The Children's Institute Blog

Krissandra, Chronic Pain And CRPS Awareness

Posted: Nov 13, 2017 by The Children's Institute

It was just another day in March 2016 for Krissandra Wiles, another ride on an ATV on her friend’s small farm near Deer Lakes, Pa.

Then their quad hit a bump on the ground.

“My foot went the wrong way,” remembered Krissandra, 19, who now lives in Butler County. “My foot caught the tire and the tire just ripped off my boot and tried to take my leg with it.”

She healed slowly. Then came a random night in August.

“I woke up at 2:30 one night with excruciating pain in my legs,” she said. “I had little things throughout my whole life – I’d get arthritis pain in my knees – but I didn’t have a lot of pain until that night in August.”

Shortly after going to the hospital, she was diagnosed with Reflex Neurovascular Dystrophy (RND), a condition that leads to severe pain in the joints and muscles in children, sometimes following an injury. We are profiling Krissandra today as part of Complex Regional Pain Syndrome Awareness Month.

RND left an imprint. Krissandra dropped out of high school and had to leave a full-time job at a hardware store because of the intense pain she experiences.

“I’m definitely less active now, depending on the day,” she said. “There are days I have to rely on the wheelchair. There are days I have to use the shower chair because I can’t stand in the shower very long.”

For Louise Wiles, Krissandra’s mother, the diagnosis was something for which her years in nursing school couldn’t prepare her.

“Unless it’s something people deal with every day … it’s not something that’s easily diagnosed or easily understood,” Louise said. “For me, I didn’t understand how the body could develop pain out of nothing. It’s like her nerves are confused.”

Krissandra’s time at The Children’s Institute – first as an inpatient, now in outpatient therapy – “was the answer to the prayer that we needed,” her Mom said.

Amy Kerin is Krissandra’s physical therapist. She works with her in The Children’s Institute’s heated, therapeutic pool – where there’s less pressure on Krissandra’s joints when they move.

“And, on land, we target her endurance, strength and balance – and how we take what we’re doing here and expand it to her life,” Amy said. “We need to look at how that exercise is going to fit her life.”

Krissandra’s diagnosis has prompted therapy, as well as activism. This year, she encouraged everyone at The Children’s Institute on Nov. 9, one of her therapy days, to wear orange – the color of CRPS awareness. Many staff members took to the hallways in the vibrant autumn color.

Krissandra also takes part in a Facebook group dedicated to RND, and, in November, is posting an entry on social media every day about her experiences with RND, as well as the stories she’s collected from her peers.

“Every case in unique and what works for one person doesn’t always work for another,” said Krissandra, who described the RND community as one divided over the individual benefits of certain types of therapy, medicine, and nerve-blockers, for example. “It doesn’t seem like my pain is ever really the same. There are times when my joints give out and there are times when my joints lock up. Sometimes, it burns. Sometimes, it feels like it's freezing. The pain is always constantly changing.”

Some sources say a patient with RND experiences pain worse than childbirth. Krissandra believes it.

“It’s just everywhere,” she said. “There are days it hurts in my jaw. There isn’t anywhere it doesn’t hurt.”

To help patients like Krissandra learn to manage their pain and return to their previous level of activity, The Children's Institute offers a comprehensive program that can include Physical Medicine and Rehabilitation doctors, Physical Therapists, Occupational Therapists, and Psychologists. It's the team approach that allows our patients with chronic pain to reach their full potential.

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