Of Mice, Medicine, and Malefactors

Older Brother and his wife, Aunt Krusty, sent me a fabulous little doohicky from a medieval town they visited. It’s a brooch of a common design element used in the Middle Ages: a tabby cat with two tails and fabulous eyebrows offering a mouse, with the legend, “visis mu” — “here’s the mouse.”

Pewter pin of tabby cat as described in text.

Close inspection shows both letter “s”s to be upside down. I’ve known a few artisans, and they like making people twist their heads around. Besides, that’s relevant. You’ll see why.

The enclosed card contains the usual wonderfully vague, semi-academic wording saying that animals with two tails (no mention of fabulous eyebrows) are signifiers of evil forces at work, but beyond that, nobody really knows what this means.

I thought some academics kept cats…?

My lovely polyglot friend Sylvie does. Sylvie is a CRPS compatriot who lost a frightening percentage of weight late last year, from which she’s still recovering. Her cat Nala has become a serial killer of the entire species Rodentia, bringing her grisly accomplishments to lay at Sylvie’s feet — or couch, or pillow — with startling frequency. Naturally, they aren’t always quite dead.

Pinto cat biting into white mouse on a lawn.

Not Nala, but a kindred spirit. Photo Tomasz Sienicki @ Wikimedia Commons.

Cats don’t have thumbs, so they don’t really get it about cooking and cupboards. All Nala knows is that Sylvie obviously needs to work on her hunting skills, but in the meantime, Nala can at least help her fatten up.

Also, cats tend to gatomorphize, just as those of us who are close to them tend to anthropomorphize. Nala has no idea that mice, gophers, shrews, and moles do Sylvie no good at all; that, on the contrary, they’re upsetting, messy, and potentially infectious. Nala thinks they’re good, and Nala cares for Sylvie, so they must be good for Sylvie.

She honestly believes that, with all her furry, loving little heart. “Visis mu! Have this great mouse!” So the slaughter continues.

Sylvie’s garden blooms, but her house is an abattoir at times. This is not a bad metaphor for explaining one of the more difficult aspects of being under a doctor’s care.

Most doctors really mean well. Becoming a physician takes an enormous amount of work, which requires great commitment to complete. It’s a hard job with ridiculous hours, especially for the first few years.

That doesn’t mean they’re all bright or gifted or even humane. It just means they believe in the value of medicine and surgery, enough to spend a decade or more learning to do it.

Line drawing of doctor going over an x-ray with patients.

There is much care and dedication among many doctors.

Doctors are intensely, let’s say, socialized to stay within the parameters of accepted practice. It keeps them out of trouble, although it may also keep them from true excellence at times.

Mostly, they love those parameters. They love having guidelines. They are truly, madly, deeply convinced of the value of the meds and procedures that they’re trained in. It doesn’t help that, if they put a foot wrong outside of those parameters and things don’t go well, they can lose everything. They are heavily incented, so to speak, to stay inside whatever they understand their parameters to be.

And, of course, the peer pressure is enormous.

And, of course, the peer pressure is enormous.

Now, this is tough for CRPS patients. There is so much variation from one CRPSer to the next, that there are NO established treatment parameters that meet the medical gold standard of being consistent, repeatable and reliable over a majority of patients.

None. Nada. Zilch. There is not one thing that consistently works well for most of us — at least nothing that comes from a bottle or an operating room. Activity, rest, hydration and nutrition all seem to be key, but even their benefits are hugely variable, and you rarely hear about them from physicians.

For a while, it was thought that COX-2 inhibitors combined with membrane stabilizers, came close to being a semi-magical bullet. (Gabapentin/ Neurontin, pregabalin/Lyrica, and so on, are known to most patients as anti-seizure meds, but many healthcare providers call them membrane stabilizers.)

Then it turned out that the Dr. Scott Reuben, the physician who popularized that treatment, was making the numbers up (here, reported to his colleagues and here, reported to science fans.)

Old poster of a show called, "Pinocchio, the tale of a marionette"

He was so busy being a puppet of the drug companies paying him, that he forgot what it means to be real.

COX-2 inhibitors were given a general thumbs-down over cardiac effects (which many people with chronic CRPS have enough trouble with anyway) and, as peri-surgical meds, did not live up to Reuben’s promise that subsequent chronic pain would be less.

Ironically, it had already been established that 500 mg of vitamin C two or three times daily for 3 months after surgery does have significant demonstrated benefit, reducing the incidence of CRPS – the most intractable and severe form of chronic pain – by 35-80%, depending on the extremity, extent of injury, and probably the degree of compliance. Moreover, vitamin C is very cheap, as well as very effective. (See extensive links list below.)

The anti-seizure meds, unfortunately for pain patients, did not get removed from first-line treatment.

By then, unfortunately, whole nations (Great Britain and the Netherlands, take a bow) had adopted Reuben’s corrupt recommendations for first-line treatment. It takes a lot more effort to undo that level of adoption than it does to hoodwink an entire sub-economy of peer reviewers and medical specialists, apparently.

The arrogantly reputable journals that accepted his work, and subsequently published other work which was based unquestioningly on his false results, are still trying to live it down. What’s interesting is that other doctors couldn’t replicate his results, so he was the only one publishing these great data… yet journals and physicians continued to publish and follow his recommendations. I do hope the journals revised their “peer-review” process to include more actual, I don’t know, reviewing, perhaps by peers.

Old cartoon of Pinocchio sitting on a pile of books, with a book open on his lap.

It took a lot of people to permit and perpetuate Reuben’s false reports. They are not innocent.

It could take decades to undo much of his damage, and meanwhile, the advancement of treatment has been down the wrong track for years, while other more appropriate avenues of treatment have been ignored or even forgotten.

So, millions of CRPS patients are being first-lined with truly obnoxious meds with iffy benefits and ghastly side-effects, rather than being examined as individuals, and assessed as to whether:

  • neurotransmitter support, most provably with antidepressants, would be more appropriate, given disease-related onset of affective symptoms (antidepressants), sleep problems (tricyclics), or dysautonomia (SNRI);
  • a short, hard attack of narcotics and aggressive PT would answer in the case of a hardy, active, or young person;
  • a proprietary or tech-based treatment, like TCMI or Calmare, are indicated for those who show active neuroplasticity or respond well to electrical stim; or
  • this person is a good candidate for ketamine protocols of one kind or another, some of which are no more toxic than membrane stabilizers.
  • it might be reasonable to try a more experimental approach which has demonstrated significant promise, notably magnesium infusions, immune globulin therapy, or temporary immune suppression.

Oops… Doctors, as a group, forgot to look at the patients in their excitement to have a designated treatment protocol. “Visis mu! Take this mouse – it’s government approved!

If you've worked with government agencies, you know why they're laughing.

If you’ve worked with government agencies, you know why they’re laughing.

But the doctors doing the offering really think this is a great idea. That’s what the guidelines say, after all, and they are evidence-based – except that that evidence was cooked.

While anti-seizure meds do work very well for some, starting with them reflexively is not reasonable: the cost-benefit profile is worse than most of the other potential first-line alternatives, due to high rates of side effects and comparatively unimpressive rates of usefulness.

Using them as a first-line treatment delays more effective, lower-cost treatment for many people in horrific pain, and, between the delay and the cognitive and neurologic side effects of this class of drugs, causes greater impairment (with higher associated costs) in far too many. It should be a second or even third line treatment, if you go by the evidence that has remained credible – taking a back seat to less fraught (not perfect, but still less problematic) therapeutic agents and interventions.

But the docs who lean on it really think it’s great.

sketch of excessively happy doctor running with a hypodermic needle

“Visis mu! Visis mu! Look – it’s a great mouse!”

Reminds me of my previous pain doctor, a competent technician with a bedside manner directly related to the patient’s appearance. He has a good reputation in his area – which tells you what a lot of rubbishy practitioners there were in the area.

He wanted to shove into the neck of my spinal column a couple of widgets which were the size of Starbucks drinking straws – you know, those really fat ones that you could suck a steak through, if it’s tender enough. Two of those, jammed into a six-inch length of a space that didn’t have enough room for one, and which – as we now know – was already inflamed in much the same way that the spinal cord of someone with a spinal cord injury is inflamed.

He liked it because shoving surgical hardware into other people’s bodies is what he does best, and these widgets have embedded electrodes which could zap the pain signal at the spinal root of my arms and he thought it would work really well and I had the right psych profile for it and this was the greatest thing since sliced bread.

"Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!"

“Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!”

It was a nice idea, and, again, this particular thing works spectacularly well for some people. For me, not so much. In fact, it was a disaster. It was truly worse than the CRPS pain, which takes some doing. The equipment trial still gives me spasms due to the mere memory of the staggering physical trauma it entailed.

Truly, each of us is unique.

Once he realized that I couldn’t accept his mouse, his whole manner changed. Just like a sulky cat, nursing his disappointment seemed a lot more important to him than finding something that would help me.

How could I be so callow and blind that I couldn’t appreciate this great mouse he wanted to give me? There’s just no helping some people! His neglect and disaffection was so damaging I had to fire him and move on to the excellent Dr. Richeimer at USC Pain Center, 4 hours’ drive away and worth the two-night stay in the armpit of LA.

Another dear friend, the angelically kind M, has roughly 3 dozen anaphylactic reactions a year. She is so hyper-reactive to so many things that driving past a town with the wind in the wrong direction could be the death of her. 3 dozen anaphylactic reactions a year, and she’s in her fifties now. Yes, amazing.

She saw a young cardiologist, who did what young cardiologists do: he threw upon her a huge, bloody gopher, covered in prickles and gore. “Your heart is dicky! This could kill you in a year! Visis mu, I can save you! Isn’t this exciting?”

Sepia-toned photo of a very dead, gutted gopher.

I processed this image out of respect for M’s exquisite sensibilities.

Personally, I think the appropriate thing to do is to pick that gopher up and shove it down his throat, but when a patient does it, it’s assault and battery with a biohazardous weapon.

The cardiologist, naturally, is doing exactly what he was trained to do and is wildly excited to have such a thrilling case and such interesting news. She, who already faces death on a weekly basis, should clearly get wound up about this because it might kill her if she doesn’t.

Gopher poking head out of hole, looking grumpy, with long claws and nasty teeth.

“Visis mu! This is a glorious mou — er, gopher! Check out those charming teeth, those tiny claws, that helpful expression! Awesome!

A brickbat? A muzzle? What do you think? Words simply fail. All I can think of is applying to him the kind of cat that has nine tails. It’s not a good way to model compassion, let alone tact, however.

As for me, I have to pick a primary doc for myself. My old one retired from private practice, and I miss him, because I could just walk in and look at him and he’d know.

I’m just thrilled at the prospect of training someone new, who will be a generalist treating the peripheral issues of someone with an incredibly peripheral-intensive disease. There will to be many rounds of “visis mu”, as he comes up to speed. And, since it’s all well-intended, I have to find a way to accept one or two mice as graciously as possible. One can only recoil so often before they decide they can’t treat you.

"Visis mu! I care for you, so let me do this wildly inappropriate thing, because I’m too rushed to think things all the way through!"

“Visis mu! I care for you, so let me do this wildly inappropriate thing, because I’m too rushed to think things all the way through!”

They mean well. They really do.

I never have figured out what to do when a cat, with every evidence of caring attention, brings me a mouse. I try to be nice about it, and that’s the best I can do.

Sadly, Sylvie’s furry little caregiver, Nala, departed this earth for the Happy Hunting Grounds. By a series of flukes, Sylvie wound up with a rescue cat, Filou (meaning roughly “brat” or “mischief-maker”), who has taken over her care with great enthusiasm — and much less bloodshed.


Grouped by subject.

Sylvie’s blog on “neuroalgodystrophie”, mostly French but some bilingual French/English: http://sylvieghyselscrpsdrc.wordpress.com/

Blog on managing immune suppression and chronic pain with few drugs and much natural care (not M’s, but in that field): http://www.tamingthebeast.ca/

Scott Reuben’s villainy, as reported to colleagues in Anesthesiology News:
And in Scientific American: http://www.scientificamerican.com/article/a-medical-madoff-anesthestesiologist-faked-data/

Vitamin C after surgery or trauma, value established before Reuben’s fall:
From 1999, in The Lancet: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(99)03059-7/abstract
From 2002, in Belgian orthopedic periodical: http://www.ncbi.nlm.nih.gov/pubmed/12584978
From 2007, in the Journal of Bone and Joint Surgery: http://jbjs.org/content/89/7/1424.long

CRPS at the top of the McGill Pain Index:

UK treatment protocols for GPs treating CRPS: https://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf

Netherlands treatment protocols for treating CRPS: http://www.posttraumatischedystrofie.nl/pdf/CRPS_I_Guidelines_patient_version.pdf

Relatively useful treatments for CRPS:
Most suggestions are pulled from the current IASP recommendations for diagnosis and treatment of CRPS or the pivotal work of Dr. R. J. Schwartzman, Dr. van Rijn, and Dr. Breuhl (part of the team that developed the IASP guidelines), with updates from recent science available on PubMed.

Dr. Robert J. Schwartzman’s seminal works..
Outstanding primer on CRPS and what it can do in Systemic Complications of Complex Regional Pain Syndrome
Neuropsychological deficits associated with Complex Regional Pain Syndrome

Dr. van Rijn’s Spreading of complex regional pain syndrome: not a random process

IASP current recommendations: http://onlinelibrary.wiley.com/doi/10.1111/pme.12033/full#pme12033-sec-0023
Simplified diagnostic tool using IASP criteria: http://biowizardry.info/wp/2014/12/the-hidden-simplicity-of-diagnosing-complex-regional-pain-syndrome/

The authors have their blind spots and biases, of course, so researching any therapies that sound interesting is a good use of time.

The National Library of Medicine at the National Institutes of Health (U.S.) is an outstanding clearinghouse of articles from peer-reviewed scientific journals: http://www.ncbi.nlm.nih.gov/pubmed/?term=complex+regional+pain+syndrome
Just add the term of the treatment you’re interested in to the MeSH term, “complex regional pain syndrome”, to maximize useful hits.


Teaming with other orgs? (With annotated list of online CRPS resources for patients and professionals)

One of my compatriots posed interesting questions on one of my online groups: why don’t we work with larger and better-funded orgs? Why do we have no chapter-based organizations for this disease?

I strongly suspect that there are several issues intertwining to create this lack:

  1. Until recently, this disease was so poorly understood that there were no stable diagnostic criteria, let alone a stable name. This means there was no coherent banner to gather under. Coming from over a decade in health care, most of it as an RN, I can definitely say, as a matter of practical politics, that the medical community will NOT come together over an ill-defined disease. Without the legitimacy the medical community brings, it would be mighty hard to find any major or stable funding sources for an illness. It’s pretty much impossible to get more than a passing nod from larger orgs with well-defined goals.
  2. It’s still believed to be terribly rare, but in fact it’s hideously underdiagnosed. In studies where people are followed post-injury or post-surgery by professionals trained in CRPS diagnosis, it’s been noted that 7%-18% of those patients develop CRPS, and that’s just in the studies I’ve seen while looking for other data. That’s not too darn rare at all! (Naturally, with prompt and skilled treatment, there is a high rate of remission in these early diagnoses.) This level of under-diagnosis is even more worrisome for established orgs to deal with. Doctors, when acting en masse, are conservative to the point of being reactionary, and don’t welcome uncertainty.
  3. Nobody with pull advocates for CRPS, or at least nobody with the clout to make funds follow. (Paula Abdul is not widely seen as a leader, although she has many gifts, and — sadly — MacGyver has been in reruns for years.)
  4. Only in the last 10-15 years or so has CRPS treatment been functional. Until then, the most usual process was to drug us into silence and wait for us to die, which — with care — typically took 25-30 years of progressive weakness, pain, fragility, and debility. Such a flaccid population is not interesting from the outside. Sad, but true. Therefore, we only have about a decade of CRPSers who can function and advocate and ever do anything besides just try to cope. (Only a few enlightened doctors did anything differently. Pediatric treatment led adult treatment by a couple of decades, I suspect because they had parents without CRPS insisting on functional treatments; these kids then grew up.)
  5. Due to the twinned issues of ignorance about CRPS and poor communications technology, it’s only been about 8-10 years that we have had a truly networked society of CRPSers to refer to. Many of us, who’ve had it for longer, still remember how close we came to ending it all out of sheer isolation, fear, and desperation, but now we have allies at the end of the keyboard.
  6. Last but by no means least, CRPS IS EXHAUSTING. Pain is exhausting. Weakness is exhausting. Dysautonomic responses are exhausting. A cardiovascular system that can’t quite figure out which way is up is exhausting. A brain that keeps firing false signals is exhausting. It’s just exhausting. It’s worse than a full-time job with full-time overtime and no benefits. It’s worse than medical school. Worse than law school. Worse than both combined, topped by a never-ending case of the flu and being followed around by a thug with a live cattle prod. We don’t get much of a break for other work, though by gosh, some of us sure do try!

You’ll notice that successful orgs are run by our loved ones or doctors, rarely by CRPSers themselves. It takes a whole lot of energy to run an organization. (This is why I aim for full remission in my search for a cure. I want to have the physical/physiological slack to do the work I really intend to do.)

I think we’re getting on for time to have these kinds of alliances and that kind of localizable organization. I can certainly see why it hasn’t happened until now, but the situation has changed.

There are a number of organizations that recognize CRPS as something they’ll include under their umbrellas, like the (now defunct) American Pain Foundation and Women In Pain. I wouldn’t call them alliances, because we certainly aren’t equals; at this point, we’re ugly stepchildren in the world of medical movements, because we have a disease that is hugely ignored, incredibly complex, and desperately exhausting.

However, there is a future. (There is always a future.) This future includes the fact that we are better organized than we have been until now, better informed than most providers, and can pool our efforts to accomplish far more together than any of us could do alone.

When reading this list, keep in mind, these orgs are not competitive. Each org focuses on its main mission, and does it well (unless stated otherwise, and then that is my opinion.)

It’s important to leave that struggling, pushing mentality behind; we’re all in this together, and we all have something different to bring to the table. Together, we are stronger than we are alone… At times, our self-described allies may need to be reminded of that — tactfully, of course.

The more well-run orgs there are that focus on this disease, the merrier! We need to be able, collectively, to provide many points of entry and to respond to a variety of learning styles, expectations, and needs.

As far as I know, there is no decentralized, patient-run organization which provides a blueprint for opening chapters and simplifying the work of educating and informing local citizens, providers, news outlets, and legislators. While a distributed org is a great idea, up until now, it was a luxury we could not afford. Perhaps it’s time to open up and broaden our reach. (There is a Facebook group, RSD/CRPS Research and Developements, which provides striking postcards with links to current articles on CRPS to distribute to doctors, which is an important step.)

Here are the organizations I know about, and what I know about them. I’ve indicated which are CRPS specific, and which are broader orgs which admit CRPS under their umbrella. It’s not exhaustive, nor should it be. I’m including only what I think would help, and mentioning a few that won’t in order to point out what qualities to be wary of.

CRPS org: Reflex Sympathetic Dystrophe Syndrome Association (RSDSA)

This is probably the most famous of the CRPS online resources, although it still uses the deprecated name, RSD (see Point 1 above.)

RSDSA is driven by physicians and archivists. They are a clearinghouse for medical information and conventional diagnostic and procedural issues. They’re highly reputable in that area, and they don’t even try to do anything beyond that. They provide funding to update CRPS diagnostic criteria as medical understanding of the disease improves.

Great place for medical articles about CRPS to take to the doctor, and essays to help you have some idea what to expect.

CRPS org: CRPS org: American RSD Hope

The people behind this site clearly work hard on developing and maintaining content. In a field as fast-moving as neurologic anything, this is pretty impressive. Their drop-down menus are excellent, and the material they cover is exhaustive. They do a generally good job of being fair and discussing all sides of a topic with reason and clarity. One of the founders has had CRPS for roughly 40 years, which blows me away.

While RSDSA is good for things to throw at your doctor, RSD Hope is a good place to spend time for yourself and with family and friends. Highly recommended.

CRPS org: CRPS UK Clinical Research Network

This is a research collaboration between a number of United Kingdom National Health Service Trusts and British universities, including Cambridge and Southampton. The medical pedigree is nearly bullet-proof.

They are heavily oriented towards professionals, except for the part about recruiting patients for studies. They only have about 300 enrollees, so if you’re a Briton with CRPS interested in participating in a study (not just meds, but demographic and behavioral studies too, including a current study on relationships between partners when one has CRPS) then do contact them.

CRPS org: Complex Regional Pain Syndrome – New Zealand

Patient-run website, with a Links page including treatment centers in NZ and online support groups for New Zealanders. There are videos of several CRPSers, so for those who benefit from that, it’s perfect.

Caveat Emptor: We’re about to get into wobbly territory. Proceed with caution.

CRPS org: International Research Foundation for RSD/CRPS, a.k.a. International Foundation for CRPS & RSD, a.k.a. RSD Foundation

This is run by a physician in Florida who specializes in high-dose ketamine infusions. Much of the site is devoted to flames against those who disagree with his views.

The diagnostic criteria he lists are 12 years old. The intellectual and emotional biases in the site are too blatant and bitter for me to recommend the site generally. If you’re already committed to high-dose ketamine, then the videos may be useful.

Now, let’s look at some organizations that seem to make room for CRPS under a wider umbrella of relevant issues. If any CRPS org or individual were to approach them, it seems like the very first thing we’d need to do (with the exception of the first on this list) is let them know what the disease really is.

Umbrella: USC Center for Pain

My excellent doctor at USC is also head of USC’s Pain Center. The Pain Center is a charitable org which has an annual walk/run/roll in October called Quench the Fire (http://www.quenchthefirerun.org/). I hear it’s good fun, but it’s too early in the morning for my dysautonomia. There is info on the disease and they are working on a study about how the way we talk about pain affects how others see us. Send your friends and family over — better yet, send your enemies and detractors, because they’ll come off looking terrible but yielding good info about how they think: http://painnarratives.adamswenson.net/index.php

The org is credible and informative, but its brief is somewhat limited and its physical location is highly local.

Dr. Steven Richeimer has a video of his hour-long presentation on CRPS for medical students at http://keckmedia.usc.edu/Mediasite/Play/8d9f15df5f2e4cc59278a0d14ed5cf791d

Umbrella: American Foundation for Pain (AFP) — neutralized

The AFP was well known, was reputable despite/because of close ties to the pharmaceutical industry, and had solid contact with legislators, which it used to advocate for better treatment, more funding for treatment, and less in the way of punitive actions against prescribers. This has been confirmed in a tragic way, because they were thrown to the wolves over the last round of legislation against narcotics.

It went like this… Rather than holding the drug companies responsible for releasing misleading info, this org was scapegoated and had its funding pulled, because it got 90% of its info, and funding, from pharma — as does any congress-critter you care to name… so the politicians could act self-righteously shrill about narcotic abuse, without actually doing anything that costs the industry. That’s American politics. The companies are untouched; the charity gets rubbed out.

Meanwhile, there is no more funding for addiction treatment than there was before, which would be a rational and proven approach to the problem. And yet, there is less treatment for pain, because those of us in chronic pain who have flare-ups requiring emergency treatment “fit the criteria for drug-seeking behavior” and this wrongheaded approach has criminalized patients. [NB: Of course we’re seeking drugs! We go to the ER when we really need them! That’s appropriate!]

Lesson learned: I now lean away from American sources that are too close to legislators, even though the American science is so good, and is so depended on by governments and orgs around the world. American politics is toxic for the chronically ill, as are British politics now.

Umbrella: American Pain Association

Provides physician training and certification courses on chronic pain. Very corporate in its approach.

Umbrella: National Organization for Rare Diseases

Very helpful charitable site with info on state-by-state insurance, help with bills, legislation, medical summits, professional training, and support for patient organizations. Sadly, they still use the term Reflex Sympathetic Dystrophe and include CRPS as an alias, the only CRPS/RSD org they recognize is RSDSA (no surprise there — the director is incredibly good at networking), and — most problematic of all — specifically describes CRPS as simply a disorder of the sympathetic nervous system. Wrong, wrong, wrong. The first word of the current name is “Complex” for a reason.

If anyone would like to approach them with updates and information, please do. Given the link to RSDSA, you’d think this had been done already, but hey, look at *their* name…

Umbrella: Women in Pain

Women In Pain has episodic successes with legislation and a photogenic public face (a real asset), so they are certainly worth a look. They they list articles regarding women in pain, list resources for pain and for women’s health, have an online guide for approaching your state government and other intimidating bodies to make a point, and they have done some work on legislation.

Umbrella: NIH National Institute of Neurological Disorders and Stroke

This is funded by the U.S. federal government and, in this pro-science administration, is doing pretty well. It is primarily a research organization and a clearing house for information, with the specific task of translating research into usable treatments.

Their description of CRPS is not bad, although it focuses on peripheral symptomatology and changes, with no reference to the central nervous system issues or core, organ, or metabolic issues. They also have the outdated idea that kids under 5 don’t get it.

Umbrella: American Chronic Pain Association

I mention this because it’s an obvious choice, not because I think it’s a good point of entry. Says it includes CRPS, but some of the basic materials completely ignore neuropathic/neurogenic pain. The site reads like it was written by a hospital administrator, and their info for professionals was posted in 2007 — and apparently never looked at again.

This might be a good org to approach with updated info and better integration, if anyone is interested in contacting them and creating an ongoing dialogue. I have no idea if that would go well, but it may be worth trying by someone more diplomatic than I am.

A note on how old the info should be

Be deeply suspicious of older protocols or professional training tools, with CRPS. The most recent, reputable, international diagnostic guidelines are from 2013, funded by the RSDSA. (Full text here: http://onlinelibrary.wiley.com/doi/10.1111/pme.12033/full .) The IASP criteria, which are widely accepted at least partly because they are sufficiently vague and old as to let the insurance companies opt out of paying for a lot of effective treatments, date to 1994; the RSDSA has channeled funding for periodic updates, of which the “Budapest criteria” from 2003 is the most famous, but they are not necessarily accepted by insurers or providers.

A note on faith-based orgs

My focus is relentlessly secular and heavily scientific in searching for info and support sites. This is partly due to the cultural cross-compatibility of science in medicine, which is key, and perhaps partly due to an idyllic childhood in a region that’s now so torn up with religious strife that it’s hard for me not to see a long-term agenda lurking under every burning bush. I’m not equipped to evaluate faith-based orgs.

However, for those with religious or spiritual leanings one way or another, there is generally an org to be found which supports people in pain or with chronic illness (if not with CRPS particularly) and which follows your particular path. If that helps you, I suggest you look into it, whatever your faith, and please link faith-based orgs which provide solid, useful information in the comments below.

I can say, with absolute certainty, that there is tremendous value to having a strong inward life — whatever you call it, and whatever form it takes.

A note on Anglo-centricity

You’ll have noticed that these are all English-language sites. I don’t have sufficient command of any other language to assess sites in other languages. I’d appreciate suggestions, ladies and gentlemen.

As yet, as far as I know, there is no decentralized, patient-run organization which provides a blueprint for opening chapters and simplifying the work of educating and informing local citizens, providers, news outlets, and legislators. Who would like to start putting one together? I’ll help, but I’m working on this publishing and online art project…

Diagnostic guidelines for different countries


IASP-derived guidelines used as the basis of payment and treatment are available to physicians and insurance adjusters, but not patients or the public. I can’t find them online for free. (Now what does that tell you…?)
Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines, 4th Edition


Dated 12/2011, due for revision in 2016:
Diagnosis and management in adults: Concise guideline


Available in Dutch and English, with a version for professionals and a version for patients, dated 2006: http://pdver.atcomputing.nl/english.html
Bonus material here: a 5-language foldout card with very basic info (from their guidelines) for emergency treatment:


In 2010, the Japanese published a refinement of the IASP diagnostic criteria that better served the Japanese demographic. The paper describing these refinements is available for purchase here:


I looked for specific criteria used in Korea, where a lot of active research is being done on diagnosis (thermography, scintigraphy), characteristics (HPA axis and affective/social changes) and treatment (temporary immune shutdown), but they seem to rely on the Budapest criteria, established in 2003. These are considerably more useful than the original, rather loose IASP criteria, and have been the basis for every revision of the diagnostic criteria since. There have been several revisions; the most recent was in 2013.
A Korean patient site is here: http://www.crps.co.kr/web/index.php

I looked for diagnostic criteria specific to other countries, but my language and my search tools aren’t good enough to find them, if they exist.

For better or worse, English is the common language of medical science training and practice over much of the world. This makes it easier for Anglophones to find the information they need, but it presents a real problem for those who have trouble with such a strange and wordy language.

Links list

Organizations, in the order listed:

  1. Reflex Sympathetic Dystrophe Syndrome Association (RSDSA)


  2. American RSD Hope


  3. CRPS UK Clinical Research Network


  4. Complex Regional Pain Syndrome – New Zealand


  5. International Research Foundation for RSD/CRPS, a.k.a. International Foundation for CRPS & RSD, a.k.a. RSD Foundation


  6. USC’s Pain Center


  7. American Pain Association


  8. National Organization for Rare Diseases


  9. Women in Pain


  10. NIH National Institute of Neurological Disorders and Stroke


  11. American Chronic Pain Association


Diagnostic guidelines:

Bonus links: