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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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.

Product Label Procured in Antiox. (mmol/100g) Prep
Blackberries, cultivated USA 4.02 6
Blackberries, cultivated Solabaer, Sola, Norway Norway 4.13 3
Blackberries, cultivated Norway 6.14 3
Blackberries, cultivated Belgium Norway 3.84 3
Blackberries, cultivated, canned, drained S&W Fine Food, USA Norway 2.34 3
Blackberries, cultivated, frozen Local grocery USA 4.06 6
Blackberries, cultivated, frozen Wholesaler USA 3.89 6
Blackberries, cultivated, with sugar Findus, Norway Norway 4.76 3
Blackberries, Dessert Berries, without sugar, frozen Norske Dessertbaer, Norway (berries from Poland) Norway 5.98 3
Blackberries, dried, “Loch Ness” The Norwegian Crop Institute Norway 37.08 5
Blackberries, wild Norway Norway 6.13 4

Comments:

3 Purchased in grocery store, restaurant, cafe, bakery or marketplace.
4 Handpicked or received directly from supplier.
5 Previously published in Halvorsen et al. 2002 or Dragland et al. 2003
6 Previously published in Halvorsen et al. 2006.

Notice how much variation there is?

This table indicates what’s behind those eternally confusing reports about which food has the  most antioxidant activity.

With a spread of more than tenfold in the antioxidant activity in blackberries, you simply have to look at two more factors:

  • Source
  • Preparation
Understanding these two critical factors helps clarify a lot of red-herring driven confusion over which foods are most nutritious.

It’s a reminder of something we know, but tend to forget in the barrage of information and anxiety around food. 

  • Plants and animals need nutrients, water, sunshine and air to grow; the quality and quantity of these things affects what they produce.
    More species-appropriate and healthful growing environments produce more nutritious food than inappropriate or unhealthful environments.
    Different strains of the same species have different attributes, as someone who has tasted longhorn steak and kobe steak side-by-side could probably tell you.
  • Food nutrients are reactive, which means that heat and light are going to make them change over time.
    If they weren’t reactive, they wouldn’t be nutrients, because nutrients need to be amenable to digestion and assimilation — that is, physical and chemical reactions — before they can do us any good.
    Therefore, food nutrients are susceptible to heat, light and time.

Source matters

Cultivated blackberries from 3 different places had an antioxidant score that varied by roughly a third. That’s a significant variation!

There was only one sample of wild berries, which rated about the same as the best of the cultivated fresh berries from the same region. Wild strains of berries are generally more nutritious, so it should be said that this study does not specify if these berries were from a wild strain, or from a cultivated strain found growing in the wild. Not everyone realizes there’s a difference, but heredity matters (kobe/longhorn.)

Preparation matters

Processing makes a huge difference in the amount of nutrition available per, say, 100 grams.

Notice how the canned berries, which are subjected to considerable heat in the canning process, have the least antioxidants.

The frozen berries, which are meant to last awhile (thus being subject to time) have less bounce per ounce than some, but more than the canned berries.

The fresh Norwegian berries that travelled to Belgium are likewise impoverished, and the distinguishing factor between them and the Norwegian berries in Norway is the transit… time.

This may also be due to using a strain of blackberry that withstands transport better — a trait which, in produce, often goes with a lower nutritional profile.

If fruit is dried correctly (a big “if”), then it retains much of its nutritional value and has the considerable advantage of concentrating it into a smaller quantity. Thus, the 100gm of dried, possibly higher-quality berries turned out to have the biggest antioxidant kick — by a factor of roughly 10 over frozen berries.

Subjective matters

I’ve been thinking about this article since I read it a month ago.

Then, as I was struggling with brain fog this weekend, I got a pair of half-pints of organic raspberries from a large commercial producer which is famous for consistently mild, sweet-smelling berries that hold their shape despite being shipped all over. They were on sale.

I ate a whole package, hoping for that antioxidant kick that would chase some of the fog away. Not wanting too much sugar in my system (and hating to spend that much money in one sitting), I hesitated before starting on the second package, but no good. I might as well have been eating cardboard for all the good it did. I began to wonder if I should bother with raspberries at all, given how every bite I eat has to matter.

The next day, I stopped at a roadside stand and picked up a single half-pint of organic raspberries from a farmstand, for slightly more than the brand-name berries cost on sale, but less than they cost otherwise. (Farmstands are generally worth the gas I spend on finding and mapping them.) They were much smaller, much darker, and some of them were squashed. They wound up spilling in the car, and I pulled over to scoop them up and keep them from messing up the rest of my shopping. I quickly gave up on extracting them neatly, and just shoved the spilled half into my mouth.

Quite apart from the flavor explosion — which was an eye-opener in itself — within a minute, the fog had lifted. My eyes were sharper and my head was clearer than it had been in awhile. THAT was the antioxidant kick. It lasted for hours, and I got another one when I ate the second half.

Summary and context

A lot of the fuss over what to eat can be resolved with a little common sense and remembering what you learned in grade school when you were sprouting beans in little cups.

How fresh your food is, probably matters more than exactly what it is.

How well it was grown, probably matters more than the packaging.

And, if you’re lucky enough to live near farm country, roadside stands are worth your time.

If not, build farmer’s markets into your schedule, because they bring the fresh food right to your neighborhood, with very little time between the soil and you.

I’ve found that each bite of more nutritious food is more rewarding in every sense, and I wind up needing less to meet my needs. It’s economical in the long run, although I remember it took a few months of eating good food voraciously to catch my impoverished system up. That cost a lot up front, but it paid off in the end: my system became more efficient and my tastes evolved for satiation, not overstimulation. I eat enough and am genuinely pleased; that eternal nervous quest for more-more-more is gone.

Grocery stores are for filling in after the farmer’s market and roadside stands, in my view. I have a limited budget and stringent nutritional needs, so I’ve come to that realization the hard way. This study just reinforces my discovery in a different way.

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