It all began in March of 2011, when Gina Mercieri was t-boned by a Chevy Truck that ran a red light going 45 miles per hour. Luckily, 27 year-old Gina walked away with only a hairline fracture to her left arm. After 8 weeks, Gina’s bone had healed but the pain in her arm had grown worse. Doctors told her the pain was in her head. Gina knew better, “It was as if somebody was filling my arm with lighter fluid and lighting a match.”
After bouncing around from doctor to doctor for a year, Gina finally got a diagnosis. The fracture to her left arm had triggered the onset of a disease so rare and sinister, its nickname is the ‘Suicide Disease.’ Complex Regional Pain Syndrome (CRPS).
Complex Regional Pain Syndrome is a chronic nervous system disorder that can affect any area of the body. It often occurs with a minor injury to the arms or legs. When left undiagnosed or untreated it can spread to the vascular systems, cutting off circulation to all parts of the body, including major organs. There is no known cure.
On the McGill Pain Index CRPS is ranked 45. The burning pain somebody with CRPS experiences trumps not only childbirth, but also the acute amputation of fingers and toes. Gina experiences this degree of suffering on a daily basis. The episodes are so excruciatingly painful she will often black out.
If CRPS is caught early, it can be contained. The year Gina lost in misdiagnosis cost her dearly; living with CRPS has become increasingly difficult. The disease spread from her left arm to her left leg, then quickly to her right shoulder. It wasn’t long until CRPS began its assault on her immune system. Gina’s immune system tries to fight CRPS as if it were some sort of infection. The disease has invaded her respiratory system, causing shortness of breath and absent siezeures. Even worse, it prevents her from sleeping. Gina no longer experiences REM sleep. Without sleep, Gina’s immune system cannot recover. Her body is fighting a war against an invisible enemy and the gas tank is perpetually empty.
Three months ago CRPS accessed Gina’s nervous and circulatory systems, which causes progressive damage to her internal organs. Gina’s digestive tract is obliterated. The physical act of eating food is nearly as painful as its digestion. Her short term memory is fading. Gina will randomly lose her sight completely and without warning.
Living with CRPS is a contradiction in terms, it’s not really living at all.
For many with this disease, the only release they see is suicide. Last year, Gina joined a support group for patients with CRPS. At the time, the group was 11 people strong. That number has since whittled down to eight. The last incident, a man ended his life by throwing himself in front of a bus.
I was nervous to meet Gina. I worried that her flight from her home in New Hampshire the evening before would have exhausted her. Do I hug her? Would that hurt her? Can she walk ok? Gina arrived at theCHIVE offices with her boyfriend, Marine Corps Captain Jason Back. She walked up and gave me the biggest hug, “I’m a hugger” she said. The only thing I could think to say was to tell her: “Hi, Gina, we’re here to get you the help you need.”
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