Sleep problems in ME/CFS - discussion thread

Sasha said:
it would also be interesting to have a survey-based picture of what sleep problems occur in ME/CFS. My impression is 'all of them' but the picture must surely be more revealing than that
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It's partly the comparison that might be revealing. On the whole, the main complaints of people without ME/CFS seem to be that pain and discomfort keeps them awake, or that they're wrangling with a difficult or scary diagnosis, or that their meds make them sweat, itch, get reflux, or whatever.

People with ME/CFS will give you a dozen or more reasons and none stand out as "I'd sleep so much better if I could only get rid of this". As you say it's everything, and if you tried to boil it down you'd probably end up with two broad categories: PEM, and ME/CFS.
 
For me, excessive activity during the day leads to disturbed sleep. The other day I did a very long bike ride and then couldn't fall asleep for hours. My nervous system simply couldn't calm down, in an unpleasant way. It felt like the exercise had stirred up something in the body.

Noise during the night, eating too late, not eating enough, poor indoor air quality also matter.
 
Kitty said:
It's partly the comparison that might be revealing. On the whole, the main complaints of people without ME/CFS seem to be that pain and discomfort keeps them awake, or that they're wrangling with a difficult or scary diagnosis, or that their meds make them sweat, itch, get reflux, or whatever.

People with ME/CFS will give you a dozen or more reasons and none stand out as "I'd sleep so much better if I could only get rid of this". As you say it's everything, and if you tried to boil it down you'd probably end up with two broad categories: PEM, and ME/CFS.
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It's more the structure of the insomnia I was thinking might be revealing, such as whether it was problems getting to sleep, maintaining sleep, etc., and whether that could tie us to a specific gene. I don't know how specifically insomnia genes tie to any particular manifestation, though.
 
Sasha said:
It's more the structure of the insomnia I was thinking might be revealing, such as whether it was problems getting to sleep, maintaining sleep, etc., and whether that could tie us to a specific gene.
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Yes, I think what I'm trying to get at (in a muddled way) is whether poor sleep in ME/CFS is primary to the disease, not a secondary consequence of symptoms or treatment. The latter might sometimes be the case in other chronic diseases.
 
Hoopoe said:
For me, excessive activity during the day leads to disturbed sleep. The other day I did a very long bike ride and then couldn't fall asleep for hours. My nervous system simply couldn't calm down, in an unpleasant way. It felt like the exercise had stirred up something in the body.

Noise during the night, eating too late, not eating enough, poor indoor air quality also matter.
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+1 to all of this
 
Kitty said:
Yes, I think what I'm trying to get at (in a muddled way) is whether poor sleep in ME/CFS is primary to the disease, not a secondary consequence of symptoms or treatment. The latter might sometimes be the case in other chronic diseases.
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Highly abnormally unrefreshing sleep, on some mornings and with no apparent cause, preceded my ME/CFS.

I suspect that at this point I was already suffering from ME/CFS, but that the only symptom that could emerge above the subclinical threshold was unrefreshing sleep as part of a subtle form of PEM. Too much activity causes the same unrefreshing sleep.
 
josepdelafuente said:
+1 to all of this
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I agree as well. The wired/“adrenaline” rush feeling that is usually triggered by overexertion for me is very highly correlated with insomnia.

Although I do find my sleep is still shit when not wired. But the wired definitely makes it far more shit.

More specific thread on this topic:
Yann04

Thread '“Adrenaline Rush” phenomenon— What helps?'

A significant subset (NIH CPET study estimated at 25%) of people with ME experience a phenomenon colloquially described as an “adrenaline rush” during and after overexertion, but before PEM begins. This is characterised by a rush of “fake energy” giving symptoms such as tatycardia, muscle tremors, feeling of overheating etc.

This is definitely not a fun phenomenon, as it significantly worsens the crash and is impossible to “turn off”.

I’m starting this thread to discuss how people manage these events, and what they’ve found helps.

For me:
Helps a lot: Continuing to pace rest (despite...
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Most pwME without sleep problems are not posting about sleep issues, and most who are feeling better are not posting on ME forums. In person pwME that I've met over the years don't have sleep problems. So it would be difficult to make an overall calculation imo.
 
Mij said:
Most pwME without sleep problems are not posting about sleep issues, and most who are feeling better are not posting on ME forums. In person pwME that I've met over the years don't have sleep problems. So it would be difficult to make an overall calculation imo.
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Interesting - for what it's worth, I have never met one in person without sleep problems. I actually wasn't aware they existed. For my part, it was my sleep issues that were my first impossible-to-ignore symptom, and I spent years assuming that if I could just get my sleep fixed I would be ok. They remain one of my biggest QoL drains.

And yes, as I wrote earlier, I definitely suffer from the "increased exertion = worse sleep" pattern. It is how I was finally diagnosed.
 
At the beggining of my illness. I probably wouldn’t have said I had sleep problems.

I did have hypersomnia (sleeping more than usual), like without an alarm I was sleeping 10 hours when before getting ill it was more 8:30-9. But like I felt okay after those 10 hours generally so I didn’t really see it as a problem.

Although it was annoying to plan around needing that amount of sleep especially as a Bsc student.
 
I've had hypersomnia and still do but not as often as I did years ago. I prefer hypersomnia over insomnia. No sleep issues except for 2 years out of the blue, it was brutal. Testing at a sleep lab overnight was a nightmare, the technician didn't understand my problem.
 
Is there a poll with or without pain that suffer from insomnia? My impression is that pain isn't the driver to insomnia b/c it can be involved in both groups.
 
Mij said:
Is there a poll with or without pain that suffer from insomnia? My impression is that pain isn't the driver to insomnia b/c it can be involved in both groups.
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My personal impression is that when I have pain it definitely can cause insomnia. But most my insomnia occurs when I don’t have pain. So pain is a minor reason not a main driving factor.
 
Hoopoe said:
For me, excessive activity during the day leads to disturbed sleep. The other day I did a very long bike ride and then couldn't fall asleep for hours. My nervous system simply couldn't calm down, in an unpleasant way. It felt like the exercise had stirred up something in the body.
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This for me too. The more I rest during the day the better my sleep. My sleep issues kicked in ~4/5 months into the Long Covid rollercoaster, preceded by what I'll broadly call "brain stuff" and along with new onset migraines, headaches & head pains. The last 3 have resolved 5 years in but the sleep issues remain. Oh and there were also random things like needing to pee a lot up to 10 times a night in the months after Covid which obviously disturbed sleep at that point too.

The sleep issues started with hypersomnia in yr 1, and progressed quickly into bad insomnia... hours to fall asleep, sometimes waking for hours during the night, but mostly once I got finally got asleep was ok, but then woke too early, not enough sleep. Then even if I had enough sleep felt totally unrefreshed.

Also for the first few years, don't know if anyone experienced this & I know I don't have words to describe it, but the hours trying to go to sleep I was not just "exhausted" or "wired"... it was some indescribable state of unbearable torture. Maybe that was a version of PEM after the day's exertion while I was still learning what PEM was & didn't really have a clear concept of reducing activity levels as much I have now.

Then melatonin helped with initiating sleep but led to the main issue switching to waking for hours in the middle of the night. And still regardless if I sleep well, rarely feeling refreshed. I get maybe 2-4 good nights' sleep in a month, i.e. sleep that I wake from refreshed and also that doesn't take hours trying to sleep, or waking for hours during the night.

Really bad PEM: I may not sleep at all the night of instigating it. This happened after my worst PEM episode - a Dr appointment that could have been online / telephone, I wasn't well enough at all to go but no choice. Sleep was an utter train wreck for weeks afterwards (as well as the rest of the PEM nightmare) and took ? 6 months to get back to "usual" after that appointment.
 
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