Do you feel worse, better or the same when you wake compared to when you went to sleep?

[V.R.T.]

I also jerk awake in the night with a start reguarly. Once recently my partner came into my room in the early hours because I had yelled help in my sleep as I woke up. I couldn't remember doing it but often get sensations that might make one yell for help.

A few days ago I had a very unpleasant ineffable sensation as I was half awake that made me concerned I was having some kind of serious brain episode. But when I woke up I was fine (for me anyway).

 

[Kitty]

I hate going to bed feeling my best of all that day

+1!

It's really quite depressing.

ETA: on cognitive function alone, the difference between just before bed and the following morning is hard to describe. Like someone who can do tough cryptic crosswords, then nine hours later can't work out how to find out what day it is today.

 

[Mij]

I've not had issues with sleep or unrefreshed sleep unless I really over done it the day before.

My sleep issues now are all related to menopause, fragmented sleep and waking up feeling unrefreshed, but as the day goes on I start to improve. I've lost the ability to have a short nap in the late morning or early afternoon which sucks.

 

[Dolphin]

Immediately after I wake up, I feel groggy. I put a lot of that down to the tricyclic I take.
But I feel less PEM-y and symptoms like sore throats have often disappeared after 8-9 hours of sleep. So I put better.

 

[Utsikt]

Not sure I fully understand "distortion because of the time jump"?

Yeah, I could have been clearer.

When I sleep, I compare how I felt e.g. at midnight and at 8AM so there is eight hours between the comparisons.

When I’m awake I compare to the previous hour, so there is much less time for an improvement to happen which might make it seem smaller compared to the change from when I’ve slept.

 

[NelliePledge]

Agree anyone taking tricyclic is at risk of sedation hangover as my GP at the time called it. I used to get that and stopped getting the benefit of earlier sleep onset so I decided to stop. I don’t feel sedated when I wake up I feel worse ME symptoms notably body aches & slow thinking.

I also had sedative effect even from low dose Pregabalin. It is definitely worth trying to understand the effects such medications have as the negatives can outweigh any benefits.

 

[Trish]

Does anyone know how 'unrefreshing sleep' became a core feature in so many ME/CFS diagnostic criteria? Why that, rather than, say, pain or OI or digestive system problems?

It doesn't seem to be universal among people diagnosed with ME/CFS with PEM.

 

[Jonathan Edwards]

Does anyone know how 'unrefreshing sleep' became a core feature in so many ME/CFS diagnostic criteria?

I think almost certainly because it is an unusual feature of a disease. Lots of things have pain and gut upsets. Presumably physicians heard several times a specific complaint of sleep not making people feel rested or refreshed. Diagnosis nearly always relies more on unusual things than on dominant things. As in the green-cheeked parakeet. Almost all parakeets are green but only one has a brown face with a little green cheek patch.

 

[Alinda]

Does anyone know how 'unrefreshing sleep' became a core feature in so many ME/CFS diagnostic criteria? Why that, rather than, say, pain or OI or digestive system problems?

It doesn't seem to be universal among people diagnosed with ME/CFS with PEM.

I think its a misunderstanding of how a lot of symptoms are described as "fatigue", and people don't always understand the difference between sleepiness and fatigue.

It does make sense to me that PEM shouldn't be something that just resolves after a good night of sleep, which is different compared to some other people I know with chronic illnesses. They often do feel a bit better after sleeping, but people with me/cfs seem to notice PEM starting when waking up or not improving after hours of sleep.

 

[Utsikt]

Agree anyone taking tricyclic is at risk of sedation hangover as my GP at the time called it. I used to get that and stopped getting the benefit of earlier sleep onset so I decided to stop. I don’t feel sedated when I wake up I feel worse ME symptoms notably body aches & slow thinking.

I also had sedative effect even from low dose Pregabalin. It is definitely worth trying to understand the effects such medications have as the negatives can outweigh any benefits.

Ooh, good point. I might have a hangover from the sleep meds. But I wouldn’t go without my tricyclics, because the pain also gets worse, my head is slower and I sleep less when not on them. Especially the pain seems to correlate heavily with the half-life curve, and got better when I upped the (still low) dose so I never had the lowest levels at the end of the day.

 

[Sasha]

I think almost certainly because it is an unusual feature of a disease.

Is feeling worse in the morning than when you went to bed unusual for a disease?

 

[Jonathan Edwards]

Is feeling worse in the morning than when you went to bed unusual for a disease?

That is a different issue. With RA you might be more stiff. Feeling as if sleep had not happened is different.

 

[Kitty]

Is feeling worse in the morning than when you went to bed unusual for a disease?

It probably is when it's not caused by medication or things like joint stiffness. Same with alcohol intolerance. They're funny symptoms that stand out.

 

[Kitty]

Feeling as if sleep had not happened is different.

For the record, I've never experienced that! Sleep is very much an event, one that leaves me feeling exhausted and ill.

Clarification: it leaves me feeling much more exhausted and ill than before I did it.

 

[Sasha]

That is a different issue. With RA you might be more stiff. Feeling as if sleep had not happened is different.

But for a lot of us, it isn't feeling as though sleep had not happened - it's feeling as though sleep had made us ill.

'Unrefreshing sleep' to me simply sounds as though sleep hadn't done anything. I don't think it's a good descriptor for what's happening to PwME.

Do you think that what people are describing on this thread (which is admittedly rather varied) can be explained by any of the biological models that we're currently considering/building?

 

[StellariaGraminea]

But for a lot of us, it isn't feeling as though sleep had not happened - it's feeling as though sleep had made us ill.

'Unrefreshing sleep' to me simply sounds as though sleep hadn't done anything. I don't think it's a good descriptor for what's happening to PwME.

Exactly.

 

[AliceLily]

I noticed I was needing to drink a lot of water in my severer years. The ME felt very dehydrating.

 

[Kitty]

Do you think that what people are describing on this thread (which is admittedly rather varied) can be explained by any of the biological models that we're currently considering/building?

Maybe there are more questions to explore? For instance, do people tend to feel better or worse after sleeping when they're ill with a virus; and are people who get a lot of immune-type symptoms more likely to complain of feeling worse after sleep than those whose ME/CFS is dominated by other symptoms like fatigue or pain or migraine?

 

[Sasha]

Maybe there are more questions to explore? For instance, do people tend to feel better or worse after sleeping when they're ill with a virus; and are people who get a lot of immune-type symptoms more likely to complain of feeling worse after sleep than those whose ME/CFS is dominated by other symptoms like fatigue or pain or migraine?

Interesting question - I can't remember what was asked in DecodeME and whether it would allow this to be looked at.

 

[V.R.T.]

I also had sedative effect even from low dose Pregabalin. It is definitely worth trying to understand the effects such medications have as the negatives can outweigh any benefits.

I have been on a low dose of pregablin for 6 years. Ostensibly for anxiety that was infact a bad period where my MECFS symptoms were flaring and causing PEM and DPDR, but I didn't understand at the time.

I have not had the courage to try and taper off now I'm severe. My partner was also put on it for similar reasons cut her dose in half via taper when mild and it was hellish for her. When she tried to reduce more since becoming moderate she couldn't because it crashed her. Symptoms got better as soon as she restarted. I've heard a lot of horror stories about people having horrible side effects and withdrawal effects online. Its an evil drug and i wish I'd never discovered it.

Unfortunately it seemed to be helping my partner at first, so I got on it a few months later and only when she tried to cut down her dose did we realise our mistake.

My sleep quality was definitely worse from ME/CFS onset regardless of pregabalin though. In terms of sleep cycle I may have actually got 'better' when I got ME i.e. awake during the day a bit more.