Husband of
Senior Member
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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
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
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