Bozos on the bus

The future is fun! ... The future is fair! ... You may already have won! ... You may already be there!

I'm a great one for denial. As much as I post about CRPS research and various studies, as much as I do the moan-and-groan, I have not much wanted to know more about CRPS and dystonia.

Along with its torturous companion, neuropathic burning pain, dystonia is beginning to characterize this period of the disease (in me). It is awful, it humbles me daily, and it's time that I learned a little more about it, since denial is reaping its usual reward of... not much.

I need a primer in terminology. Spasms, tics, movement disorder. Abnormal postures. Twisting, repetitive movements. Thirteen different forms of dystonia, proper... many more diseases of which it is a symptom. Focused in one location, generalized. Hurts a little, hurts a lot.

Obviously, I don't have a primary dystonia (I'm not sure of the correct way to say that...) -- mine is secondary to CRPS, and began, in terrible earnest, last year, or seven years after the onset of the disease. From the beginning I had spasms and tics, but they were well controlled, for years, with stretching and exercise, with baclofen or tizanidine. Even when it was not well controlled with medication, the pain and discomfort was tolerable for a long while.

Now, though, the twisting and spasming covers more area -- mostly of my right leg -- and lasts for hours. The generalized violent tics are extremely painful, enough so that I cannot refrain from yelling sometimes. No matter how many times I experience them, they are always a surprise.

Researchers estimate dystonia as occuring at a rate of between 5-30% of the CRPS population. Other than that, research hasn't provided us with much information, except the usual disturbing interest in pegging dystonia as a functional, faked symptom. Thanks ever so much, researchers, for keeping that pointless application of science alive, and presumably, well-funded.

In sum:

...[D]ystonia with CRPS usually happens in the hand and causes the wrist and thumb to curl in, called flexion. In the leg, it starts in the foot, sometimes causing the toes to "claw." Researchers also noticed that patients with CRPS and dystonia tend to be younger than patients with CRPS without dystonia, and the more extremities affected, the more can be affected. Dystonia can come on gradually or it can come on suddenly. It also usually begins on the same side as the injury before the CRPS.

There isn't a connection between when the injury happened and when CRPS and the dystonia begins, so sometimes it is hard to tell what follows what. As well, it isn't known if bracing or immobilizing an arm or a leg after injury makes it more likely for dystonia to develop. Researchers have also looked into the psychological aspect of CRPS and CRPS-related dystonia, but that, too, hasn't found anything.

All the research results in there being no clear understanding of what causes some patients with CRPS to develop dystonia and not others. Because of this, no clear treatments have evolved. Medications don't seem to help and while psychosocial interventions may help some patients, they don't help all. Physiotherapy, tried with some patients, could make the situation worse, rather than better.

In another study, the researcher could not see his way to CRPS and Dystonia being co-existing disorders, not even after tossing in the adjective unusual. The good Dr. Schott, from the National Hospital for Neurology and Neurosurgery, in London, authored one of those... review articles (upper lip raised in a hapless sneer... nothing personal Dr. Schott). From this glommed together review of the glommy literature, we find:

Not all patients with CRPS develop dystonia but many do. And the timing can be anywhere from a week to five years before the dystonia starts to show up. There are a few cases where dystonia occurs first, and then CRPS develops, but it's usually the other way around.

The symptoms of CRPS may even get better as the dystonia comes on. This suggests that separate mechanisms are at play. Scientists generally agree that both problems stem from a dysregulation of the central nervous system. But exactly what happens in each condition is still a mystery.

Doctors are looking for predisposing factors for the onset of dystonia. Does it only occur when there's a bone fracture? Or is it more likely to develop when the limb has been in a cast? Does surgery trigger it? Perhaps there are genetic or environmental factors.

Right now there are more questions than answers. The complex interaction of the nervous system with the immune system and the motor system are part of the picture. What are the biologic and mechanical pathways? This remains unknown and is still the focus of many studies.

G. D. Schott. Peripherally-Triggered CRPS and Dystonia. In Pain. August 2007. Vol. 130. No. 3. Pp. 203-207.

Okay, so now I've read two oft-cited articles on CRPS and dystonia, and, as usual, feel like the exception to the rule. I also feel that familiar feeling of marginalization -- and my bullshit detector is going off.

I know that researchers cannot report what they have not researched... just as I know that calling for further study is a line not unlike "take two aspirin..." The interest isn't there because the money isn't there to stoke the interest.

Or maybe I am bitter.

Moving right along... the next bit of scholarly help I run into blithely pegs the appearance of dystonia in a CRPS patient as La Belle Indifférence, or as conversion disorder. This is a scant case study of a 46 year old woman with CRPS and dystonia after a knee injury, and who does not respond to any treatment (from Cognitive Behavioral Therapy to spinal cord stimulator; from amitriptyline to steroids; from sympathetic blocks {rolling:my:eyes} to arthroscopy). From what I can gather, this author, Dr.Fraser Duncan of University Hospital, Birmingham, Edinburgh (July 2008) relies almost exclusively on... you guessed it! The work of the good doctor Schott!

We Bozos have a saying: 'When you put on the nose, it grows.'

Ach mein gott but I am tired. I will take this up again soon... and in the interim, will rest easy knowing that there is, as usual, no one driving the bus...

Excuse me while I go twitch, spasm, twist, and scream.

The future's comin', and there's no place to hide!

Pithy bolded and browned quotes are from I Think We're All Bozos on This Bus by Firesign Theatre.