I’m struggling with what to approach or how to approach it.
I’ve covered in some detail how CPM/EPM is caused and what parts of the brain are effected. I could discuss in more detail what areas of the brain are known to be associated with certain symptoms. However, there is a lot of mystery still surrounding how damage to the brain will cause a specific symptom.
I could discuss in more detail how the damage occurs (pathogenesis).
I could discuss who are some doctors to reach out to (right now this list is rather short). I could discuss prognosis or go into more detail on symptoms.
There’s also the social support. For instance, if you are like me, you might not have returned to work full time or may be facing ongoing disability.
How do you get started with SSI or social security disability?
There’s the legal ramifications.
One of the problems I’ve had with this injury is making decisions, so my attention becomes fragmented.
I guess there’s no wrong way to scramble an egg, so I’ll just choose something.
I don’t think I’ve gone into great detail regarding this issue, and if you’re reading this you’re in for a treat. 🙂
Dystonia is painful involuntary muscle contractions caused by a neurological (brain/spinal cord) issues.
There’s two types of classifications for dystonia: focal and generalized.
Focal dystonia generally effects a smaller, single area. For instance, you may have focal dystonia of your hand. Most of the time it is in one hand at a time. So, it’s not like both of your hands will cramp at the exact same time. It generally effects smaller muscles, like those of your face or neck.
Now, something, I did not know is that something like writer’s cramp is considered a focal dystonia.
(That said, guess what I’ve developed since having EPM. I’m getting it in my hands and feet.I know, really another symptom, but yes. It hurts when I type or write, especially for extended periods. Of course, I used to have this before I had EPM too (who hasn’t experienced writer’s cramp at some point in their life), but I never had it daily like since I’ve had EPM.)
I think the following video shows how minor these focal dystonic neurological issues might seem. In a lot of videos that you see online, dystonia seems to be extreme cramping, but that’s only in severe cases. It is in most cases, especially early on without treatment not as noticeable except for to those who are living with it. Please don’t take that to mean that this issue is not painful or abnormal.
Like everything, stress and fatigue tend to make these movement based issues worse.
I think what’s unusual with dystonia that’s caused by EPM, it tends to effect more than one area, not at a single time, but you can experience radiating cramping through out your body. So from the first week that I developed this, I would experience a pain in my hand, 30 seconds later I would have it in my foot, 30 seconds later it would be in my thumb, then my back. It was just constant circulating pain. It’s now become the cramping and stiffness as described in the video above.
In most neurological cases of dystonia, you will have a primary problem and over time you will develop the cramping in other parts of your body.
I believe dystonia also causes the swallowing issues that are associated with EPM/CPM.
Possible causes for Dystonia:
Sometimes dystonia is but one symptom of a more pervasive disorder that affects the basal ganglia, such as:
- Parkinson’s disease
- Huntington’s disease
- Traumatic brain injury (ie, CPM/EPM)
- Brain tumor
- Oxygen deprivation
- Infections, such as tuberculosis or encephalitis
- Reactions to certain drugs
- Heavy metal or carbon monoxide poisoning
The above information comes from: http://www.mayoclinic.com/health/dystonia/DS00684/DSECTION=causes
Now, generalized dystonia impacts Larger muscle groups in the body, such as those of your back and abdominal wall.
Check out this video for a woman who is living with generalized dystonia:
Again, please note, that not all cases of dystonia are that extreme, and they may not be permanent distortions but like with seizures, you can have cycles to it. It does become worse with activity and movement of an afflicted part of the body.
I do recommend the Mayoclinic website that I cited above to get additional information on dystonia.
I hope this gives you an understanding as to something you might experience with CPM/EPM. Hopefully, it brings you peace. If you are experiencing what I’m experiencing with the medical profession, you might feel a little less crazy by reading this. 😉