hallmark of ME, not a particular type of sleep disturbance

 

Welcome, @Aldebaran's Star.

Me too. I sleep better when pacing well, and best of all if I get a virus or have a vaccination.

But being unable to get more than a couple of hours' sleep because of being wired-but-tired doesn't always mean I feel the worse the day after.

I feel rough when I first wake, but after an hour or so I'm okay. Sometimes I even feel better than usual, it's almost as if I've managed to skip the dysfunctional state that sleeping causes. But from reading posts here, not everyone experiences feeling okay or even a bit better after missing sleep.

Feeling okay or better doesn't last much beyond the first day, of course. I might not sleep well the next night either, but I do need the sleep.

Not really, sleep meds seem to produce a kind of fake sleep. It's lovely not being awake all night, but it doesn't offer the benefits of proper sleep. It took me a while to realise this, though.

[Edited for clarity]

 

I did get restorative sleep when I took low dose trazadone years ago based on a sleep study I had done at the hospital lab. Insomnia has never been a big issue for me since getting ME but I do have to pace so that I don't get wired-up before bedtime or else my brain is unable to shut-off.

But taking meds for insomnia might be a 'fake sleep' for most pwME/CFS. There might be different things going on in the brain.

 

I take something to help sleep every night, and I rotate it so that I don't take the same thing more than 3 days in a row.

I take mainly over-the-counter antihistamines which have sleep-inducing properties, thus diphenhydramine, chlorphenamine and cetirizine, and promethazine on Saturdays. But I still have nights when I hardly sleep at all, either due to gut problems or probably due to PEM.

Whether the drugs help probably depends on whether I have exerted myself too much or have gut problems (perhaps due to eating too much - I'm currently in a phase of needing to eat a lot to keep my weight up).

 

I take 25mg of quetiapine which acts on histamine receptors at that low dose (rather than dopamine receptors, as it does at higher doses, prescribed for psychosis). The anti histamine effect doesn’t wear off after a few weeks like over the counter anti histamines.

It helps me fall asleep, I have trouble falling asleep and always have. I have also always had trouble waking up, and I may have a delayed phase. Trouble waking and waking feeling unrefreshed are not the same. Since my MECFS diagnosis I have had unrefreshing sleep, before starting Quetiapine or any other medication for sleep, even when I have slept well.

If I am in PEM, I am more likely to have fragmented sleep, and I feel less refreshed.

At any time, a good night’s sleep is more likely to be followed by a better day, but there are enough exceptions for me to question whether the good night causes the better day.

In a sleep disorder called Periodic Limb Movement Disorder, the more tired you are, the worse you sleep. It is thought to be caused by a hyper vigilant state*, and thought that being tired causes that hyper vigilant state, but that is just theory. I am diagnosed with this but I only just made it into the category (by a couple of points) and the sleep study was done when I was taking a medication that can sometimes make it worse and my iron was low which is known to make it worse, so I take it with a pinch of salt (and an iron supplement!).

*not as in anxiety - something in a specific part of the brain

 

I haven't noticed any correlation between my sleep duration or quality and my ME symptom severities.

As for "unrefreshing sleep", I don't think that symptom actually has anything to do with sleep duration or quality; it's a symptom that just feels like a lack of proper sleep.

 

I agree

 

I take Trazodone for sleep and I don't feel any better for it the next morning. I get a good night's sleep, however, the unrefreshed feeling is still there and I am constantly "exhausted" throughout the day.

 

Thank you, everyone for taking the time to share and reply. It’s overwhelmingly warm to experience your responses.

@hotblack I do know exactly what you mean. I found that the doc was biased, likely feels that I’m one of ‘those mothers’ and was eager to prove us wrong.

@JemPD thank you. I haven’t yet met a doctor who can sit still after you reach item 5 or 6 on your list of problems. This new doctor was supposed to be interested in ME/CSF but I guarantee I know and have read far more studies than she has.
She ignored the PEM as being the cardinal symptom and according to the pediatric primer, un refreshing sleep is not a requirement for diagnosis. It is either sleep or cognitive, one of the two need to be present.

@Kitty thank you for the warm welcome
What you described about the fake sleep is so profound- wow.

@Mij thank you

@MeSci that’s actually a great idea, taking different meds.

@Haveyoutriedyoga quetiapine has been good but the effects last well into the day which is not really good at the moment.

@Creekside yes, bang on. That’s a great description thank you.

@tigerlea exactly how my daughter describes it. Thank you

Thank you all. This is extraordinary, you are all extraordinary.

 

The extended release did that to me, I believe. I don’t think the smaller dose of instant release does, but it would be hard to know without slowly coming off of it altogether and not changing anything else at all.

 

ugh, how awful! I'm sorry you're having to go through this. It's so hideously typical. It's horrible knowing so much more than your doctor, I feel for you, it's bad enough being the person with ME but it must be incredibly hard being a parent in these circumstances. Trying to walk the tightrope between being informed enough to help your child while avoiding appearing to be too informed which threatens their ego.
Ugh.

Must be so tough as a mother watching your daughter suffer too.

I'm sorry you need to be here, but I'm glad you are here.

You likely know this already, but just in case you're not, I believe the Thymes Trust are a good source of support for children/young people with ME?

Loads of people here much more informed re paediatric ME/CFS, but wanted to mention them just in case

 

Thank you, really.
You are so correct in everything you said. I did not hear about that place, thank you for your suggestion, I’ll check it out right away. I am just so raw that I have a hard time being patient and none for pleasantries.

 

I
totally get that.

 

i get that. Sorry i spelled it wrong its Tymes Trust not Thymes

 

Okay. Thank you thank you