What started as a minor ankle injury turned into months of excruciating pain for a western Wisconsin woman.
It’s called Complex Regional Pain Syndrome, a rare and not fully understood chronic condition characterized by a continuous burning or throbbing sensation. The intense pain typically affects arms, legs, hands or feet following an injury or surgery, according to the Genetic and Rare Diseases Information Center.
For Ceciley Maxa, CRPS has meant enduring bouts of nearly unbearable, panic-inducing pain. She said it meant being unable to work and missing out on planning her 2018 wedding.
“I wasn’t able to live a normal life with my friends or family,” the 25-year-old River Falls resident said in a phone interview from Arkansas, where she is receiving treatment at a specialty clinic.
Now at around the halfway point of a three-month program, Maxa said the treatment has given her something crucial: hope to be pain-free.
“It has helped more than anything I have experienced,” Maxa said of the care she has received at The Spero Clinic. She praised the clinic’s holistic approach that also includes meeting fellow CRPS sufferers and hearing their stories.
Her story began at a graduation party in May 2018.
“I was on a hill and I just kind of stepped inadvertently on my heel and tripped,” Maxa said.
Her left ankle hurt initially but she said she didn’t think much of it, assuming it was just a sprain. But two weeks later her entire leg went numb while running on a treadmill. She said she feared she was having a stroke.
As the days ticked by and after numerous medical tests, the pain only increased. By this summer, Maxa said she reached her limit.
“The sensation can be described as being burned with a blowtorch on the skin,” she said.
Maxa said she learned about The Spero Clinic while researching CRPS online. After Maxa was hospitalized in July, she said her mother mentioned the clinic again and worked to get her admitted as a patient. That included a loan and starting a GoFundMe campaign to help cover the costs.
The cause of CRPS is elusive. Though it can develop after a nerve injury, that’s often not the case. Treatment is similarly varied and can include medication and therapy. Sometimes it will go into remission on its own.
Dr. Katinka van der Merwe, founder of The Spero Clinic, said she aims to address the root cause of CRPS and not just numb the pain. Treatment plans can include a variety of nerve adjustments and therapies.
“Our whole focus with everything we do in here is to remove anything that’s blocking the central nervous system from doing its job," she said.
She added that the “secret sauce” to her approach is being emotionally connected to her patients and their outcomes, which she said runs counter to what she was taught in medical school. “We encourage people to laugh together, cry together, to celebrate together, so you’re not alone going through the process. “
Support from family and friends has been important over the past year and a half of living with CRPS, especially for a disease few know about and that can be difficult to explain, Maxa said. She singled out her new husband, Tyler Maxa, for his love and patience.
“He has been my rock,” she said. “He’s always there.”