Hi Everyone,
The IL-6 is also a marker for a stroke. RSD is the pitts. Hugs, Roz

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

Hi Deb - I agree with you about not making it to old age! I thought the article was mostly excellent but the conclusion was terrible. CRPS doesn't go away. In fact, I wrote a Letter to the Editor about this, and my letter will be published in the February 2007 issue of Applied Neurology. Dr Oaklander's reply to me also will be published (she is the author of the article that started this string discussion) http://appneurology.com/showArticle....leId=196513289

I was also wondering how they came to that conclusion!

Though the rest of the article was A+...

Dear mollymcn -

The link you published to Applied Neurology apparently required some sort of subscription to the publication to get in. If you could just block and copy the material your referring to and post it here in a text form, it would be greatly appreciated.

Regarding Dr, Oaklander's "conclusion" on the absence of CRPS in a geriatric publication, I've fallen behind, but am working on a letter to her, following up on Debbie's suggestion that the action may lie with IL6 and other inflammatory cytokines that make the CRPS population more susceptible to things like cardiac artery disease.

Mike

Hi Everyone,

Here is a article about circulation that also brings up the IL-6 and other inflammatory cytokines page number 378. I am concerned about the sepsis factor we could be at risk for as well. Maybe this would have something to do with people having to have their limbs removed. Big Hugs, Roz

http://www-klinik.uni-mainz.de/Patho..._4_03-Kirk.pdf

Hi Mike, sorry the link didn't work. I wonder why it works for me?! http://appneurology.com/showArticle....leId=196513289.
The reporting in the article was excellent (by Devon Schuyler). The quote from Dr. Oaklander in the concluding paragraph was: Oaklander 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."

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.

What a good letter, congratulations.

Yes, while I think the article is the best round-up of current "state of thinking" regarding RSD, and it certainly is very well written, one of the really interesting things about it is that it shows that "how doctor's think" about RSD doesn't really fit many sufferer's experience...in many ways it highlights the gap between the "clinical" view of the medical world and the necessarily subjective view of the patient. Doctors would learn so much more if they started really listening to what RSD sufferers are telling them.

Thank you for putting in this very cogent and beautifully reasoned letter; will you get a reaction to it in print, do you think?
all the best