Exhaustion in ME/CFS, what is it and what causes it - discussion thread

Do you think ME/CFS is likely to be a problem specifically with sensory signalling, or do think it could be some other type of signalling problem?

Can you conceive of any cause/mechanism of ME/CFS that would not be considered a signalling problem?

If there was “something in the blood” that was causing ME/CFS symptoms, would that necessarily mean it was a signalling problem or could there be something in the blood which was causing symptoms which would not be classified as a signalling problem?

 

Not sure I can answer those questions succinctly. There are too many options!

 

I get that, but I’m also mindful that it has seldom been a mistake to underestimate doctors’ ability to understand what is being said with regard to ME/CFS.

There is also another aspect which I think is important to try to convey…

Last year I spent a great deal of time with a family member who was dying of liver failure with what was eventually inferred to be hepatic encephalopathy. If you were drawing up a list of symptoms, or answering yes/no to a list of symptoms, we would probably have looked very similar – fatigue, brain fog, feeling generally unwell, immobility, sensitivity to noise, poor temperature regulation etc. But to anyone with experience of living with both of us the differences were also stark. In particular, his fatigue was quite different. He would feel tired after exertion but there was no evidence of PEM. Also the nature of the fatigue was very different – it made him feel sleepy and lethargic in a way that I almost never am. It also seemed to affect his motivation – he was a highly motivated person who got bored very easily. But his “lack of energy” seemed to demotivate him, as though he was sedated. That is very different to how I feel. My “lack of energy” has the opposite effect. And my perception is that that is the nature of my illness, not a reflection of my character or outlook.

At my worst, when I am “resting” I feel as though I am expending a huge amount of effort because of the intensity of the fatigue, discomfort and pain. It feels as though my body is simultaneously screaming for something it can’t get and also intoxicated by something it can’t get rid of.

An analogy I often use is that when I am “resting” I feel the sort of intensity of fatigue that a healthy person might experience while they were cycling up up a mountain at their limit. I often reach the point where I would have to stop cycling but I can’t because I’m not doing anything. Paradoxically, because doing nothing doesn’t feel like rest or recovery, and I am invariably very uncomfortable, it often requires more psychological effort to rest than to try to be active.

By contrast, my family member’s hepatic fatigue appeared to be more like the sort of exhaustion that one might experience after cycling up mountain or running a marathon. Or the sort of lethargy people experience when they are very drunk. His body seemed to be saying “I’m too exhausted to get back on my bike” whereas by body is screaming “get me off this bike” when I’m doing nothing.


Having written all that, reading this thread reminds me again that my experience is not necessarily common to other people with ME/CFS. Sometime I read comments and think “that’s very like my symptoms” and other times I think “that is very different to me” – not unlike the differences I observed between me and my family member.

I don’t know that I’ve said anything very useful here, but I want to try to convey as much about my experience as I can in the hope that it may help in some way.

Thanks for thinking so hard about this. I wish there were more people with the requisite knowledge and intelligence spending as much time trying to figure it out – and listening to patients.

 

You don’t need to be succinct!

 

My sincere condolences for your loss, Robert. Thank you for taking the energy to write such a well thought out and thorough description — I believe that analogies like the one with the biking race that you used are key to getting people to understand the presentation of our symptoms.

For what it’s worth, I concur that “exhaustion” in ME/CFS feels like actively exerting: for me, payback from exertion manifests itself as burning muscles like I’m pushing them to failure on a barbell of dumbbell exercise (i.e. to the point that I physically couldn’t do another repetition of the movement). I call this the “lactic acid burn” for lack of a better description.

 

Oh my goodness! this this exactly THIS!!!
I often think that i wish i had a word for my so called "resting", because its not 'resting'.... Because this -

Oh this so very much this, it encourages me just to know you are thinking about it Jonathan!

 

One more observation, on eating and energy:

Throughout the course of my illness there has been a noticeable disparity between my calorific intake, my activity and my weight. When I was 99% bed-bound I ate vast amounts (particularly carbs), I barely moved all day, and yet I lost about a 1.5 stones over 7 years from an already low BMI (bottom end of normal range). When I switched to a Keto diet my calorific intake more than halved, my activity levels increased and I put on weight. I’m still very unwell and I’m certainly not recommending a keto diet to anyone (even for me I’m not sure the benefits outweigh the costs) but I do infer from my experience that I may have some sort of problem with carbohydrate metabolism (perhaps due to signalling).

At times during my illness, particularly when I was still on a normal diet, if I had to attend a medical appointment, I would not eat all day before the appointment because eating the first meal in a day took so much out of me. I also find that the more I do (and therefore the worse I feel) the harder I find it to eat. I almost never get hungry but if I don’t eat enough (a lot) the pain and fatigue get out of control.

Again, I’ve no idea if this is common to others.

 

yes exactly, do you know, in 23yrs of having ME i never even articulated that fact even to myself.

@Robert 1973 do you mind if i use your analogy - ie copy yr post print it out (sans the bit about yr family member) show people, such as new carers etc?

 

Yes, I’m very happy for you to print and share anything I’ve written in the public thread.

I’m very pleased that my words resonated with you. I started writing it a couple of says ago and had to take a break, so I’m pleased if it was worth it. The bit you put in bold I almost bolded myself when I wrote it

 

I'm getting confused a bit with all this so I don't know whether it is any help at all. But in trying to communicate things without getting into any medical assumptions I thought of the following

When I'd been diagnosed as moderate I was suggested to go to the gym (I know), and in this story you have to remember I'd be as fit as you can get athletically before I got ill (which was many years back) and was far from 'sedentary' despite being flat on my back most of my time outside work, I had been doing a role that I moved around a lot with and at certain times of year involve eg lifting a lot (sometimes every few minutes) of things during events that were around 10kg weight and talking often for several days in a row (and had started to collapse during this, but had other symptoms way way before this just PEM descriptions were laughed at by those around me). I was on reduced hours and exertion at work and gave it a go. My blood pressure was very low (as it usually is) when doing the induction, so was being somewhat careful (the first I know I'm stupid here - probably so I didn't get chucked out).

I learned from those first sessions that as soon as I finished anything, I mean immediately as soon as I stepped off a machine or put down a weight, I started slow fainting. I must have blindly had to stumble my way during a slow faint back to the changing room to collapse lying flat for ages numerous times (and yes I'm that stupid I went back again). So, having 'learned' for later sessions I got a sugary drink which I downed as soon as I stepped off just in order to get to the next thing and stop this.

Anyway long and short was I was surprised I never got fitter on the aerobic stuff (because that was my background and the machines measure that). The weights made a difference when it was ten reps of very small weights to how my arms looked, and then this disappeared as I upped them. And I ended up having to go less and less and 6months later had a big crash. But the guzzling sugary liquid as long as it was each time I stopped even for a few seconds kept me standing through it.

Stupidly years later I tried this again (but doing less, and only a few times before it was obvious it was stupid as I spent 4hrs unable to hold my own arms so lift any drink to my mouth, so they were balanced on pillow by my chin, which was there anyway to support my arms, with a straw after a certain point as I obviously eventually got so thirsty) but the personal trainer suggested adding salt to the drink so I'd done that, and it had worked better to 'get me through'. Another weird note: at one point near the end of one of these sessions the trainer did stretches on my legs (the strongest muscle for me) and it did the 'judder' which is like 3 sharp 'tugs' and it freaked her right out, but for me it is almost like my muscle saying the count of the wrestlers mat (one, two, three and they're out).

BUT - my point of mentioning this is that now I'm severe if I stand at the stove on a good day eg helping with stirring something for a few minutes then I get exactly the same issue as when I got off those machines. And I can get it if I've sat up for too long, particularly if I've been talking during it. It is quite sudden. It can be far worse than that if I've pushed through on talking even when lying flat (properly going to pass out, sudden vomiting). I haven't actually tried sugary/salty drink at this point (I might if I can work out how so it's doable, I suspect its better to do to stave it off rather than 'rescue').

I can see where if I were to get worse or someone was even more severe this would happen with much less exertion.

The thing is that I can end up in what I assume is PEM from this as well as fatiguability or after-effect where I'm stuck having to be utterly flat and within that then needing to have certain side of face supported by pillow and other parts of body utterly supported sometimes for days (but that's a harder one to work out than people think it is). I have no clue whether anything like that might help for that, or whether something helping me do more sitting up would just lead to more of that.

 

Indeed. There is another aspect also on chewing which healthy people might relate more to which is that they might get jaw ache when eating toffees that they might slowly be pushing through but getting slower and slower (like being on a bike ride and hitting a long steep hill and you hit the different gears and keep pushing the legs to keep going until you are so slow the bike can't stay up) and eventually can't anymore, there is the same with ME but at a much lower 'load' of 'chewing' whether that is fewer sweets with less 'chew' or less 'chewy' food and so on.

 

Quite recently I managed to surprise myself. It was far enough into PEM that I stood up to use the loo and tried to stand still to look out the window. The deep, deep aches (I don't have the words for it right now, but it isn't something I could ever have achieved even in my days of doing ridiculous amounts of sports several in a day) through my feet, calves meant I couldn't straighten my knee and combining this with the way PEM throws off balance meant I fell over just trying to stand for a second. Luckily as I was by the window it wasn't drastic as that 'wall' caught me.

I think when I'm moving there is a bit more forgiveness in not falling over as you use a rhythm although the gait isn't pretty, and of course I'm just banging through catching walls and banisters and furniture to keep me on track and it's been that way for so many years I don't blink an eye at catching a wall or a corner or two.

When I have done stairs with PEM the most painful part was the going down a step on those calves as I held the wall and sort of waddled like a duck.

Here is the weird bit: it doesn't take any active exercise on the legs to get them that way just sitting for long enough and a bit of moving, and it isn't something to stretch out particularly as it completely disappears when the PEM has gone. The pain through my feet is right down the front of the ankle and feels like swollen muscle under the bones of the feet. I get similar with my hands and as that happens even when I haven't used them (central PEM sort of makes both rheumaticky) it's often hard to separate out which bits of those are due to any usage (or in case of legs having them down) at all vs just being something that affects them in PEM that is central exhaustion doing something strange.

 

There are all kinds of ways to qualify and quantify the "exhaustion" in ME/CFS, but, for what it's worth, I think it is just a spectrum of fatigue. The profound disability, ache and discomfort gradually converge toward normal fatigue as you recover, if you ever recover. Likewise, PEM seems to converge toward normal post-exercise recovery. That is my experience, at least.

Personally, I don't think there is anything wrong with muscle or mitochondria. I was able to do 4x100m sprint back in 2010. The only problem, of course, was that I keeled over for weeks. That ME/CFS patients can pedal 10-100w for 10 minutes in 2-day CPET test seems to indicate likewise.

PEM never stopped me from exerting though. The incorrigible optimist in me always thought "maybe it'll be different this time!". I never learned lesson thoroughly enough, though I've been trying to limit my speed to 90 steps/min when I'm under the weather. It's different from the pain in that regard. Pain is immediate and you tend to learn lesson fast. PEM, not so much.

 

Several days ago I was walking aimlessly around the house feeling unwell, aching muscles everywhere, and knowing I would achieve nothing that day. I don't know if it was PEM because I just ride the waves trying not to take notice of details and it all feels as though it's on the same continuum to me.

I wanted to go for a walk but I knew that would set me back badly even if I could muster the energy and tolerate the muscle pain.

Unable to bear doing nothing a moment longer I did something harking back to Mark vanNess and Workwell's research that I had forgotten about for ages and that has helped in the past. So I ran for 20 seconds on the spot very, very fast. After half an hour I didn't feel worse, in fact the pain in my legs was less so I waited another half an hour and did it again. Same result. Over the course of the day I did it five times and felt a lot better overall. The next morning I was able to go for a half hour walk and it felt easy.

I still shake my head at the result of those short, intense efforts - that I feel better immediately and that there is no eventual payback. I went from 'exhaustion' to tolerable so easily. I wish it did something for brainfog and the awful detachment from the world that ruins every moment.

 

For healthy people, fatigue actually comes in waves after an exercise. First is the metabolite getting dumped into the blood stream. Then comes neutrophil getting activated to clean up the debris. Finally, the repair process comes the next day, sometimes accompanying delayed onset of muscular soreness. If you are sensitive to whatever is supposed to make you feel fatigued, same or worse sequence of sensation could happen after a minor exercise with light weights. If you are hypersensitive, stirring a pot could be enough to do the same. That, rather than energy problem, could explain "fatiguability" or the "after-effect" in addition to PEM.

Evidence for Sensitized Fatigue Pathways in Patients with Chronic Fatigue Syndrome - PMC (nih.gov)

 

interesting, I've only got part way through so far.

But I guess my main question is does/can this make you actually collapse? What I've been describing is basically fainting, except for some reason I've always been a 'slow fainter' (thank goodness meaning that I can feel with my arms to get myself to safety, even if that is just the floor), and how weirdly as I became more severe that ended up being able to 'induce' that even when lying flat (although not normally initially) but eg having a conversation.

It also seemed to have an orthostatic element when I was moderate in the gym example because it didn't happen when I was completing an exercise but as soon as I stopped. In fact one of the issues for ME when less ill was how just standing still was a problem vs moving and whilst sometimes you could perch to avoid this other times you'd end up 'exercising' to feel more well in a situation where you couldn't sit.

The stirring the pot example was more about being upright and focusing on that over how well I felt (until its too late and urgent, luckily I've a recliner nearby). Now from other examples there is very much a sense it isn't just one or the other and the orthostatic very much interacts with the exertion because of the fact I didn't realise you could be lying down and exert to the point it's like fainting. All very weird.

I guess I'd never thought of this possibility because prior to ME I'd done a heck of a lot of sport including eg long x-country races in the early days where someone might have used the term 'collapse' where you'd gone off too fast and were half way round being cheered on and 'beyond empty', but it was a 'can't carry on/need to lie down' collapse and not an actual health concern type level of thing. The only time I could start to equate was going on a trip out of the house too early after glandular fever and same slow faint having to collapse in the middle of a shop.

I haven't tried the pain thing. ALthough there seemed to be nothing found here. I'd guess if there was then the timepoint might have been missed, as I suspect it is the PEM stage where this is worst - and if you've over-exerted and well enough to participate in this then you might well be in the 'wired' from over-exertion 'through the wall and adrenaline kicked in so you can get to safety' stage.

Having read in the results that there wasn't an increase after exercise found here, I was a bit thrown by this in 4.1 (Effects of exercise on CFS) of their discussion (although it seems to meander between 'others found' and the paper, so it might be the classic having to re-read the same para over and over to work it out for me):

I note that line 1 here talks of other studies talking about PEM and then the next line uses 'post-exertional fatigue' so I guess I might need to re-read through their definitions to see what they mean by PEF.

The second half where it is talking about mRNA expression of metabolite-detecing receptor and adrenergic receptor genes is over my head right now and I guess I need to do a bit of homework.

 

@Robert 1973 My very severe ME onset felt like a speeding car crash, the car stopped but the engine would not quit. PEM always induces insomnia in me.

In regards to weight. In my severer years (about 14 years) I lost a stone in weight at the beginning. Every time I put on weight my ME did not like it and I would get a severe PEM and lose the weight I had gained.

 

Not sure what you mean by "fainting", but I thought we were talking about exhaustion. If you mean loss of consciousness, I'd guess that's a different symptom. If you mean immobilization, yeah, I'd think fatigue could immobilize. I remember being completely still for an hour or so once, in 2008 I believe. That never happened to me before or after.

 

@boolybooly Same here. Before ME I used to go to the gym to tone up my arm and leg muscles before summer. It would only take about 3 weeks to feel a firmness that I liked.

Since having ME I have tried to tone up many times but I just get PEM and have to stop.