Fatigue: late night or early morning type?

[Marco]

I seem to be in a minority in that I rise early feeling the best I will all day but deteriorate as the day goes on.

I can think of two 'normal' scenarios that might be close to what PWME experience - both childhood experiences - perhaps a more pure experience compared to adults as kids don't feel the need to 'conform to a role'.

First the awful listless lying on the sofa with a basin beside you just in case associated with childhood bugs where the days just drag and every noise etc is amplified. Not necessarily with the same degree of nausea but the same prostrate exhaustion.

Secondly (anedotally), back during the 1970 football world cup (I think) the BBC would show the matches in the evening followed by a double bill of old Hammer horror movies which I loved. Some weekends, despite being highly motivated to stay up, it would get to the stage where the eyes would droop, legs start twitching, start getting cranky and I'd have to call it quits. Possibly similar to Jonathan's late night after a hard day but I think kids just crash quicker and harder.

Some other distinctions I think between normal and ME fatigue :

As has already been mentioned, many of us wouldn't describe ourselves as feeling 'fatigued' or 'sleepy' on an ongoing basis but we do suffer from easy physical and (especially) mental fatiguability or a severe lack of stamina.

An associated point is that the examples of a very early trip to the airport or post general anesthetic fatigue are very specific and exceptional in that they're situations you don't encounter every day. With ME/CFS we're talking about exhaustion (of both types) associated with the very trivial tasks of everyday living.

Jonathan made a useful point about the cognitive/psychological (and dare I say social) response to these situations. As a healthy person you can dismiss feeling grotty after dragging yourself out of bed at 4am safe in the knowledge that a good night's sleep will sort you out. Likewise feeling grotty after a general anaesthetic is probably to be expected, worth it if the surgery was successful and hopefully unlikely to be repeated in a hurry. For PWME to experience very similar of exaggerated symptoms in response to everyday living (every day being the problem) is not only difficult for others to understand but understandably debillitating over time (try planning something a week ahead when you can't predict how you'll feel in ten minutes time).

There's also the speed of onset of 'fatigue'. Pre-ME I was a regular swimmer (60 lengths of a 25m pool or 1.5km every day if I calculated that correctly). I can recall that fatigue would build up gradually and some days you started counting down the last 10 lengths or so). For me the exhaustion now hits like a brick wall. One minute you're doing fine and the next it's total mental and physical collapse and very difficult to predict.

Some processing mismatch in a brainstem area like the reticular activating system sounds plausible but its tempting to equate 'fatigue' with reduced arousal whereas at least a substantial minority of us 'wired and tired' types seem to suffer from over-arousal as evidenced by sensory hypersensitivity and the inability to switch off at bed time. Perhaps there are two or more sub-groups as suggested by the large Japanese study that found two distinct groups (children) that had either hypo or hyper CNS responses to stimuli that they equated with 'dementia' and 'nervous/phobic' respectively.

Sorry for the ramble but I'd also add that until recent years I used to also experience occasional spells of suddenly feeling pretty much 100% well for a few hours and of course I'd then do something fun and bugger things up again.

Interesting discussion and thanks for asking the question.

 

[NK17]

Oh boy @Jonathan Edwards has opened THE can of worms and by releasing the worms we're faced with the F word and subsequently with the task of describing with other words what it feels like to have ME.

First thing first I refrained from posting yesterday in the evening, before going to sleep, because I absolutely wanted to try to catch and describe what it feels like to wake up in a broken body, day after day after day.

I'll try to describe from live mode the sensations and subsequent messages that my ME body sends to the brain:

Wow I slept a good 7 straight hours with only the help of a little antihistamine and a minute dose of melatonin.

Before I open my eyes I even recall a few images from some dreams I had last night, recalling dreams is a plus, in fact for many years I thought I'd lost my dreaming capacity.

Then the switch board needs to be cranked up for the body wide check up and that's when I'm faced with the harsh truth:

Oh my I feel a bit sick to my stomach, almost poisoned and my head is achy as if I'm starting to have a headache, my throat feels awful too, my cervical spine my shoulders and arms are tender, I feel poisoned and sabotaged.

I feel like Gregor Samsa in Kafka's Metamorphosis, how is this possible?

Still I get up, but first let me sit on the side of the bed because I should not trust my legs so much, I need to watch out for the dizziness, besides my BP is quite low and on certain days the room starts to spin around.

Getting up means to make a huge effort to ignore that my battery is not even remotely charged, oh well I've done this before, it will be just another day of running on empty.

Everything I'll manage to do, a phone call, e-mails, a load or two of laundry, and fixing breakfast and eventually cooking dinner is like running a hurdle race, where the hurdles are invisible to the naked eye, but they surely feel like little mountains that I have to climb in order to get to another night which then leads to another day with ME.

If I could I would divorce my body, mind you, not the external shell which I've come to love with all its imperfections and quirks that make me human, but from the inner organs and mechanisms which have been dysfunctional for so many years.

As Laura Hillenbrand said: "Fatigue is what we experience, but it is what a match is to an atomic bomb."

For the average Joe I would say that living with ME is like getting the flu, an hangover and some jet lag all at the same time, except you don't have the flu - in fact you're not even running a fever - you don't drink alcohol and you can't leave your house, when you're fortunate enough to still have one.

The cherry on top of the flu like symptoms, the fake hangover and the jet lag is the physical feeling to have been run over by a truck.

Welcome to another day in the life of ME!

 

[justy]

I think this is a great discussion. Sometimes it seems to me as if my experience is exactly the same as others on the boards and at other times completely different.

My 'fatigue' for want of a better word (and the more I think about it the less it feels like fatigue) does appear to follow the pattern of my cortisol levels throughout the day. On waking they are in the normal range and as long as I haven't been overdoing mornings are not great, but not horrendous as some describe. I get up between 7.30 and 8.00am everyday for children and my main feeling at this time of day is not tiredness but a feeling like I have a massive hangover.

I have described this before as like going on a three day bender, taking every substance you can lay your hands on, dancing non stop and not sleeping. This is more of a poisoned leave me alone type of feeling. I also wake up feeling stiff and with joint pain which eases once I get up. In fact these days it tends to all ease off fairly quickly. The only time now this doesn't happen is when I am entering a nasty crash or relapse and then this feeling drags on all day.

Then I lose all energy, become extremely fatigued around mid day - this correlates with a very sharp drop in cortisol levels to way below normal. This fatigue is more of the got to lay down or ill die/pass out type as I have usually been doing things for a while and been upright for a while. This is usually accompanied by a large surge in anxiety everyday around this time which lasts until after I have eaten lunch and rested for a bit.

Around 4 pm to 6 pm is my best time of day - and this also correlates with my cortisol going back into normal afternoon ranges. My mood also improves, anxiety stops, I can chat and cook and help with homework.

Sometime around dinner time I get the got to lay down or die feeling again. Then after eating an evening meal and sitting for a while I feel utterly drained and exhausted but also a little wired, like I have drunk some coffee. At this point I try not to talk too much so often end up watching tv with my kids as we can do this together without me needing to interact too much

By 8/ 9pm I am falling asleep tired. Don't talk to me or look at me tired. In the I have to go to bed by 10pm otherwise I feel so leaden I cant get upstairs to bed and struggle to brush my teeth or read or speak. My evening cortisol is below normal levels.

When I go to bed I am utterly exhausted and cant keep my eyes open. I get to sleep just fine as long as it is before 12 otherwise I cant sleep and get very wired and overtired like a baby and start getting extreme muscle spasms etc in my legs and arms which can go on for hours, or get very very cold and shivery and cant warm up.

I am lucky that I don't have insomnia, but I cant STAY asleep. I wake up very frequently throughout the night. I often wake up feeling very confused. The more ill I am at the time the worse the night time confusion is. It has been so bad that I cant work out not only who I am, but what human beings are - I am completely awake when this happens and aware of my surroundings, although I do not recognise them. If I need ot get up for the loo in the night then the fatigue is another type, I am wobbly and afraid of even trying to walk, I cling onto the bed and walls and pray I don't fall off the loo and will make it back tot he bedroom.

What an essay!! sorry, but couldn't stop once I had started.

 

[liverock]

I

I also think it is a huge mistake to assume that there is nothing to be found on scans or blood tests. There haven't been many consistent results in that area, but there also haven't been large studies using rigorous diagnostic criteria. Additionally, almost no testing is done with patients on an individual basis in many countries, most especially in the UK where the ingrained message is that testing will harm ME patients.

I remember a few years ago just after a bad period, getting a Cell free/DNA test which measures the various amounts of cellular dieoff for various diseases including stroke,heart attack, auto immune diseases and cancer.
My test level was just below somebody on chemotherapy and that sums up how I feel a lot of the time.
It also explains why RichVanK and Freddd's methylation cycle treatments appear to be helpful to some people who probably struggle to make enough new cells with the genetic mutations they have.

 

[Hip]

Yes, the brainstem is an issue. I say it is inflammed and I have no doubt it is infected in my case.

The brainstem is the location of the brain's "USB port" into which the 10th cranial nerve (aka: the vagus nerve), plugs in. That is to say, the vagus nerve terminates in the brainstem. Dr Chia has pointed out that a viral infection in the stomach can travel along the vagus nerve (by retrograde axonal transport), and it takes only three days for a virus to transit from stomach to brain inside the vagus.

So one hypothesis I have is that the brainstem may be infected and thus inflamed as a result of the vagus nerve constantly carrying viruses into the brainstem. Certainly I can myself feel a dull inflammatory sensation behind the nape of my neck, which is where the brainstem is located (I also feel the same inflammatory sensation in my forehead, but that I think is from sinusitis).

Brainstem dysfunction has been found in ME/CFS. Refs: 1, 2

Interestingly, the brainstem is where the reticular activating system (RAS) is centered. The RAS is responsible for controlling conscious awareness in the brain, and given that ME/CFS patients would seem to have a deficit in conscious awareness (in that brain fog appears to be a state of abnormally low awareness), it could be that under-activation of the RAS is partly responsible for this low awareness and reduced consciousness. (If meditation is a consciousness-expanding activity, then ME/CFS seems to be the diametric opposite, a consciousness-reducing disease).

The brainstem is also one of the areas involved in sensory gating (the processes of filtering out irrelevant environmental stimuli), and so a dysfunction in the brainstem may give rise to sensory gating problems. The sound sensitivity problem many ME/CFS patients experience is likely a manifestation of a sensory gating dysfunction. In sound sensitivity, you cannot filter out the irrelevant background sounds, so all sounds enter your consciousness, and you mind is totally overloaded. @Marco has written a very interesting article on the idea that a sensory gating deficit may play a central role in ME/CFS.

The brainstem is also involved in the control of heart rate, blood pressure, autonomic functions — all things that tend to go out of kilter in ME/CFS.

 

[Gingergrrl]

@liverock How do you get a test like that (cell free DNA test) and was it part of a research study? Was there any medical follow-up for the results that you received? Just curious! Thank you in advance.

 

[Hip]

@Hip, I see I have been unclear.

I'm thinking of a specialist I see quarterly who knows I have had a disabling condition he calls fatigue for 10 years and seems very much not interested in a more detailed answer than better/worse/same every time he asks that.

The imprecision of his term fatigue irritates me, although there isn't a commonly accepted better one. Also I don't think a patient with cancer would be asked, 'hows your lump today' by their oncologist.(I'm not trying to be insensitive or about cancer here).

I would like him to appear interested and knowledgeable about my condition, but perhaps I am just easily irritated by medics. And perhaps I am just grumpy tonight.

I am myself a great big grump these days, @OverTheHills, so it's a definite case of the pot calling the kettle black! Prior to ME/CFS I was a tolerant and easy going type, but now lots of things seem to easy irritate me, much to my dismay. Of course, irritability is one of the listed symptoms of ME/CFS, so I guess it's expected. One of the best treatments I found to lower irritability levels is very low doses of the drug amisulpride. Similar drugs are given to autistic children, to treat their often very severe irritability symptoms.


I certainly agree that there is imprecision in the term fatigue, and the fatigue of ME/CFS does not really correspond to the sort of fatigue you feel as a healthy person. My own severe moments of fatigue could be better descried as "a draining of life-force to the point of near death".

I also think that the focus on fatigue as the primary symptom of ME/CFS is wrong. There are many other more important and more disabling symptoms, such as brain fog, sound or light sensitivity, PEM, etc.

 

[Hanna]

I identify with the sentence Marco wrote :
" For me the exhaustion now hits like a brick wall. One minute you're doing fine and the next its total mental and physical collapse and very difficult to predict." Though the term 'doing fine' would be very optimistic.

It has been so tough, that I can't leave my wheelchair anymore when I have to go outside. No matter what time of the day it is, I have ended so many times in the past on the pavement, with no possibility to even sit-up, that my body now refuses to be confronted to this situation.

A stressfull event (should it be physical or emotionnal) will drain my already poor energy out - wether it is 9 a.m or 4 p.m and I spend a great deal of my ressources in avoiding potential offenders of all kinds (people, sounds, lights etc).

My best moments are from 9 a.m to 10.30-11.00 a.m though.
I regain some little energy - or to be more accurate some less exhaustion - in the evening (but not to be compared with 9-11 a.m).

 

[Iquitos]

My debilitating exhaustion is like neither example and I've experienced both. At the time I got this illness, I was in the habit of jogging 10 miles 3 times/week, biking 24 miles the other two weekdays, and hiking/backpacking on the weekends. I even ended up carrying the backpack of my companion on the way back, at times, because he would never agree to begin our return before he became too exhausted to continue. I always had energy left over after any and all of these activities and never felt sick.

The closest I can come to describe the exhaustion now is like trying to walk through a vat of Jello that has set up; or trying to walk on a planet that has 4 times the gravity of Earth. When I was trying to walk for exercise (years ago) I sometimes felt like if I let my head loll back, I wouldn't be able to get it back upright. I once read another patient describe it as like wearing a full-body wader (like for going fishing -- it's up to your armpits) and that wader is full of water; you have to drag that water around with you in order to move at all.

Now I have no stamina at all. In trying to use a screwdriver to get a screw out of the wall, I had to sit down and rest for 10-15 minutes before going back to it for a few seconds. (It was a 2" long screw.) It took me nearly an hour to get it out and I felt wrecked by then and had to go lie down for 20". I left the other 3 screws for another day, or days. Then the next day, my hand, thumb and fingers are all sore from that exertion.

If I walk around much, dragging my right leg and foot, when I lie down to rest later, I get the muscle twitching and buzzing, and sometimes violent muscle spasms in my feet and toes. I even get these "Charlie horses" in my fingers after holding on to a book to read.

 

[Marco]

I identify with the sentence Marco wrote :
" For me the exhaustion now hits like a brick wall. One minute you're doing fine and the next its total mental and physical collapse and very difficult to predict." Though the term 'doing fine' would be very optimistic.

Sorry Hanna - everything's relative.

Funny you mention ending up on the pavement. I'm normally a very socially anxious persons who's last thought would be to do anything embarassing (like dancing) in public.

I've had a number of crashes when out and about and several times ended up slumped on the pavement with no awareness or care about the crowds around me. As I said total mental and physical meltdown.

 

[Marco]

Now I have no stamina at all. In trying to use a screwdriver to get a screw out of the wall, I had to sit down and rest for 10-15 minutes before going back to it for a few seconds. (It was a 2" long screw.) It took me nearly an hour to get it out and I felt wrecked by then and had to go lie down for 20". I left the other 3 screws for another day, or days. Then the next day, my hand, thumb and fingers are all sore from that exertion.

If I walk around much, dragging my right leg and foot, when I lie down to rest later, I get the muscle twitching and buzzing, and sometimes violent muscle spasms in my feet and toes. I even get these "Charlie horses" in my fingers after holding on to a book to read.

My bugbear is lightbulbs. Changing one with arms overhead can be purgatory. I've also found my best friend is now the portable electric screwdriver!

You may also be the first person I've come across that develops a right leg limp/foot drag - for me one of the first symptoms that a crash is imminent.

 

[liverock]

@liverock How do you get a test like that (cell free DNA test) and was it part of a research study? Was there any medical follow-up for the results that you received? Just curious! Thank you in advance.

@liverock How do you get a test like that (cell free DNA test) and was it part of a research study? Was there any medical follow-up for the results that you received? Just curious! Thank you in advance.

No it was just a test I had done as a package with some others that I had done privately about 5/6 years ago. If you google you may find it.

 

[Sasha]

My bugbear is lightbulbs. Changing one with arms overhead can be purgatory. I've also found my best friend is now the portable electric screwdriver!

I expect you know this, but having problems raising your arms about the level of your heart and keeping them there is a problem to do with orthostatic intolerance. I get this too.

 

[Gingergrrl]

No it was just a test I had done as a package with some others that I had done privately about 5/6 years ago. If you google you may find it.

Thanks and I will Google it. Do you feel that having that test added anything of value- either medically or for disability purposes?

I expect you know this, but having problems raising your arms about the level of your heart and keeping them there is a problem to do with orthostatic intolerance. I get this too.

@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?

 

[CantThink]

Everything I'll manage to do, a phone call, e-mails, a load or two of laundry, and fixing breakfast and eventually cooking dinner is like running a hurdle race, where the hurdles are invisible to the naked eye, but they surely feel like little mountains that I have to climb in order to get to another night which then leads to another day with ME.

This is spot on for me. It's relentless - existing not living.. Just getting through minute by minute or hour by hour from one challenge/hurdle to the next with lying down (or in a good moment sitting down) in between. I dread when I'm left alone to cope, although I love being by myself from the perspective of having time to just be and not have to fit around others.

 

[Sushi]

The brainstem is the location of the brain's "USB port" into which the 10th cranial nerve (aka: the vagus nerve), plugs in. That is to say, the vagus nerve terminates in the brainstem....
Brainstem dysfunction has been found in ME/CFS. Refs: 1, 2

Interestingly, the brainstem is where the reticular activating system (RAS) is centered. The RAS is responsible for controlling conscious awareness in the brain, and given that ME/CFS patients would seem to have a deficit in conscious awareness (in that brain fog appears to be a state of abnormally low awareness), it could be that under-activation of the RAS is partly responsible for this low awareness and reduced consciousness. (If meditation is a consciousness-expanding activity, then ME/CFS seems to be the diametric opposite, a consciousness-reducing disease)....

The brainstem is also involved in the control of heart rate, blood pressure, autonomic functions — all things that tend to go out of kilter in ME/CFS.

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

 

[MeSci]

It's actually a really cool show. I watch it and cringe when I try to imagine myself in their position!

Sounds more cruel than cool to me!

 

[liverock]

Thanks and I will Google it. Do you feel that having that test added anything of value- either medically or for disability purposes?

Not really, in fact if I remember rightly a lot of mainstream medical sources didnt think much of the test. It spoke volumes to me personally.

 

[Gingergrrl]

So one hypothesis I have is that the brainstem may be infected and thus inflamed as a result of the vagus nerve constantly carrying viruses into the brainstem.

The brainstem is also involved in the control of heart rate, blood pressure, autonomic functions — all things that tend to go out of kilter in ME/CFS.

@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?

 

[Gingergrrl]

Not really, in fact if I remember rightly a lot of mainstream medical sources didnt think much of the test. It spoke volumes to me personally.

Thanks and I was wondering if a CFS specialist or naturopath (or someone outside of mainstream medicine) would give credibility to a test like this or if it could be helpful for research purposes? It seems like it must show some kind of mitochrondrial or metabolic dysfunction?

ETA: I just Googled it and it looks like it is a maternal test of fetal DNA so I must have the terms wrong!