And here is my Letter to the Editor:
Dear Editor:

I am a friend and on-call caretaker of someone with complex regional pain syndrome [CRPS]. This month she marked the 21st “anniversary” of living with CRPS. In the past 12 months, I have watched CRPS’ acceleration degrade her ability to walk, speak, and lift her 1-year-old child, and irreversibly damage her immune, motor, and vascular systems. Most painful of all to observe are the limbic system dysfunctions that force her to fight daily for control of her personality, her memory, and her ability to keep her intellect intact. I am also a former medical school professor. I have used my research skills to read every article, case report, textbook, conference paper, poster, newsletter, and blog about CRPS in search of an elusive treatment that might work … or that ever worked for anyone. Patient boards on the internet document well the futility and despair far better than do the Cochrane reviews.
I applaud Applied Neurology for summarizing the controversy and experience of CRPS and for giving an overview of some of the science behind CRPS treatment [in the article “Understanding and Treating Complex Regional Pain Syndrome”; Applied Neurology, October 2006]. The article also does a good job of capturing the unusual dedication of the few doctors in the United States who choose to take on this very tricky, malevolent, and intractable disease.
I must object, however, to the misleadingly hopeful conclusion of article’s author Devon Schuyler. The final paragraph concludes: “Oaklander [Anne Louise Oaklander, MD, PhD, associate professor of neurology at Harvard Medical School, Boston] pointed out that she never sees geriatric patients with CRPS; the average age of most patients is about 40, and the prevalence decreases as patients age. ‘These kind of epidemiologic data are consistent with a disease that does not last forever,’ she said. ‘It’s one of the things that keeps me optimistic.’”
Whether Dr. Oaklander “sees geriatric patients with CRPS” or not is not “epidemiologic data,” it is merely clinical experience, not evidence of any sort. Even if there were valid population-based data demonstrating a decline in prevalence of CRPS from age 40 onward, although that data may be consistent with a hypothesis that CRPS is “a disease that does not last forever,” the most plausible hypothesis regarding the age-adjusted prevalence of CRPS is that the decline is due to suicide. These affected persons presumably might be those “30% for whom it doesn’t matter what you do; they’re miserable,” according to Ricardo A Cruciani, MD, PhD [vice chair of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center, New York].
[mollymcn]
1. Lists and links to online patient boards worldwide can be found on American RSD Hope (www.rsdhope.org), For Grace (www.forgrace.org), Reflex Sympathetic Dystrophy Syndrome Association (www.rsds.org), and NeuroTalk (http://neurotalk.psychcentral.com/forumdisplay.php?f=21) . Yahoo! Health:Groups also lists 70 online Reflex Sympathetic Dystrophy-CRPS support groups.
2. The incidence of complex regional pain syndrome: A population-based study. M. de Mos, A.G.J. de Bruijn, F.J.P.M. Huygen, J.P. Dieleman, B.H.Ch. Stricker, M.C.J.M. Sturkenboom. Pain (Elsevier 2006). In Press, Corrected Proof, Available online 7 November.