Fatigue: late night or early morning type?

[Jonathan Edwards]

Thanks for flagging that up Sasha. I might get there, but it is a long way for a day trip.

 

[lookinglass]

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 the best description doesn't include the word fatigue at all. I describe it as waking up 'in lead boots.' plus an aching along the back of the shoulder line, emanating from the top pf the spineI. I guess one would say it's a feeling of complete 'exhaustion of every cell in one's body.'
I have had 8 years of it from severe to mild with blessed good months in between. The latest episode included fainting suddenly from POTS. Nausea and bowel issues always add to this virus, or whatever the damn thing is.

 

[lookinglass]

Not wanting to overload you with more information but all the talk of batteries triggered some memories.

Back in the 'old days', when I was a lad getting up early in the freezing cold to deliver papers for £1 a day, I carried a tape player and of course, as they actually had to turn the cassette tapes they took a lot more power than modern MP3 players. I always used to be running out of battery power and often carried spares, but at times forgot. When that happened I had a few tricks to get that last bit of life out of the batteries. Swapping them around sometimes worked for a little while. Then when it got more desperate I could leave them for five minutes and miraculously I might then get another few minutes of juice out of them when I turned them back on, but they would do things like play at a slightly slower speed, which made the music sound funny. Then when I got really desperate I'd switch it to radio which required less power, but the signal wasn't great. When that died I had to walk on in silence. When on low batteries I also avoided any rewinding or fastforwarding of tapes as this really used up the juice. So i really had to adapt my behaviour to manage the energy and get the most out of it.

But if the next day I had forgotten to replace or recharge the batteries, I'd turn it on and I'd have a couple of minutes of magic juice that had appeared from somewhere, and I wouldnt remember that I needed new batteries till I'd walked a little bit down the road from my house then it would die on me, I'd remember, and annoyingly have to walk back home to get new batteries.

I don't know how this is relevant really, but it came to mind when I thought about my ME batteries being low. I guess with ME, maybe its like this all the time, that at best I am running on miniscule amounts of power each day and just trying to get something functional out of what I have left, having to pick carefully what I do and dont do. The batteries never get properly recharged. I'm just running on residual power.

Isn't this where the Hypothalamus comes in? It's not working because it's stuck in Alert.. That's one theory that makes sense.

 

[lookinglass]

P.s. We must, Must, MUST change the name. Fatigue cannot be in there. I have no solution really, but please let every CFS agenda, at every advocacy project bring this up.

If you want to feel even worse, read the comments section in the wonderful Washington Post article. It's the name that is giving the idiots the fodder they need to make their ignorant and cruel comments.

How about CCE 'Chronic Cellular Exhaustion'

 

[Gingergrrl]

I read an article this morning which led me to create a new term: "Complete neuro immune and cardiac power failure."

In my case, it is like all the power (electricity) went off in the bldg and I am forced to light a candle that illuminates only one tiny area. The candle keeps burning out so I have a very limited amount of power for a very limited amount of time and once it is gone, it is gone.

 

[soxfan]

I have to say that I mostly experience just fatigue...it can be different kinds of fatigue which include drowsy...malaise...heavy...or just tired. I almost never feel a "sick" fatigue. But I do agree that the word "fatigue" does not describe this at all.

It is not a good feeling tiredness but rather one that resting does not seem to satisfy.

I along with many others before my illness would be able to push through a normal fatigue which would include a poor nights sleep...getting up early for a flight...or running too much. Now I can't "push" through the fatigue most days. I also seem to feel better at night which maybe has to do with the fact that I will be getting into bed soon.

I do have those random "crashes" when it feels like the life has been drained from me but I feel lucky in the fact I don't have them often...

For me this illness it is the fatigue that limits my life...

 

[DaisyRuth]

Personally, for me it's more like walking through mud with weights on my arms and legs after consuming twenty cups of coffee, because no matter how alert or willing my mind may be, the body isn't able to move any faster than a snail on barbiturates.

 

[duncan]

The way the question is worded, Dr. Edwards, suggests to me that somehow you are associating ME fatigue with sleep. For many of us, I would wager the feeling is irrespective of sleep, or at best coincidental. When I say coincidental, I mean some of us were morning people before we got ill, some night people. That remains more or less the same, except with the onset of the disease, a global pasty film covers every facet of every day.

For me, it is more of a weakness, the same that would come with a bad case of the flu. A weakness that is inescapable and pernicious and without bias toward body part or function. A weakness that can occur any time - the same sort of crushing weakness one feels immediately after vomiting for ten minutes. It is difficult to move. You don't want to speak. You just want to lie there and endure.

There are degrees. Stretches that are what they are. But sleep is just another impaired function, similar to the inability of my leg muscles to function as they should to push me up from my chair, or my brain's inability to multitask or anticipate. And fatigue, ironically, just another impaired qualifier.

 

[Dr Speedy]

No fatigue at all but severe muscle fatigue

 

[optimist]

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?

Since getting "fatigued" 3.5 years ago I can say that the word is not enough. It is said that the inuits have 50 words for snow (perhaps more of a cliché / myth than truth?) and I suppose we should have 50 words for fatigued too. There are so many differences and varieties, and most which I never experienced in my whole life before getting sick.

It can be like having sand in the brain while being covered with a big heavy blanket of led. At the same time the body is all stressed up, but as soon as you want to do something you're just not able.

Other times it feels like you haven't slept for couple of days, and when you lie down to rest it is like the switch where you turn on sleeping has been misplaced, and you get even more stressed up from lying down, so you just sit back up again wanting to lie down...

It can feel like both of your suggestions too, but that's just a drop in my experience...

 

[alex3619]

Other times it feels like you haven't slept for couple of days, and when you lie down to rest it is like the switch where you turn on sleeping has been misplaced, and you get even more stressed up from lying down, so you just sit back up again wanting to lie down...

This is one of my big issues. Or if I sleep, its for a short time. Yet every now and again I will sleep the day away unexpectedly. Recently this has manifested as me sleeping for one or two hours, then waking up and being unable to sleep, so I get up for a bit. Sometimes though, and this is unpredictable so far, if I stay in bed I will eventually fall asleep again and snooze for another few hours ... so I just repeat that a bunch of times if I am in that situation.

 

[soxfan]

I am finally sleeping really well after years of poor sleep but it doesn't make me feel any better. I still wake up feeling tired and the fatigue only gets more intense as the day goes on. It gets much worse if I socialize or do errands but if I say go out for a walk it won't worsen. There are days I can walk 3 or 4 miles and have no problem.

I have some degree of fatigue every minute of every day. Some days worse than others but for me it is all tied in to my mental capacities and stress whether good or bad.

 

[Sherlock]

like being poisoned

 

[Wally]

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?

@Jonathan Edwards,

A simple response from a smart patient.

My worst fatigue is often in the early morning hours between 4:00 am to 10:00 a.m. The symptoms will ease up a little bit, but they will come raging back later in the day if I am too active. I will then be left with the same type of early morning fatigue plus the feeling of my brain being "wired" while stuck in overdrive.

What does the fatigue feel like to me.
1) It feels like I have been poisoned.
2) It feels like my blood has been drained from my body and replaced with lead.
3) I feel like I am wearing cement boots.
4) I feel like I have been hit by a "Mack truck".
5) I feel like I have bone crushing fatigue.
6) I feel like I would sell my soul for just a few hours of deep sleep.

(Note - A "Mack truck" is one of the oldest builders of heavy duty trucks in the US.)

Wally

[Edit - No matter what words I try to use to explain the type of fatigue experienced from this illness, it never seems to be descriptive enough to explain that this particular type of fatigue is unlike any other type of fatigue I had experienced prior to becoming sick with this illness.]

 

[Antares in NYC]

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?

Interesting question; difficult to answer.

I would say it's closer to the beginning of an early day... if you didn't have any sleep for days, under the weather with what feels like a flu, and had a terrible hangover. Something along those lines.

I wouldn't call it "fatigue" either; it's more like being completely drained of any physical or mental energy, mixed with the general sense of malaise and the awful cognitive impairments. In a way sometimes it feels as if I didn't fully woke up, like I'm stuck in a middle stage between awake and deeply asleep, not fully conscious, not fully there. Scarecrow described it well as "the feeling of being in a permanent semi-stupor".

 

[Antares in NYC]

like being poisoned

Funny thing: the first week I had my initial ME crash I thought I was poisoned!
Somehow I knew this was more than the flu, more than the usual sensation of being sick. Something felt completely off, given the severe cognitive and memory problems, plus the weird visual disturbances, light sensitivity, crushing fatigue, vertigo, headaches, etc...

 

[soxfan]

I have that same feeling of being completely drained of mental energy but that always sends my body into this horrible wired and overstimulated state when nothing calms my insides down and I feel like I have been short circuited. It is such a horrendous feeling.

But I also have just the plain old tired feeling that never goes away...

 

[mermaid]

@Jonathan Edwards only just found this thread...

Recently I have been improving, especially with immune issues and with energy levels, but to reply to this question, I definitely like many others feel worse as I wake, rather than as I go to sleep. It feels like I am just not firing on all cylinders.

I thought this might be worse due to being hypothyroid and taking T3 only - perhaps waiting for the morning T3 to kick in but I realise now as ukxmrv suggested I think that it's more likely due to low cortisol though I have tried to improve this.

I am interested that though I am improving generally, I am getting worse migraine aura now and very often this starts as I wake. After a migraine aura attack I often feel as if I have been brain damaged (research last year showed tiny lesions in the brain detected apparently), and I am clumsy and uncoordinated perhaps for 2 days afterwards, and lacking in energy. This has to be related to the brain in some way..

My aura triggers can be due to overdoing things, or fighting off a cold virus, so maybe I get them due to draining my energy batteries. The Migraine Trust suggest trying magnesium, CoQ10 and B2/riboflavin, to help, as trials have been done that show improvement for some. All interesting as I am taking these already for the ME symptoms.

Like others I often feel pretty normal at bedtime as don't really want to sleep at all.

 

[August59]

I'm to the point that I hate the prospect of going to sleep because waking up is a horrible experience everyday. When I say my day, which directly correlates with my cortisol curve. I can take zolpidiem at 10pm and read a book for 4 hours. I can take a 10mg Adderall at 8 am and sleep like a baby till 12 noon, but from 12 noon until 4 pm is physically the worst part of my day because I'm awake, but I exhaust myself by exerting so much effort just trying to get muscle groups to move that used to be an almost voluntary movement!

SNAFU!!!!

 

[Aurator]

I would say it's closer to the beginning of an early day... if you didn't have any sleep for days, under the weather with what feels like a flu, and had a terrible hangover. Something along those lines.

Yes, that reflects my own experience.
Many of us probably remember the Tom and Jerry cartoons. Tom would regularly have some horrendous collision with a heavy object, having a house fall on him or getting hit over the head with a giant mallet, for example. Sometimes, just after that had happened, he'd stand there motionless and his whole body would suddenly develop thousands of hairline cracks all over it like he was a ceramic vase, and then a moment later the hitherto still cohering Tom would shatter violently into tiny fragments. The fatigue of M.E. feels like Tom would have felt in that moment between the collision and the violent disintegration. It sometimes feels like only sheer strength of will stops the disintegration from actually happening.
It's certainly significantly different from the fatigue that comes after running a marathon, say, or from being sleep deprived.