When did your unrefreshing sleep start?

[Husband of]

Hello all.

To me one of the defining aspects of MECFS is unrefreshing sleep.

i am very curious as to when this develops for people, compared to other symptoms. For example, if you have viral onset, how long after getting the virus did you have unrefreshing sleep? Or, did you consider you had u refreshing sleep while you had the virus and it never went away?

Edit: excerpt from 2021 ICC
Patients experience various sleep disturbances, such as problems in falling or staying asleep. However, even when these problems are treated, most patients remain tired or sick on awakening. Reduced heart rate variability, controlled by the autonomic nervous system, is linked to unrefreshing sleep in ME/CFS and other conditions.
73 Furthermore, studies have reported that nocturnal parasympathetic activity is decreased relative to sympathetic activity in ME/CFS, the inverse of what should be occurring during rest.
74,
75,
76
...
Unrefreshing sleep can be manifested as feeling unrested and unwell on awakening, regardless of how long the patient slept uninterrupted. Some patients need an hour or more on awakening to start feeling better, with late evenings being their best time of day. Patients may also experience trouble in falling asleep, staying asleep, waking up early, or staying awake during the day. They may experience a shifted sleep cycle

rest of post you don't have to read in order to contribute to thread, it's just personal context
rest of post you don't have to read in order to contribute to thread, it's just personal context

i am struggling to remember when unrefreshing sleep first became a symptom for my wife, but I believe that, if not immediately when she had her suspected virus that was the onset of her MECFS, then certainly she developed it within a month of suspected viral onset.

i am currently struggling to recover with COVID, and am experiencing some MECFS symptoms - specifically mental and physical exertion intolerance which brings back my sickness/immune response symptoms - causes brain fog, buzzy brain (like I can hear the brain jnflammation), nausea, dizziness/spaced out feeling, sore throat. These symptoms, as far as I can tell, occur only immediately during and after the exertion (ie not delayed like PEM) and then go away once sufficient rest has been had, and I feel good (symptomless) every morning when I wake up. Might also be Worth noting that I was never seriously sick with COVID

so, apart from general interest, Am interested for my own personal reasons - by understanding it it might help me ensure I can recover from COVID without it becoming MECFS, or might confirm that it's unlikely I will get MECFS because people who do had unrefreshing sleep right from the start of their virus onset.

i wonder, for instance, if the reason some people dont recover from post viral illness and others do is because the people that dont either have a greater severity or something else happens that causes issues with sleep

 

[Andryr]

you had unrefreshing sleep while you had the virus and it never went away?

Exactly

 

[Wishful]

I didn't know about ME until maybe 10 years into it, and at no time did I think it was a sleep disorder. I simply had symptoms that felt somewhat like being tired but which weren't affected by sleep or sleep quality. I really dislike the term 'unrefreshing sleep' because it implies that it has something to do with sleep, when I think it really doesn't.

 

[Insomniac]

My very first bout of unrefreshing sleep was right from the beginning of this illness's sudden onset. It was the very first symptom of the epstein barr virus that started it all.

I kissed my first kiss at age 15 in 1992.
6 weeks later woke up with a sore throat and what looked like a goiter. That was the first time in my life I felt this unrefreshing sleep and flu like tiredness. I went to the family doctor, got a blood test for mono and there it was. Positive for active Epstein Barr Virus.
After months when the symptoms did not go away, I was diagnosed with "ME".

The sleep has become worse in the years since then. I did not have the same messed up circadium rythm either. That took 2-4 years to develop

 

[Wishful]

I prefer to think that in ME sleep doesn't actually change and suddenly start becoming unrefreshing; we simply acquire a new symptom that somewhat mimics the feel of lack of sleep. My sleep seems to refresh what it should (normal fatigue).

 

[Rufous McKinney]

Had a mild version of ME for decades then hormone shifts related to menopause and extreme stress at work and demands that in hind site were excessive, triggered alot of worsening and my sleep became disrupted.

 

[Rufous McKinney]

As a child, it was very difficult to get me to wake up. (who knows when ME started in my case, maybe at age One)

 

[Rufous McKinney]

This is an interesting article about the sleep cycle, brain cleansing, and blood flow.

https://www.scientificamerican.com/article/deep-sleep-gives-your-brain-a-deep-clean1/

It seems like we have any number of opportunities for issues when sleep is not refreshing.

 

[xebex]

i don't feel liike unrefreshing sleep has much to do with ME i think it's a stress response to the illness ather than part of the illness. When i first got sick i was mild and my unrefreshing sleep was horrendous (because i was so stressed about what was happening to me maybe?) - i would wake up feeling so groggy - but as my day went on i would perk up and could live a fairly normal life as mildly affected i was still able to work part time and exercise just not vigourously. Then about 6 years in i dropped to moderate - my sleep never changed but i noticed that regardless of if I slept 8 hours or 4 or 2 i would feel the same the next day - infact - i've had many days of insomnia that haven't affected how tired i felt in the day. Infact right now i've been having a horrendous crash and falling into the depths of severe and STILL my relentless insomnia hasn't changed how i felt in the day. I may be an odd one out - but i can safely say that in no way does my quality of sleep affect how I feel in the day. Weird.

 

[Husband of]

I didn't know about ME until maybe 10 years into it, and at no time did I think it was a sleep disorder. I simply had symptoms that felt somewhat like being tired but which weren't affected by sleep or sleep quality. I really dislike the term 'unrefreshing sleep' because it implies that it has something to do with sleep, when I think it really doesn't.

What term would you prefer? 'Symptoms that aren't affected by sleep'? .

I do think because symptoms are based on Subjective descriptions that it's important to get specific as possible. You don't want people thinking the fatigue described by MECFS patients is something that improves with sleep.

(The other misconception people have, because MECFS symptoms are correctly said to vary quite a lot, is that PWME feel normal sometimes.)

but I'm also not sure that all the symptoms are unique to MECFS (ie it may not be just a case of getting more specific about what we mean by a symptom, eg by explaining in what way fatigue in MECFS is different to what other people think of as fatigue). It seems to me that many symptoms are symptoms of being sick, or of an immune response, and that (possibly) for some people who are sick or recovering from being sick sleep actually does improve these symptoms.

But I really appreciate the view you have provided as a data point in helping to unpack this

 

[Husband of]

. I may be an odd one out - but i can safely say that in no way does my quality of sleep affect how I feel in the day. Weird.

But I think this is kinda the point of the description "unrefreshing sleep" (even if there may be a better term), that sleep doesn't help your symptoms. So you wouldn't be the odd one out, you would be someone meeting (that aspect of) the diagnostic criteria for MECFS.

I think its mainly meant to differentiate general fatigue, which goes away when you sleep, from MECFS fatigue which doesn't. But I think it applies more broadly - brain fog for instance also, in most instances when people get this (eg after a hard days work, or due to stress), improves with sleep. Also the feeling of being sick, that people with a virus get, improves with rest for them but seems pretty constant in PWME.

it might be that it's not the same experience if fatigue, or brain fog, etc as others are experiencing and that a better description would make the "unrefreshing sleep" qualifier redundant.

But I'm not sure, I think at least for some symtpoms that's true, I'm just not sure yet if it's true for all symptoms. It seems to me that there are symptoms that people get when they are sick that are similar to what people with MECFS get but with sick people they might improve with rest but with PWME they don't. Maybe I am wrong though, I don't have ME after all, and my wife isn't the best at describing things (due to "brain fog")

 

[Husband of]

While this thread is about unrefreshing sleep, which may or may not be related to disturbed sleep, which in turn may or may not affect MECFS symptoms, y'all got me googling and...

This article is interesting
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2839418/
It postulates that cytokines are increased during sleep when someone has an infection, that this leads to disturbed sleep but also promotes fever thus aiding in recovery.

i would not be surprised if this is also going on with PWME, and perhaps some MECFS symptoms might be affected by it.

 

[GreenEdge]

I didn't notice until months later. It didn't feel unrefreshing, I just found myself waking up at 4am and not able to get back to sleep. I was super fit at the time and loved mountain biking. I had really bright lights fitted to my bike for night riding off-road. So my response to waking up early was to get up and go for a night ride before work. I would leave home about 4:30am and return sometime between 7 and 8am, shower, eat and then ride to work (10mins). So for me 'over training' is the likely cause of my CFS.

The virus was 'Ross River Fever' which is a serious infection that often takes people weeks or months to recover from. It's quite rare, spread by mosquitoes and only occurs in only small parts of Australia. Brisbane, being the most populated area where it can occur.

The doctor I saw (at uni) thought I had Rubella (German measles) and prescribed an antibiotic. Years later my new doctor ordered a lot of blood tests and found I had anti-bodies to 'Ross River Fever' so that's what I had. If I'd known, I would have treated it far more seriously and not returned to exercise so quickly.

 

[xebex]

But I think this is kinda the point of the description "unrefreshing sleep" (even if there may be a better term), that sleep doesn't help your symptoms. So you wouldn't be the odd one out, you would be someone meeting (that aspect of) the diagnostic criteria for MECFS.

i get your point - as in sleep does not refresh your health - you wake up the next day and you still have ME BUT i often wake up the next day, even with low moderate condition, and can sometimes feel totally great and refreshed but that is soon snatched away and the drudgery of the day will continue - sometimes i can lie on the sofa for hours feeling fine but i try to do anything and then the symptoms come on. So did the sleep refresh me? Infact i think it did - but the disease pulled me back down again.

It's kind of like saying a Cancer symptom is unrefreshing sleep becasue they still have cancer the next day even after a night of good sleep.

I can get a good night sleep, i can wake up feeling great, but i still crash if i try to cook dinner (or where i'm at now - brush my teeth)

 

[Husband of]

i get your point - as in sleep does not refresh your health - you wake up the next day and you still have ME BUT i often wake up the next day, even with low moderate condition, and can sometimes feel totally great and refreshed but that is soon snatched away and the drudgery of the day will continue - sometimes i can lie on the sofa for hours feeling fine but i try to do anything and then the symptoms come on. So did the sleep refresh me? Infact i think it did - but the disease pulled me back down again.

It's kind of like saying a Cancer symptom is unrefreshing sleep becasue they still have cancer the next day even after a night of good sleep.

I can get a good night sleep, i can wake up feeling great, but i still crash if i try to cook dinner (or where i'm at now - brush my teeth)

That's interesting. My wife's experience is very different. She never feels, even for a second at any point in time, even remotely close to good or normal, and certainly not when she wakes up. Seems everyone's symptoms are quite unique

 

[xebex]

I think most people at my function level feel worse than me. Which is odd, I think Over time some of my immune stuff has got better. But I’m still plagued by orthostatic intolerance which leads to horrendous neurological crashes. My ME started quite typical but is probably fairly atypical now.

 

[Wishful]

It seems to me that many symptoms are symptoms of being sick, or of an immune response, and that (possibly) for some people who are sick or recovering from being sick sleep actually does improve these symptoms.

Rest, or simply more time for the immune system to battle the infection, may improve those symptoms even without sleep.

Getting a viral infection causes certain symptoms, including something fatigue-like. When you wake up in the morning, and those symptoms are still there, do you jump to the conclusion that the infection has broken your ability to reduce fatigue via sleep, or do you conclude that the infection is still continuing to make you feel crappy?

What term would you prefer? 'Symptoms that aren't affected by sleep'? .

I wouldn't consider it a separate symptom. I'd simply note that ME is a disease that isn't helped by sleep, just as many other diseases aren't helped by sleep. It's not really worth mentioning. My guess is that ME only acquired that labelled symptom due to some 'expert' who made an incorrect conclusion and then kept pushing it, because those 'experts' can never admit to being wrong. It probably got supported by sleep experts, who wanted to justify their funding. Maybe also supported by psychiatrists, who could blame it on childhood teddybear trauma or bedwetting trauma or whatever.

 

[Rufous McKinney]

It's not really worth mentioning.

I disagree, and someday they will probably be able to explain it.

 

[Wishful]

I disagree, and someday they will probably be able to explain it.

Explain that sleep doesn't have a mechanism for reducing ME symptoms? Sleep doesn't have a mechanism for reducing symptoms from lots of diseases/disorders. I would guess that there are millions of diseases with symptoms that aren't refreshed by sleep. It's probably more common for symptoms to not be refreshed by sleep than to be refreshed. That's why I said it's not really worth mentioning.

 

[Rebecca under the papyrus]

Explain that sleep doesn't have a mechanism for reducing ME symptoms? Sleep doesn't have a mechanism for reducing symptoms from lots of diseases/disorders. I would guess that there are millions of diseases with symptoms that aren't refreshed by sleep. It's probably more common for symptoms to not be refreshed by sleep than to be refreshed. That's why I said it's not really worth mentioning.

Well, I for one do feel better after the rare night of good sleep. Less achiness mainly.

Good quality sleep certainly has the potential to improve chronic illness. The very purpose of sleep is to clean up, power up our systems, repair. While sleep might not improve your chronic illness after one night or two, it has great potential to do so longterm.

Cleaning up, powering up, repairing. Those are just other words for refreshing. A healthy person can distinguish between refreshing and unrefreshing sleep, and so can a sick one.

To Husband of's initial question: My sleep quality got worse over the first few months after illness onset.
About five months in there were a few weeks where I slept extremely much (14-16hours) and very well. That was the only time in all those years where my baseline actually improved.