Ten years ago, Hope Distasio of Oley Township, a self-described supermom who also worked at a full-time job she loved, fell on a step.
She was rushing around her house caring for her two children, then 4-year-old Nick and 2-year-old Natalia.
That simple fall, which resulted in a left foot fracture, led to another tumble.
She fell down five steps in her home and took out a door, trying to navigate on the steps with crutches.
Suffering from the left foot injury and the effects of subsequent fusion operations, Distasio, 40, said none of that was "a death sentence."
But she said what followed in the months and years later was.
Her so-called death sentence came with a neurological diagnosis of Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS) that left her entire body wracked with pain, forcing her to leave the job that she loved as a Reading Hospital employee recruiter.
RSD often results from a nerve or soft tissue injury that does not heal normally and impacts the sympathetic nervous system. The size of the injury doesn't seem to matter.
Distasio was plagued daily by burning pain in her entire body; excessive tissue swelling; hypersensitivity to hot, cold, wind and fabrics; changes in skin color; loss of energy; and mental and physical fatigue.
"Sometimes even eating was not pleasant," Distasio said.
At first, it was a diagnosis she denied.
She went to five doctors, secretly wanting them to tell her that she didn't have it.
But she did, and nothing else seemed to fit.
And after years of taking 14 to 17 pills a day (for pain, spasms, anxiety and depression), trying a variety of medical and holistic therapies, Distasio found courage that she never thought she had, faced RSD with the essential love of family and friends and found a treatment in Philadelphia, but not a cure.
"RSD is a monster that affects every aspect of your life," she said. "It is a constant burning flame that never goes out.
"My RSD affects my entire body. Nothing is spared, but it seems particularly partial to my hands, my feet (the left foot is still the worst), my face and even my ears, It is considered full body."
Because it is a rare chronic neurological syndrome based on an exclusionary diagnosis (there is no absolute test for it), it can be used as a catchall diagnosis, Distasio said.
"And that's unfortunate for people like myself," she said.
What has eased Distasio's pain, but only in the past month, is ketamine infusion therapy that she discovered with Dr. Robert J. Schwartzman, a neurologist with Drexel Neurology Associates and a professor and chairman of the Department of Neurology at Drexel University College of Medicine.
"Schwartzman is a pioneer in this area, and it took me two years to get to see him," Distasio said.
Schwartzman has published extensively on the topic of CRPS/RSD and received a humanitarian award from the Reflex Sympathetic Dystrophy Syndrome Coalition of New England and the National RSD Society. He established the first RSDS clinic in the United States.
Ketamine, an anesthetic drug often used in operating rooms or emergency situations, is being used by Schwartzman to treat RSD patients with some success, according to Dr. Philip Getson, a colleague of Schwartzman's, writing about the therapy in an updated 2008 article published in the Reflex Sympathetic Dystropy Syndrome Association Review.
Distasio said she went for ketamine infusion therapy for 10 days in late April and returned for booster treatments in early May.
"I had undergone all the testing and qualifiers to make sure I am bad enough to need the ketamine treatments and strong enough to withstand the grueling medication," she said.
"I felt like I won the lottery (after treatments)," Distasio said. "I continued at the maximum IV dosage of 200 mg. of ketamine over four hours for the 10 days, and I felt like I owned the world."
However, she said in about four days after she returned home a small amount of pain returned to her hands
"Sadly, ketamine is a treatment and not a cure, but it has made my life more bearable," she said.
Distasio said she did not get nauseated from the treatments, but did feel some fatigue and had to cope with a short period of double vision.
"Dr. Schwartzman only developed this treatment about four years ago, so no one is sure of long-term side effects, but it seems to be helping many people, including me," she said. "RSD affects your autonomic nervous system, and this treatment is trying to reset your nervous system."
In the corner on her living room, Distasio has a cane and forearm crutches, which she hasn't had to use recently. She is glad for that, hopeful about the future.
"I'm taking one day at a time," she said. "RSD has been a blessing and curse. I have learned some pretty amazing things about myself and family.
"I never knew I could be this strong nor that my family could be either."
By Bruce R. Posten
May 25, 2010