My Dystonia

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with Dystonia as an installment in the “My Diagnosis” series. It has been a while since I made a post in this series, but there are several more that I plan on writing. In my usual fashion, I have gotten distracted again and have been writing about other things. But, I haven’t forgotten about these and promise that I will get to the last few that need to be written.

Let’s start like we always do and talk about what dystonia is. The first thing to know is that dystonia is complex. Most of the time, there is no known cause for dystonia. There is a known correlation between dystonia and Ehlers Danlos Syndrome. Dystonia is defined by National Institute of Neurological Disorders and Stroke as:

Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurological symptoms. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for most cases is not known.


I have been diagnosed with idiopathic, focal Dopa-responsive dystonia (DRD). That’s a mouth full, right? Idiopathic means that there isn’t a clear cause for the dystonia. I don’t have the genes for a genetic dystonia and it is not believed that my dystonia was caused by physical trauma or medications. Focal means that the majority of my dystonia symptoms are in a single part of my body. For me, that’s the right leg, mostly in the right foot. DRD means that my dystonia improved when I took Sinemet.

Most of the time, I don’t have any problem with my dystonia symptoms. When they come up for me most often is when I am working. I have to be on my feet for 12 hour shifts and I need to spend most of that time walking. This often leads to an activation of my symptoms. The result is that my right foot turns in and makes waking more difficult. If the symptoms progress, I will get involvement into the calf and thigh muscles. This means that my leg will start moving of its own accord and walking becomes impossible. Standing becomes a challenge. This is a major hurdle when I am supposed to be working. However, this has been much less of a problem for me since I started taking the Sinemet.

There are other things that can trigger the dystonia. Emotional stress is a major one. If I get to emotionally over loaded I am likely to start having dystonia symptoms. Being sick or just stress in general can provoke a flare. Any time any of my other chronic illness are flaring there is a chance that my dystonia will also flare. So, there are times that the symptoms hit me unpredictably. But that is not usually the case. Most of the time the come on in a creeping fashion that gives me plenty of time to take extra medication and that is often enough to nip things in the bud. But not always. Because no matter how great a treatment plan is, there are going to be times that you get break through symptoms. And my dystonia is no different.

For the majority of times, my dystonia only effects my right leg. But there have been times that it has become highly activated and I have experienced full body symptoms. I can have uncontrolled movements of all four limbs, my neck, mouth and eyelids. It is a weird experience to have your body moving of its own accord and not being able to do anything about it. When I’ve had a seizure, I at least had the luxury of loosing my awareness of the event. When in a dystonic storm, I remain fully cognitively aware of what is happening to me and it feels like being imprisoned inside my own body. That being said, there is also something deeply unsettling in just waking up and not being certain what has happened to you. I’m not a fan of either really and wish that no one had to experience either nasty adventure.

Dystonia is painful. It means that you are having muscle spasms and jerking movements. It also means that you are having body parts suck in a position for hours. All of this results in muscles, ligaments and tendons being painful. Sometimes it is that deep over worked muscle aching and sometimes it feels more like I’ve strained or pulled something. Dystonia is violent. It can seem otherwise while I am sitting there with my foot curled up and twisted inward. But this stillness in misleading. There is constant muscle action that results in that part being stuck over there. It can also be the jerking and repetitive movements that can often be misdiagnosed as seizures.

The best pain control for dystonia is to treat the dystonia itself and prevent the pain from occurring. But for most of us, reaching zero symptoms is unlikely. The medication keeps the symptoms at a level that I can move around and usually don’t have to think about it, but they are still there. And the dystonia is a big source of pain for me. Other then reducing the dystonia activity, there isn’t much in the way of good pain control. So, living with the chronic pain is part of this diagnosis for me.

Dystonia also means fatigue. When your body is spending large amounts of energy holding your muscles into contraction, it means there is less energy available to do everything else. While it isn’t listed as a symptom of dystonia in most places, it is absolutely something that I have experienced. The more active the symptoms are, the more tired I feel. And this isn’t the you can just get some sleep and feel refreshed kind of tired. This is that bone deep, used up and nothing left kind of tired. Often times, this is as difficult to manage as the movements as postures.

Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!

If you want to read more about dystonia, the Dystonia Fact Sheet is a great place to start.

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