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Hi Adam. I just created this account because your experience mirrors mine - in that i too have been dealing with Post Exertional Malaise for years - and the connection you just made to "negative self talk and ignorance" is extremely interesting to me.

PEM is a rather obscure syndrome which no doctor i have met really understands, also i like you don't really have most of the "other CFS symptoms".

Basically it's an incredibly debilitating post "exertion effect" that means that every time you try to "better yourself", workout, get work done, etc. you end up crashing hard instead of feeling like "yeah i made it, now i can relax!" - you instead feel both mentally and physically like you are on the brink of death, often for days for no reason - it feels so incredibly "unfair". You could have just been promoted, got a raise, finished a marathon, doesn't matter, you feel like you are crashing from a drug bender.

Until now i have been thinking that it's either some cell level or genetic deficiency, OR that it's actually a form of burnout, ie. the way "out of the PEM prison" is through total relaxation, weaning of coffee, stopping hard workouts etc - but i have "often" tried this to little effect - what i haven't tried though is going to therapy for a "longer stretch" and your post just made me realise something: "Maybe i too am too hard on myself" - why this form of neurosis would lead to Post Exertional Mailaise i don't really know, but damn i am so happy to have found someone who's had experienced the same thing.

Anyways - i just wan't to say thank you so much for writing this, and if you or anyone else have any leads to books, forums or podcasts about this issue, i would be so happy.



People like you are the reason I posted my story. If I can even help a small number of people to not endure the same pains, that would make me incredibly happy.

The therapy is the last item in a very very long list of desperate things I've tried to cure PEM (metabolic typing, accupuncture, genetic testing, methylation, nutrition, crazy diets, and so much more).

What was the cause cause of my PEM? Negative emotions alone, wasn't the direct cause. But the supression of those negative emotions. In general terms: supressed, charged emotions directed at myself caused my PEM. Or in HN terms: constant low-level burnout.

Because it takes a lot of energy to hide those feelings from myself. A constant battle that I was generally unaware of that was happening at a deep level. I would deny the feelings of my body. I first had to build the support inside myself, with help of a therapist, before I could truly start to listen to the supressed emotions without being overwhelmed.

This was the beginning of the end for my PEM.

The book I would recommend would be: The Body Keeps the Score by Bessel van der Kolk M.D, which helped me a lot on the journey to recovery.

I've found forums to be generally very unhelpful. Something I wrote down a while back which I hope explains why I don't think they are a good place to resolve problems:

---

The unreasonable ineffectiveness of communities in solving a single problem.

One person has a problem, if problem persists for any length of time, the more likely others will be experiencing that problem at the same time.

If there are enough people with that problem, a community will form around solving it. If the community is ineffective in solving that problem, then the community will grow and begin to sustain itself as new members join with that problem and the existing members continue to work on solving that problem.

For the community to survive, the problem must not be solved or the solution has to be close to unobtainable. Ineffective solutions will be devised to solve the problem. The complexity or discipline involved in solving the problem will exceed the ability of the individuals to implement it. The blame of solving the problem will lay in not in the community itself, but the individual not being able to implement the solution. An example of this may be a nearly impossible diet, regime or routine.

If an effective solution is found to the problem. There are two possible outcomes: either the community will dissipate and active membership dwindles or it will protect itself from the existential threat and block the ideas. This is especially true if the identities or financials of individuals in the community rely upon the problem existing.

Therefore, no community that sustains itself will form around the right solution. It is unsustainable. The communities with the most active members are also the most popular, propogating the problem.

---

Please do let me know how you get on, I wish you the best.


Thank you so much for the answer.

I have already begun The Body Keeps The Score and is actively looking for a therapist now.

The perpetual cycle of overreach, then crash certainly deepens the negative self talk - the fact that you can't tame yourself through excessive discipline while ignoring "how you actually feel" (ie. often like complete trash because you ARE crashing) certainly doesn't help the "neurotic behaviour/emotional armour". But i somehow thought i could "plough through".

The suppression of real emotions seems like a perfectly reasonable explanation for why you become so tired/worn out. Also you get used to ignoring the negative self talk because you feel like it makes no sense from the intellects perspective and you have to "perform professionally" or whatever.

One thing that has kept me from really going in this direction has been the observation that 3-4 days in bed with only my laptop has been able to "heal" all of the pain and fatigue and tension in the body - if done before for example an important meeting i end up completely calm, extroverted, like another person or "the real me", but the "tension" and fatigue soon returns. Such a weird and labyrinthian process. I guess it has to do with the fact that the negative self talk quickly returns and i get burned out again very easily.

Anyway, i guess the way forward is not ploughing through with a tense body and an "ignored" mind. Sounds almost stupid as i write it out like this, but here we are.


I recognise your plight, because it has also been mine. Being hard on yourself and being frustrated by how hard it has been to fix yourself is something I've known well.

However, no one gives us manuals for our body and we're all inside an incredibly complex system which we are not evolutionarily adapted for.

I remember most vividly when I took 6 weeks off work, stayed at my Grandmas house with her feeding me good food and not having to do anything, then going back to work again.

I was incredible. Level-headed, extroverted, energetic. I thought it was just rest, but then I began to understand (many years later) that all my cycles of energy started off in similar ways. For example, if I tried a new diet or regime, I would feel great for a week or two until I wouldn't.

I eventually came to understand that it wasn't what I did, but how I felt. I discovered what the placebo effect was (for me) and why it seemed I'd get a buzz from doing something new or starting afresh. It was because I felt powerful and in control.

This feeling of power was so helpful, so nourishing, because it countered what used to be the worst feeling in the world for me: a maldapted feeling of powerless. That feeling was connected to my trauma/past experiences at a deep level.

As everyone can attest, being in the real world often creates feelings of powerlessness, because you are not in control of everything.

That meant everyday life could quickly wear me down depending on how much nourishment I was getting from feeling powerful vs powerlessness.

An analogy I use to describe this: it is a car with a leaky fuel tank. The hole in the fuel tank is the negative emotion. The bigger the hole or the less the fuel going in, the quicker you run out of energy.

Eventually the requirement to counteract the maladapted feeling of powerless diminished, and thus I didn't need to feel powerful in the same way.

For you, the feeling that wears you down, may not be powerlessness like mine was, but by looking at the things that make you feel good, you'll be able to figure out what you get from laying in bed for a few days on your laptop.

Then perhaps you will come to understand the feelings that you avoid or are the inverse of what you get from sitting on your laptop. e.g. sitting on your laptop might make you feel in control, or might avoid the pressure you feel from having to do something that doesn't nourish you in some way.

But before big life changes are made, I would say it's important to find out which of your negative feelings come from maladaptions (i.e. to past emotions/trauma) and then you'll be able to make more effective decisions once you've resolved those maladaptions.


Our stories are very similar, especially since you experienced the same "cycles of energy" and feeling like yourself after doing nothing for a while.

I think most importantly the new connection for me is that i simply get worn down outside or among other people incredibly fast for some reason - same with work projects.

I am still unsure of the actual physiological cause, as it seems to me that i can also get a crash even if i run alone in the woods - ie. no other people, but it's still a "performance" and "you" still judge it with your own mind.

What makes me sure that there is something this is the fact that you have experienced both this AND the feeling of powerlessness - and the paranoia around this - i hadn't really seen this before but i totally also have that - down the fact that i have also been high on new fads, diets, lifestyle changes but only for a few weeks or months before i try something new.

So in short "the crash" is related to feelings of being in control, bodytension and not letting things go properly, instead judging hard, becoming perfectionist and having feelings of "not good enough" - even though i just finished something. Being a hermit with your laptop is fleeing from all responsibility and letting the mind rest, just as the body, and you are probably right that the mind is just as important.

So to sum up mostly for myself. Letting go, being kind on yourself, and being comfortable with "other peoples eyes" around me, appreciating smaller incremental victories, and just as you also mentioned in you first comment - building self reliance is something i have to learn to do. I have probably had a pretty high level of anxiety inside of me that i have ignored like "everyone has imposter syndrome", or "everyone is afraid of getting exposed (whatever that means)", but it wears you down.

Just writing this out is untangling a few things for me so thank again!


It is no problem at all - I'm glad this is helpful.

You are on the right track. I'd speculate there are memories from your childhood that could be the root cause of it.

It will take time for things to change. To figure out what is going on and to listen to the messages from your body, but things will get better for you.

It took around 2 years for me (with reading and therapy) to make significant progress, but I had to exist in a world where some of the people who created the original issues were in my life still and were very unsupportive of my new revelations, which made the process harder than it needed to be. The process isn't over for me yet, but the hardest part is over with the PEM disappearing and depression abating.

Please drop me an email (email in profile) sometime, I'd be keen to know how you get on and what you learn.


I highly recommend you (or anyone, really) reading 'Embracing Our Selves', a book by Sidra and Hal Stone. It is an introduction to Voice Dialogue method, where you literally talk to different parts of someones psyche. Its a mind blowing perspective.

You both mention self negative talk and for that reason I come forward with this recommendation, but things you discuss (repressed emotions, powerlessness/vulnerability, self-leadership,...) are all intertwined and addressed in the book in an insightful way.


This is very intriguing. It looks like this could be part of the family tree of Internal Family Systems (IFS) therapy. I'll take a read.


IFS (Internal Family Systems) and VD (Voice Dialogue) are based on the same principle, that we are comprised of number of sub-personalities (which is nothing new). They are just practical methods of communicating with these sub-personalities - you can literally _talk_ to them as if they were independent person, with their own views, outlook on life, needs, emotions, etc.

The most important thing is to _experience_ Voice Dialogue (or IFS, which slightly differs in approach), ie. to be in the situation when someone talks to your 'voices'/'selves' and you 'enter' those 'voices'/'selves'. This experience results in a revelation which I tend to call (a deep) insight, no less.

VD precedes IFS (which is not that important) and I have a strong preference to VD over IFS (I would need to read more on IFS and clarify my points, which range from personal to very technical, to justify my preference).


Came here to emphasize reading “The Body Keeps the Score” as well. It helped me tremendously and played a large role in getting me through the door to therapy in the first place.


I just wanted to pop in and say that I found your mini-treatise on "The unreasonable ineffectiveness of communities in solving a single problem." to be very insightful. And I came back today to tell you so after reflecting on it off and on overnight.


Thank you for your kind words. Unusually, I wrote it almost verbatim in one afternoon. However, the understading took me a long time to gain after years spent in communities desperately trying everything to progress without results. It is why self-leadership is so important to me.




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