Banding together to fight disease
Group sheds light on rare ailment
By Kimm Groshong Staff Writer
PASADENA — It’s been four years since Dana Gambill accidentally struck her right ankle on the metal seat track of her car.
What at first seemed like a smarting sprain, a fluke incident, led to years of excruciating pain, a months-long search for a diagnosis, loss of Gambill’s lifestyle and, most recently, a new sense of purpose.
Today, Gambill is coordinator of the National Awareness Campaign for the disease that took over her life, a chronic pain disease called reflex sympathetic dystrophy, or RSD. She also heads up the only RSD support group in Los Angeles, which meets once a month in Pasadena.
Gambill says her work with RSD advocacy “helps me get out of my pain… for any of us, being of service helps us get out of ourselves.”
Pop star Paula Abdul has recently begun discussing her 25-year experience with RSD. Now, other patients and pain management doctors hope the celebrity’s activities will shed some light on the still largely unheard of disease.
Despite the relative obscurity of the debilitating nervous system disease, the Reflex Sympathetic Dystrophy Syndrome Association estimates between 1.5 and 6 million Americans currently live with RSD’s pain.
Edward Carden, director of Southern California Academic Pain Management in Santa Monica, said he sees three or four new RSD patients a week. The reason more physicians don’t know about the disease is “medical schools never taught the disease,” he said. “The simplest thing for them to do is for the physician to say the patient is crazy and send them to a psychiatrist.”
RSD, also known as complex regional pain syndrome (CRPS), type 1, normally sets in following an injury or surgery. It often goes undiagnosed or misdiagnosed for months or years. Symptoms vary from patient to patient, but it is characterized by pain out of proportion with the injury that triggered it.
The bodies of RSD sufferers are basically continuously responding to pain signals, which become imprinted in the nervous system over time. “You learn how to feel a pain the more you feel it,” said Joshua Prager, director of the California Pain Medicine Centers at UCLA and an RSD specialist. “The more chronic it is, the more autonomous and spontaneous it becomes. It almost takes on a life of its own.”
RSD patients describe the continual pain of the disease as a deep ache and cold or hot burning in the injured area. The skin there often becomes extremely sensitive to touch, discolored and puffy.
Within weeks of Gambill’s injury, she had many classic symptoms of the disease but lacked the doctors to properly diagnose RSD. Some of the physicians she saw diagnosed fracture, others tendinitis, prescribing Advil and Aleve, which did little for the pain.
“I was in so much pain, it was just unbelievable,” Gambill said. “I, in my gut, knew it was something else. Something else was going on and this doctor wasn’t listening to me.”
For five months, she lived with the deep achiness, weakness, extreme temperature changes and bluish color in her foot before a foot and ankle specialist diagnosed her with RSD and began treating her for the debilitating disease.
Time is of the essence for RSD sufferers. There is a three- to six-month window of opportunity following onset of the disease during which treatments are much more successful than they are likely to be later, experts say.
“With early diagnosis and aggressive, multidisciplinary treatment, it can go into remission,” Prager said. He said many of his patients get rehabilitated and can even return to work. “It’s something that we can treat, but we cannot treat it if it is not properly diagnosed and sent to the appropriate specialists.”
The treatment plan for RSD patients involves pain management, psychological treatment and rehabilitation, largely through physical therapy. Prager, whose RSD patients go through a four-week “RSD Camp,” said physical therapy is the mainstay of the treatment, but “the patient has to be reasonably pain free at the time of physical therapy,” and that’s where medication and treatments like nerve blocks come in.
Since her diagnosis, Gambill has had about 45 nerve blocks, which were once very helpful in her fight against pain and have become less effective with time. The disease has spread to her right arm and hand and she has a spinal cord stimulator implant that helps ease that pain.
Prager said in many RSD cases, patients’ brains change with the disease. Functional MRI studies have shown that an area of the brain associated with emotion, including depression and anxiety, often becomes activated in longer-term RSD patients.
Cynthia Toussaint, a former ballerina who developed RSD when she was 21 years old, now runs an organization called For Grace. She was misdiagnosed for 13 years and today uses a wheelchair and has a morphine pump implant. She and her partner, John Garrett, created For Grace named for the daughter Toussant will never have now, recognizing the need for quality information about RSD and advocacy.
Toussaint said RSD is known as “the suicide disease” because of the depression it’s associated with and the fact that it has caused so many patients to take their own lives, having lost hope that the pain will ever subside.
Often adding to that depression is the fact that many RSD patients are abandoned or disowned by friends and family members who cannot cope with a loved one living with the sometimes mysterious pain RSD inflicts. Also, many patients like Toussaint are told by their doctors that the pain is all in their heads.
Gambill’s National Awareness Campaign is an outgrowth of For Grace and is a messaging support and encouragement board for RSD sufferers and their family and friends. It’s also a place to share ideas for awareness projects. Gambill encourages those who want to start RSD support groups like hers.
In February, 17-year-old Lucia Jimenez and her parents attended their first meeting of Gambill’s support group. Lucia had been dealing with RSD pain since August when she was hit by a bicyclist and developed the burning pain, coldness, discoloration and sensitivity of RSD in her right leg.
She relied on crutches for a while but when the disease spread to her left leg, she had to begin using a wheelchair. Eventually, Lucia had to begin homeschool. Her father, Byron, had to take off work most days of the week as Lucia’s pain worsened.
Her mother, Esther, said after months of doctors bouncing Lucia around, without a proper diagnosis or effective treatment, she would cry to herself in the shower, not wanting to worry her daughter and other children. Finally, one night, researching on the Internet, she found what she called a “Godsend” — information about RSD symptoms and a notice for Gambill’s support group.
The support group immediately recognized Lucia’s RSD symptoms and suggested some pain specialists.
Just two months later, Lucia walked into the April support group meeting. Wearing jeans and a T-shirt, with iPod in hand, she looked as healthy as an average high school junior. A specialist had diagnosed her and given her two nerve blocks.
“As you guys can see, I’m walking,” she told the group as they went around the circle sharing positive notes from the week. For the Jimenezes and the group, that was reason enough to smile.
Dana Gambill’s RSD support group meets on the fourth Saturday of every month from 4 to 5:30 p.m. at the Lake Avenue Church, 393 N. Lake Ave., Room 202. For more information, call (626) 755-0105 or e-mail firstname.lastname@example.org.
— Kimm Groshong can be reached at (626) 578-6300, Ext. 4451, or by e-mail at email@example.com.