What is it like to suffer from diffuse fasciculations?

Fasciculations are brief involuntary muscle contractions. Diffuse means they can happen in any voluntary ("skeletal") motor unit. Mine started out-of-the-blue in April 2016. On average I get about one noticeable twitch per second.

Fasciculations like mine can happen for many reasons, and doctors often disagree. They can be part of Multiple Sclerosis (MS), or ALS (Lou Gehrig's disease). They can happen because of chemical toxicity, or magnesium deficiency. They often accompany Fibromyalgia. Stress and insufficient sleep both worsen fasciculations. In many cases, we just don't know what's causing it.

How does it feel?

That depends on which motor unit (portion of a muscle somewhere in my body) twitches, how intense the twitch is, if it repeats in the same spot, and my current state of mind.

• Sometimes it feels like a light tap on the arm.
• Sometimes like an bug crawling up my leg.
• Sometimes like a droplet hitting my face.
• My breath shudders for no reason. That's my diaphragm fasciculating.
• The muscles on my vocal chords twitch while I'm talking, causing pitch changes.
• My tongue twitches during speech, causing mispronunciations and stuttering.
• My lips twitch and contort strangely, which feels bizarre, and changes my facial expression.
• The muscles controlling my eyeballs can become affected, making me almost blind in that eye, often for hours on end.
• My balance and coordination suffer. I'm clumsy all the time, but I used to be graceful.
• I've had a few near-falls because a leg muscle will fasciculate at just the wrong moment, causing a knee to bend suddenly.
• My "core" muscles can sometimes get very twitchy, giving a full-body buzzing sensation for hours on end. For months, I asked people "is the building vibrating?"
• I'm always hot and sweaty, but never had that problem before.
• I need to eat a lot more than before, to maintain my weight.
• I'm always sore and fatigued. I have to switch hands half way through brushing my teeth because I can't hold my arm up any longer.
• My fingers twitch while typing and I make more errors. My index finger twitches causing unwanted mouse-clicks with unintended consequences.
• Sometimes they're distracting and I lose focus and concentration. Sometimes they make me flinch or gasp, if they're intense or in a strange spot.
• The last thing I feel before I fall asleep is twitching, and it's the first thing I feel when I wake up.

"Do you get used to it after a while?"

In some ways, yes. I'm less concerned, bothered, or distressed by the fasciculations than when they first started, but without a diagnosis, I remain worried they might be a symptom of MS, which hasn't been ruled out. The worry never really goes away completely, but it's less.

And in some ways, no. You've heard of "Chinese water torture", where the sensation of a droplet of water on the forehead, repeated thousands of times, can cause psychosis? Luckily, the twitches aren't always on my forehead, but they're still unrelenting. I haven't had a moment off in more than 2 years. It's wearing. It's depressing. And yeah, not having an explanation is anxiety-provoking. These things make the twitching worse, and they're hard to get used to.

People ask "if they're so bothersome, how can you sleep?" Just try NOT sleeping, I dare you. Eventually, you can sleep through anything, even your own body moving around without your permission. You wake easily, and you get up tired.

Another part that really sucks is almost nobody can relate to it. It's not rare, but it's not common enough that I know anyone else going through it. It's pretty lonely. People really don't give much consideration to me, since I don't look that ill. If they do see my illness, they see only part of it, they don't see how taxing it is, how much it has taken from me. It's more than just never having a tea-buzz again. More than getting a physical reminder every second of your life that you're not well. More than just small unwanted movements. This is a disability I'm not allowed to call a disability, an affliction I'm not allowed to complain about, a sentence I don't deserve, can't appeal, and won't get support for.

There isn't really even a name for it, other than "fasciculation disorder". All I really know is my nerves stopped working properly over 2 years ago, and my life hasn't been the same. I try very hard to not let it get me down or affect others, and I accomplish a lot with my life, but it's only through quite a bit of suffering that it happens.

I definitely don't want sympathy, but increased understanding of the problem would help a lot. Thank you!
DRutter : )