Sunday, March 10, 2019

Could The Cure For A Rare Chronic Pain Disorder Be ... More Pain? : Shots - Health News : NPR

There's a before, and there's an after.

In the before, it was a relatively normal night. The kind of night any 14-year-old girl might have.

Devyn ate dinner, watched TV and had small, unremarkable interactions with her family. Then, around 10 o'clock, she decided to turn in.

"I went to bed as I normally would, and then all of a sudden ... my hips... they just hurt unimaginably!" Devyn says. "I started crying, and I started shaking."

It was around midnight, but the pain was so intense she couldn't stop herself — she cried out so loudly she woke her mother, Sheila. Together, they did everything they could to neutralize the pain — stand up, lie down, hot bath, pain medication. But there was no escape, not for Devyn, and so not for Sheila.

"You go to cancer first, right? It's like, 'OK, maybe you have cancer, maybe it's a tumor?' " Sheila says.

When she was calm enough to reason with herself, Sheila decided cancer was improbable but wondered what was going on? The only thing they could think of was that the hip pain was somehow related to the minor knee surgery Devyn had gotten a few months before — she had broken the tip of her distal femur one day during dance practice.

So as usual, Sheila snapped to attention to solve the problem. It was 2016 — surely modern medicine could fix this. (NPR is not using Devyn's or Sheila's last name to protect Devyn's privacy as a minor discussing her medical treatment.)

They started by calling Devyn's surgeon, but the surgeon had no explanation for the pain. He renewed Devyn's prescription for Percocet and wrote a new prescription for tramadol. But the pain only got worse, so they lined up more appointments: their pediatrician, a naturopath, a pain specialist, a sports medicine doctor.

Every doctor's visit was the same. The doctor would ask Devyn about her pain: Where was it, and what was her pain number on a scale from 1 to 10? Then the doctor would order some tests to find the pain's cause.

But no matter where the doctors looked in Devyn, all they saw was a perfectly normal body.

"You are healthy. Nothing is wrong." Those are the words the doctors said to Devyn and Sheila over and over again. It made no sense. And it felt, paradoxically, like the more attention they gave to the pain, the bigger the pain grew.

More ...

https://www.npr.org/sections/health-shots/2019/03/09/700823481/invisibilia-for-some-teens-with-debilitating-pain-the-treatment-is-more-pain?