Courtesy Jim Broatch of the RSDSA:

Author: Schwartzman RJ, Erwin KL, Alexander GM
Title: The Natural History of Complex Regional Pain Syndrome
Source: Clin J Pain. 2009;25:273-280.

http://rsds.org/2/library/article_ar...lexanderGM.pdf

Here's the abstact:

Objective: Complex regional pain syndrome (CRPS) is a severe chronic pain condition characterized by sensory, autonomic, motor, and dystrophic signs and symptoms. This study was undertaken to expand our current knowledge of the evolution of CRPS signs and symptoms with duration of disease. Method: This was a retrospective, cross-sectional analysis using data extracted from a patient questionnaire to evaluate the clinical characteristics of CRPS at different time points of disease progression. Data from the questionnaire included pain characteristics and associated symptoms. It also included autonomic, motor, and dystrophic symptoms and also initiating events, ameliorating and aggravating factors, quality of life, work status, comorbid conditions, pattern of pain spread, family history, and demographics. Comparisons were made of different parameters as they varied with disease duration.

Results: A total of 656 patients with CRPS of at least 1-year duration were evaluated. The average age of all participants was 37.5 years, with disease duration varying from 1 to 46 years. The majority of participants were white (96%). A total of 80.3% were females. None of the patients in this study demonstrated spontaneous remission of their symptoms. The pain in these patients was refractory showing only modest improvement with most current therapies.

Discussion: This study shows that although CRPS is a progressive disease, after 1 year, the majority of the signs and symptoms were well developed and although many variables worsen over the course of the illness, the majority demonstrated only moderate increases with disease duration.

Check it out.

Mike

I just got done looking it over, thanks for posting it Mike!

(Just a reminder, anyone here who isn't on the RSDSA.org email list, should be!)

I was surprised by one thing in the study findings, that "Stress" was much lower on the list of percentages (12.3%) of aggravating factors, than I would have thought...

Stress is a killer for me.

This is definitely worth saving / printing.

pete

Dr. Schwartzman also mentioned that the use of ketamine in both subanesthetic and anesthetic doses and immune modulation with thalidomide or lenalidomide have been demostrated to be effective in patients who have had RSD for a short time and for those who have had it for more than 5 years.

It should be noted that these are the ONLY treatments that Schwartzman listed as showing any promise for us.

Sandy -

That's was a good catch. I don't know, but suspect, that the man is thinking of "medical therapies," i.e., medicines.

Just the the RSDSA Medical Archieves webpage lists six artcles under the heading of "Mirror Therapy and Graded Motor Imagery," and they seem to hold promise when you read them. Athough does anyone know of anyone who's treating with it? Similarly the same page lists the casenote Dr. Schwatzman co-authored on the remarkable effects of electrocunvulsive therapy (for depression) on one of his patients, a former judge, who had a four year case of RSD that hadn't responded to any therapy, until she had ECT. Treatment of CRPS with ECT, Wolanin MW, Gulevski V, Schwartzman R, Pain Phys. 2007; 10:573-578, listed under "Treatments" at http://www.rsds.org/2/library/articl...ive/index.html.

Then too, perhaps he and his collegues are looking for something that they believe will have something approaching continuously reproduceable results. (In the year since my little review article on RUL ECT for CRPS came out in the Journal of Practical Pain Management, for the two people since that tried ECT for CRPS, neither had particularly good results. And I know I found out, much to my surprise and that of my doctors, as they were attempting to schedule in-patient ECT treatment for me using ketamine as the anesthetic - because it was hoped that there would be a synergistic effect in light of the marked similarities on PET scans of changes in regional cerbral blood flow between patients on ECT and ketamine - that as a matter of law-by-initiative ECT can only be given in the State of California for defined psychiatric conditions, unless done through an IRB approved study, on account of which, chronic pain of any sort doesn't cut it. Published research notwithstanding.)

Mike

I find it most interesting how Schwartzman et al now describe CRPS.

"CRPS is now generally regarded as a systemic condition that involves both central and peripheral components of the neuraxis and the interactions between the immune and nervous systems”

Additionally for those who have to combat the less informed doctors, this paper discusses "Patterns of Pain Spread"

I would like to suggest to the moderators that this tread be considered for a sticky note for everyone new and old.

MsL

That is a good idea.... anyone here can add this thread link to the Useful links and websites in the sticky above.
We do that on PN all the time.

How is that done Mrs. D?

I've searched all the tools and can't locate a button that will allow me to make this thread a sticky note.

Thanks.

MsL

Making endless stickies can clog up a forum.

Instead, just highlight the link to this thread, and past it in the existing sticky Useful Websites...you can put in a bit of explanation as you think is necessary, or you can quote part of the paper etc.

You in essence make a new post to that existing thread.

This is the link to that existing sticky:
http://neurotalk.psychcentral.com/thread247.html

Dear Ms. L -

I had missed that redefinition. Thank you.

But as a general point, the "less informed doctors" are not whom one might think. In 2006 I was totally blown off by the neuro-immunoly group in the Mayo Clinic's Department of Neurology, in my hometown of Rochester MN. None of them would see me when I was going through the Clinic on largely other issues, because they didn't reccognize CRPS as a neuro-immune condition, by which they basically meant MS. A similar result at Johns Hopkins, but with a twist: they didn't rule it out at the laboratory level, but were without means to put it into clinical practice, which I guess was fair.

On the issue of Mirror and Graded Motor Imagery Therapy - as in, where is it (?) - I got an answer from my long time neurologist today, who also does a lot of work with stroke victims. The issues are cost control and economies of scale. Basically, in almost all the studies done to date, much of the work was done by the high priced help. In order for this to work in practice, there would have to be enough work in one place to justify the training of therapists. And where the same routines could work with both stroke and CRPS patients, a tertiary medical center or "the largest hospital" in a major metropolitan area in the U.S. might be able to pull it off, as soon as the insurance companies realize that this is going to save them money in the long run. That in turn may take larger studies with more funding that's been available so far, and it's not as though this is going to be carried by the mirror and glass industry.

Who knows? Maybe we'll get lucky and get in once it's approved for the much larger group of stroke patients, on whose behalf government grants are much more likely.

Mike

True enough Mike, there are few resources dedicated to research into RSD/CRPS, it's just not a sexy disease that attracts the big bucks and star talent. This is not meant to degrade the efforts and talents of those very dedicated individuals who do study RSD/CRPS.

That being said, recently I sat in front of a doctor considered to be a world renowned expert in the field of chronic pain (at least here in Vancouver) who flat our told me that RSD does not spread. I should send a copy of this article by Schwartzman to him for his reference.

Sadly we are faced with having to live with a progressive painful condition that just doesn't have the complete understanding of modern medicine at this point in time.

Schwartzman's redefinition has caught me a bit off guard, perhaps I've been the ostrich with my head in the sand denying the inevitable but I feel a little depressed by this definition. I realize now that there is little hope to stop it in it's tracks before it takes over the rest of my body.

The good new is that many of the great minds that do dedicate their careers to this condition do continue to carry the ball forward and meet internationally to share their findings. Perhaps we will see some kind of breakthrough in our lifetime.

MsL