Justin Brown, 33, a former student athlete, has been living on a hospital bed in his parents’ Upper Dublin, Pa., home for 10 years. He can’t feed himself, can’t speak for too long, and can’t even sleep for more than four hours at a time. The most movement he has is the occasional trip to the bathroom.
He lays in bed, draped in a blue hospital gown, from morning to night, watching television from time to time or listening to The Roots queued up on a nearby laptop. Some autographed footballs and “get well” cards clutter a shelf to his right. A wheelchair sits dormant in the foyer, just slightly removed from his view.
When guests come to visit Justin, they must address him from the foot of the bed so that he can see them without turning his head. He cannot shake their hands in greeting, cannot wave goodbye to them as they leave. The slightest of movements—even just reaching up and gripping someone’s hand—causes Justin excruciating pain. So he tries not to move at all. He keeps his breathing steady, numbs himself with narcotics and stares at the beige-painted ceiling above his head.
But, even in stillness, the pain persists.
“I can feel it everywhere,” Justin says one Friday afternoon, stretched out plank-like on his bed, his voice little more than a droning. “It’s 24/7, non-stop pain. For me, it feels like my bones are being crushed all over. It’s a horrible, crushing pain all over my body. I never get a break from it. There’s days when it’s worse than others, but even at its best, it’s a million times worse than any pain I had before.”
Justin suffers from full-body Complex Regional Pain Syndrome (CRPS)—once known as Reflex Sympathetic Dystrophy Syndrome—a confounding illness that comes on without warning and plagues the body with blinding pain. It’s difficult to define, difficult to treat, and often goes undiagnosed by doctors.
According to the McGill Pain Index—a pain-ranking system developed at McGill University in 1971—the pain of CRPS ranks just below the pain of going into labor (and, for the record, the pain of going into labor pretty much tops the list). Suffice it to say that when Justin describes his pain as “bone-crushing,” he’s not exaggerating. To mitigate the pain, he downs a narcotic cocktail of dilaudid and methadone multiple times a day.
“I take the dilaudid on an as-needed basis,” he says. “The best way to put it would be it helps dull the pain a little bit, but that’s the best it ever does. I mean, without the medicine, I’d be just screaming in pain all the time. So, it gets me to where I’m not doing that—but that’s it.”
Complex Regional Pain Syndrome is a malfunctioning of the nervous system. Constant pain signals are sent to the brain, according to Phillip Getson, a doctor of osteopathic medicine who runs a practice out of New Jersey and has treated over a thousand CRPS patients since the mid-90s—including Justin Brown.
“There are some main subdivisions in the nervous system,” Getson explains, including the motor system and the sensory system—“motor allows you to move and sensory allows you to feel”—and the sympathetic nervous system, which concerns non-volitional bodily functions, “like sweating and swelling and temperature change and nail growth and hair growth.”
CRPS occurs when “the sympathetic portion of the nervous system and the sensory portion of the nervous system, which are intertwined, malfunction,” Getson says. Often, this malfunctioning comes as a result of a trauma to the body.
“Almost every case that I’ve ever seen comes from some form of trauma,” Getson says. It could be any kind of trauma at all, “getting rear-ended in a car accident or falling down on the ice and smacking your arm. Trauma could be somebody in a lab going to draw blood and missing the vein and hitting the nerve.”
So, aside from the sheer agonizing pain, one of the most frightening components of CRPS is how unpredictable it is. It seems absolutely anyone could develop it at the drop of a hat.
(Justin in bed at his parents’ home in Upper Dublin, Pennsylvania.)
For Justin, CRPS developed following an operation in 2005 in which a feeding tube was inserted into his small intestine to combat an entirely separate illness. His body simply did not react well. After the illness had been treated, Justin reported to nurses that he was still experiencing horrible pain. His doctors were doubtful.
“Justin started to tell doctors about the pain and they didn’t believe him,” says Joan Brown, Justin’s mother, who, along with her husband Rick, provides her son with 24-hour care, feeding him, medicating him, changing his sheets and helping him to the bathroom. “Doctors said there’s no way you could have that pain after this surgery. Well, as we later found out, the [CRPS] had been set off, triggered by that surgery.”
Doctor incredulity is not uncommon. According to Getson, the average CRPS patient sees 4.3 doctors before getting an accurate diagnosis. There just isn’t enough awareness of the syndrome, Getson says. It’s rarely taught in medical schools, so most physicians don’t know what it is. The irony here is, the longer a patient goes without a diagnosis the more difficult it is to treat CRPS.
That’s been the case with Justin, Getson says.
“If I can get somebody early on, the chances of getting them into remission are great,” he says. “But you get Justin in here after he went from doctor to doctor to doctor, and the best hope that you can get is to get 25 percent, 30 percent, 40 percent improvement and look at that as a godsend, because he’s already been through so much.”
Justin bounced from hospital to hospital for two years before he was finally diagnosed. During that time, his symptoms steadily worsened. Walking became too painful, so he spent more time in bed. His eyes became more sensitive to light, so he spent more time in the dark. He ate less. His muscles slowly atrophied. He moved home from Penn State University, where he was majoring in economics, and finished his degree from his childhood bedroom.
“I’d think back to all the work I’d put into school through the years,” Justin says. “I had to finish. That would have really eaten at me. I always enjoyed being at Penn State. That’s a great place. I still hold hopes for going back up there, going to football games, tailgating, going to bars. Even though I’m in this condition, in my mind, I can still see myself going back up and doing that stuff.”
When Justin finally received his CRPS diagnosis, he set off on an odyssey of experimental treatments—hypnosis, acupuncture, spinal cord stimulation, nerve blocks, nutritional supplements, even hyperbaric chambers. All of it failed to so much as lessen his pain, let alone edge him toward remission.
“I was—and still am—at the point that I’d try anything to get better,” Justin says.
(Justin with his parents, Joan and Rick Brown.)
In 2008, the Brown family caught wind of a hospital in Mexico—the Hospital San Jose Tec de Monterrey—that was inducing ketamine comas as a means to treat CRPS. It was a new form of treatment, potentially dangerous, and the family’s health insurance wouldn’t cover it. Nonetheless, they flew to Mexico, where Justin allowed doctors to induce a five-day coma.
“They tell you the hope is that [the ketamine coma] will reset your nervous system,” Joan says. “So it’s like rebooting a computer. Shutting it all the way down and then bringing it back up,” and hopefully ridding Justin of the CRPS in the process. But the ordeal was ill-fated and nightmarish, according to Justin. Just waking up from the five-day coma required another five days of intense recovery.
“You’re coming off so much ketamine, which is a hallucinogenic, so you’re going through really, really bad hallucinations, and you’re in an ICU in the middle of a country where you don’t even really speak the language and you’re tied down the whole time—my arms and legs were tied down. There was a blinking red light in the room and they had to turn it off because it was just driving me nuts.”
Joan says that during the five days that Justin spent recovering from the coma, dipping in and out of consciousness, she was afraid her son was losing his mind. He would wake up and sing the entire Star-Spangled Banner, beginning to end, and then slide back into stupor for a few more hours. Once, she says, he woke up and started speaking Spanish—his eyes rolling back in his head—shouting a language he had only ever heard in introductory grade school courses.
When asked about this, Justin laughs—after hours of conversations, this is the only time he has ever laughed—then coughs in pain. After a moment, he says, “I don’t know. That’s what everybody tells me. I guess I could have been speaking some broken Spanish.”
In the end, the ketamine coma failed to push Justin into remission. There was a glimmer of hope, though; for a while, he was truly feeling better. But, being in a Mexican hospital around 2009, he came down with swine flu, which brought the symptoms of CRPS tearing back. Every bit of progress was reversed.
In more pain than ever, and his family even deeper in debt, Justin flew back to Pennsylvania, defeated and scared for his future. He’s remained in the hospital bed in his parents’ den ever since.
Getson says the setback Justin experienced in Mexico is the tragic catch of treating CRPS: “Any kind of secondary trauma can reactivate it, even if people go into remission.” So, one can somehow rid themselves of CRPS, spend years living a normal, pain-free existence, and then find themselves suddenly back to square one because of something as common as a minor car accident. Such harsh reality can make it difficult for someone with CRPS to hold any hope at all. But not Justin.
“The way I see it, there’s really no other option,” he says. “I mean, I’ve had doctors say to me, ‘Why do you choose to keep fighting?’ My response is that it’s not really a choice. I just feel my only option is to keep fighting, even when I have a horrible day where I feel like I can’t go on anymore, I still, in the back of my head, feel like tomorrow might be a better day. You never know how tomorrow’s going to be.”
In October, Justin received some attention from a local newspaper. For the first time in 10 years, people were hearing his story—and to his surprise, they were moved by his struggle; so moved, in fact, that they started donating money to help fund his treatments. The outpouring of warmth has meant a lot, Justin says, to him and his entire family. For so long, the Browns have soldiered on in silence.
“It’s frustrating to think that people might be thinking I’m just lying here every day because I don’t want to get better or because I’m too lazy to get better,” Justin says. “But now more people understand how I’m feeling and the support I’ve gotten has just been absolutely amazing.”
(Justin’s mother, Joan Brown, adjusts the “tent” of his t-shirt at his chest.)
Within months, the Brown family received $90,000 in donations, enough money to completely fund the installation of a warm water therapy pool in their home. The pool, Justin says, will help him regain some strength and relieve some of his pain. It probably won’t lead to remission, but at this point, it’s the only form of physical therapy he can do.
“I know it will be slow at first,” he says, “but I can actually see myself eventually getting in the pool every day and doing real exercise. I can see myself making some improvement instead of just lying in bed all day. I really do see the pool as a way that I can get myself better.”
He admits he doesn’t know how much his situation can improve, but he holds onto little hopes for the future, clings to remnant memories of earlier years full of simple pleasures.
“I just have this little fantasy of me sitting out in the family room on the sofa and eating a cheesesteak, drinking a beer, and watching the Penn State game or the Eagles game with my friends,” he says. “Something like that would be just the most amazing thing. That was relaxing to me.”
It seems, after years of suffering, Justin does have some reason to hope for such pleasures. There is, right now, an enormous cement crater in the Brown family’s backyard, with an unfinished addition to their house leading to it. Within months, that will be Justin’s therapy pool, a massive, greenhouse-like structure. In time, he will be warm and weightless and hopefully a little less pained.
Complex Regional Pain Syndrome remains a mystery to most people—doctors included. It needs more research. And that research needs more funding. In order to effectively combat this freak ailment, there simply must be more awareness of it. Just ask Dr. Getson.
“We need to educate people,” Getson says. “If I say to you, ‘muscular dystrophy,’ and you’re over thirty years old, you think of Jerry Lewis. If I say, ‘Parkinson’s disease,’ you think Michael J. Fox. If I say, ‘post-trauma brain injuries,’ maybe you think about Christopher Reeve. If I talk to you about CRPS, there’s no name. There’s no celebrity that has a cause. There are no telethons.
“If we don’t tell them,” he says, “how are people going to know?”