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.

Obit
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.

Links

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:
http://www.anesthesiologynews.com/ViewArticle.aspx?d_id=21&a_id=12868
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:
https://elleandtheautognome.wordpress.com/2012/09/05/mcgill-pain-index-crps-and-fibromyalgia/

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.

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The hidden simplicity of diagnosing Complex Regional Pain Syndrome

CRPS, formerly known as Reflex Sympathetic Dystrophe (RSD) or Causalgia, sometimes called Sudeck’s Atrophy, and elsewhere called Neuroalgodystrophy (among other things), is confusing to label accurately because it’s not only complex, but it’s a disease of exceptions.

In many cases, pain is not sympathetically maintained; hence the deprecation of the name RSD. Atrophy doesn’t always happen; hence the deprecation of the name Sudeck’s Atrophy. And, most importantly, it is not a psychogenic disease[1], making the name neuroalgodystrophy, or the presumptive diagnoses of somatoform disorder or conversion disorder, irrelevant — not to mention prejudicial and counterproductive.

The earliest professional description in the historical record of a syndrome like CRPS occurs in the notes of Ambroise Pare’, groundbreaking surgeon and father of forensic pathology, as well as court physician of French king Charles IX in the late 1500′s[2]. Between North America and Europe, further descriptions and case studies appeared over the next few hundred years[1]. Consistent diagnostic characteristics were described by neurologist and American Civil War battle physician Silas Weir Mitchell in the mid-1860′s[3], who saw many hundreds of cases due to the peculiarities of the ballistics used in that war.

Thus, CRPS does not qualify as a “disease of modernity”, the cluster of diseases characterized by distributed pain, lethargy, memory/cognitive impact, and immune dysfunction. In fact, it predates the Industrial Revolution by a couple of centuries. CRPS has also been described in animals[4]. In short, there is no compelling evidence that CRPS is anything other than a disruptive companion of mammalian neurology, which has become more recognized as humans are living longer despite impairments, and describing illness better.

Various attempts have been made to create coherent diagnostic criteria. Sadly, they’ve been written and published by physicians, who rarely have the distinct skillset of information architecture — but who do have lots of practice using double negatives, complex constructions, and the passive voice. The inevitably garbled paragraphs which result from using this professional style to describe the diagnosis of Complex Regional Pain Syndrome come across, however unconsciously, as sloppy and ill-defined, regardless of the underlying information.

After much thought and research, this blogger’s view is that the most recent (2013) IASP diagnostic criteria[5] may not be perfect, but are currently the best we have for all-around clinical use. Therefore, in the interests of obviating (that is, doing an end-run around) the confusion, this blogger — who is an information architect — has turned the diagnostic criteria into a simple checklist.

Once completed for each patient, this checklist not only delivers a yes/no for CRPS diagnosis, but also highlights which features of that case are salient, and where treatment of that person should probably focus.

Full-sized PDF format is downloadable and available for free under Creative Commons Share-Alike Attribution International licensure. In other words, wherever you are in the world, you are free to use and alter this, copy it, pass it on, even charge for it — as long as it contains a link to this page (biowizardry.info) or its companion page, livinganyway.com, and you don’t try to claim or assert IP rights. It’s appropriate to pass it on as freely as it’s offered to you. Use it in good health — whenever possible.

REFERENCES

1. CRPS not psychogenic; also, history of CRPS:

Feliu, M., and Edwards, C.L. Psychologic Factors in the Development of Complex Regional Pain Syndrome: History, Myth, and Evidence. Clin J Pain, Volume 26, Number 3, March/April 2010.

2. King Charles IX, 1550-1574, had persistent burning pain, muscle wasting, and contractures following bloodletting with smallpox: Pare, A., 1634. Of the Cure of Wounds of the Nervous System.

The Collected Works of Ambroise Pare. Milford House, New York.

3. S. Weir Mitchell, Morehouse and Keen on causalgia:

Gunshot Wounds and Other Injuries of Nerves. Philadelphia: JB Lippincott Co., 1864.

«As to pain, I am almost ready to say that the physician who has not felt it is imperfectly educated.» S. Weir Mitchell.

4. CRPS in animals:

Bergadano, A., Moens, Y. and Schatzmann, U. (2006), Continuous extradural analgesia in a cow with complex regional pain syndrome. Veterinary Anaesthesia and Analgesia, 33: 189–192.

PMID: 16634945

5. Yet another link to the PDF of the Diagnostic Criteria checklist:

http://biowizardry.info/wp/wp-content/uploads/2014/12/CRPS_Diagnostic_CheckList.pdf

Creative Commons License
CRPS: Diagnostic Checklist by CRPS Publications is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

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Intrathecal Baclofen vs. intramuscular Botox for CRPS-related dystonia

If you’re considering injectable therapy for CRPS-related dystonia, you have probably heard of Botox (which is commonly used in spine-injured people to help with spastic bladders and other muscular issues), and you may have tried oral baclofen, which has the systemic and cognitive effects of its class. You may not know that baclofen can be injected into the spinal cord (intrathecally), providing therapeutic effects below the level of injection.

Based on the studies found in Pub Med, baclofen is far more effective, but requires more vigilance, largely due to it’s invasiveness and the equipment issues of intrathecal injections.

Botox doesn’t seem to do anything consistently in CRPS, for either dystonia or pain, except perhaps for prolonging the effect of stellate ganglion blocks; its rate of complications is low.

Of course, it does work for some people, but that can be said of almost any Level 2 or Level 3 medication used for this condition. CRPS is highly individuated, and its treatment certainly has to be individualized. This is the one constant feature of CRPS management.

On the basis of overall results, I would expect to see a wider acceptance of a more generally effective agent like baclofen, over the popular but generally insipid Botox injections.

Dystonia, unlike pain, is specifically crippling, even in a mild case. It impairs function in the most basic life tasks, from walking to eating.

INTRATHECAL BACLOFEN (ITB)

• Studied in CRPS since 2000.
• Results generally very good for dystonia, pain, or both. The best- designed study on dystonia showed excellent results.
• Doesn’t work for everyone (of course.)
• Dose and duration must be sufficient.
• Careful monitoring for complications.

INJECTED BOTOX

Pub Med only has two relevant studies.
• Of these two studies, one says it’s useless for dystonia, one says it’s great for pain.
• One study for allodynia: it’s no good.
• One study for improving stellate ganglion block: it’s excellent.
I haven’t looked outside of pub med. I’d be interested to see more solid data about it. This seems pretty random.

These bullet points, plus accompanying tables showing the studies and results referenced here, are in the PDF below.

ITBaclofen-vs-IMBotox

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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

US

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
http://rsds.org/pdfsall/CRPS-guidlines-4th-ed-2013-PM.pdf

UK

Dated 12/2011, due for revision in 2016:
Diagnosis and management in adults: Concise guideline
https://www.rcplondon.ac.uk/resources/complex-regional-pain-syndrome-guidelines

Netherlands

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:
http://pdver.atcomputing.nl/sos_pages_en.html

Japan

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:
http://www.painjournalonline.com/article/S0304-3959%2810%2900182-X/abstract

Korea

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)

    http://rsds.org/index2.html

  2. American RSD Hope

    http://www.rsdhope.org

  3. CRPS UK Clinical Research Network

    http://www.crpsnetworkuk.org/index.php

  4. Complex Regional Pain Syndrome – New Zealand

    http://crps-nz.org

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

    http://www.rsdfoundation.org/crps.html

  6. USC’s Pain Center

    http://helpforpain.com

  7. American Pain Association

    http://www.painassociation.org/

  8. National Organization for Rare Diseases

    http://www.rarediseases.org/

  9. Women in Pain

    http://www.forgrace.org/women/in/pain_home/

  10. NIH National Institute of Neurological Disorders and Stroke

    http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

  11. American Chronic Pain Association

    http://www.theacpa.org/

Diagnostic guidelines:

Bonus links:

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Good findings and bad conclusions on post-op pain treatment

Today’s “egg in your face” article from the American Academy of Orthopaedic Surgeons (via Science Daily) says:
One out of five adult orthopaedic trauma patients sought additional providers for narcotic prescriptions

http://www.sciencedaily.com/releases/2014/08/140811125114.htm

Link to the original JBJS article: http://jbjs.org/content/96/15/1257.long

Overview

Sadly, the orthopedic industry is still blaming the patients:

“Many suspect that orthopaedic trauma patients may be at a higher risk for pre-injury narcotic use and ‘doctor shopping.’”

The underlying accusation of addiction in that prejudicial statement is wholly unsupported in the information provided.

Moreover, that prejudicial opening statement opposes their own findings about the psychosocial context of these people:

“The “doctor shopping” patients had an average age of 39.6 ±12.2 years, and were primarily white (89 percent) and male (63 percent). Forty-four percent were uninsured. There were no differences between the single-provider and multiple-provider groups with regard to age, sex, race, injury type, distance between the patient’s home and treating hospital, tobacco use, psychiatric history (depression, anxiety, attention deficit hyperactivity disorder, or bipolar disorder), or comorbidities.

[Emphasis mine.]

Findings vs. conclusions

Let’s address these points in order:

  1. Men handle pain worse than women. They’re not well-designed that way. White men of mature years feel entitled to be treated. (Note that people of color are more likely to avoid conventional care, for good historical reasons. Women feel greater pain for the same injury, but are used to being undertreated and ignored, also for good historical reasons.) If adult white men are restricted by pain, they’re going to get pain meds, because they must function, and they cannot function past a certain limit of pain.
  2. The uninsured (who were counted) and underinsured (who weren’t) who’ve had a recent trauma requiring hospitalization are going to be under geometrically more stress than they were before: issues of money, mortality, and function can be overwhelming; work may be hard or impossible because of the injury, so ongoing survival is at risk; and recovery may be threatened because of the interplay of stress, undertreatment, and lack of rehabilitative care due to insurance and financial issues… all of which exacerbate post-operative issues and grind in stress levels. Any guesses about what significantly higher stress levels do to pain and pain tolerance over time, not to mention healing speed and nutritional needs? Right. More pain meds are needed.
  3. Most importantly, there are NO CORRELATIONS with the biggest addiction of our age, tobacco, nor with psychiatric history or logistical issues; these folks aren’t out for an easy fix, they’re doing what it takes to get what they need. (It’s important to reiterate that these scientists discovered those points themselves, but ignored them.)

This last issue, alone, is a big fat hairy clue that postoperative orthopedic pain is undertreated nearly 20% of the time — not that 20% of these ordinary folks are suddenly mainlining narcotics or flogging them for a few bucks a tab.

Two more points deserve critical attention:

Patients with a high school education or less were 3.2 times more likely to seek multiple providers (p = 0.02), and patients with a history of preoperative narcotic use were 4.5 times more likely to seek multiple providers (p < 0.001).

People with higher education have better command of information, can generally get their hands on better nutrition, and can more easily seek modes of self-care other than, and in addition to, conventional medicine. Assuming that, just because people are poorly educated, they must be seeking drugs for recreational use rather than because they don’t have access to good alternatives for pain management (including less physically demanding work), is a straw-man argument with contemptibly classist roots. I suspect I’m a lot closer to a lot more poorly educated people, and have made a much closer study of the data around their decision-making processes, than these orthopedic surgeons.

As for the second point in that quote, there was no assessment as to why people were taking narcotics pre-injury, and the assumption that doing so is necessarily wrong is blatantly daft.

People who are already being treated for pain, and then go through something as brutal as orthopedic surgery, know full well what’s going to happen if they ask one doctor for all the pain control medication that they need. Because their physiologic margins are already being stressed, it is perfectly reasonable to expect their medication rates to be higher, but the guidelines for narcotic administration don’t allow for that outside of late-stage cancer treatment, because cancer patients are presumed innocent where other pain patients are not.

Moreover, people who live with pain tend to have a harder time moving and are physically slower to react, so they are more likely to get injured. I speak from bitter experience. It doesn’t mean the pre-op narcotic use is inappropriate, but instead follows logically from the nature of living in pain.

The echoing silence on that issue alone pollutes all the rest of the study.

Consider the source

This prejudicial article would need to look elsewhere for data to support the idea that ~1/12th of pre-op and 1/5th of post-op orthopedic patients are users or pushers or both, but it consummately fails to do so.

As a sometime RN in homecare and emergency care, as well as a longtime pain patient with an orthopedic-surgery-triggered iatrogenic disease and a wide network, I find it far more believable that orthopedic pain is hideously undertreated. On top of the usual issues around invisible problems and pain conditions, orthopedic surgeons really don’t get it about how deep and hard that pain is.

They trivialize pain and recovery time because they don’t see the patient through to 100% recovery, only to the point where they aren’t likely to have acute complications. Thus, they really don’t understand the impact it has on real life. Far too few orthopedic surgeons have undergone major injuries, let alone orthopedic surgery, and fewer still have had complicated recoveries.

Basically, in orthopedics, the blind are treating the lame.

The real issue: narcotic abuse is on the rise

I’m not dismissing the anxiety in the article. Diverting narcotics is a real problem with ghastly consequences, including a tragic death toll and wholesale disruption of families and communities. Dealing with that as an addiction issue from a public health standpoint and a community-engaged model is the useful approach. Demonizing patients is not.

The useful approach requires social spending, which is currently unfashionable despite the rate of savings (~$1:$3 to ~$1:$1000 annually, depending on issue being addressed, depth and efficiency) which it provides. Demonizing patients comes for free, but the downstream costs in health, productivity, long-term care, and ultimately police and court costs, is horrific, but rarely calculated.

It’s indefensible to continue to condemn patients to needless pain and debility, the misery and humiliation that accompanies it, and the outstandingly hateful and contemptuous treatment they get from “care” providers if they’re suspected of being drug seekers.

Repeating: I was an ER nurse; I get it about drug seekers. Criminalizing pain patients does not address that issue.

Related issue: addiction does not bar treatment

In my view, it is never acceptable to withhold appropriate treatment. People with addictions may develop pain syndromes; this doesn’t mean they shouldn’t be treated with them. It requires more and better communication from both doctor and patient, and the patient’s physical needs have to be met within the context of their behavioral needs.

If I were treating someone with addiction and pain, and found that narcotics were the best option for handling the pain, then yes, there’d be more monitoring, because that’s a practical form of support for their sobriety. Focused counseling and CBT would be appropriate, because they may need help with redefining sobriety to mean, “taking meds as prescribed,” especially as that involves the sobriety skills of honest information communication with care providers — a big step.

The current fashion for dehumanizing addicts is predictable, given the divide-confuse-and-suborn political environment, but it remains utterly unethical. The road to sobriety must be a feasible challenge before anyone can be expected to rise to it. This does not mean abandoning them with untreated or under-treated pain.

Outcomes

When the scientific establishment ignores its own findings to perseverate on an outdated, counterproductive, fiscally and intellectually indefensible meme that penalizes and further harms patients, nothing improves.

This is a problem — and because legislators and the public tend to listen to these organizations, in defiance of the hard data and common sense, it’s one that breeds lots of other problems, each one as unattractive, expensive, and useless as its parent.

Clinical takeaways

It’s important to distinguish between real needs and artificial worries. The clinical takeaways are threefold, in order to take that into account:

  • Orthopedic pain is undertreated roughly 1/5 of the time. Current treatment parameters do not account for a significant proportion of outliers, and should be used with appropriate flexibility.
  • Postoperative treatment is more problematic than ever. With nearly half the population still uninsured and many of the rest underinsured, and simultaneously pain treatment being examined more narrowly every day, then recovery, rehabilitation, and patient education around these issues is more important than ever. Every patient should go home with printed, illustrated aftercare instructions which include the following:
    • Expected timeline for stages of recovery to 100%, with instructions on how to track and record stages, and what to do for complications or setbacks before, up to, and including calling the doctor. No surprises, unless both you and your patient are surprised.
    • General, practical, ADL and work-task focused guidelines for gradually progressed activity, day by day or week by week as appropriate, until 100% recovery is expected — with instructions on how to handle variances and setbacks. No surprises, unless both you and your patient are surprised. These should ideally be written jointly by orthopedists, occupational therapists and physiotherapists.
    • Nutritional guidelines for healing. These are absolutely basic but doctors, especially surgeons, consider it beneath them. A bit like breathing is beneath them, really. Let’s focus on the facts, and the fact is that vitamins and minerals in appropriate forms and quantities yield enormous benefits (vitamin C, 500 mg BID, prevents 80% of CRPS conversions, for instance) and deficiencies in calcium, magnesium, phosphorus, B vitamins, D vitamins, protein, EFAs and antioxidants result in more complications, slower bone and soft-tissue healing, and greater post-op needs.

    Posting those instructions online in generic form, perhaps under a Creative Commons license to facilitate collaboration, could be very useful to countless patients and care providers. If you have such instructions online, please post a link to them in the comments here and share them wherever appropriate. People need that.

  • The data from the American Academy of Orthopaedic Surgeons seems good, but their stated findings are highly political, not logical or practical. Go to the data and use your own intelligence to draw conclusions, because politics change but the principles of good practice do not. We all need to be reminded of that periodically…

Postscript

Highly attentive readers will notice that the study mentioned no correlation with comorbidities. I can’t access the full text of the study, and in the outer material, there was no description of what they considered comorbid. It might imply prior illnesses or conditions, or it might not. Given the gaping holes in the work otherwise, it doesn’t make sense to weight this statement at all. There is no indication, on the basis of the available information, that prior pain or musculoskeletal issues were assessed or accounted for at all.

Links

Science Daily article, with quotes from the study authors: One out of five adult orthopaedic trauma patients sought additional providers for narcotic prescriptions

JBJS posting of the study’s outer material (full article only available with subscription; this free material is what the authors chose to show): Narcotic Use and Postoperative Doctor Shopping in the Orthopaedic Trauma Population

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Pain rating scales must describe reality, or they are meaningless

This article got thrashed in the last WordPress update. Correcting and reposting it have been added to the high-priority list… which is only a month long. // ed. 12/2015

The value of valid reporting in medicine is so fundamental there’s no question about it when the issue is explicity raised. Unfortunately, it’s implicitly absent in too many aspects of CRPS care.

The inspiration for this article came from paperwork requiring me to rate my pain on the standard 1-10 scale. This is so irrelevant to life now that it’s simply not approachable.

Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.

What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.

Read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…

Step 1: Acute CRPS, with otherwise normal responses

My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal — apart from the fact that it didn’t know when to stop:

Mental impact Physical changes
0 .
No pain at all. No change.
1 .
Hurts when I stop and look for it. No change.
3 .
Neither looking for it nor distracted. No significant change.
5 .
Noticeable when concentrating on something else. Mild nausea, mild headache, crave comfort food.
7 .
Interferes with concentration. Drop things, grip unreliable. Nausea, headache, appetite loss.
8 .
Difficult to think about anything else. Trouble picking things up.
9 .
Makes concentration impossible. Forget names. Interferes with breathing pattern. No grip.
10 .
Can’t think, can’t speak, can’t draw full breath, tears start – or any 3 of these 4.
Unrated even numbers indicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number. Note that weakness is only loosely related to pain. I drop things and have trouble picking things up at times when I have little or no pain. However, as pain worsens, physical function consistently deteriorates.

Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one pragmatic:

- Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.

- Pragmatically, in the US, health care is funded by a complex system of insurance companies. Insurance companies are profit-driven entities who are motivated not to pay. One upshot is, they don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because THESE numbers are tied to explicit levels of function.

Step 2: Early chronic CRPS, with altered responses

My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in appearance and ability:

Mental impact Physical changes
3 .
Noticeable when concentrating on something else. Trouble with new names/faces. Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist). Mild hyperesthesia.
5 .
Interferes with concentration. Short-term memory problems. Hard to retain new info. Mild nausea. Grip unreliable. Hyperesthesia pronounced; breeze feels like hot iron. Color changes noticeable.
7 .
Absent-minded. White haze in vision. Hard to build on known info. Can follow ~4 steps. May forget known names. Nausea, headache, appetite loss. Drop things. Cold to touch, often clammy. Arms & palms hurt more to touch.
8 .
Terrible focus. Behavior off-key. Can’t follow step 1 without prompting. Random long-term memory gaps. Forget friends’ names. Can’t pick things up; use two hands for glass/bottle of water. Arms & hands hurt significantly.
9 .
Speech slows. Concentration impossible. Hard to perceive and respond to outer world. Interferes with breathing pattern. No grip. Everything hurts. Swollen extremities.
10 .
Can’t think, can’t speak, can’t stand upright, can’t draw full breath, tears start – or any 3 of these 4.

Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.

Clinical note: tracking functional impairments is key to getting compensated for delivering appropriate care.

Step 3: Established chronic CRPS

And my third scale changed to describe living with more widespread pain, a higher level of disability, and — most tellingly — a physical experience of life that’s definitely no longer normal:

Mental impact Physical changes
3 .
Neither looking for it nor distracted. Forget new names & faces instantly. Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist, lower outer L leg/ankle, R foot, B toes). Hyper/hypoesthesia. Swelling.
5 .
Interferes with concentration. Anxiety levels rise. Lousy S-T memory. Can’t follow directions past step 4. May forget known names. Nausea, headache, appetite loss. Grip unreliable. Hyper/hypoesthesia & swelling pronounced. Color changes. Must move L leg. Limbs and back hurt more to touch.
7 .
Absent-minded. White haze in vision. Can’t build on existing info. Can follow 1 step, maybe 2. May forget friends’ names. Random L-T memory gaps. Irritable. Drop things. Knees buckle on steps or uphill. Cold to touch, often clammy. L foot, B toes, are dark. Limbs and back hurt badly.
8 .
Speech slows. No focus. Behavior off-key. Can’t follow step 1 without prompting. Can’t pick things up; use two hands for glass/bottle of water. No stairs.
9 .
Makes concentration impossible. Hard to perceive and respond to outer world. Interferes with breathing pattern. No grip. No standing. Everything hurts. Swollen extremities, sometimes face.
10 .
Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start – or any 3 of these 4.

Note how the actual value of each number changes over time. This highlights one of the most persistent problems with the 1-10 scale: its variability, not only from person to person, but from time to time.

At one point, 5/10 meant "Noticeable when concentrating on something else. / Mild nausea, mild headache, crave comfort food." Two years along, 5/10 meant "Interferes with concentration. Short-term memory problems. Hard to retain new info. / Mild nausea. Grip unreliable. Hyperesthesia pronounced; breeze feels like hot iron. Color changes noticeable."

Those are two completely different statements — but the number is the same! The value of each number on the 1-10 scale is essentially nil unless it has a description of what that number means at that point in time.

The usual justification for using the 1-10 scale is that it provides a point of comparison, letting clinicians know if the medication given has helped, and if so, how much. This is of tightly limited use, because it addresses pain alone without addressing function, and there is no pain medication on the market that does not have the potential to affect function. Even medicating pain effectively can leave the patient with function impaired, and that’s rarely well-addressed.

The CRPS Grading Scale

This case has evolved considerably in the past year. The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 7 or a 10? Does it matter?

I need to avoid thinking about depressing things like my pain and my disability, because I must function as well as possible, every minute of every day. I focus relentlessly on coping with these issues and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.

The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope, think, and interact in spite of it. Therefore, this rating scale remains meaningful, because it describes my functional experience of life.

There is no Grade F. Did you notice that? As long as I have a pulse, there is no F. This is rightly called “the suicide disease”, so the meaning of F is obvious.

In the words of the unquenchable Barrie Rosen,
“Suicide is failure. Everything else is just tactics.”

 

So what’s the point of all this?

Documenting patient experience in terms that are meaningful and appropriate advances the science.

The treatment for this disease is stuck in the last century in many ways, but that’s partly because it’s so hard to make sense of it. The better we track real experience with it, the better we can make sense of it.

?
Since studies, and the funding for them, come from those who don’t have the disease, this is the least — and yet most important — thing that patients and clinicians can do to improve the situation for ourselves and those who come after us.
?

This isn’t a bad snapshot of the natural history of my case, either. Understanding the natural history of a disease is a key element of understanding the disease.

Imagine if all CRPS patients kept meaningful, evolving pain rating scales, and pooled them over the years. What a bitingly clear picture would emerge!

Important legal note: These forms are available free and without practical usage limitations; to use, alter, and distribute; by individuals and institutions; as long as you provide free access to them and don’t try to claim the IP yourself or prevent others from using it. All my material is protected under the Creative Commons license indicated at the foot of the page, but for these pain scales, I’m saying that you don’t have to credit me — if you need them, just use them.

Bien approveche: may it do you good.

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Suicide, including veteran suicide, handled back to front

This article discusses suicide among returning veterans:

Suicide Prevention Expert Outlines New Steps to Tackle Military Suicide

The up-side is, it brings more attention to this national shame: “..while only 1% of Americans serve in the military, the suicide rate of veterans accounts for [20 %] of the overall total in the US.” [Emphasis mine.] They’re overrepresented in suicidal despair, even at this time of epic national meltdown, at a rate of 19:1.

There are some good ideas (badly put) under this deceptive title (new? Hardly), with an unfortunate insularity and gee-whizz ignorance in parts:  “the effects on the mental health of active-duty service members, reservists, and veterans is only just beginning to be felt.”

Only just beginning to be felt? By whom? Reports started streaming out of this population from the start!

The horrific rate of PTSD, brain injury and subsequent/consequent suicide among modern veterans has been in the news nearly since the Iraq war started. And the effects were “felt” by affected veterans and those who love them from the beginning.

That was an astoundingly insensitive choice of words, and when a social scientist is astoundingly insensitive, it automatically makes me question his insight and judgement. After all, social scientists have to pay attention to social cues and have some social awareness in order to do their jobs well.

The suggestions made by this article are,

  • Reduce access to guns and other means of suicide.
  • Watch for sleep disturbances. 
  • Prescribe opioid medications carefully and monitor.
  • Improve primary care treatment for depression.

These instructions are useful and appropriate (though not new at all), but the order puts the primary burden in the wrong place.

The reflex is to consider first how to change the patient’s context and control, and second how to change the provider’s context and control.

But which person — doctor or patient — do the policy makers have more access to?

Which has broader (and more cost-effective) reach per person?

Where does influence and support really come from — especially when the patients themselves are desperate and don’t have the resources to face what they’re dealing with?

Hint: Only one of these two people is licensed, monitored — and paid to show up.

It might be time to focus first on how to change the provider’s context and control — in this case, train primary care physicians in how to evaluate for mental health issues without losing their own minds, and make it easier for them to be more mindful, conscientious and appropriate when prescribing CNS depressants such as opioids.

Policies regarding these things may need to be updated. Despite some alterations and improvements, they still focus on controlling the patient’s access to meds and autonomy, rather than on changing the provider’s involvement and awareness of what’s going on.

This is exactly back-to-front.

A. Coping gracefully (baseline)
Track to completion, baseline memory aids sufficient, comprehend primary science, think laterally, mood is managed, manner friendly, affect lively and engaged. Relatively good strength and stamina, able to grasp and carry reliably, knees and hips act normal, nausea absent to minimal, pulse mostly regular.
B. Coping roughly
Completion unrealistic, extra memory aids required and still don’t do it all, comprehend simple directions (to 3-4 steps), think simply with self-care as central concern, unstable mood, manner from prim to edgy to irritable. Moderate strength and stamina, grip unreliable and muscles weaker, balance goes in and out, knees and hips unreliable, nausea and blood sugar instability alter type and frequency of intake, occasional multifocal PVCs (wrong heartbeats) and mild chest discomfort.
C. Barely coping
Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed. Muscle-flops, poor fine and gross motor coordination, major joints react stiffly and awkwardly, restless because it’s hard to get comfortable, unstable blood sugar requires eating q2h, bouts of irregularly irregular heartbeat.
D. Nonfuntional
Unable to process interactions with others, suicidal ideation. Unable either to rest or be active. No position is bearable for long.
This is the best we can do??

At-risk patients — those with PTSD, intrusive pain, or some other confounding factor — need to be seen more often and have mental health screens at each visit. Since many of the well-tested screening tools are short checkbox quizzes, that’s a reasonable addition to care. Some can be filled out in the lobby by the patient.

This serves several purposes: the frequent care provides a disproportionate feeling of support to the patients, reducing despair and helplessness; if the visits feel excessive, it motivates the patients to improve their own resources and self-care, reducing passivity, which improves outcomes; and bad findings on the quizzes provide quantifiable, documented need for mental health care, which can then be provided in a more timely manner and with less argument from payors.

Speaking as someone with significant confounding factors (chronic pain, neuro dysregulation, and acute life stress) I’d be delighted to know my doctor and health care system would do that for me, even though I’m not remotely suicidal myself.

When the behavior of those who are easiest for policies to reach AND most influential in patient care is more appropriate and effective, then it makes more sense to go to the trouble and expense to reach further out into the population’s private lives and try to manage them there.

A more rational and effective approach might be,

    1. Train and retrain all primary care doctors to look for mental health issues. This is something that suicide prevention specialists have been screaming for for years. It’s mentioned last in this article, but should be mentioned first: people who commit suicide were likely to have seen their doctors within a month. Talk about a cry for help falling on deaf ears!

      But most doctors turn into deer in the headlights in the face of mental distress, because they have no real idea about what to do. There need to be better guidelines, a clearer path to mental health follow-up, and failure to meet basic requirements of care needs to create problems for the provider — as they inevitably do for the patient.
       

    2. Manage access to obvious methods of suicide, like CNS depressants and firearms. There are many profoundly depressed people who will kill themselves if it’s easy, but fewer who will really put a lot of energy into it, because energy plummets with major depression — along with impulse control. A deadly combination.

      Reducing access involves having primary doctors get more involved with patients who get CNS depressants like opioids and benzodiazepines; implementing and enforcing access laws to firearms and ammunition; and noticing at-risk people with drug and firearm access and giving them the training they need to reduce their own access on an impulsive basis. (Yes,that’s right, engage the patient’s own inner and outer resources, rather than simply impose limits outside their control.)
       

    3. Increase time span between impulse and action, giving second thoughts a chance to kick in. This is important, because the despair is stubborn, but the suicidal impulse comes and goes. Give it a chance to go, so the person has a future and a chance to recover.

      This involves, again, noticing them; engaging them to leverage their own capacity for self-management; and getting logistical support from those around them.
       

    4. Look for early signs, like sleep disturbance, mood swings and eating or weight disturbances. Don’t know why the latter signs aren’t even mentioned here, when they’re easier to notice from the outside. Veterans certainly have them.

      We’ve been pushing for effective education for all primary doctors around both mental health and pain control (which are tightly linked) for decades. It’s not new, it’s just ignored, underfunded, and badly implemented, costing billions in direct and indirect costs.

      Mental health and pain control are tightly linked because:

      • Pain is depressing.
      • Pain is limiting.
      • The helplessness of those limitations is depressing.
      • CNS depressants are, literally, depressing.
      • Depression and helplessness significantly increase pain response in the brain and nerves.
      • And back around we go.

      It’s a vicious cycle, keeping overtaxed minds between frying pan and fire…

      Lasting treatment success is tied to increasing someone’s sense of self-governance and engagement with life (reducing actual helplessness) not limiting their options and patronizing them into submission (increasing actual helplessness.)

      [Limiting options is necessary and useful for inpatient treatment, but is highly problematic in outpatient care — which is where most mental health issues take place.]

      That same engagement and sense of self-governance also reduces the neural system’s susceptibility to pain.

      It breaks the cycle.

      One of these people is not engaged in life. The other is. Which seems better?

      Let’s do all that now — at last — and see how much faster the suicide rates drop than at any prior point in history. For veterans, civilians, everyone.

      It’d be cheap, effective, and useful. It’d serve our veterans and increase productivity. It’d brighten up the lives of everyone affected by it. Is there a downside?

      Links:

      Suicide Prevention Expert Outlines New Steps to Tackle Military Suicide. ScienceDaily (Sep. 10, 2012)
      6,500 US Military Veterans Commit Suicide Every Year, International Business Times (April 2012).
      Combat duty in Iraq and Afghanistan, mental health problems, and barriers to care. NEJM (July 2004)
      PubMed search for “PTSD veterans” results.
      PubMed search for “TBI veterans” results. TBI stands for Traumatic Brain Injury.
      Make the Connection, bringing generations of vets together for mutual support and counseling.
      Suicides — United States, 1999–2007 Centers for Disease Control (January 2011).

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