• Welcome to Phoenix Rising!

    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.

    To register, simply click the Register button at the top right.

Awake for 51 straight hours and feeling great

Wolfiness

Activity Level 0
Messages
482
Location
UK
Ok ME homies, I'm at about 1.5% on the Bell Scale for 99% of the time. Currently however I've been awake since Saturday evening GMT, i.e. for 51 straight hours, and I feel better than my average, like maybe, ooh 1.75%, and very, uh, cheerful, I'd say, though I'm not bipolar.

Anyone else get this?


Oh and yes this is a stealth boast. :oops:
 

Seven7

Seven
Messages
3,444
Location
USA
@Wolfiness I ahve felt this then I crash hard and fast. But I hope it is not your case!!! Also I have notice is like if I ma running off adrenaline. And I get it like during sleeping while not even dreaming so I know is a abnormal body adrenaline regulation for me (I have POTs so I think normal under the circumstances). By the way I have learn not to over do during this periods the hard way.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
Yeah I've had these episodes since 2004, I don't have POTS or adrenaline weirdness, the crashes aren't particularly bad and often actually cycle back into another high. I only really suffer if I don't rest afterwards, but during it, I feel the metabolic catastrophe that is my muscle function relent slightly.
 
Last edited:

Wolfiness

Activity Level 0
Messages
482
Location
UK
Of course it won't last! But why *does* it go up? These episodes only got more frequent and pronounced during my two remissions.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Yes. I get that. It is mighty weird, and I wish I knew the mechanism of it.
I haven't pulled a 51-hour stretch yet though and my basic instincts wouldn't do it. But a few times, I have done 36 hours or something.
I have found myself symptom-free then! It completely baffles me.
When my illness began, during the first 3-4 weeks I went through a bad time when I could hardly eat. I stayed up all night (felt too creepy to sleep) and by morning was thoroughly exhausted but it felt "normal"....I could eat well that day, and enjoyed three meals which were well digested. That was a lovely day. I could enjoy a couple of coffees without feeling bad....I could go for a walk.....

To me it feels like a drug, doing that. Like one of those drugs that do you in if you keep taking them. I get a "high" from it but know it's not something I can do too often. I know for sure my body needs sleep.

But I wish I understood what that was all about....
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
@Wolfcub (no relation) that is VERY similar, mine are typically around 36 hours and it used always to go hand in hand with my usual, er, Bristol stool chart issues, suddenly resolving.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
Now tell me why my tonic-clonic seizures were exempt from PEM as far as I can tell o_O
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I have heard a few people report similar @Wolfiness (all wolves are distant cousins :D)
Something must kick in when we have had no sleep. What is it? There has to be a clue there.
 

knackers323

Senior Member
Messages
1,625
Anyone know what the researchers thoughts on this effect are?

It seems to be common amongst those with cfs?

Is the same true for any other illnesses, especially autoimmune ones?

The answer to this may be a good clue as to what cfs is/isn’t
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
It doesn't always happen though. Sometimes, certainly on some antidepressants like bupropion and duloxetine, I just got overworked and underrested with no fun bits and had to stop the drugs. The computer game trigger is hit and miss too.
 

Badpack

Senior Member
Messages
382
This has to do with the serotonin levels. They go up if keep awake for a long time. This is also used for ppl with an attack of heavy depression. We know that serotonin isnt normal in ppl with Cfs. So i think this is the feel good thing you experience for a while there.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
I dunno, I took shedloads of SSRIs for years and never felt any difference at all except when sertraline's side effects initially made me hypomanic for a week. I did feel much physically better but the endless cheerfulness began to grate because it was artificial, so I took a couple of nights off to sleep and when I restarted it went back to the zero effect like citalopram before it.
 

Moof

Senior Member
Messages
778
Location
UK
I think it's something negative that happens during sleep. For me, it's the mostly the sleep that happens after about six to seven hours that causes the problem – so if I sleep beyond 7am on a normal day, my ME symptoms will reliably increase by 50%. It's nothing to do with sunlight, though, so if I slept from 6am, the 'damaging phase' would just start to kick in around 12 noon. If I get wired-and-tired and miss an entire night's sleep, I feel fantastic the next day.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I have been up for three days and I always get weepy, then I crash hard. If adrenaline kicks in I have a really hard time sleeping for a night or two. I get three hours if I am lucky. I try really hard to stay balanced in everything.

When I was younger I did not suffer from sleeping too long. Now my mind, body and emotions are best if I sleep 6 or 7 hours. If I sleep longer I have bigtime problems with a sore throat and sneezing, blowing my nose for an hour and sluggish as hell. I get up at 5 am and practice perfect sleep hygiene and it is helping all my symptoms. Still have CFS though. I don't have PEM as often. Last time I pushed myself I got bronchitis... AGAIN.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
Well I slept after hour 61 for about 9 hours. Feel not too bad (touch wood). I'd taken 5mg valium an hour or two before which is cheating in my opinion…