Fatigue: late night or early morning type?

[gregh286]

This ok ish at night and brutal in mornings is the most annoying aspect of this crap.
I was having a decent spell of 7 days until night before last.

Distinctly remember having bad nightmares and panicky style dreams.
Woke up next day after 8 hours sleep absolutely mangled.....with physical symptoms....dry mouth....puffiness...numbness and tingling.
There was a theory on cytokine storms in hyperarousal dream state.
Seems to tick a few boxes in my case.

 

[digital dog]

Woken from anaesthetic fatigue. Drooling type fatigue sometimes.

 

[digital dog]

Also it is not a fatigue that 'normal' people can really appreciate. I have had so many friends (and I know that almost everyone on here will have had this too) tell me that they get tired too, that they have times of exhaustion. Well to be honest, their exhaustion would be my boundless energy.
I honestly think a lot of 'normal' people could have a bad cold, be up all night and have run and marathon and have MORE energy than me some days.
I'm not trying to discount peoples' suffering but I honestly don't think people have a clue just how debilitating and all encompassing our lack of energy is.

 

[digital dog]

I may be wrong but is the Jonathan Edwards who started this thread the one conducting trials for Rituximab?

 

[digital dog]

Oh what I'd give to experience that sleepy, dreamy, relaxed feeling. Not for twenty years.
I had a friend say that when she used to stay up in the night revising at University she actually liked the disorientation and sleepiness. She said this when I was in the throws of being bed bound with fatigue and experiencing profound insomnia too.
If I could have a pound for all the doctors that have told me that Margaret Thatcher only needed three hours sleep and she was never tired, i'd be a very rich women.
Normal people will never get it...unless they come down with this.
Sorry, rant over.

 

[gregh286]

True digital.
You have to experience it to believe it.
Its a complete body...mind and emotional power outage.
Tiredness.or fatigue completely undersells it.

 

[digital dog]

I don't think there is anything crueller than being so fatigued that you feel like you are going to go mad and then not being able to sleep. This to me is the worst part of ME. The agony of exhaustion where I could scream and bang my head against the wall and then the pain of not being able to sleep to escape it.
Oh my goodness, the hell we inhabit on a minute to minute basis is indescribable.

 

[Scarecrow]

I may be wrong but is the Jonathan Edwards who started this thread the one conducting trials for Rituximab?

Yes, he's advising on it. He's also one of Phoenix Rising's directors.

 

[MeSci]

If I could have a pound for all the doctors that have told me that Margaret Thatcher only needed three hours sleep and she was never tired, i'd be a very rich women.

Any doctor who tells you that some people only need small amounts of sleep is an idiot. Lack of sleep is bad for your health.

 

[digital dog]

The only people who say that we need a small amount of sleep are the ones that have never had a bad night in their life.
WAY TO GO JONATHAN EDWARDS!!!! Keep up the good work.

 

[BurnA]

A simple question from an ignorant doctor. I got up at 4.00 to drive someone to the airport. That set me wondering. Is the fatigue of ME like the end of a long hard day or more like the beginning of a day that should never have started yet? For me the second type is more unpleasant.

Or is it like neither of these?

For me it's neither but would be more like a day that shouldn't have started rather than end of a day. In fact I would love to feel the fatigue I used to feel at the end of a day and then get into bed and sleep. Nowadays I generally feel better at the end of the day ...not sure why, maybe its cause I know I survived another day or maybe because I know even if I was healthy I wouldnt be doing anything at that time of the evening so I feel kinda like a normal person for an hour or two.


Generally it's a tiredness with no energy to do anything. I am in a go slow mode physically and mentally. I don't feel like I want to sleep but I do yawn continuously during the day.
Everything takes a lot of effort to do. Imagine trying to do a crossword or sudoko at 3 in the morning without having slept, after a glass of wine , with a headache...that's the type of effort needed to do the basic things.
Its not described by 'fatigue'.
Add in the soaring heart rate after any physical activity, the breathlessness and the dizziness and you begin to get the picture.

BTW I am mild apparently.

 

[MeSci]

For me it's neither but would be more like a day that shouldn't have started rather than end of a day. In fact I would love to feel the fatigue I used to feel at the end of a day and then get into bed and sleep. Nowadays I generally feel better at the end of the day ...not sure why, maybe its cause I know I survived another day or maybe because I know even if I was healthy I wouldnt be doing anything at that time of the evening so I feel kinda like a normal person for an hour or two.

Quite a lot of us feel better late in the day. My theory is that it's due to the reverse diurnal cortisol secretion pattern that some of us see to have, or else an abnormal response from cortisol receptors. A boost of natural cortisol activity/response would damp down some of the inflammation we may have, and some of the excessive immune activity.

Can't remember if we've discussed this in this thread before or not.

 

[barbc56]

There's a term called eustress.

... eustress is quite literally a good form of stress that can actually incnorease our performance at a task and our general happiness and sense of well being

.http://study.com/academy/lesson/what-is-eustress-definition-examples-quiz.html

The exhaustion we feel is not what I call "eutired" or even the normal tiredness one has to endure once in a while due to the stress of everyday living.

It's an all encompassing feeling of exhaustion that literally goes down to your bones. Sometimes I can even feel it during a light sleep. Anyone else feel it in their sleep?

Barb

 

[gregh286]

Quite a lot of us feel better late in the day. My theory is that it's due to the reverse diurnal cortisol secretion pattern that some of us see to have, or else an abnormal response from cortisol receptors. A boost of natural cortisol activity/response would damp down some of the inflammation we may have, and some of the excessive immune activity.

Can't remember if we've discussed this in this thread before or not.

Ive tried photoserine before.....300mg.a.day....keeps cortisol really supressed......its takes ages to get going in morning but you have less fatigue once youve been up for an hour.

 

[meadowlark]

In my case, the lack of energy through ME/CFS cannot be described by the word "fatigue"-- either the "morning kind" due to lack of sleep or the type you feel after a long, tough day. Fatigue implies that energy exists, at different levels of supply: fatigue after waking early implies that the energy hasn't had time to build up to its usual level, and fatigue in the evening implies it's running low and must replenish itself. For me, there's nothing to have more or less of in the first place. There is no there there.

I usually turn to metaphors, E.G: Wet matches, wet paper. You can describe those things in certain ways, but not in terms of lighting a fire.

Sometimes I feel that there is no adrenalin in my body. It feels like it's been replaced by water.

Looking at my symptoms more generally I'd say that I'm best first thing in the morning (for an hour or so) and after the sun goes down. (I am mostly apartment-bound, and bedbound part of the week.)

 

[Ellie_Finesse]

A simple question from an ignorant doctor. I got up at 4.00 to drive someone to the airport. That set me wondering. Is the fatigue of ME like the end of a long hard day or more like the beginning of a day that should never have started yet? For me the second type is more unpleasant.

Or is it like neither of these?

For me its a mixture....... Most of the time it feels like I have had no sleep, eyes are extremely heavy and will feel like that from the time I get up in morning. My body feels heavy but the main symptom I have feels like I have been doing hill training on my bike. A slight ache in thighs with legs and body feeling extremely weak, like jelly. Most of the time I manage but when its really bad I can't hold myself upright.

 

[Hutan]

For me when things are bad I think it's like being in the mountains at high altitude, after hours of trudging upwards. I can't engage in complex thinking, just simple repetitive things. My limbs are heavy and every physical movement takes a conscious decision and use of willpower.