Patients with reflex sympathetic dystrophy syndrome often feel like their skin is on fire. Other times, it feels as though their entire body is encased in a block of ice. Sometimes the chronic pain can be so debilitating that it hurts to be hugged.
The cause is a malfunction of the nervous and immune systems in response to tissue damage from physical trauma. For Beth Seickel, of Massapequa Park, it began after she slipped on a wet floor and tore the anterior cruciate ligament in her left knee.
Last Saturday, Seickel joined hundreds of other patients at the Reflex Sympathetic Dystrophy Syndrome Association’s fourth awareness walk at Eisenhower Park in East Meadow.
After surgery, Seickel recalled, she knew she wasn’t well. “I had so much relentless, persistent, nonexplainable pain,” she said, “that all I could do was scream.”
It took six months of going from doctor to doctor after her surgery for Seickel to be diagnosed with the disease, also known as complex regional pain syndrome. According to Jim Broatch, the executive director of the RSDSA, some patients live with the pain for years before they find out what is causing it.
Seickel, a trauma nurse for 30 years, was accustomed to caring for others. After her diagnosis, however, she began advocating for herself and volunteering to spread awareness of the disease with the RSDSA.
Some volunteers, like Seickel, are also patients striving to help others cope with the disorder. Stacey Udell, 54, of Melville, has lived with RSDS for eight years. She was diagnosed after dozens of doctor visits, following a leg surgery that left her with a constant burning sensation.
Because of the rarity of the syndrome, many patients do not receive adequate treatment, Broatch explained. There is no single medication that effectively treats the symptoms. Patients are sometimes prescribed opioids, but the opioid epidemic has led to stricter access to such medication. There are many emerging alternatives, however, and Udell is treated with a combination of physical therapy and ketamine and lidocaine infusions at Stony Brook University Hospital.
Emerging technology created by a company called Medtronic also offers a solution. It involves implanting devices in the spinal cord to intercept pain signals before they reach the brain.
Last Saturday’s walk, Udell said, was a success, raising more than $70,000 and attracting 700 participants. “It’s so great that we’re getting our message across, and young people who have the disorder are finding the care that they need,” she said. “People came up to me saying they had signs or symptoms for five to 10 years, and they were suffering and have gone from doctor to doctor, to no avail.”
At the walk, Udell said, patients had a chance to speak to medical professionals who specialize in the disease, and to take what they learned to their primary-care physicians and become “better advocates for their own bodies.”
“So often, people have never met another person with this syndrome,” Broatch said. “You could learn from other individuals about how they build their treatment teams and restore their functioning.”
The RSDSA, which is based in Milford, Conn., held the walk in Central Park for several years beginning in 1984, before expanding and moving to East Meadow in 2016. The event included a resource fair with health professionals and medical providers as well as raffles, children’s crafts and games.
Fundraising for the walk is still open, and proceeds go toward medical research, advocacy, financial assistance for patients and the Brad Jenkins Scholarship Fund, named for an RSDS patient who was diagnosed with the disease after a motorcycle accident and died after an accidental overdose. The RSDSA also sends children to the Center for Courageous Kids, a camp in Kentucky for youngsters with RSDS.
Donations to the RSDSA could be made by calling (877) 662-7737 or by going to https://rsds.org/donate/.