San Antonio Express-News (Sunday)
STEP BY STEP
Teen battling intense leg pain caused by rare condition completes 5K as part of her rehabilitation
Until recently, the prospect of finishing a 5K seemed impossible to Kaitlin Thibodeaux. She just hoped to walk again without feeling excruciating pain.
Just one year ago, the 14year-old girl from The Woodlands was feeling hopeless because a rare condition known as complex regional pain syndrome made her unable to use her left leg. Whenever something touched her leg, her brain perceived pain. Even a cotton ball rubbing against her calf left her in agony.
At the start of her rehabilitation at TIRR Memorial Hermann, Kaitlin worried she would never get better. That feeling faded as she crossed the finish line Oct. 8 at the Memorial Hermann 3.1 Armadillo Run 5K in The Woodlands.
“I wasn’t walking, I couldn’t put a sock on, I couldn’t put a shoe on. And now I’m crossing the finish line, walking a 5K,” she said. “It was just one of the best feelings I’ve ever had in my life, because I was just extremely proud of myself.”
Complex regional pain syndrome is a neurological condition that causes pain and other symptoms, typically in the arms and the legs. Experts believe it’s the result of dysfunction in the central or peripheral nervous systems; that dysfunction sends pain signals that the nervous system can’t shut off, according to the Cleveland Clinic.
The condition is relatively rare, affecting about 200,000 people each year in the U.S. It’s usually treatable, but symptoms can persist for months or even years.
CRPS usually occurs after a nerve trauma or injury damages the thinnest sensory and automatic nerve fibers. In Kaitlin’s case, she developed the condition six months after she sprained her medial collateral ligament, or MCL, and partially dislocated her kneecap when she fell off a yoga ball. Her injury didn’t appear to be serious, but she needed physical therapy.
She seemed to be recovered, until her foot suddenly turned purple one night in February 2021. Then it became swollen, and she was really scared. It wasn’t getting better.
Doctors ruled out a blood clot, nerve damage, a spinal injury or a cardiovascular issue, but they didn’t know what was wrong.
It took about one week before they determined Kaitlin had CRPS. She’d never heard of the condition, but she and her family were relieved to have an answer.
Unfortunately, the doctors were unable to do much else. While the symptoms of CRPS can improve over time, Kaitlin’s only got worse. She needed crutches to get around, and she couldn’t straighten her knee. She wasn’t putting any weight on her left leg, so its muscles slowly atrophied.
Soon, Kaitlin couldn’t even put a sock on her left foot because of the pain it caused.
“I couldn’t wrap my head around it. That this is not supposed to hurt, but for me it does,” she said. “My foot would turn dark purple.”
The pain was most excruciating when her mother, Kristin Thibodeaux, needed to clip the toenails on her left foot.
“It was awful,” Kristin Thibodeaux said. “She would scream bloody murder because of the pain that it created.”
The pain eventually became too much to bear, and Kaitlin spent most of her time in bed. That left her depressed, and she thought she might never walk again. Near the beginning of summer, her parents decided to get her a wheelchair so she could leave the house.
Kaitlin wasn’t the only one who was struggling. It was also difficult for her family to see her so disheartened and in so much pain.
“I’m seeing my teenage daughter lose function and also lose hope,” Kristin Thibodeaux said.
Doctors tried various treatments, but nothing relieved the pain. Things seemed hopeless to Kaitlin until a doctor referred her to TIRR Memorial Hermann The Woodlands in October 2021.
Because Kaitlin’s condition is rare, only a few of the therapists at TIRR Memorial Hermann had treated it before.
The team had “learning lectures” to understand more about it and figure out the best way to treat Kaitlin, said Katelyn Navarro, one of her physical therapists.
The team needed to “retrain” Kaitlin’s brain, so she’d stop feeling pain from things that should not hurt. The process involved going all the way back to the basics, such as vocalizing the difference between her right leg and her left leg. The laborious process frustrated Kaitlin.
“I felt dumb,” she said. “Because I felt like ‘I know this is my right leg,’ and my left leg felt so bad.”
Her team also used desensitization therapy, where they gradually exposed her to objects to see what would hurt. Cotton balls hurt when they brushed against her leg. But they soon learned she could put on a fluffy sock.
They also discovered Kaitlin was motivated by rewards. Those rewards were often simple, such as a new sticker to put on her water bottle. They baked cupcakes and even had a roller-skating party in the clinic.
“Every kid is different, and every kid has a different passion,” Navarro said. “Within a few sessions I realized how much she likes to play and how much she likes to be creative. I used that as a benefit to us to get better.”
One goal of the therapy was to introduce something to stimulate her mind so she’d forget about the pain. Kaitlin would draw or do arts and crafts while putting weight on her leg. She’d then bring those crafts to other parts of the hospital — first by walking with a hiking pole, then by using her left foot to propel her on a scooter.
Near the beginning of 2022 she made a list of goals. The first few were small, such as putting on a shoe. But the list also included the 5K.
She began walking longer distances in June, starting with about 400 feet at a time. By the time the 5K arrived, the most she’d walked at one time was a mile in 25 minutes, so the prospect of completing 3.1 miles still seemed daunting.
“I, of course, had my doubts,” Kaitlin said. “When it was really getting closer, I was like, ‘I think I bit off more than I can chew.’ ”
She didn’t have to do it alone, though. Her grandparents, several of her teachers and members of her team at TIRR Memorial Hermann joined her at least part of the way. They provided the boost she needed.
“We all knew she had it in her. And we all knew that she could do it,” Navarro said. “We just needed her to know that she could do it.”
Kaitlin kept a steady pace throughout the 5K and never stopped moving forward, her mother said.
Seeing her reach the finish line brought tears to Kristin Thibodeaux’s eyes. She still gets choked up when she thinks back on how far her daughter has come.
“A year ago at this time, we never thought this was possible,” she said.
Kaitlin is still in physical therapy at TIRR Memorial Hermann. She’ll continue treatment through the end of the year, then take a short break before resuming a few months later.
It’s easier for her to keep pushing herself now that she’s completed a 5K, though. She knows she’s capable of strengthening her left leg to the point where she can run, jump, ride a bicycle and dance again.
“I always have that little part of me, like, ‘Oh goodness, running kind of scares me,’ ” Kaitlin said. “But just knowing that I’ve done a 5K in the past, it just helps a lot. If I can do that, I can do anything.”