Morgan Barfield knows the feeling of pain. At 23, she has lived with reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS), since she was 16 years old. She developed RSD/CRPS following surgeries on her knees.
RSD/CRPS is a rare, chronic, neuro-inflammatory disorder that occurs when the nervous system and immune system react inappropriately to tissue damage from trauma or surgery. According to the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) website, www.rsds.org, “nerves misfire, sending constant pain signals to the brain.”
People who suffer from RSD/CRPS live with severe pain that is one of the highest on the McGill University Pain Scale.
Barfield describes her symptoms as “constant burning pain and like someone is throwing cinderblocks at you.”
Her RSD/CRPS symptoms started out in her left foot and leg and spread to both legs. She was debilitated, on crutches and in a wheelchair for over two years.
“They told me I would never walk again,” said Barfield, who now lives in Colonial Village in Charlotte. “Entire muscles in my left leg were atrophied.”
She decided to try an operation to implant a spinal cord stimulator even though it was another major surgery.
“Almost immediately, I felt like a different person,” Barfield said.
With therapy and self-motivation, Barfield relearned how to walk. By the time she was a freshman in college, she was playing sports with friends. She did have a setback when she had to take a year off in college to manage her pain that had spread to her hands, but by early 2015, her pain levels had dropped.
One day, while sitting in her doctor’s office, Barfield picked up a “PainPathways” magazine and discovered the Fight the Flame 5K. She was excited to realize that this event was in Charlotte and that it was dedicated to raising awareness of RSD/CRPS and funds for research. Barfield participated in the 2nd Annual Fight the Flame 5K last November.
As an exercise science major with a minor in public health at University of North Carolina at Charlotte, Barfield was required to complete a 340-hour internship her senior year. She decided to ask the Fight the Flame 5K organizers if they would consider having her intern with them. Barfield proposed the idea to Beth Stillitano, who also lives with RSD/CRPS and whose son, Landon, founded the Fight the Flame 5K two years ago with friends. Stillitano thought it was a great idea, so Barfield began her internship in January.
Volunteering 30-40 hours per week on average from January through the end of April, Barfield helped organize the 3rd Annual Fight the Flame 5K that is scheduled for Sunday, Nov. 1, at 8 a.m. at McAlpine Creek Park. She also took on a special project focused on making the race more accommodating to people who had RSD/CRPS.
“Since our race was to raise awareness and money for people with RSD, she felt that the race course itself should be adaptive to people with RSD and others who have disabilities so that they, too, could participate,” Stillitano said.
Thanks to Barfield’s initiative, there will be more benches along the trail, so people can take breaks.
She felt that the race course itself should be adaptive to people with RSD and others who have disabilities so that they, too, could participate.
Beth Stillitano, mother of Fight the Flame 5K founder
“There will be heaters to warm up, which is huge for people with RSD because most of them can’t tolerate the cold,” Barfield said.
Warm drinks will be provided at the end of the race, and encouraging signs are planned along the route showing the distance completed and the distance left to go. Additionally, Barfield felt it was important that the race be more pet-friendly because she has recognized that many people with RSD/CRPS gain emotional support from their animals, especially during a flare-up.
Now, Barfield is recovering from a spinal cord stimulator implant surgery completed in June after a car accident snapped wires in her previous stimulator. Even so, she volunteers with Fight the Flame 5K for 15 to 20 hours a week.
Barfield hopes that Fight the Flame 5K will continue to raise awareness of RSD/CRPS and that she can help make the 5K bigger and better every year.
“It was wonderful to have Morgan join us this year,” Stillitano said. “We would love to have more students from UNC Charlotte or other universities intern with us in the future.”
Marissa Brooks is a freelance writer: firstname.lastname@example.org.
Want to help?
To participate or to donate, visit http://www.fighttheflame5k.org.
Fight the Flame 5K, Nov.1, 8 a.m., McAlpine Creek Park, 8711 Monroe Road. The registration fee now through Oct. 31 is $30 and race day is $40.