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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What a f**ked up disease this is!

Cohen2

Senior Member
Messages
119
Location
New Zealand
@Cohen2, the darkest hours for me are around 4-6pm. Then usually the worst symptoms lift around 10pm. Does that sound similar to you?

yeah at the moment I'm getting up earlier than usual and my symptoms are worst about 4-7. And I usually feel better later on. By getting up earlier than my usual midday my symptoms aren't as bad in the first few hours. Hope that makes sense
 

wonderoushope

Senior Member
Messages
247
I get this sometimes but then I crash big time late afternoon
I had this last night. Fell asleep at 4am. Actually, I didn't really crash today, but I suspect it is because I have been sleeping okayish on other nights and my health is a bit better at the moment. But it might catch up with me tomorrow or the next day.

Also, I might not be completely tired, but I lack motivation through the day.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Lack of sleep can not be a favorable life. It will kill you faster than not eating. But not staying hydrated is even faster.

Apparently, 3 hours for you is still enough to stave off Zero.

There are some people in old age who sleep only an hour per night. Two months ago I was down to 40 minutes a day, and this amount was in steep decline. It turns out it was a calcium channel blocker doing this to me, but the main issue here is that low sleep means the immune system is not being maintained, at least in rats. After weeks of this, in rats, the immune system collapses and every bacteria in the body goes on an eating binge. Its fatal.

Five hours would be what I would consider minimum for good health, allowing time for hormone secretion etc. You can survive on one. Eight is the traditional figure, and higher than that if you have some kinds of medical conditions, including viral infection.

I normally have non-24 sleep disorder, but after restoring sleep two months ago it took about a month to kick in again. After very low sleep for a long time the circadian rhythms might reset.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
Wonder did they ever test cortisol antibodies or such a thing exist.
For definite, something happens in sleep that creates the fatigue that by getting up at 4am avoids.
Must be a relationship.
That's an interesting thing you state - I often wake up around 4am every night. I KNOW I feel alot better than when I go back to sleep & wake up around 9am. In fact, I tend to feel terrible if I wake up later by having MORE sleep. I have been toying with the idea of getting up (at 4am) & doing stuff & maybe going back to sleep when I crash or get massive dizziness &/or 'jelly legs' (usually blood sugar crash).
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
That's an interesting thing you state - I often wake up around 4am every night. I KNOW I feel alot better than when I go back to sleep & wake up around 9am. In fact, I tend to feel terrible if I wake up later by having MORE sleep. I have been toying with the idea of getting up (at 4am) & doing stuff & maybe going back to sleep when I crash or get massive dizziness &/or 'jelly legs' (usually blood sugar crash).

Many of my cfs mates the same.
In early cfs cortisol is raised.
It drops significantly then.
I believe body trying to circumvent the issue by dropping cortisol.
Wish they would do it.
 

student

Senior Member
Messages
166
Is it Liver-bowl / REM sleep cicles (with key hormon influence)?? What was an option- for those with more normal functions. (Later we should find out options to takel -Fokus-aktivity of pathogens also.)

at-- this wake-up moment it self: I would trie to become quiet. 1. Amygdala quietening: – (Gupta / Hopers round – near bed)... 2. Self-Hypnosis strategie ... might try: I am loved (I am enough). I am happy „in this“.
sing: I love to go through this (Marsia Peer UK)

practical stuff: 1. preparations for bed time 18.00 to 21.30 ... 2. the early hours – like 22.00 to 2.00 sleped ..
pitch dark- sleeping room, (early blue-light prevention..)

avoid the REM sleep killers – like: 1. E. smog (cellulars / W-Lan) off, 2. Koffein (Alkohol) verry early (until noon..)– if non. 3. Supplements. Potassium, Magnesium, Himalaya-salts (support the stomac accid)
 

student

Senior Member
Messages
166
Can we start a RE-set with a mild and early „push“? A (later) early morning – cortisol start up – that we choose, would sound good. a) 4 min (active 20/ 20 seconds passiv) exercise. b) early walking – first sunlight catching. c) meditating if possible.
Washing: 1. Cold water – on the face. / 2. First the legs up and down, than arm- trunk and back last – with cold water in morning.
Morning breakfast: Can I cut down suggar / fat burning -hot water...
(doing so many things right &) can bring the gut- Melatonin secret.... to switch on. Foodd for the good bacteria, to later raise guts melatonin - that might help us sleep.