A recent episode of the podcast Invisibilia tells the story of a teenaged girl, Devyn, with severe “amplified pain syndrome” — a form of neurological sensitization that, bizarrely, tends to afflict girls. Devyn submits herself to an extreme form of “tough love” therapy, a boot-camp-like program that maximizes physical stress without giving any “attention” to pain, but there’s a bunch of psychological support. It’s dramatic and a bit alarming to listen to. What could possibly go wrong?
The treatment program described is clearly based on a bunch of unvalidated hypotheses about how this kind of pain works. It’s educated guessing. It may be good educated guessing, but it’s definitely guessing, and an extreme therapeutic approach based on guesses is a worrisome combination. What they are doing is clearly an exposure therapy, which is a sound basic principle, but it’s just about the most “tough love” version imaginable, the equivalent of treating a snake phobia by locking the patient in a room with a bunch of snakes for a week. Such extremes are not going to work with everyone, and they could be disastrous for some patients.
So does it work? I have no idea. My biggest gripe with the program was that they made no effort to report any hard outcome data — perhaps because there is none to report — and so it amounts to an elaborate anecdote.
This story outraged and alarmed many chronic pain patients. The episode page was recently updated with some pointed questions for the program director, Dr. Cara Hoffart, whose brief answers seem diplomatic and roughly appropriate, but not especially reassuring to me. It is still all too easy to imagine someone with a subtle, undiagnosed pathology being severely harmed by an extreme approach like this.
But it could be a good idea for most people who fit the diagnosis of amplified pain syndrome.
Fascinating listening regardless!