Sleep pattern and symptom severity over the course of the day.

Paulie

Paulie

Established Member (Voting Rights)
Wasn't sure where to post this. Does anyone know if there is research into sleeping patterns and changes in symptom severity during the course of the day?

Here's my general sleep and symptom profile:

Main sleep: 4am - 2pm
Symptoms on waking: Paralysis, whole body stiffness, restricted movement for first 20 mins, neck pain, poisoned feeling.

Over time these symptoms subside (as long as I remain mostly inactive). By 9pm I can walk around the house and do tasks. I still have an urge to lie down and still feel fatigued but generally all the symptoms listed above when I first wake up have dissipated by about 80%.

So my question is what are the percentages of people with MECFS who share this "worse after waking from main sleep" and "dissipation over time awake" profile?

And what percentage have consistently bad symptoms through waking hours?

And what percentage have symptoms that worsen during the course of the day?

Can anyone reading tell me what category above they feel they are in? Are you a) worst when waking, b) same through the day, c) worst later in the day?

Does anyone know of research that has looked at this? When I did the DecodeME survey I was kind of anticipating such questions about symptom severity/changes through the day but we weren't asked about that unfortunately. It feels like this could provide clues to causes in MECFS or generate interesting hypotheses at least.

Paulie
 
@Paulie

Have you ever experienced difficulty awakening from sleep? E.g. someone tried to wake you up, but you were unresponsive, or if you woke up, your mind was completely blank, making you feel confused/muddled/disoriented for a while? I ask because it can sometimes be a stage before what you describe.

Paulie said:
So my question is what are the percentages of people with MECFS who share this "worse after waking from main sleep" and "dissipation over time awake" profile?
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I experience this.

Paulie said:
And what percentage have symptoms that worsen during the course of the day?
Click to expand...

Followed by this.
Paulie said:
Can anyone reading tell me what category above they feel they are in? Are you a) worst when waking, b) same through the day, c) worst later in the day?
Click to expand...

A and C.
 
I feel grotty on waking, sometimes/often/usually get worse over time (possibly dependent on eating), then usually feel gradually better from about 1500. It varies a bit, but I think I always feel grotty on waking or getting up.
 
perchance dreamer said:
Since you mentioned paralysis as one of your symptoms, you might want to research REM sleep disorders and sleep paralysis. SP is sometimes associated with narcolepsy, but there are other kinds of sleep disorders that can cause it.
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Thanks. I have googled "paralysis when waking" numerous times but the search always returns sleep paralysis and dreaming about not being able to move. I have experienced those sleep paralysis dreams where I am aware of a presence in the house or my bedroom but I am unable to move - it feels real but then I wake up. I've experienced that a few times in my life but it's not what I experience on a daily basis. What I am describing is waking up with my legs and arms stiff - like I am wrapped in sticky tape. I am fully conscious when I experience it. It's pretty similar to the stiffness experienced if you over-exercise the previous day. Like say if you walked 20 miles then went to sleep - you would wake up and barely be able to move. I do have a suspicion that my limbs, especially my legs are tensing up during sleep and that is why my legs ache so much. But because I've been diagnosed with CFS and the doctor told me I definitely don't have narcolepsy I have mostly just ignored my suspicions about having a sleep disorder.

I've also googled legs moving/tensing during sleep to see what that returns but it always comes back with loads of results for Restless Leg Syndrome which isn't what I am describing. I've seen some google results implying PLMD - periodic limb movement disorder too but I don't think it quite fits what I'm experiencing. I don't think there is large leg movements happening during sleep. If there is something happening during sleep it's just a tensing up of my legs.

I also suspected narcolepsy or some similar sleep disorder and asked my doctor about it but she was quite firm in telling me I don't have narcolepsy. She then referred me to a Chronic Fatigue clinic which is where I was given a CFS diagnosis so after that I just assumed I was wrong about thinking it was a sleep disorder.

From what I've read the USA seems to have a different criteria for diagnosing narcolepsy compared with the UK (where I am). I have read that you can get a narcolepsy diagnosis in the USA merely by if you fall asleep and enter REM sleep within a few seconds/minutes (where normally REM sleep isn't meant to start until the end of a sleep cycle). I know for sure that I often enter REM sleep as soon as I fall asleep. There's been plenty of times when I have fallen asleep and been dreaming then wake up within a few minutes. So perhaps if I was in the US I may have been given a narcolepsy diagnosis. But in the UK I think you need to show signs of falling asleep uncontrollably during the daytime and/or other symptoms such as cataplexy - neither of which I show signs of. I may be wrong about that though.
 
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livinglighter said:
@Paulie

Have you ever experienced difficulty awakening from sleep? E.g. someone tried to wake you up, but you were unresponsive, or if you woke up, your mind was completely blank, making you feel confused/muddled/disoriented for a while? I ask because it can sometimes be a stage before what you describe.
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No I don't think I've experienced that. I think I am generally a pretty light sleeper. If there's noise such as keys in the front door downstairs or letters coming through the letterbox on the front door or if someone calls my name from outside my room, I tend to always wake up.
 
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