It's on my mind again, what I've become accustomed to name "CRPS Dystonia." It's rearing its incredibly ugly head again -- in my case, we theorize, in conjunction to a worsening of the infection in my bones. It's just a theory, and like many theories, was devised to give us a gracious way out to a difficult conversation.
It's the standard reaction of an entrenched medical establishment to accord psychogenic causalities to that which lacks sufficiently convincing research to support another explanation.
I believe that it says a lot that I could give a royal crap whether anyone thinks my sustained, severe, hours-long sessions spent twitching and spasming, all to the tune of some very fine moaning and intermittent screams, is a psychological problem or the result of some CNS misfiring. If a psychiatrist can find a way to stop them, all praise psychiatry! If my neurologist manages to do something beyond shake his pretty, pretty head, and give me a painful hug, all hail that sweet guy, too! Mostly, though, it is me, my MDVIP go-to-guy medico, and the poor slob assigned my case over at the Pain Management Dood's Place -- It's the three of us against the world of CRPS dystonia, or, as the kids say, "what-ev-er."
The fact that baclofen tends to work, if one is able to take the dose needed, is one huge argument for CNS involvement, but, hey! Don't let decades of clinical practice hammered and honed into an unofficial "Best Practices" sway you.
Seriously, don't.
While those of us dealing with it must also deal with managing symptoms based on the blank areas of a road map, we also want the pure research to continue. The problem seems to be the necessity of basing the scientific inquiries on what is known to those who study movement disorder. And these disorders are weird enough to witness that one of the first things medicos want to weed out are those infamous "fakers."
It's the Turdish Ochoa effect!
Finally, researchers are getting down to the infamous brass tacks. Some basic understanding about weird and obsessive guarding, weird and excessive non-use has helped. That leaves the rest of us with eyes rolling up into our skulls and one leg lost in space, while the other is making pretzels.
Here is the most recent study I've found, from the May 2013 issue of Clinical Neurophysiology.
Clinical Neurophysiology is the official journal of the International Federation of Clinical Neurophysiology, the Brazilian Society of Clinical Neurophysiology, the Czech Society of Clinical Neurophysiology, the Italian Clinical Neurophysiology Society and the International Society of Intraoperative Neurophysiology.The journal is dedicated to fostering research and disseminating information on all aspects of both normal and abnormal functioning of the nervous system. The key aim of the publication is to disseminate scholarly reports on the pathophysiology underlying diseases of the central and peripheral nervous system of human patients. Clinical trials that use neurophysiological measures to document change are encouraged, as are manuscripts reporting data on integrated neuroimaging of central nervous function including, but not limited to, functional MRI, MEG, EEG, PET and other neuroimaging modalities.
The Journal has special emphases on epilepsy and on studies of cognitive function and cognitive disorders. Motor neurone and neuromuscular diseases, vestibular disorders, motor control and somatosensory physiopathology are also covered by the Journal. Studies on animals and technical notes must have clear relevance and applicability to human disease, and studies reporting normative data for specific tests must have clear novelty. Case Reports are not generally accepted as full length submissions but may be considered as peer-reviewed Letters.
Note, please, that the article concentrates on hand postures. I recall rolling down the hall at the orthopedic clinic where I was having a follow-up visit after reconstruction of my right elbow. I was holding my arm in the way that caused the least amount of pain (the skin felt on fire, yadda yadda), which amounted to a sharp bend at that very elbow, with the entire arm, though, held tucked and away from potential accidental touch or jostling. My surgeon was walking down the hall toward me and called out, "Why are you holding your arm like that?" The simple question made me aware that I was doing something that looked strange, and also made clear (to me) why I was doing it -- to avoid pain.
I made a conscious effort to NOT hold my arm in that manner while in that doctor's presence, and then noted, on the drive home, that I'd reverted to the less painful pose. Nutty, huh?
This is a photo of one of Dr. Anthony Kirkpatrick's patients, Ana English. First, I so understand her
apparent mood. Second, the signs of CRPS just leap off the page. Third, I believe she is doing wonderfully well now following his ketamine protocol. But yes, that is exactly the posture I had also adopted, and to which my surgeon responded so negatively. But when it is you and your painful limb against the world? You find the "posture" that protects you best.
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| From Kirkpatrick's Clinical Practice Guidelines |
I happen to be just that simple a thinker -- that "posturing" is something related purely to the attraction of positions that cause the least pain. A nonscientific statement, which I'd make even more embarrassing by requesting a greater emphasis put on first quantifying the variables that are assessable during spasm/tics/dystonia movement disorder manifestations. I can be such a bitch.
Electromyography can be pretty painful for CRPS patients but I hope they keep recruiting willing subjects, because that gives impressive information about what muscles/nerves are up to, and how.
Interestingly enough, I've had two divergent doctor-types make the same very self-assured statement: "It's a sign of insufficient pain control." I couldn't get them to ruminate further, as they'd only reassert the belief and did not spout supporting research. Again, they were going with their decades of "best clinical practice."
Clin Neurophysiol. 2013 May 18. pii: S1388-2457(13)00310-6. doi: 10.1016/j.clinph.2013.03.029. [Epub ahead of print]
Deficient muscle activation in patients with Complex Regional Pain Syndrome and abnormal hand postures: An electromyographic evaluation.
Source
Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands; Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, The Netherlands.
Abstract
OBJECTIVE:
Motor abnormalities in Complex Regional Pain Syndrome (CRPS) are common and often characterized by a restricted active range of motion (AROM) and an increased resistance to passive movements, whereby the affected body part preferably adopts an abnormal posture. The objective of the present study was to obtain a better understanding of the factors that are associated with these abnormal postures and limitations of the AROM, and to investigate whether these motor impairments reflect dystonia.
METHODS:
We evaluated characteristics of surface EMG of the flexor carpi radialis and extensor carpi radialis muscles during active maintenance of various flexion-extension postures of the wrist of the affected and unaffected side in 15 chronic CRPS patients, and in 15 healthy controls.
RESULTS:
Deviant joint postures in chronic CRPS - at least in those patients with some range of active movement - were not characterized by sustained muscle contractions, and limitations of the AROM were not attributable to excessive co-contraction. Rather, the agonistic muscle and its antagonist were activated in normal proportions, albeit over a limited range.
CONCLUSIONS:
The AROM limitations and abnormal postures that are often observed in chronic CRPS patients are not associated with excessive muscle activity and hence do not exhibit the characteristics typical of dystonia.
SIGNIFICANCE:
We hypothesize that structural alterations in skeletal muscle tissue and pain-induced adaptations of motor function may contribute to the observed motor impairments. Our findings may have important clinical implications, since commonly prescribed treatments are aimed at reducing excessive muscle contraction.
Copyright © 2013 International Federation of Clinical Neurophysiology. Published by Elsevier Ireland Ltd. All rights reserved.
- PMID:
- 23692976
- [PubMed - as supplied by publisher]Other articles that may elucidate the matter further:Stretch reflex responses in Complex Regional Pain Syndrome-related dystonia are not characterized
by hyperreflexia.
Antagonist motor responses correlate with kinesthetic illusions induced by tendon vibration.
Thalamic single neuron activity in patients with dystonia: dystonia-related activity and somatic
sensory reorganization.
[A case of post-hemiplegic painful dystonia following thalamic infarction with good response to botulinus toxin].
Functional anatomy of thalamus and basal ganglia.
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