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|
|No pain at all.||No change.|
|Hurts when I stop and look for it.||No change.|
|Neither looking for it nor distracted.||No significant change.|
|Noticeable when concentrating on something else.||Mild nausea, mild headache, crave comfort food.|
|Interferes with concentration.||Drop things, grip unreliable. Nausea, headache, appetite loss.|
|Difficult to think about anything else.||Trouble picking things up.|
|Makes concentration impossible. Forget names.||Interferes with breathing pattern. No grip.|
|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|
|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.|
|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.|
|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.|
|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.|
|Speech slows. Concentration impossible. Hard to perceive and respond to outer world.||Interferes with breathing pattern. No grip. Everything hurts. Swollen extremities.|
|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|
|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.|
|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.|
|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.|
|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.|
|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.|
|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.
|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.|
|Unable to process interactions with others, suicidal ideation.||Unable either to rest or be active. No position is bearable for long.|
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.