My functional myoclonus and me

I have been promising for a while to write a post about functional neurological disorder (also known as a “FND”) and I decided that today might be a good day to talk about it.

I expect to have some hopeful updates concerning my covid recovery soon, though. So, stay tuned for that.

About 4 years ago now, I developed a functional movement disorder called functional myoclonus.

Essentially, my body loses control of a group of muscles in my back causing me to jerk uncontrollably and also lose my balance. It usually looks a bit like I am having a seizure or like my body is being pushed and pulled by invisible forces. It throws off my balance to a level where I started have problems with walking and occasionally would fall- usually on my knees.

At my worst, I have had to use a cane to help me counterbalance.

Functional movement disorders are still not well understood and, until fairly recently, were misunderstood as psychological problems.

While it’s true that psychological triggers like stress can contribute to the disease, the disease is actually physiological.

We all know that the brain does some processes on automatic. For example, breathing and walking. We also know that the brain can also learn to do things almost automatically if you repeat the action enough. For example, riding a bike. Or if you’re a musician like me, you can pick up your instrument after years of not touching it and still remember how to play basic scales. It’s “muscle memory.”

Functional movement disorders are like negative muscle memory. A triggering event causes the body to learn an unhealthy response. Once that response is learned, it’s like riding a bike. It’s really hard for the body to forget.

In my case, 4 years ago, I was going through a really difficult time. I was having back issues, stomach issues, and was under a lot of stress. Then on top of that, I developed a sinus infection. I went to an immediate care doctor who prescribed a drug to me that caused a negative drug interaction with a drug I was taking for my back.

The drug interaction was basically the straw that broke the camel’s back. I started twitching violently. That was what doctors would call the “triggering event.”

The interaction cleared my system. But after that point, my brain learned that this was the involuntary response to any perceived attack on my body.

Any time after that point that I was sick, had back pain, was exhausted, or was under a lot of stress (normally several of these things happening at once), it would cause a flair-up.

After I joined my current job, my symptoms were fairly rare. I would have issues every once in a while and the rest of the time, I would be fine.

But then last year, my symptoms got very bad. It seemed like I couldn’t go a day or even a few hours without a problem. I started having issues with walking, cleaning, driving, changing clothes, and cooking.

The good news is that my symptoms finally were at such a terrible level that I qualified for an intensive rehab program at the Mayo Clinic in Rochester.

Basically, the program aims to try to get the body to relearn proper muscle responses. I completed the program at the beginning of this year.

It wasn’t a cure-all but it definitely helped a lot. I stopped having issues as frequently. When lockdown began, my chair caused me serious back issues and therefore, issues with myoclonus.

But beyond that, my condition seemed more or less under control.

Then, I got sick with covid.

Many have asked if having covid affected my myoclonus or visa-versa. The answer is complicated. As far as doctors have been able to tell, nothing about my FND made it more likely for me to get covid or affected how serious of a case that I got.

And again, before covid, I was more or less healthy. My myoclonus was basically under control and I was living a very healthy lifestyle: eating right, exercising, and taking decent care of myself in terms of grooming.

In terms of my myoclonus after getting covid, I do have some issues. My symptoms are triggered when my brain thinks that my body is under attack and my body is literally under attack right now. Plus, doing my prescribed rehab activities for my myoclonus is difficult when I have limited energy and cognition.

But, I still am not nearly as bad as I was last year. I have learned tricks to adapt and to try to get my body back in sync and myself back in control after an attack.

It’s very possible that this is as good as it gets in terms of my FND. And if that’s the case, that is okay. But, I won’t stop pushing to get better and I have a lot of hope in a bright future for myself.

For anyone wanting to know more about functional neurological disorders, this website has been the best I have seen in terms of explaining what the disorder is. I also added a link to my link library for a help organization for functional neurological disorder sufferers called FND Hope.

#functionalneurologicaldisorder #longhauler #longcovid #medical #fnd