Fatigue: late night or early morning type?

[alex3619]

Tired and wired versus exhausted verses sleepy are all different phases in my opinion. I have experienced each of them, and more. I have seen, in an experimental program for which I was a subject, that dietary changes alone can shift these patterns, and rarely even fix them or partially fix them. I have written about this before. Though I am not saying this is about diet alone.

Over time I have also had long stretches when I was one type or another. Mind you I am talking years of one, or years of another, though they can also happen over hours or weeks.

By sleepy I mean things like mental and physical exhaustion from sleep deprivation, on top of the other ME symptoms. Also for some years I have experienced something that resembles narcolepsy, yet isn't. I would suddenly start to fall asleep, no matter where I was or what I was doing, and my body would start to slump, my head fall, and then I would have a sudden response and jerk awake. This was unpredictable, and only a nap would fix it once it started as it would repeat again and again until I had that nap.

When shifting to thinking about fatigue in cognition, its suddenly a whole other problem. I will repeat something I wrote to someone just a few minutes ago:

I have enough cognitive limitations to load a flotilla.

Some years ago I started writing a book on babble and medical failure. For most of two years now its essentially on hold.

For years I wrote detailed technical referenced blogs. Now they are opinion pieces for the most part.

I used to be a book-keeper. I have also studied university level math. I have experienced times when I could not count to 3, and anything to do with numbers exhausts my brain in seconds. I can do stuff, rarely, in bursts, but not for long.

I do not multitask. Even when I was a mild patient this was a problem. It takes all my attention to do anything. However I discovered over the years that when I am on a roll I can very fast serial task. That is, do one thing, then switch, then switch back, etc. Most of the time I cannot do this though.

I don't handle 3d geometry. How can I not see how to open an open plastic bag?

There is something wrong with planning execution. I can name all the steps in a complicated plan to do something. Yet when I try to do it ... how do I do step one? Stumped.

I love adrenaline based computer games. I also get very nasty responses to them. So I cannot play them. Which sucks.

What I do is use what capacities I have left to the fullest. As capacity changes so do activities.

I also pace and switch mental activities. Different activities throughout the day.

 

[Marco]

Just occurred to me that what I and several others describe is like a shutdown of all the superfluous (social, cognitive, active) functions to 'protect' the vegetative and essential functions associated with the brainstem or 'reptile brain'.

I wonder if there's any relationship with reduced cerebral blood flow?

 

[Sushi]

@Sasha, Believe it or not, I actually did not know this! I have orthostatic intolerance now (or some form of it according to my new cardiologist) and doing anything that involves lifting my arms above my head is probably the most difficult of everything that I do. For example putting a plate into the microwave (which is above my head) or trying to blow dry my hair lead me to become short of breath. Even if I try to blow dry my hair while seated it is the same, so I didn't make the connection b/c I am not standing. Do you know why this occurs?

Activation of arm muscles, especially when upright (when reaching upwards, washing dishes, ironing clothes, and pushing a lawnmower), may increase cerebral symptoms of orthostatic hypotension by a subclavian steal-like syndrome by further reducing vertebral and thus brain stem blood flow.

AUTONOMIC DISEASES: CLINICAL FEATURES AND LABORATORY EVALUATION
Christopher J Mathias J Neurol Neurosurg Psychiatry 2003;74(Suppl III):iii31–iii41

 

[Valentijn]

Sounds more cruel than cool to me!

All of the people (claim to) have some sort of survival experience, so it's not too bad. Though I think there was a case of malaria or similar for one woman, and a crew member got bitten by a venomous snake elsewhere. Mostly it's just a survival show, without all the gimmicks and freebies they get on "Survivor" or "Man vs Wild", etc. And the added difficulty of figuring out how to deal with the sun, rain, or cold.

 

[MeSci]

During the initial phase of my ME (sudden onset) I slept many hours per day and felt sleepy-tired - as one does with a cold / flu / mono. After that early period, my "fatigue" transformed in nature.

This change was part of a broader symptomatic metamorphosis I gradually underwent - an experience that ties in with the hypotheses of Lipkin & of Cheney that there are different chronological stages of ME. (Maybe only some ME's involve stages?)

Subsequent to that early stage, my illness-related "fatigue" has been somewhat like waking too early in the morning; it is nothing like healthy late-night tiredness.

Maybe a better analogy would be waking too early after a massive day of physical exhertion and a night of drunkenness.

My current "fatigue" changes during the day. I feel terrible upon waking in the morning. I get into strife if I try to get up and do things in the first couple of hours after awakening. I don't get sleepy in the evenings - this is when I feel least "fatigued". And if I do a lot during the day, I'm likely to be wired-but-tired in the evening, which makes it extremely difficult to get to sleep.

Echoing the comments of others, my "fatigue" is quite different to anything experienced pre-ME.

Mine varies. I too had a very sleepy phase in the early days.

Now I commonly take ages to wake up properly, and feel woozy and bleary-eyed for a couple of hours. But occasionally I wake feeling fresh, positive and quite energetic. Even then I know that I still have to be careful, as my energy is limited. But the amount of limitation varies a lot, and sometimes I can get away with more without getting PEM.

Then there is the difference between energy and strength. Some days I feel strong, but lack energy. I can lift a heavy object but tire quickly - I call these fatiguable days.

Other days I feel energetic for most of the day. I'm not sure if I have energetic-but-weak days. I do have non-energetic (fatiguable), weak days. On such days I tend to feel run-down/'under the weather', or worse, so guess that it is PEM.

On worse days, malaise definitely describes it: nausea, mild head- and neckache, low mood, cramp-like feelings, twitching, extreme perceived temperature swings, loose bowels, sinus congestion, sometimes hiccups, etc. And as others have mentioned, the worse I feel, the worse I often sleep, producing a vicious cycle. One good night's sleep is transformative, and I wake with a smile, a contented sigh and a luxuriant (cramp-free) stretch.

 

[Marco]

Tired and wired versus exhausted verses sleepy are all different phases in my opinion. I have experienced each of them, and more.

I agree Alex - my own theory is that the latter inattentive stage is a more severe or later stage. Some evidence for the same transition from hyperactive to inattentive in ADHD.

 

[Sasha]

Believe it or not, I actually did not know this! I have orthostatic intolerance now (or some form of it according to my new cardiologist) and doing anything that involves lifting my arms above my head is probably the most difficult of everything that I do. For example putting a plate into the microwave (which is above my head) or trying to blow dry my hair lead me to become short of breath. Even if I try to blow dry my hair while seated it is the same, so I didn't make the connection b/c I am not standing. Do you know why this occurs?

This says it's because of venous pooling:

http://bestpractice.bmj.com/best-practice/monograph/972/diagnosis/step-by-step.html

Same here - drying my hair is a killer. I do it a minute at a time, with breaks in between.

 

[alex3619]

I agree Alex - my own theory is that the latter inattentive stage is a more severe or later stage. Some evidence for the same transition from hyperactive to inattentive in ADHD.

I have been sick for decades, so this hypothesis is consistent with my experience.

 

[alex3619]

This says it's because of venous pooling:

http://bestpractice.bmj.com/best-practice/monograph/972/diagnosis/step-by-step.html

Same here - drying my hair is a killer. I do it a minute at a time, with breaks in between.

I think this is possible. In the 90s, as only a mild patient, I had to give up hanging up my clothes to dry on a line. Instead I use a clothes dryer ... the same one actually, 20 years old, and still going.

 

[alex3619]

Just occurred to me that what I and several others describe is like a shutdown of all the superfluous (social, cognitive, active) functions to 'protect' the vegetative and essential functions associated with the brainstem or 'reptile brain'.

I wonder if there's any relationship with reduced cerebral blood flow?

Cheney made similar comments over the years. He likened CFS and ME responses to heart failure responses. Capacities shut down to preserve essential things.

 

[Hip]

I used to see an autonomic specialist who kept up with all the conferences and literature on dysautonomia. He, himself, has POTS. From his research, he had learned that there was "a problem" with the reticular activating system in the brainstem--sorry I can't remember more. He felt that this was why drugs like adderall gave temporary help to patients.

Sushi

Very interesting Sushi.

I think that ADHD drugs like Adderall and Ritalin may boost reticular activating system function. I wouldn't mind trying these drugs, but I understand it's not easy to get your doctor to agree to prescribe them.

 

[alex3619]

Very interesting Sushi.

I think that ADHD drugs like Adderall and Ritalin may boost reticular activating system function. I wouldn't mind trying these drugs, but I understand it's not easy to get your doctor to agree to prescribe them.

I know patients who have done this. The usual story is it works ... but then induces a crash. So they use it for days when they really have to do something, but not all the time. Maybe we could run a poll?

 

[Hip]

@Hip this makes so much sense (the brain stem/vagus nerve theory) and it matches my experience with all of my autonomic functions being out of whack since getting ME/CFS. Is there major research being done by any of the experts right now on the brain stem/vagus nerve theory?

Michael VanElzakker, who proposed the vagus nerve infection theory of ME/CFS, is unfortunately currently busy doing PTSD research, which is his main area. He was just moonlighting in ME/CFS research, as a result of one of his friends who developed ME/CFS. I know there was quite a bit of excitement about his vagus nerve infection hypothesis among some researchers, but I don't know if anyone is taking it forward at the moment. It would require postmortem studies, as I understand this is the only way you can test to see if the vagus nerve is infected.

I think Michael VanElzakker is kind of flexible regarding his hypothesis: he proposes that a vagus infection is causing sickness syndrome, which he thinks underpins ME/CFS; but I imagine that he might find the idea of a brain infection causing sickness syndrome another good possibility. It could be both. Viruses may infect the vagus nerve, and also travel along the vagus nerve and infect the brain. So you would have both the brain and vagus infected. Enterovirus have been shown to be able to infect astrocyte cells in the brain, and the stem cells (progenitor cells) in the brain.


The only researcher I am aware of who is currently doing brainstem research is Wyller.

 

[Gingergrrl]

@Hip Thank you and I'd totally forgotten that I had read about Dr. Van Elzakker's vagus nerve research. These things just do not stay in my brain LOL.

 

[Hip]

I know patients who have done this. The usual story is it works ... but then induces a crash. So they use it for days when they really have to do something, but not all the time. Maybe we could run a poll?

Interesting Alex. I wonder if the crash was a direct result of the drugs, or if the drugs just made them feel more energetic, so that they then overexerted themselves, causing post-exertional-malaise and a crash.

I was looking around for other (non-stimulant) drugs that might boost the reticular activating system, but I couldn't find any (although there suggestion that psychedelic drugs like LSD may boost the RAS — not really the answer to treating ME/CFS though).

 

[alex3619]

Interesting Alex. I wonder if the crash was a direct result of the drugs, or if the drugs just made them feel more energetic, so that they then overexerted themselves, causing post-exertional-malaise and a crash.

I was looking around for other (non-stimulant) drugs that might boost the reticular activating system, but I couldn't find any.

Hmmmm, purely anecdotal speculation, but I think its because they get their exhaustion masked, and do too much.

 

[Sushi]

This says it's because of venous pooling:

http://bestpractice.bmj.com/best-practice/monograph/972/diagnosis/step-by-step.html

Same here - drying my hair is a killer. I do it a minute at a time, with breaks in between.

Did you ever try bending over and resting your elbows on the bathroom cabinet while holding the hair dryer?

Incidentally, right after posting about raising our arms, I stretched way up to open an window and immediately felt faint!

Sushi

 

[Sushi]

I know patients who have done this. The usual story is it works ... but then induces a crash. So they use it for days when they really have to do something, but not all the time. Maybe we could run a poll?

I was prescribed a very low dose of Adderall. Adderall is 4 amphetamine salts with different half lives while Ritalin is one (if I am remembering correctly). So Adderall tends to let you down very slowly. I didn't feel a crash but I only took about 3 mgs.

Sushi

 

[Gingergrrl]

Interesting Alex. I wonder if the crash was a direct result of the drugs, or if the drugs just made them feel more energetic, so that they then overexerted themselves, causing post-exertional-malaise and a crash.

I was looking around for other (non-stimulant) drugs that might boost the reticular activating system, but I couldn't find any (although there suggestion that psychedelic drugs like LSD may boost the RAS — not really the answer to treating ME/CFS though).

@Hip or @Alex Wouldn't this class of drugs (stimulants) like Ritalin or Adderall cause tachycardia? I always felt they were not an option for someone who already has POTS or unexplained tachycardia. I have no judgement against the meds (or really against any meds!) they just scare me for that reason.

 

[Gingergrrl]

Did you ever try bending over and resting your elbows on the bathroom cabinet while holding the hair dryer?

Incidentally, right after posting about raising our arms, I stretched way up to open an window and immediately felt faint! Sushi

@Sushi, between carrying the bucket of rocks and opening windows, you need to rest LOL. And re: your first question, I am very blessed that my step-daughter often blow dries my hair for me so I rarely have to do this myself. But when I do, it is extremely difficult.