A national Pain Crisis Protocol is imperative

There should be a pain crisis protocol for dealing with patients who present to the ER or urgent care with significant pain that is not related, or is disproportionate, to obvious pain causes (such as trauma, fractures, infections, heart attacks, organ disease, etc. — the issues that ERs are used to handling.)

The main function of the ER is to identify and stabilize conditions which pose an immediate or proximate threat to life or function. Ongoing conditions are referred to primary or specialist care for follow up.

Crises in ongoing conditions are clearly outside this realm. No wonder patients with pain flares get called drug seekers. Of course they’re seeking drugs. Their condition causes terrible pain crises at random times, often outside office hours, and their only option at those times is to go to the ER seeking the medication they genuinely need.

It puts both the ER staff and the patient in crisis into an intolerable position. A Pain Crisis Protocol, generated at the national level, could eliminate that problem almost completely.

It would provide guidance for further investigation and appropriate treatments (including patient-specific treatments) for the many pain crises that are not traumatic or otherwise obvious, such as flares of CRPS, fibromyalgia, lupus, RA, certain forms of blood dyscrasia; arthritis exacerbation; unexamined or ill-examined organ or CNS compromise; and so on — all things that do require ongoing specialist treatment and thus tend to leave ER staff ill-equipped to deal with, but which occasionally require immediate care for episodes of crisis.

It would also provide ways to move past the “you must be a drug seeker” mindset, which is prejudicial and unhelpful to all concerned. It would create useful ways to move patients out of the blame-the-patient path and into a constructive treatment path where pain gets treated as pain, addiction gets treated (not bullied or abused, but treated) as addiction, and physicians’ appropriate treatment decisions are protected from the political hysteria around the use of pain medications.

Many of these painful diseases require customized crisis management, because response to pharmaceuticals can vary so widely from one patient to another in these already fragile, destabilized systems.

Rationally, then, this would require specialists who treat people with these conditions to provide crisis-management protocols for each patient to the patient’s home ER in advance.

Since many specialists resist planning for such crises, specific guidance on this matter would lift a needlessly vicious burden from patients who suffer from diseases for which flares are an inevitable, if unpredictable, feature.

Moreover, if a patient must be admitted to an ER outside their home area, the admitting ER can retrieve the necessary patient-specific protocol from the home ER at any hour via phone and fax. Again, this would provide appropriate treatment without imperiling the patient with false, undefended, and prejudicial diagnoses or potentially criminalizing the treating physicians for using politically sensitive medication.

The Centers for Disease Control (CDC) is going through another round of tortured logic around narcotic medications and pain treatment. Never in modern history has federal policy driven so much of medical protocol. (Informed dissent would be welcome. Looking forward to being wrong about this.)

The fallout in terms of patient care has been horrific, while addicts remain less treated than ever before and doctors are so hemmed in by inappropriate limitations on care that they can be criminalized for being responsive physicians.

It’s very odd.

Nobody wins — except the professional dealers, who don’t need to follow legal processes to access their product and have a growing pool of potential customers, many with a legitimate un-met need.

So, since the CDC is now so ready to get involved in the physician-patient relationship, it may be time to do so in a constructive manner. Creating a coherent protocol for pain crisis management, which provides forward guidance for ER staff past the fatality-eliminating process, safety for patients with a legitimate need, and appropriate diagnosis with rational intervention for addicts, would be wise. The money and lives saved would pay for it in the first year, if not sooner.

Relevant links

The current CDC proposed guidelines for narcotic use in the outpatient setting: http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001

CDC guidelines for public comment: http://www.cdc.gov/other/public-comments.html

Selection of CDC articles on narcotic policy (opens new tab): CDC search for ‘narcotic policy’

How to contact your elected officials in the U.S. government (opens new tab): Contact your elected US officials

In politics as in medicine… Speak up, because there is no guarantee that they are paying attention to your reality.

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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

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

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