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

How do you feel in the morning compared to when you went to bed?

  • Better

    Votes: 10 22.7%

  • The same

    Votes: 8 18.2%

  • Worse

    Votes: 26 59.1%
  • Total voters
    44
V.R.T. said:
I have not had the courage to try and taper off now I'm severe.
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I tapered off a different drug by opening the capsules and taking out a very small amount of the powder before resealing and swallowing them. I used the pointed ends of interdental sticks to lift a teeny bit out, and they also served as a rough measure.

I gradually increased the amount I took out over a period of over a year, but only ever by a bit. It cut out almost all of the side effects I'd got from going down a big step to the next dose increment. My GP at the time thought I was mad to faff about with capsules every day over such a long period, but agreed that if it was working for me, it was okay to persevere with it.
 
i was “lucky” with pregabalin as I had such a bad initial experience that I reduced right down to a very low dose and I soon decided to only take it when neuropathic pain was high. Then I had a further bad experience when I took the low dose 3 consecutive days and woke up with internal tremors. As I was only taking 25mg tablets i was lucky to not experience any withdrawal.
For some reason I hadn’t registered it could be so horrendous to withdraw from it was upsetting to read Alem’s update about his experience.

Added my ME is moderate severity and I don’t have truly horrendous pain so my judgement on (dis)continuing medication is in that context
 
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Trish said:
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.
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I had always assumed that originally sleep being ‘unrefreshing’ in the sense that it does not resolve the ME/CFS fatigue was what was intended in the symptom list, to distinguish from fatigue due to just not getting enough sleep. I doubt may compilers of symptom lists ever engaged in the sort of in depth discussion of symptoms we look at here. That as for many of us sleep being associated with worsening of other symptoms, something we may need to rest to recover from, was not thought of.
 
Alinda said:
Depends if I have PEM or not. If I am not in PEM, I often feel a little better or the same when I wake up, and my symptoms slowly get worse throughout the day. During PEM its the opposite.

Edit, it also highly depends on whether I went to sleep and woke up at natural times or not. I need to go sleep the second I feel sleepy and wake up naturally to feel the best in the morning.
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I'm quite similar. I feel better after a good night sleep when I'm at my base level. I feel terrible when I have disrupted sleep, and I also feel terrible during PEM.
 
Sasha said:
I'm not sure that 'unrefreshing sleep' really describes the experience of sleep for PwME so without saying anything else, I'd like to see how we feel when we wake up in the morning compared to how we felt when we went to bed.
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I take the phrase “unrefreshing sleep” to mean that we don’t get the same kind of reset that non-ME people do. I thought it meant that sleep doesn’t cure our fatigue. I do think it’s one of those ubiquitous phrases that gets trotted out everywhere and means different things to different people.

I definitely have nights with better sleep than others and I can wake up feeling ok then deteriorate an hour or two later, equally I can of course wake up feeling awful. If anything, I feel like it’s a bumpy ride with ups and downs depending on the day and I try to avoid thinking about how I feel and instead get on with waking up and getting meds, tea, fruit then assess if it’s a bad day or not.

Sleep isn’t easy, but it is preferable to staying awake. Like getting washed, you feel better after for having bothered to do it, but it isn’t a “break” or a “rest” as such.
 
As so often is the case with ME/CFS we run hard into the limits of language.

I have had a couple of sleep studies for sleep apnea, before and after nasal surgery.

The after results showed conventionally normal sleep. More or less.

Which just proves to me that we don't yet know how to measure the sleep problems in ME/CFS.
 
Sean said:
As so often is the case with ME/CFS we run hard into the limits of language.
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That's an interesting point in general - and it suggests that some of our symptoms are almost unique, because otherwise, there'd already be words for them.
Sean said:
I have had a couple of sleep studies for sleep apnea, before and after nasal surgery.

The after results showed conventionally normal sleep. More or less.
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Same here - I had a sleep study showing normal results.

I wonder if there have been any studies looking at polysomnography in PwME, and if so, what the results were - and whether, if the results were normal, that helps us narrow down things in terms of mechanism.
 
Sasha said:
I wonder if there have been any studies looking at polysomnography in PwME, and if so, what the results were - and whether, if the results were normal, that helps us narrow down things in terms of mechanism.
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If I recall correctly there have been several sleep studies in pwME (and there's some meta analysis on these as well). The intramural study included a polysomnography ("polysomnography did not reveal clinically relevant findings (Supplementary Information, Sleep dysfunction)". What I'm much less sure about is whether there have been well conducted sleep studies by the appropriate people and I don't know whether that has really been discussed on S4ME. Given the low quality in other studies, I would not be suprised if they were lacking. But since some studies have been conducted, including polysomnography, one should not be allowed to expect easy answers in the first place.

I heard there was a sleep study that wanted to get underway but the sleep researchers didn't want to get involved because they thought that their ME/CFS colleagues were too incompetent for collaboration, maybe they were not all that wrong.
 
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Sly Saint said:

one reason I really object to the description of 'moderate' including 'needing to sleep a couple of hours in the afternoon'.
Does anyone here who is moderate do that?
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I don't but I'm not really understanding what you are implying here? I use moderate to describe my ME/CFS but I have stated in a post on the forum that I don't really know where I am in this illness right now. I could be mild, though it does not feel mild because I know if I were to try to live a normal life I would deteriorate very quickly.

I would prefer to call myself a very severe that is now a managed moderate. Describes my past and present.
 
Ok, so it sounds like we are judging someone who must have been moderate and needing to sleep in the afternoons?

I have always had severe insomnia with my ME and I remember in those years feeling like I could go off to sleep in the afternoon and I remember falling asleep a couple of times and waking feeling so bad that I never allowed myself to fall asleep again.

This person could have been moderate and was ok (?) when they woke up. I don't think we should be invalidating others ME/CFS, we don't have the full picture of what each is going through.
 
AliceLily said:
This person could have been moderate and was ok (?) when they woke up. I don't think we should be invalidating others ME/CFS, we don't have the full picture of what each is going through.
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I don't think it's an individual person being referred to with moderate ME/CFS who needs to sleep or rest in the afternoons. I think it's in some document describing severity levels.
 
Sean said:
As so often is the case with ME/CFS we run hard into the limits of language.

I have had a couple of sleep studies for sleep apnea, before and after nasal surgery.

The after results showed conventionally normal sleep. More or less.

Which just proves to me that we don't yet know how to measure the sleep problems in ME/CFS.
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Interesting, what exactly was the surgery (I cannot use the CPAP and am looking at other solutions now)
 
Sly Saint said:

one reason I really object to the description of 'moderate' including 'needing to sleep a couple of hours in the afternoon'.
Does anyone here who is moderate do that?
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I do in phases. A week or so of napping every day, then a week or two without.
I certainly could not work though.

Some of those info/scales of ME/CFS say “moderate” need to rest in the afternoon, some say nap.

Many say moderate May need to use a wheelchair when out - I wouldn’t manage a wheelchair, but I can walk.

I hate all the fiddling with scales/levels of severity it’s another one of those “shuffling the deckchairs on the Titanic” activities which everyone seems to want to endlessly tinker with, like pacing guides.
 
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