Does your ME cause problems with falling asleep at night at a normal time? (Without sleep meds)

[leokitten]

A note for those who use sleep medication to help combat ME sleep issues - this might be more difficult to answer since the body becomes somewhat dependent on medication when taken chronically. If you could try to answer based on your time with ME before you ever took sleep meds or, if that is not possible, try your best to guesstimate how sleep-related symptoms would be now if you had never taken medication.

 

[NelliePledge]

Good poll topic @leokitten

Thinking back to a few years ago when I wasn’t aware I had gradual onset ME I’d say it was no general problem but I was definitely starting to get some tired but wired episodes.

Since I got diagnosed after becoming more towards moderate on mild/moderate end of ME spectrum my sleep has got more and more delayed pretty much all the time but a lot worse when PEM

 

[Ravn]

Overexertion always causes trouble falling asleep.
When not overexerted I cycle through periods of weeks to months when I don't have major troubles, and periods when I do.
Have never worked out why.

 

[Little Bluestem]

I have to be the contrarian. My ME causes problems with sleep that are less after exertion. Exhaustion overrides it.

 

[ahimsa]

Overexertion always causes trouble falling asleep.

Same for me. Overexertion always leads to worse sleep. Resting for a few days makes my sleep better (not great, but better).

But I didn't vote because the poll is about falling asleep. I never have trouble falling asleep at night.

[ Well, almost never. Very rarely something will keep me up but the last time that happened was more than 2 years ago. ]

My problem is staying asleep.

I wake up many times during the night for no apparent reason. I don't wake up because I'm hot/cold, or having a nightmare, or anything like that. I'm just awake.

And I never lie awake worrying (that's something my husband often does). I'm always able to go back to sleep very quickly (less than 5 minutes).

On a good night, I only wake up 4-5 times. On a bad night I wake up 12-14 times. That means I'm sleeping in short bursts that range from 20-30 minutes. And for all I know I also wake up more often and I'm just not conscious of waking up. These are just the times when I know I'm awake.

Some years ago I did a home sleep test to check for apnea. I did not have any apnea. It's not just that I was below some threshold number of apnea events per hour. I had zero apnea events. And my blood oxygen (measured by a thing attached to my finger, forgot the name) was also fine (98%).

I never did a full sleep study because the doctor (sleep specialist) was pretty much fixated on the apnea thing. She knew nothing about autonomic issues and I think these are related to my sleep problems (I could be wrong). Anyway, I didn't have much faith in her ability to help me. So I gave up.

 

[Subtropical Island]

I started out having very little sleep at all (2-3hrs per 24hrs - not exaggerating - I actually thought I got more til I did the numbers).

Lots of stuff between then and now.

Now I’m pretty stable, on a good level compared to how bad it has been. And sleep-wise so good that I wondered for a while if I maybe can’t have ME/CFS if I no longer have sleep problems.


I can’t say this is a cardinal symptom of ME or anything but it certainly is a very distinctive symptom of my illness:

Now, when I exert past that day’s envelope (or few days cumulative envelope), I have trouble sleeping - both getting to sleep and staying asleep. And it gets worse the more into PEM I get.

It’s hugely distinctive from my healthy response: that more activity, exercise, etc improves sleep.

I can now rest my way into being able to sleep. I can even nap my way into more and better sleep.

It’s hugely counterintuitive. But replicated on myself ad nauseum.

 

[Subtropical Island]

Sorry, my point is:

When I was in my first year or two, and had not found how tiny my envelope had to be, I would have picked option 2.

Now, with my pacing under control (except when the envelope randomly changes on me or I have no control of life events), I say option 3.

 

[NelliePledge]

im having various jobs done since moving in November. Today it was another workmen’s hours getting up time. I got up at 7.30 having had 5 hours sleep. Even with Melatonin I can’t usually go to sleep until 1/2 am.
my normal 24 hours is sleep around 2 wake up 9 take paracetamol then wait until they kick in and I perk up a bit to get up 10.30/11. On this pattern I don’t need to nap. I then go to bed around midnight

If I have to get up early I don’t get to sleep early. I can go to bed early but it doesn’t make any difference to getting off to sleep. So I’m stuck with getting 3 hours less sleep.

today I had to go to bed and slept for an hour this afternoon as I felt so sleepy. I felt rubbish when I woke up just like I do in the morning. The afternoon and evening are usually reasonably ok now I’m feeling rubbish. So all this patronising sleep advice to go to sleep and get up at “normal” times we get really is unhelpful. I will be sticking with listening to my own body and doing what works best to get the most out of my day.

eta. Same thing again this week forced early start for whatever reason worsens my sleep and symptoms

 

[rvallee]

Unfortunately, I cannot answer this as falling asleep has been a huge problem all my life. From about the age of 7 to about 30 (I got sick at 26), I would estimate that on average it took 2-3h to fall asleep without aid. Not exaggerating. It wasn't fun. I did not experience significant natural drowsiness until around the age of 32 or something like that. Once I fall asleep I have normal sleep, rarely wake up unless there's noise or something like that.

Then for some reason a few years ago, for a period of about 2 months, I could barely keep myself awake at night. It was heavy drowsiness, like how you see in cats that just can't keep their eyes open. That was seriously weird.

Then it got back to my normal, though kinda improved to maybe 1-2h. I did have a few other weird experiences but generally falling asleep has always been a problem. I do seem to fall asleep easier when symptoms are more severe, but it's so hard to tell.

Cannabis works pretty well on that. Not perfect but it doesn't have the next day dreadful feeling that most sleep aids leave.

 

[Creekside]

I voted 'yes, after exertion', but I'm not entirely convinced that it's due to ME. My sleep seemed normal for the first decade or so of my ME, and then I had more trouble sleeping, so age might be at least partly responsible. If someone gives me an effective treatment for ME, I'll see if my sleep changes.