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Fatigue after sleep

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18
hi everyone
I have a quick question, when I sleep even if it is for 15 minutes I can barely move or speak afterwards it take 1-1 1/2 hrs to get my function and my body going again. Does anyone else experience this? Or have any ideas to stop it?
Thanks
 
Messages
23
What helped immensely with my pain was when I started REALLY regulating my sleep. Wake up at 8:30am, no naps all day, at 8:30pm take 600mg magnesium and 3mg melatonin. No blue light after 8:30pm. And 10mg Amitriptaline at 10pm when I go to sleep. I know that's not exactly what you asked but I found i wasn't nearly as useless in the mornings after doing this for a few months, also my pain dropped considerably! (Ps. I need more sleep than most so you may need to tweak the times a bit, though i found an hour and a half to be a good length between the magnesium/melatonin and bedtime.
 

PatJ

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when I sleep even if it is for 15 minutes I can barely move or speak afterwards it take 1-1 1/2 hrs to get my function and my body going again.

I get this, although not quite as bad as you have described. For me it's very inconsistent. Sometimes I can nap and then wake up feeling OK, but other times I get sleep paralysis and then feel dismal when I finally wake up. My coordination is much worse, brain fog is increased, and sometimes it's as if all my nerves are full of static electricity causing me to feel a kind of internal trembling. It usually takes a couple of hours to feel normal again.
 

Scarecrow

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I get this, although not quite as bad as you have described. For me it's very inconsistent. Sometimes I can nap and then wake up feeling OK, but other times I get sleep paralysis and then feel dismal when I finally wake up. My coordination is much worse, brain fog is increased, and sometimes it's as if all my nerves are full of static electricity causing me to feel a kind of internal trembling. It usually takes a couple of hours to feel normal again.
I've never experienced anything like this but I find it very interesting.

The usual descriptions of sleep paralysis indicate that the paralysis only lasts a short time. It sounds horrific to be experiencing this for an extended period.

Are the symptoms following paralysis of the same quality as the general ME groggy hangover but more extreme, or are they subtly different?

Has anyone seen a sleep expert? They'd probably psychologise the hell out of you, so just asking, not suggesting it.

I'm wondering if this is related to sleep deprivation either in quality or quantity.
 

PatJ

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The usual descriptions of sleep paralysis indicate that the paralysis only lasts a short time. It sounds horrific to be experiencing this for an extended period.

I get the sleep paralysis for seconds to minutes. I remember one person on PR who said she experienced 1-2 hours of sleep paralysis every morning.

Sometimes I also get stuck in a dream loop where I imagine that I've woken up but have to struggle to move due to sleep paralysis. Once I finally get moving the dream resets and I'm paralyzed again, struggling to move again. I usually go through a couple of loops before resuming normal consciousness and being able to move, other times I go through ten to fifteen loops. It's a very weird semi-conscious dream state. I wonder if it's my mind's way of dealing with a stubborn sleep paralyzed body that won't start moving properly after sleep.

Are the symptoms following paralysis of the same quality as the general ME groggy hangover but more extreme, or are they subtly different?

There's a different quality to the symptoms. I can only imagine this, but I think it may partly be how a body feels after someone has had a general anaesthetic.

Has anyone seen a sleep expert?

I haven't. I'm fully housebound and partly bedbound much of the time so I can't even see a regular doctor, let alone a sleep specialist.

I've had occasional episodes of sleep paralysis for my entire life but they increased as my ME progressed.

I can also start to dream far more quickly than normal, sometimes within a few seconds of falling asleep. I know this because I sometimes nod off, dream, and wake up to find that only a few seconds or minutes have passed. (See below for probable explanation.)

I'm wondering if this is related to sleep deprivation either in quality or quantity.

I know I'm more likely to experience sleep paralysis if I'm unusually tired. And my sleep is dismal without supplements (see my signature for what it takes for me to get better, but not normal sleep).

It might be related to "secondary narcolepsy" which can occur with damage to the hypothalamus according to this site. Since ME involves HPA disfunction maybe some of us have secondary narcolepsy as a side effect.

That page also mentions muscle weakness in some forms of narcolepsy. I've read that Jen Brea would experience such sudden muscle weakness that she could barely move. I wonder if it's related to narcolepsy or something like it?

From the site linked above:
"In people with narcolepsy, the regulation of sleep is disrupted: the boundaries between wakefulness and sleep are less distinct, and elements of sleep and wakefulness can mix together."

The site also includes an interesting table listing common symptoms of narcolepsy. I've got all of them.
 

Scarecrow

Revolting Peasant
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I know I'm more likely to experience sleep paralysis if I'm unusually tired. And my sleep is dismal without supplements (see my signature for what it takes for me to get better, but not normal sleep).
Since the OP, what has struck me about this thread is the number of people replying and identifying given the vague tile - 'fatigue after sleep'. From a quick search, sleep paralysis does seem to be more prevalent in groups who experience poor sleep, so no surprise that many here will be affected but I don't see any descriptions of a sleep paralysis postdrome. So that does seem unusual.
I haven't. I'm fully housebound and partly bedbound much of the time so I can't even see a regular doctor, let alone a sleep specialist.
It wouldn't surprise me if this phenomenon is more likely the more severe your ME is. I do wonder if it has ever been noted by researchers but I suppose ultimately the solution is to fully normalise sleep (dare to dream!) and there is existing research interest in that.
Sometimes I also get stuck in a dream loop
I think this probably qualifies as "hallucinations", plus sleep paralysis, which are both listed as narcolepsy symptoms on the Understanding Narcolepsy site.
That occurred to me, too, when I was reading the link in the first post. Seems likely.

p.s. Interesting blog about better sleep. I know just what you mean about the intermittent consciousness, it's even worse than outright insomnia. I don't have such a long list as yours but we definitely have some in common.
 

perchance dreamer

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@PatJ, what you are describing does sound like narcolepsy. I used to have N., but it was likely from a brain injury. My N. went away when my brain apparently healed from the injury, according to my sleep doctor. It's not common to recover from N., but it does happen.

The first time I experienced sleep paralysis it scared the hell out of me because I thought I was dying. My S.P. was always the onset of what seemed to be out-of-body experiences. Once I realized I wasn't dying, I really loved these experiences. I wrote on another thread that although they had a physical origin, that doesn't mean there isn't some other type of meaning associated with these experiences.

Anyway, when I had S.P., it was always accompanied by a vibration that originated at the base of my spine and moved up to the top of my head, at which point I seemed to detach from my body. I've since read about the chakras and the rising of the kundalini, which seemed to match with what I was experiencing.

Although these were N. hallucinations, it is interesting to think of other meanings they might have such as the nonlocal mind. I find it all unknowable, but feel lucky I experienced them.

Have you ever had similar experiences to what I'm talking about when you've had S.P.? I'm glad that although you have S.P., you have found methods of getting better sleep, which you describe in your tag line.
 
Messages
18
it seems to have got worse the last few months and i can't seem to find an answer. My joints are also agony after I wake up its horrible :( thanks for all your ideas, maybe it's just one if the bizarre things that happen with this illness.
 

Scarecrow

Revolting Peasant
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There's a different quality to the symptoms. I can only imagine this, but I think it may partly be how a body feels after someone has had a general anaesthetic.
I forgot to say earlier, as someone who's had a general anaesthetic, that does make sense. All we need now is someone with experience of both.
 

Scarecrow

Revolting Peasant
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My joints are also agony after I wake up its horrible :(
It is quite common with ME/CFS to wake up with joint pain but if you are in a position to, you should get checked for inflammatory arthritis just in case.

Failing that, waking up in pain can be a symptom of poor sleep, so if you think that could be a factor that's something you could try to improve. It's so easy to give that advice and so hard to achieve but PatJ has some really good suggestions in his blog.
 
Messages
18
It is quite common with ME/CFS to wake up with joint pain but if you are in a position to, you should get checked for inflammatory arthritis just in case.

Failing that, waking up in pain can be a symptom of poor sleep, so if you think that could be a factor that's something you could try to improve. It's so easy to give that advice and so hard to achieve but PatJ has some really good suggestions in his blog.

Yes I am still trying to sort my sleep out, it's taking a while but I will get there!
 

PatJ

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It wouldn't surprise me if this phenomenon is more likely the more severe your ME is. I do wonder if it has ever been noted by researchers but I suppose ultimately the solution is to fully normalise sleep (dare to dream!) and there is existing research interest in that.

Erica Verrillo's CFS Treatment Guide 2e has some interesting info about sleep and ME. I have added titles for each excerpt for anyone who has trouble with reading blocks of text and just wants to scan for an interesting excerpt:
Sleep disturbances are common
Sleep disturbances are so common in CFS/ME that most doctors will not even
make the diagnosis if a patient reports having normal, restful sleep. Virtually every
CFS/ME patient has some trouble sleeping. Usually, problems consist of either
sleeping too little or sleeping too much. In either case the quality of sleep is poor.
...

Non-restorative sleep
Although sleep disturbances can take many forms, the outcome is always the
same—waking up tired. Nonrestorative sleep is a hallmark symptom of CFS/ME
and is a condition that acts as a catalyst. Because poor sleep exacerbates other
symptoms (pain, emotional swings, flu-like symptoms, fatigue) it is a focal point for
treatment.
...

Sleep is complex; relies on hypothalamus
The chemical recipe for sleep is complex, and the timing of hormones, such as
melatonin, amines, and other substances that send messages throughout the body
must be perfect. Body temperature must be lowered, metabolism slowed, appetite
inhibited, hormones released, elimination down regulated, and immune system
upregulated. Think of it as a symphonic orchestra, with the hypothalamus as the
conductor.
...

Common sleep disorders
Any chronic alteration in normal sleep patterns is referred to as a sleep
disorder. Common sleep disorders include insomnia (inability to fall or stay asleep),
malsomnia (excessive light sleep or broken sleep), hypersomnia (excessive sleep),
hypnagogic sleep (a state of being half awake, half asleep), and nightmares.
...

Altered brain waves in ME; research studies
Most researchers agree that the sleep disturbance in CFS/ME is caused by an
alteration in the normal brain wave patterns required for deep, restful sleep. Dr.
Russell Poland has proposed that in CFS/ME the normal pattern of sleep phases is
interrupted by alpha wave spikes (around 10 Hz); that is, when you should be in
deep, restoring stage four sleep, your brain waves are acting as though you are
awake ( CFIDS Chronicle , Summer 1993). (It should be mentioned that alpha spikes
are common in many autoimmune disorders.) Another CFS/ME anomaly is the
presence of excess theta waves, which cause the sleeper to remain in a light sleep
state. Dr. Jay Goldstein has theorized that the brain wave disturbances are the
result of alterations in hypothalamic function ( CFIDS Chronicle , Fall 1991).

In 1993 Krupp et al conducted sleep studies (polysomnography) in a group of
72 CFS patients with sleep disturbances. In 10 of 16 (62.5%) patients, the
researchers found clinically significant sleep abnormalities. The disorders included
periodic movement disorder, excessive daytime sleepiness, apnea, and narcolepsy.
A subsequent study in 1997 by Fischler et al revealed a lower ratio of stage 4
sleep, which would explain why sleep is nonrestorative in CFS/ME patients. The
researchers also found sleep initiation problems and sleep maintenance
disturbances. In keeping with the lower percentage of deep sleep they found a
higher percentage of stage 1 (light) sleep and a lower percentage of stage 2 sleep. All
of these finding confirm a significant disturbance in the sleep architecture of
CFS/ME patients.

Cytokines
The cause of the dysregulation may be attributable to excess cytokines acting
to stimulate the sympathetic nervous system (which is regulated by the
hypothalamus). Many studies have found increased inflammatory cytokines in the
plasma of patients with CFS/ME, including IL-6 and IL-1. Research indicates that
IL-1 plays a role in the regulation of non-REM sleep by increasing delta waves,
which may lead to hypersomnia and daytime sleepiness.

Interestingly, the only study which has actually measured cytokine levels of
CFS/ME patients during sleep found not pro-inflammatory activity, but anti-
inflammatory activity. In 2010 Nakamura et al found that in both CFS/ME and FM
patients, increases in IL-10 levels correlated with fragmented sleep. The
researchers concluded that “alterations in the balance of Th1 and Th2 cytokines
toward a Th2 or sleep-disrupting response suggests a possible role for cytokine-
induced, disturbed sleep in the pathogenesis of both syndromes.”

Low acetylcholine?
But cytokines are only one player in sleep disturbances. In 1996 Dr. Ernir
Snorrason, Dr. Arni Geirsson and Dr. Kari Stefansson tested Galantamine, a
selective acetylcholinesterase inhibitor, as a treatment for CFS/ME. The
researchers theorized that a deficit in acetylcholine was responsible for many
CFS/ME symptoms. Interestingly, the increase in acetylcholine, a neurochemical
generally associated with arousal, resulted in a 70% improvement of sleep
disturbances. Later studies conducted by Khan et al confirming hyper-
responsiveness to acetylcholine seem to bear out the hypothesis that low levels of
acetylcholine may contribute to sleep disturbance.

And some information about hypnagogia:
Hypnagogia is the state between wakefulness and sleep that precedes falling
asleep (or, conversely, coming awake). Typical sensations associated with
hypnagogia are a feeling of falling (which may be followed by a jerk), emotions
(usually fear), and spontaneous sights, smells, and sounds (hallucinations). Often,
people hear their own name being called. While many people seem to enjoy, and
even try to promote this state, the feeling of being neither asleep nor awake can be
extremely uncomfortable if extended.

Among those with highly fragmented sleep, the hypnagogic state can occur at
any time during the night. Those who are severely sleep deprived may even
experience hypnagogic hallucinations during the day. These are usually produced in
association with microsleeps, which are periods of sleep lasting only a few seconds,
resulting from the body's attempts to catch up on missing sleep. Meditation can also
produce hypnagogia.

Many of the drugs prescribed for sleep, notably hypnotics and those
interfering with cholinergic pathways, can produce hypnagogia. Those with
profoundly disturbed nervous systems (dysautonomia) may experience this effect
more than others.

Any voluntary movement will shake off hypnagogia. However, those who are
sleep deprived may simply wish to breathe deeply, relax, and allow this state to lead
them into true sleep.

Anti-cholinergics and sleep paralysis:
Anticholinergics are often prescribed to promote sleep, however in the more
severely ill these tend to induce an uncomfortable state of paralysis while still
conscious. For most patients the experience is very disturbing.

Dysania sounds similar to what @LifeLyingFlat has described:
Dysania refers to a period lasting one to two hours after awakening in which
a person simply cannot get out of bed. These hours of "morning fog" are typical of
CFS/ME and are common in all stages of the illness. Dr. Lapp reports that dysania
is the norm among his CFS/ME patients. Some medications commonly taken for
insomnia, such as sedating antidepressants, benzodiazepines, hypnotics, and
antihistamines may contribute to excessive morning grogginess (this is sometimes
called a “sleep hangover”).

There is more information, including treatment options (mostly pharmaceutical but some herbal) available in the CFS Treatment Guide 2e. It's only $3.99 on Amazon as an ebook and is absolutely stuffed with useful content.
 
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PatJ

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Have you ever had similar experiences to what I'm talking about when you've had S.P.?

I haven't had experiences like you've described, but they sound interesting, especially the potential link with the chakras. I have a spinal cord injury so maybe that would influence/impair energy flow in my spine.

My experiences with S.P. have always been unpleasant, with an extreme desire to get out of the paralysis.

The hypnagogic states I experience (without sleep paralysis) aren't bad, except for the fuzzy brain feeling afterward, but they lack the connectedness that regular dreams have. They're more like my mind shooting out fragments of dreams or thoughts, or as if my usual conscious control that allows for directed thought becomes so relaxed that background thoughts start to compete with each other for attention.