Rich -

Hi and welcome to the forum.

For what it's worth, I was completely in your shoe - the one for the foot that can's tolerate the compression of a sock - in thee fall of 2001, perhaps 3 months after the onset of my initial symptoms. As it was, it was another 2 months before I would receive my first truly effective treatment - in my case a "bilateral lumbar sympathetic block" (an injection of local anesthetics, in this case close to the spine and performed under fluoroscopy) administered by a pain management specialist an out-patient O.R. setting - and we now know the sooner such treatments are administered in the course of the disease (ideally in the first 3 months) the better the outcome. Or should I say, far better the outcome. So if you could beat me to the pain management doc by a couple of months, that would be highly recommended.

And another therapy that's recently taken off is the use of "bisphosphonates" - something I've been on with substantial results for years, and which many believe to be the ONLY currently available treatment that is truly effective for CRPS. See, e.g., Treatment of complex regional pain syndrome: a review of the evidence [Traitement du syndrome de douleur re´gionale complexe: une revue des donne´es probantes], Tran DQH, Duong S, Bertini P, Finlayson RJ, Can J Anesth. 2010;57:149-166, 164 (“In summary, only biphosphonates appear to offer clear benefits for patients with CRPS.”) It is however contraindicated for anyone with kidney/renal impairment or in need of major dental work: tooth extractions, root canals, etc. But check out this result - in one of the top, peer-viewed medical journal in the world - when it was administered at a significantly higher than normal but once-in-a-lifetime dose to patients who had had the disease for no more than 4 months:

Treatment of complex regional pain syndrome type I with neridronate: a randomized, double-blind, placebo-controlled study, Varenna M, Adami S, Rossini M, Gatti D, Idolazzi L, Zucchi F, Malavolta N, Sinigaglia L, Rheumatology (Oxford). 2012 Nov 30. [Epub ahead of print] [ABSTRACT ONLY]

Abstract
Objective. Complex regional pain syndrome type I (CRPS-I) is a severely disabling pain syndrome for which no definite treatment has been established. The aim of this multi-centre, randomized, double-blind placebo-controlled trial was to test the efficacy of the amino-bisphosphonate neridronate in patients with CRP-I.

Methods. Eighty-two patients with CRP-I at either hand or foot were randomly assigned to i.v. infusion of 100 mg neridronate given four times over 10 days or placebo. After 50 days the former placebo patients were given open label the same regimen of neridronate.

Results. Within the first 20 days, visual analogue scale (VAS) score decreased significantly more in the neridronate group. In the following 20 days, VAS remained unchanged in the placebo group and further decreased in the active group by 46.5 mm (95% CI -52.5, -40.5) vs 22.6 mm (95% CI -28.8, -16.3) for placebo group (P < 0.0001). Significant improvements vs placebo were observed also for a number of other indices of pain and quality of life. During the open-extension phase in the formerly placebo group the results of treatment were superimposable on those seen during the blind phase in the active group. A year later none of the patients was referring symptoms linked to CRPS-I.

Conclusion. In patients with acute CRPS-I, four i.v. infusions of neridronate 100 mg are associated with clinically relevant and persistent benefits. These results provide conclusive evidence that the use of bisphosphonates, at appropriate doses, is the treatment of choice for CRPS-I.

PMID: 23204550 [PubMed - as supplied by publisher]

[Note: the information regarding the time of disease onset in the study population comes from the article itself.]

Currently, only the most well train pain management specialist offer bisphosphonates to CRPS patients. So if I may be permitted to pick up where Neurochick left off, in terms of finding a specialist, the easiest way of finding an excellent pain management specialist the easiest way to go board certified in pain management by the American Board of Pain Medicine (ABPM), the group which certifies most of the pain management fellowships in the U.S. What this means is that, in addition to a doctor’s residency, s/he took a separate one-year fellowship in pain medicine, and then sat for and passed an 8 hour written exam; they're serious people. To find ABPM certified specialists in pain medicine in your area, go to its Public Directory. You can search by geographic area, gender and "specialty of origin" - the field in which the doctor completed his or her residency.

That said, not all ABPM certified specialists in pain medicine do a lot of work with RSD/CRPS, in fact, most probably treat lower back pain more than anything else. So for what it’s worth, you probably don’t someone who completed a residency in Physical Medicine for CRPS. In fact, for RSD/CRPS a background in neurology is probably favored, with anesthesiology and psychiatry (or in the case of my pain doc, a combination of the two) coming in tied in close second.

Alternatively, the American Board of Anesthesiology (ABA) maintains a sub-certification program in pain management that also requires a 12-month fellowship following the completion of a residency, but in its case, a residency only in anesthesiology. While I am not aware of any search engine for doctors who are so-certified, you can determine the board certification status of any anesthesiologist by just by accessing the ABA's homepage.

And when you find a doctor, it's important that you do interviewing of your own at the first appointment. In particular, you will want to know whether the physician routinely provides "medical therapies for the treatment of RSD/CRPS, information that whoever is setting up the appointment on the doctor's end - or that person's manager - should know offhand. I stress this because there is another school of pain management that's based on so-called the academic school of thought known as cognitive-behavioral pain management, aka exposure therapy, aka stress inoculation training, aka cognitive processing therapy, aka dialectical behavior therapy, aka acceptance and commitment therapy ("there is no cure so just stop searching for treatments learn how to function without the assistance of medical or drug interventions"). FYI: while the aforementioned is coordinated largely out of the Department of Psychiatry of the University of Washington's School of Medicine, it plays at some other medical centers around the country, including the Mayo Clinic, and OHS in Portland OR.

You are looking for someone who employs multiple therapies simultaneously, such as physical therapy, pain medication, bisphosphonates and/or nerve blocks, as well as perhaps somewhat more novel therapies, such as "Mirror Therapy and Graded Motor Imagery" and/or extremely low power DC current and/or magnetic stimulation of the brain's motor cortex.

BUT, if what your hear instead is a discussion of implantable medical devices, such as spinal cord stimulators (SCS) or pain pumps, I would personally keep looking for another doctor. The bottom line on implantable medical devices being that while they are highly remunerative for the doctor, there is, for instance, little if any peer-reviewed evidence suggesting that SCS is effective in CRPS patients for more than three years: while there is plenty of evidence of too many people developing nasty side-effects along the way.

You are wise to be getting on this ASAP. Good luck!

Mike