Chapter Two: Exclusion
I've known Madi for several years now. We practically lived in each other’s backyards one glorious Ann Arbor summer. I had inklings that she might struggle with more serious health issues, but I was not aware of the extent of it until we sat down to speak for this project. Her symptoms started two years ago, which means that everything from the onset of the pain to a belated diagnosis all happened within the time I have known her.
Fibromyalgia is perhaps the most quintessential example of nociplastic pain. It is characterized by pain throughout the body, fatigue, and insomnia. Fibromyalgia is not an inflammatory or autoimmune disease; instead, there is evidence for altered pain processing in the central nervous system which is why nociplastic pain is thought to be the underlying cause of this condition.
Madi’s doctors described it to her as a “diagnosis of exclusion.” After her symptoms got worse one summer, she brought herself in for a host of labs and tests. Every single evaluation came back negative, but it was only until the very last possibility was ruled out, after spending a huge sum of time and money, that they landed on fibromyalgia — at which point the doctors basically shrugged their shoulders and said there was nothing she could do about it.
To make matters worse, along the way, she was continuously dismissed and belittled by medical professionals who insisted that her symptoms weren’t real, or couldn’t possibly be as severe as she was making them out to be. The diagnosis itself did little beyond providing a name for her symptoms. There is no cure for fibromyalgia, and there are an extremely limited number of medications that might help with pain management, none of which were an option for her.
“There’s been a pattern of people being dismissive and saying there's nothing they can do to help, which is frustrating, because even if there is nothing they can do to help, they could at least offer something. I just paid $200 for you to say you know nothing.”
At one point, Madi was referred to a sleep doctor. After a promising first appointment, her hopes for relief were quickly deflated by the familiar pattern of empty platitudes that followed negative test results.
“I did a sleep study to check my sleep apnea,” she said, even though she was sure her symptoms were not indicative of it. “It came back negative, of course. And then [the sleep doctor] was like, ‘Okay, well, that didn't work, I guess. Now here's a list of better sleep practices.’”
“I was really frustrated because I thought we were vibing,” Madi recalled. “But she was immediately just like, well, you must not be, like, going to bed at good times. You must not be getting enough sleep. You must be taking too many naps, or not having good sleep hygiene.”
The worst part, to her, was remembering all that she was capable of before the onset of the pain. It was only a few years ago that Madi symptoms first started, so her memories of being fully able to participate in all of the physical activities she wanted to do are still fresh.
“I love spending time with my friends, and I love school, and I love learning. Not being able to be myself because I can't think straight or I'm focused on staying awake or focused on physically being there, is really frustrating,” she told me. “Because this is a more recent thing, I remember what it was like to feel normal and feel like myself.”
“I can't push my limits as much as I used to be able to. For example, I went to a football game in the fall, and it was really hot out, and I didn't drink enough water, and I was just completely wiped out. I couldn't leave my bed for three days.”
“I had done the exact same thing in previous years, and I was completely fine, which is why I thought I'd be fine. But because of how much walking there was and how dehydrated I was, I could not move, and I had to have friends come and bring me food.”
The fibromyalgia diagnosis gave a name to what she was experiencing, but little more.
“It's really unpredictable to me, because there's some days where things are worse and some days where things are better,” she said. “And there's nothing they can do medically to help. Fibromyalgia is just this diagnosis of exclusion, which means I have to rule everything else out before getting that diagnosis, and even then, it's very hard to treat it.”