Dystonia is a neurological movement disorder that causes uncontrollable muscle spasms which can be extremely painful for some. Dystonia is estimated to affect 100,000 people in the UK, and there is no cure.
To recognise Dystonia Awareness Week 2022, we asked friends of Leigh Network to share their stories.
“To look at me, you wouldn’t know what goes on inside my body.
There are, I think different levels of a dystonic flare up it can begin with a shoulder twitch that only I feel. This can lead to my arms and hands trembling, fist clenching so tight, it has to be prised open. It can be embarrassing as I can struggle to pick up a spoon or glass, or tablet. My legs are most affected. A lot of the time, it feels like a vice like grip is shaking my calves, making the muscle do the opposite of what I want, it’s like the muscles are playing tug, arguing. It causes my legs to shake and stiffen. When I walk, I have to concentrate to get my heel to the floor. After a while of toe walking, it aches in my knees and there are pains in my legs. Sometimes, my face is affected too. My jaw contorts into a frightening grimace.
This and the hands are probably the most embarrassing aspects of dystonia to deal with. I’m sure everyone has different triggers, mine are extreme temperatures and emotions. E.g., a hot bath can cause an immediate reaction, and my leg will then shoot up and not move. I have to forcibly push it down. The after affects are that my muscles feel heavy, delicate and floppy with fatigue, my brain can’t think and its like swimming through sludge.
I take baclofen, which is a muscle relaxant.
Dystonia, for me, is worse at night.”