Teen finds relief from a rare pain syndrome that made it hard to walk

Caroline and Charles Pilcher knew something was wrong with their teenage daughter, Madelyn. The high school basketball player was in pain. A lot of pain. Pain that should not exist, from an injury that had not happened.

Luckily, the Island Lake parents and their daughter kept advocating for themselves. Caroline found a name for what was troubling Madelyn — complex regional pain syndrome (CRPS) — and she found Keith Schmidt, MD, a compassionate Ascension Illinois pain management specialist who understood what Madelyn needed to find relief.

Is it a sports injury, or is it CRPS?

During a travel basketball game in February 2023, a player fell on Madelyn’s right ankle. Caroline and Charles thought she might’ve sprained it. It had happened before. The doctor at the immediate care center expected it to heal within six weeks if Madelyn wore a boot and used crutches as needed.

But after a week, Madelyn’s foot and ankle had become swollen, purple and mottled. Her toenails stopped growing on her right foot. The bruises and stiffness spread up through her knee and thigh. The pain was so bad that Madelyn could not walk.

“CRPS completely changed who I was,” remembered Madelyn. “I wasn’t able to play basketball or run track at school. All of my friends were in these sports and I was very sad not to be able to participate. I didn’t want to do anything. I just wanted to come home and lay on the couch and play video games.”

By week six, Madelyn’s leg wasn’t looking any better, so she got an X-ray and MRI. The results did not uncover anything wrong with Madelyn’s muscles, bones or tendons. There was pain, but there was no injury causing it.

Madelyn’s mother talked to her cousin, Marcie Louckes, about what Madelyn was experiencing. Marcie, who was a procedure nurse at Ascension Saint Alexius in Hoffman Estates, recommended that Madelyn see Dr. Schmidt, the medical director of the Neurosciences Institute.

Dr. Schmidt recognized after his first meeting with Madelyn that she was suffering from CRPS. 

“CRPS is a neuropathic pain where the severity of the pain is disproportionate to the initial injury,” explained Dr. Schmidt. “It is not an unusual diagnosis for pain doctors to make, but if you’re a primary care doctor, you may encounter a CRPS case only a handful of times in your career.”

Many people have never heard of CRPS, but Dr. Schmidt noted that a recent Netflix documentary, Take Care of Maya, has helped raise awareness. Its symptoms can also be misdiagnosed as a more common acute or chronic physical injury. And if one stumbles upon the syndrome while consulting with “Dr. Google,” as Caroline did, its nickname and outcomes can sound frightening.

“CRPS can be treated effectively with early intervention,” assured Dr. Schmidt. “But you have to do detailed history and physical exams. Doing so helps ensure that the patient’s pain symptoms are taken seriously and treated before it leads to years of emotional and physical distress.”

Ways to treat CRPS

Treating CRPS can be tricky, since the timing of the initial diagnosis can be delayed many months. The best treatment is physical therapy, but the pain prevents you from being able to participate effectively.

To break this vicious cycle, Dr. Schmidt recommended lumbar sympathetic blocks for lower extremity CRPS.

“The sympathetic nervous system is the fight-or-flight portion of your nervous system,” Dr. Schmidt explained. Like a light switch, it turns on and off in response to a stimulus. CRPS locks that switch in the “on” position. 

“A lumbar sympathetic block is medicine that shuts off this response temporarily so that the patient can get through their physical therapy sessions effectively,” said Dr. Schmidt.

 Madelyn’s first block was administered in mid-April. While she was under sedation, Dr. Schmidt used imaging to guide his injection needle to the ganglia in front of Madelyn’s spinal cord in her lower back. She woke up a little sore at the injection point, but she discovered she was able to move her knee for the first time in months without pain!

“Dr. Schmidt was extremely knowledgeable, compassionate, forthcoming and realistic in his approach to managing Madelyn’s CRPS symptoms,” Caroline said. “He included her in all of our appointments and eased all of our hesitations and concerns.”

Caroline and Charles appreciated how Dr. Schmidt and his team made Madelyn feel comfortable throughout each nerve block session, checking in with her before and after each session.

Dr. Schmidt tries to do this with all his patients. Because there is not always a consistent or significant improvement between sessions, he likes to set realistic expectations beforehand.

“This kind of education and level-setting helps people stay motivated during those stretches when it’s easy to lose hope,” he said.

Madelyn underwent five lumbar sympathetic blocks to treat her CRPS. Each one kept the pain away for three to four days. During those times, Madelyn stuck to her physical therapy routine and included home exercises, decreased sugar intake, massage therapy and visits to her cousin’s Pilates studio. Although the pain would eventually creep back, it was less intense each time. By the final block, it was almost completely gone.

Raising awareness of CRPS

Madelyn can fully move her knee and ankle again without pain, and is now focused on getting her toes moving again. She continues to strengthen and stretch her leg muscles so that she can get back to running, riding her bike around town with her friends, going on hikes with her family and rejoining her sports teams. In the meantime, she looks forward to playing the flute in her high school marching band.

Caroline’s goal now is to spread awareness of CRPS, both to doctors and people who may be suffering from it. 

“If you’ve felt dismissed by doctors, know your symptoms and bring up CRPS as a possibility,” she said.