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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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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