“A malevolent force”: The profound, bizarre impact of CRPS

Most of the science I write about is in the form of clinical trials — tests of treatments — because people care about what works for pain.

But there are other kinds of medical research.

Today I’m reporting on a different kind of science — a study of stories about one of the strangest, strongest forms of chronic pain: complex regional pain syndrome (CRPS). Waring et al. is a “qualitative” study, devoid of measurements and statistics and charts.

Not sure when I last read a scientific paper without a chart! 😜

The paper is focused on grokking the human experience of this bizarre condition. Waring et al went to considerable effort to understand how people with CRPS feel, and how their lives have been changed (and wrecked) by the disease. They analyzed responses from 288 people with CRPS — 90% women! — and identified two major themes: CRPS seems like “an act of evil” that results in “becoming sub-human.”

CRPS basics (if anything about an exotic condition can be “basic”)

CRPS usually comes on after an injury to a limb, even a minor one, an unexplained complication that causes severe and widespread pain in the limb that is way out of proportion to the original injury. It also goes well beyond pain, causing “profound sensory dysfunction and bodily changes that are not as apparent in other chronic pain conditions.” This results in a few visible signs in some cases: changes in skin color and temperature, unusual sweating, and loss of muscle control.

The severity of CRPS pain cannot be overstated. It breaks the scale. The best simple analogy is that it’s like a severe, endless burn … but weirder.

There is no physiological test for it, and no theory fully explains it. A few people get better, but most don’t, and there is no real treatment (see O’Connell). It’s a rare disease, fortunately.

No one without CRPS can really “get it.” Everyone with other kinds of chronic pain has discovered that healthcare professionals often don’t seem to take pain seriously if it doesn’t have an obvious cause, but CRPS is just in another league, maximally underestimated, poorly understood, and impossible for healthy people to relate to.

So Waring et al. tried to shed light on what it is like to live with CRPS.

“An Act of Evil”

Participants described the sensations caused by CRPS in violent terms, a “war-like experience,” as if the pain has agency and intent, a malicious attack rather than a medical misfortune, something being done to them:

“My foot feels like someone soaked it in gasoline and set it on fire. The allodynia feels like someone rubbing sandpaper on the ‘burned’ flesh.”

“There is a shooting electric sensation, like some[one] jams a hot needle in my leg.”

“My arm feels like it is being bashed with a steel hammer.”

Some used supernatural imagery to try to communicate how assaulted and powerless they felt, their loss of autonomy and identity:

“I feel crazy not having any control of my feet, toes, legs. I can understand why people thought evil spirits or demons took possession of bodies. Having control of your body taken away does feel evil.”

All their descriptions highlight how unpredictable and overwhelming the sensations can be, making people feel trapped in their own bodies, unable to defend themselves.

“Becoming Sub-Human”

Participants consistently described how CRPS stripped them of their humanity. First, they reported that their bodies no longer work. Some described their limbs as useless, disconnected, or even foreign. One participant explained:

“Since the day of my accident, it has felt like my left foot and leg have not belonged to me, it does not listen to my brain and I have to concentrate to make it move yet I am super aware of feelings in it.”

“I have to internally yell at my arm to actually work and it appears so slow and clumsy when it does work.”

This overlapped with disability, of course: basic needs become a struggle. Activities people take for granted — like wearing clothes or showering — are often excruciating with CRPS.

“Wind feels like hundreds of shards of glass cutting through my affected limb. Water from the shower feels like hot acids burning through my skin and muscles.”

“Self-care like showering, getting dressed are really hard for me.”

“My central nervous system NEVER shuts off—I am in a chronic state of fight or flight.”

Social isolation and misunderstanding were another strong theme. Many of the participants strongly doubted that anyone could understand their condition, even doctors (or especially doctors):

“I feel I am a laughingstock at times with the medical professionals.”

“The abnormal sensations to me are often worse than the pain as they are so weird and often indescribable.”

“I avoid doctors and hospitals as much as possible … they would probably commit me.”

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CRPS profoundly affects a person’s self-image, relationships, and emotional well-being. Most participants expressed hopelessness, and some were considering amputation to remove the affected limb, and/or struggling with thoughts of suicide.

And yet, incredibly, the disease is often underestimated and ignored by healthcare professionals, adding serious insult to injury. This study amplifies the voices of those who suffer from it, and I hope this post amplifies the study. It makes it clear that CRPS destroys lives in many ways, often without a single clearly visible sign.