Hey so, normally I don’t share detailed health information here, but something’s happened recently and I thought I should describe it in case it’s helpful for anyone else w FND.

The overview:

I’ve had FND for almost a decade, but fortunately for a number of years I’ve decreased the symptoms (thanks physical therapy) to the point where it’s mostly an invisible disability.

And that’s great! I do not miss the much higher levels of disability, or the symptoms that put me in the hospital multiple times, or being electrocuted by yet another intrepid neurologist.

But looking well is not being well. There were always new symptoms popping up, and lots of chronic pain. So I might look OK, but was still really limited (and distressed, and, you know, in pain all the time.)

Pain w FND is super common btw

And then I finally found something that’s helped. And I don’t know why, but I have an idea and want to describe it here anyway.

So here’s how the pain cycle would go: I’d get up in the morning, have a slow start, be basically OK, then focus in on some task (like writing emails on a laptop.)

Over time my back and shoulders would start to get uncomfortable and then hurt worse and worse. Eventually it’d flare into really urgent stabbing pain, the muscle would cramp up, and I’d have to go crash land on the couch and wait for the pain to subside. Wipeout.

This happened over + over. Every pain cycle making the next one shorter. I tried really hard to manage FND symptoms and to work half-days (4hrs/day of any productive activity) and couldn’t do it. Often after a few cycles I could only work 5-10 min, then crash again.

And then I started thinking about Joseph Ledoux’s work on the amygdala. The amygdala is thought to be involved in FND, and was traditionally considered an emotional brain area...

but Ledoux now makes the case it’s more about threat detection and response.

Emotions don’t register “in” the
amygdala. That’s not where you feel fear. It provides threat info that may be interpreted into a state of fear by other places in your brain.

Well, OK. Let’s say that amygdala is driving my FND, just for funsies.

If so, should I expect to see really clear links between fear/stress and symptoms? Maybe, maybe not.

But I should expect that it will have something to do with threat, and about responding to it.

So the next time the pain happened, I paid close attention to my body + noticed my shoulder muscles were constricting VERY SUBTLY as the pain built.

Did this muscle construction cause pain, or did the muscles start to slowly clench in response to pain itself? No idea!

But feeling the muscles tighten, I suddenly had the image of bracing my body, as if I was preparing to be hit by something, or the way you might flex your shoulder to break down a door.

You know, a kind of protective response...

And I thought, well, I’ve been trying to make the pain go away with no results for like 5 years. Why not try to mess with this muscle reflex thing?

It was really hard to get them to respond directly (have someone pinch your bicep as hard as possible and try not to flinch and you’ll see what I mean).

But I could get some results by sort of talking to my brain. In some cases I told my brain to calm down, that it’s ok to relax this defensive reflex. That helped.

Interestingly I also found that shifting into a mental mode of attack (calling on personal experiences we’re not gonna talk about right now) also helped just as well!

Which kind of makes sense if you think about it. In order to, say, hit a punching bag, you can’t be rigid at the outset. You have to start loose, intentionally fire an attack motion, and then relax when it’s done.

Very hard to flex protectively during that. Rather than bracing against an expected impact, you kind of invite it, on your own terms.

So over a couple days I played w that, shifting in + out of these mental modes kind of like a car going park, drive, reverse.

And as I did, the pain dropped drastically. I was able to consistently hit the 4hr/day mark (woo!) + have been increasing a little at a time since then.

It hasn’t magically fixed my life but it has made more things possible and I’m not in constant pain anymore.

As a result my emotions are better too. I feel like I can actually take a mental breath for a sec without my body screaming at me.

I can’t say I understand why this seems to work for me. It’s logical to think “well, if you’re flexing your muscles too much, obviously it’ll hurt” but I don’t think that’s it.

It was a really subtle thing - you’d have to touch me to feel that I had tension, and even then it’s probably less than what some people have just sitting at a desk at work. And they’re not hugely disabled by it.

More likely I think there’s some threat loop in the brain I’ve managed to notice and interrupt.

It really feels like the brain is generating both subjective pain and observably measurable muscle actions predictively -

Ie based on past experiences with pain,

My body knows that working long periods of time hurts! (ie feels harmful for the body) because of my initial functional symptoms

and I kind of think it generates the pain as a danger signal (STOP! PRESERVE TISSUE!) and the muscle action as a kind of simple defensive move in anticipation of what experience indicates it should expect to feel soon.

But I really don’t understand it, at root. I’m just glad to be more comfortable, and ready to make the next positive move I can re: FND when the time comes.

And in the meantime, will enjoy my body chilling TF out a little for once.

Thanks for following!