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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Serious business: reporting bad doctors, saving future patients

Most doctors do good. They do lots of good, all the time, every working day. They’re not perfect (nobody is) but they do far more good than most of us have a chance to.
Moreover, most specialists were drawn to their specialty because they thought it was the coolest and most intriguing use of their time and skills.

It’s helpful to realize that it doesn’t so much take brains to get through med school, as the ability to work really hard on your own behalf. Moderate intelligence is enough, if you can be a solid student. It’s just a lot of hard work, with a guaranteed career at the end of it. This might explain why so many docs are simply mediocre, and most of the time, that’s really all they have to be. The trick is knowing when that’s not enough.

No profession — in fact, no large human grouping — is exempt from the reality of the bell curve. And this means that, while a few physicians are truly outstanding, a few are truly vile; a  few are famous, and a few are totally invisible; most are somewhere in the middle.

Almost all docs are honestly doing their best, and when they give up (which sounds like, “It’s all in your head” if they’re chicken, or “there’s nothing more I can do” if they’re not) or screw up (which sounds like, “whoops… it’s not my fault” if they’re chicken, or “I’m truly sorry, I’m still only human” if they’re not) it’s because the science, their imagination, or their intelligence is not always up to the challenge.

And that’s fair. Our science is vast but still inadequate to match reality, and not everyone is a genius, not even all doctors. We have to be realistic.

A very few are exceptionally smart, exceptionally diligent, and exceptionally good at communicating effectively with patients. They are at one tip of the bell curve, where miracles happen and people beat the odds.

A very few are exceptionally egocentric, have an exceptionally good act, and are exceptionally good at communicating with administrators (which is a special skill.) They are at the other tip of the bell curve, where others’ losses and suffering increase exponentially while the doc’s career blossoms in the adulation of those who don’t need them for care.

A few docs are so insulated from consequences and so accustomed to power that they become something distinct: they do more actual harm than anyone outside Congress or the judiciary can manage, and since they can’t be voted out, they need to be stopped some other way.

It’s rare, but, sadly, it happens to those hardest-pressed to stand up to them — and their obvious allies.

Those of us with rare and complex diseases are bound to hear of them, because rare and complex diseases are prone to develop “cults of personality” around physicians and institutions that get a good article written about them because the subject itself is cool.

These vile docs are a tiny, tiny minority, but they do exist, and sooner or later, we have to deal with them ourselves or aid our friends who do.

In a litigious country, it’s important to know what the agendas are. So let’s be clear about one thing, before going further with this article.

  • Those of us with CRPS and related conditions are not vindictive, we are desperately in search of effective care.
  • We typically exhaust all reasonable means of resolution, long after any normal person would have given up in frustration and despair. 
  • So, by the time WE are ready to trash a doctor or an institution, they have earned it — in spades.

The merely careless, ignorant or foolish are damaging, but still not worth our very limited time and energy.

When you really have to stop a doctor, you’ll know.

While I do believe in evil, I don’t think anyone is past saving… but in order to redeem themselves, some people have to lose what they hold most dear. They have to hit bottom.

In rare cases like this, where the lives of others are fodder for the cannon of someone’s willful and soulless arrogance, I have no trouble with that. Let ‘em hit.

How does that happen?…

By them losing enough of what matters most to them, that they have to either change or fail. Bad doctors in rarefied positions have huge egos and huge paychecks, and in practical terms, that is what matters most to them.

Egos and paychecks are tied together by reputation.

If you’ve been a victim, you can help re-adjust their reputations to something more in line with reality. This could really aid their personal growth. (Nice way of putting it, eh? Still true.)

If you’ve discussed it online and you’ve kept your paperwork, you’ve done most of the work already. It just involves cleaning up what you wrote to your friends, adding a few links, and laying your hands on the documentation created and collected along the way. I’ll write more about that soon, but for now, you can start with what you can easily get.

So here are some ways to do the most good:

  • Report the physician/s to the licensing board in your state.
    You can’t do much about what happens after that, but it goes on record and makes that doctor’s/institution’s future screwups harder for them to do damage control on. And there WILL be future screwups.
  • Review the physician or organization online.
    These review sites get read by patients, doctors, and doctors’ staff, so patients are warned by your record of consistent stinkery and — bonus! — a really stinky review often gets back to the physician via other physicians, providing “reputation readjustment” among the very people they most value. It sounds cruel, but hitting them in the ego is second only to hitting them in the pocketbook in terms of the salutary effect you can have once constructive efforts have been exhausted.
     
  • Submit letters to the editor in that doctor’s or institution’s area.
    These are followed by the PR departments of hospitals, government agencies and universities (this means that university hospitals will have a double dose of PR departments.) Docs who make the institution look bad, cost money. Once they look like they’ll cost too much, they lose their jobs… And, at higher levels, find it very hard to get another one.

In the end, maybe it’s not about whether you can get what you needed in the first place. Sometimes, it’s about protecting others, your cohorts in need. There are a lot more of them than there are of either vile doctors or great ones, but at least let’s steer them away from the vile. You can save lives this way :)

Links

…With surprisingly little effort, now that you know where to find all the links you need to get started.

How to report damaging and dangerous doctors

AMA FAQ on reporting physicians:
http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/frequently-asked-questions.page
Don’t be intimidated by the prim, imperative language. You’ve probably done almost all of that already.

Contact info for physician licensing boards in all 50 states:
http://www.ama-assn.org/resources/doc/ethics/state-medical-boards.pdf
This is who has the authority to revoke a vile physician’s right to practice. A consistent record of vileness can’t be overlooked once it gets to this level.

How to review your providers online

This site is well known and widely used. Even though it’s generic, physicians themselves have told me they fear bad reviews here:
http://www.Yelp.com/

Doctor-specific review sites:

http://www.vitals.com/doctor/rate
Reputable. You need to register.

http://www.healthgrades.com/
Find the doctor, click “About This Provider”, look under “Patient Satisfaction,”  and click “Fill Out a Survey About [doctor's name]“.

http://www.ratemds.com/
Looks rudimentary, but it’s been picked up by several national news outlets. Also, it has the perfect URL for its mission, so it will grow.

http://www.healthcarereviews.com/HealthcareRating.php
Seems relatively new. Could be worth it, if it saves one more person.

http://www.change.org/
Ideal for institutional-level stinkiness. You can set up a petition and this org will do most of the legwork to get others with relevant interests to sign it. This then gets mailed to the institution with aaaaaall those names on it. Also, if it’s a good story and the news folks are awake, it can hit national TV. Now THAT’s pressure!

Letters to the editor
- Guidelines for writing letters to the editor: http://www.pnhp.org/action/how-to-write-an-op-ed-and-letter-to-the-editor
Most important advice: keep it focused, human, and snappy. Cite relevant recent news (on the institution, the doctor, the disease, health care, etc.) so it feels like part of the larger reality (which it is.)
- Links to major news outlets’ Letters pages, with submission guidelines: http://www.ccmc.org/node/16179
- Or search “letters to the editor [your state or city]” for more relevant links.
These not only come back to the hospital administrators, but are followed by politicos. It’s a good way to make a big stink, especially given a good paper trail and a link to your petition. If you’re lucky, it could trigger some investigative journalism.

You can also research investigative journalists in your area, and pitch your story as an idea for a project. This is more time-consuming than the other options, and not all of us have that time or can make those contacts.

Not the last word

Once a reputation has been trashed, it’s very hard to recover… And sometimes that’s the only way to keep these hateful, [expletives deleted], predatory, self-serving, [more expletives, really vile ones, also deleted] from hurting others.

It would be helpful if more doctors stepped up to the plate and helped corral their own. It’s this damaging minority of trolls who stain the image of all doctors.

Any physicians who know of means to do that, it would be tremendous if you’d let us know… If only to assure us that some effort is being made. Even after roughly a decade as a nurse and another as a patient, I know of no mechanism that still lets you police your own — so if it exists, it’s awfully coy. It’s too easy to feel abandoned by the profession when we wind up in the hands of someone like this, and see the colleagues near them just shut up and knuckle under. If there were a wider pool of colleagues they had to answer to, it would help us to know that.

If you’re in the awful  position of needing to use this info for yourself or a loved one, please comment and let us know how these methods work for you.

Best of luck. May all your future doctors be good, capable, and really know their jobs.

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Numeracy: The educational gift that keeps on giving?

This is about what we used to call numeric literacy:

http://www.sciencedaily.com/releases/2012/02/120210133346.htm#.TzdCY4vl1xg.mailto

I have problems with using the word “numeracy” to mean “numeric literacy”, but I can adapt. To me, the word “numeracy” means “of or relating to numbers”; therefore, to be numerate means to be of or relating to numbers, and that doesn’t make sense. 

This spasm of reflexive linguistic conservatism will pass and then we can get to the point…

Numeric literacy (however you name it) results in better decisions. Those who are numerically literate are better able to understand information that’s represented by quantities and numbers, and not be confused by sloppy descriptions and poor representations. They have better outcomes in health care, work and other areas where decision-making really pays off. 

The fun part is, that this article’s writer makes the point that the spin doctors are gonna pounce on this, as if they haven’t already:

This has implications for how policy makers and others should communicate about the risks of medicines, earthquakes, climate change, and the stock market.”

Caveat emptor, from here on out!

Make your decisions emotionally if you must, but get the data first, so at least you can really see what you’re risking. 


Then, remember your fifth grade math and see how the numbers add up. (The kinds of statistics that get published in the news rarely require anything more, so don’t let the math intimidate you.) That intellectual integrity can save your life. 
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Valuable gadgetry means good data

OK, this stuff is cool enough to make me want to keep my iPhone:

iPhone glucometer:
http://www.wired.com/gadgetlab/2012/01/video-ihealth-smart-glucometer/?utm_source=facebook&utm_medium=socialmedia&utm_campaign=facebookclikthru

iPhone blood pressure monitors & trackers:
http://mashable.com/2011/07/03/review-two-blood-pressure-monitors-for-iphone-ipad-video/

I’d like to design a mobile app for tracking and managing pain. Flareups and neurotoxic food sensitivities wouldn’t stand a chance. Touchscreens rock for radio buttons and simple data entry; just have to make it easy to pick what you need and dump it into a dashboard with different ways of viewing the data — historically, by symptom, by factor; graph, chart, etc.

Collecting and tracking your own data is key to surviving and thriving with a long-term condition.  It is possible to make good use of gadgetry, though it’s not something I usually focus on.

Any of you developers want to write the backend?

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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.