Significance of unrefreshing sleep in IOM diagnostic guidelines

It's hard to comment on a specific case, but in other fatiguing conditions sleep usually almost completely ameliorates the fatigue, at least temporarily. Like in MS, the fatigue gradually gets worse over the course of the day, but then sleep ameliorates it:

https://www.youtube.com/watch?v=ZGePZXfNRcw

. So someone could find sleep refreshing in ME, but if it still doesn't substantially ameliorate their symptoms, that seems consistent with ME.

 

Sleep including naps does take the edge off, there is usually some small restorative value, or at least a halt to feeling worse and worse after lack of rest. However in a crash I wake up feeling like I have been hit by a truck most of the time. I also almost never have any energy on waking, but rarely (depending on rest, diet, and who knows what else) I will wake up with less than three minutes of stored muscle energy. I conserve those few minutes and make them last, or do a chore, or make breakfast faster than usual.

I would would never, ever, describe my waking up as feeling refreshed.

 

For me unrefreshing sleep means waking up in the morning with very little energy. I feel like I've had a good nights sleep and I'm not tired or want to go back to sleep. I'm ready to get up and start my day, however, my energy level doesn't get refreshed while sleeping and I start of my day exhausted before I've even done anything.

 

I think if your unrefreshing sleep were to return without careful pacing, meds, etc, then you still have that symptom. It's just controlled, rather than removed/resolved.

For me, my sleep is okay sometimes, and I can get good stretches of a few days at a time where I sleep well, but it's like my body wants to move back to a state where sleep is unrefreshing, so I have to constantly adjust and tweak what I'm doing. If I didn't do that, and didn't take any meds, my sleep would be uniformly awful again.

So I consider myself to still have that symptom even if there's a portion of the time (much less than half) when it's not so much of an issue. Even if I had good sleep 100% of the time, I would still think I had the symptom if I knew it would return without my efforts to manage it.

I think of it like migraines. If you take prophylactics, you might not get them anymore. But you wouldn't say you were cured of migraines and you'll probably always be a migraineur.

But YMMV, of course.

 

This too. My 'good sleep' is quite a bit worse than a healthy person's. Feeling refreshed has probably happened fewer than five times in the last year, and that's likely an overestimate.

 

For more than a decade after onset, I felt considerably more exhausted upon waking than when I went to bed. It may have had something to do with sleep apnea. Specifically, "central sleep apnea," which may result in an irregular breathing pattern due a problem with the brain responding inappropriately to changing carbon dioxide levels in the blood. https://www.sleepassociation.org/sleep-apnea/central-sleep-apnea

I'm not sure if ME caused this, or if ME just made it worse, but I had no noticeable issue with it prior to ME.

 

Same experience here for ever so long. The night is awful in the sense that it is not restoring anything, and way worse morning than in bed the night before. As a main rule. The dynamics morning is improving slightly and slowly during the day, in general. Can add that sleep hygiene is optimal.

What I find fascinating, is that I very seldom is tired the “normal way”, as yawning, that kind of tired. Almost never yawn!? But never ever restored?

Sleep is some kind of mystery, and it plays a major part. It’s like starting all over again every single morning, never restoring. It may be some kind of sleep that happens during night, but it is never of the restorative type.

 

Pre ME after a good night's sleep I would wake up feeling good and raring to go.

Now, it seems the more sound my sleep, the worse I feel.

Some of that might be due to fluctuating thyroid issues - when I need to increase the dose I sleep much more soundly and for longer. Naturally, I will feel unwell if the thyroid meds need adjusting.

Eveb when the thyroid levels are optimal for me, the longer or more soundly I sleep the more awful I will feel on waking.

 

Ugh, like freaking Neo waking up from the Matrix.