LI woman won't give in to nerve disorder

Before the unending pain, before the drugs and the doctor's visits and the countless hours sprawled on her couch, Fallon Mirsky was a normal teenager.

She played soccer and the violin, even hoped to become a competitive figure skater. Her friends didn't shy away from her back then. Eating was a pleasure, not torture.

The normal life ended 11 years ago. Today, the 29-year-old Valley Stream woman is wasting away. She's afraid to venture outside very often, for fear of triggering another episode of crippling pain. Her weight has dropped from 100 to 68 pounds. Unable to sleep much, she spends entire nights on the couch watching TV.

Mirsky has suffered from a neurological disorder known as Reflex Sympathetic Dystrophy, or RSD, since she was a junior at George W. Hewlett High School.

The disorder, also called Complex Regional Pain Syndrome, is believed to be the result of dysfunction in the central or peripheral nervous systems. Victims often experience intense and burning pain, sensitivity, sweating and swelling.

In desperation, Mirsky, with encouragement from her doctors, is trying to raise money for an experimental treatment in Florida that she hopes will "reboot her brain."

"I'm in pain everywhere . . . If someone touches me and they're warm, it feels like they're burning me," she says. Swallowing ice cream can be excruciating, and even a gentle breeze can feel like a lashing, she says. What little food she's able to force down she winds up vomiting, causing more pain. A few times, she's had to resort to a feeding tube.

The ordeal began, Mirsky says, when she broke her foot figure skating at the age of 17. The pain didn't go away and spread, becoming progressively worse. She was diagnosed with RSD in March 2001. "It's pretty much taken over my life," she says. "I can't eat, go out to restaurants anymore. Everything I used to do -- I loved to walk around -- I can't do."

Researchers don't know what causes the condition, but it's believed to be linked to hypersensitivity in the brain, says Dr. Michael Guido III, an associate professor of clinical neurology at Stony Brook University.

"Things are painful that should not be painful," he says.

The condition usually develops in an injured limb. In extreme cases, chronic pain is felt in all extremities, coupled with acute sensitivity to light and sound, according to the Tampa, Fla.-based International Research Foundation for RSD/CPRS.

The condition, which affects about 1.2 million Americans, isn't in itself fatal, but there is no cure.

Mirsky has "one of the worst cases of RSD I've ever seen," says one of her physicians, Dr. Yakov Perper, former director of pain management at Mount Sinai Hospital of Queens.

Mirsky's parents, Gail and Perry, are themselves agonized -- watching their daughter suffer. "I wouldn't wish this disease on my worst enemy," says Gail Mirsky, who runs a pest-control company with her husband.

Fallon Mirsky says her medicine costs thousands of dollars a month, and some costs aren't covered by health insurance. "It's ruined my parents' life, in the sense that this should be a time of their life when they should be enjoying themselves," she says. "My dad can't take a day off because we can't make ends meet."

Despite the pain, Mirsky earned a bachelor's in psychology from Hofstra University. That took 10 years, built around classes held in the morning, when she feels best. She says she wants to be a doctor someday -- if she can get better.

The plan is to get treatment at a Tampa clinic operated by the nonprofit RSD research foundation. Aiming to "reboot" the connection between the patient's brain and pain sensors, the clinic offers a four-day intravenous regimen of ketamine, a powerful anesthetic. Mirsky has been taking the drug every two weeks in two- to four-hour doses, administered by Perper. It's intended only as a brief respite from the pain.

The foundation believes ketamine holds promise for treating the disorder because it blocks glutamate, the neurotransmitter that tells the brain to feel pain.

Perper, citing a lack of scientific evidence, isn't convinced that more intensive treatment will result in long-term improvement. But with so few options available, he says, "It's worth a try."

Mirsky figures she has nothing to lose. "I am a fighter and don't want to give in yet," she wrote on her website. "I love life and I have so much to offer the world!"