Dear Nancy -
You've touched on what is probably the single biggest "mistake" in the treatment of RSD/CRPS in the North America today. In some countries in Europe (Germany for one) they wouldn't think of requiring a patient in tremendous pain consistent with CRPS to display "objejective indicators," because by the time they do, the odds are that the window has long closed on the most effective therapies: an agressive series of blocks of "low dose" ketamine infusions, both of which have been shown to be more effective in the acute stage of the disease, or what I am advised is the practice in Germany, pumping local anesthetic directly into the center of the pain for a period of hours or days.
And I use the word "mistake" advisedly. The insuance companies (WC and otherwise) are being penny wise and pound foolish. As one of the mods (sorry, I can't remember who) commented the other day, the reason why we don't hear about folks who got agressive treatment up front is that they aren't sick and consequently aren't on the boards. And it's a mistake rather than a conspiracy for one simple reason: the "present value" of paying for agressive treatment now is far greater than a lifetime of care, medical and otherwise.
IMHO, the most important thing that leading CRPS docs could do would be to publish an article to that effect in a leadinging medical journal of general circulation (JAMA or NEJM) so that word could get out to non-pain specialists to
immediately refer patients with severe and unexplained pain to a pain specialist.
What I do know is that in my case, after being diagnosed with sympathetically maintained pain, following a positive response to bilateral lumbar sympathetic blocks, I managaged through a family connection to get an appt. with one of the Mayo Clinic's leading peripheral neurologists specializing in CRPS, who ran an exhaustive series of tests, sweat responses, etc., before pronouncing that I didn't have RSD because I had none of the objective markers: many if not most of which came within a period of 2 -5 years later. Little did I know that at the same time she was seeing me, she was the lead author of study in which there had to be an agreed set of symptoms by which any two doctors, reviewing the same chart, would make the same diagnosis, and by which they utilmately found an incidence rate of 5.45 per 100,000. For a study specifically criticizing this methodology and finding a far higher incidence of CRPS when correspondance with actual treating physicians was brought into th equation as well (26.2 per 100,000), see, "The incidence of complex regional pain syndrome: A population-based study," de Mos M, de Brijn AGJ, Huygen FJPM, Dieleman JP, Stricker BHC, Sturkenboom MCJM,
Pain 129 (2007) 12-30, a free full text copy of which is available through the RSDSA Medical Article Acheive webpage at
http://www.rsds.org/2/library/articl..._pain_2006.pdf. In discussing the earlier Mayo Clinic study, de Mos et al say as follows:
The study of Sandroni and colleagues used the IASP criteria, which were applied retrospectively to information from electronic medical records. We also used a retrospective approach and used both electronic medical records as well as information from GP questionnaires and specialist letters for the diagnosis. In contrast to Sandroni we did not require that all cases should fulfill diagnostic criteria; we retained all cases on the basis of a reconfirmed diagnosis of CRPS by the GP or specialist.
Criteria sets were also applied on a subset for which detailed diagnostic data were available, but were used merely to see differences in criteria sets. However, an incidence rate based on the strictly applied IASP criteria (IR: 16.8 per 100,000 person years), as done in the Sandroni study, was calculated and was still almost three times higher in our study as the incidence rate found in Olmsted County (SMR = 2.7). Remarkable is, that in our subset of specialist-diagnosed cases 86% fulfilled the IASP criteria, compared to 19% of the cases in the Sandroni study. The supposedly high rate of incorrectness of the CRPS diagnosis (81%) in the Sandroni study has been questioned by others before (Bennett and Harden, 2003), and suggests that the retrospective application of the IASP criteria to information on electronic charts might have been overly strict. The IASP criteria are considered highly sensitive and incidence rates based on this should be comparable with incidence rates based on specialist’s diagnoses.
Bottom line: the principal relevance of a lack of "objective indicators" early in the course of the disease is, sadly, the barriers that may be (temporarily) imposed in getting effective care or compensation.
been there,
Mike