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Invisible Illness

Shifra Ernest

Why pain is such a puzzle to quantify, what it’s like to live with constant pain — and a look at some groundbreaking new treatments

Wednesday, March 14, 2018

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“Pain is invisible, which makes chronic pain sufferers feel very misunderstood,” says Dr. Aviva Gaskill, PhD, a clinical psychologist who specializes in co-occurring health and psychological concerns, and deals with chronic pain patients

F or Amanda Greene, it started with spontaneous bruising. Then her skin began breaking out in hives when exposed to the sun (an almost everyday occurrence in her home state of California). She found herself chronically fatigued, unable to maintain her rigorous schedule as a member of her high school’s student council and drill team.

Her doctor was baffled by her symptoms. Although Amanda tested negative for mononucleosis, the test was repeated every four to six months as the extreme tiredness, clumsiness, and odd skin reactions continued to plague her. Eventually, it was decided that she was anxious and depressed. Amanda was placed in group therapy.

It was only due to preoperative blood work before a nose job (which never came to be) that Amanda learned she had a clotting issue. This led to another barrage of medical tests. After a year of dealing with lab results and follow-up appointments, Amanda’s doctors finally figured out what was triggering her symptoms: lupus, an inflammatory disease caused when the immune system attacks its own tissues.

Following her diagnosis, Amanda’s body was pumped with cortisones. It was only once they wore off that the pain began: throbbing, intense, and unyielding.

It’s been 36 years since then. And Amanda still feels that pain today. Every day. Although she’s tried an array of treatments and therapies, nothing has managed to relieve her pain in a significant way.

“There is no measurement that can tell you how much it hurts,” says Amanda. “My body feels like a rubber band that stretches and contracts with the weather. It hurts so badly that there are no words to explain it.”

With a staggering one in three adults having suffered chronic pain, according to a study conducted by Peter D. Hart Research Associates, Amanda is far from alone. She’s also not alone in her inability to describe what she feels. And that’s part of the problem for chronic pain sufferers. How do you manage something that can’t be quantified?


Can You Rate That Pain?

When a patient complains of pain, they are typically asked to assess their discomfort on a scale from 1 to 10, where 1 would be trivial, and 10 would be sheer agony. (Amanda says she’s answered that question with a 12.)

This method is far from perfect. A woman might rate childbirth as the most intense pain she’s felt — a 10 on the scale — while a man might give that same rating to a wisdom tooth extraction. Both might feel as though the pain is intolerable — and there’s no arguing with that — but are both cases comparable? No one can answer that. A person’s perception of pain is based on his or her individual experiences; a 4 on one person’s scale may be equivalent to a 10 on another’s.

A more accurate assessment is the McGill Pain Questionnaire, developed over 40 years ago by Dr. Ronald Melzack and Dr. Warren Torgerson, whose groundbreaking research in the area of pain perception is still referenced today.

The McGill Questionnaire is based on Dr. Melzack’s classification of pain into three not-so-distinctive areas: sensory (heat or pressure, for example), affective (tension and fear), and evaluative (overall pain intensity). It also contains an intensity scale and other determiners of pain. But when patients are asked to describe their pain, they’re confined to the simple McGill terminology, which includes words like “shooting,” “tender,” and “aching.” And that’s rarely enough to convey what a patient is really feeling.

(Excerpted from Family First, Issue 584)

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