‘It’s extremely painful’: Grand Strand woman shares what it’s like to live with CRPS

Published: Nov. 7, 2022 at 10:01 AM EST|Updated: Nov. 7, 2022 at 4:17 PM EST
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MYRTLE BEACH, S.C. (WMBF) - Kira Edwards was a 16-year-old high school cheerleader when a broken ankle changed her life.

Edwards said she had a total of eight surgeries within 15 years.

“And on the eighth surgery, that’s when I was diagnosed with CRPS. When my foot turned black,” said Edwards.

According to doctors, Chronic Regional Pain Syndrome, known as CRPS, is a chronic disease that typically develops after prolonged inflammation that happens after an injury or surgery.

Doctors said CRPS ranks more than 40 out of 50 on the McGill Pain Scale.

According to the McGill Pain Scale, the level of pain CRPS can cause outranks childbirth, kidney stones and even the amputation of a limb.

“I wake up sometimes in the middle of the night screaming. I’m in my sleep screaming, and I wake myself up in pain. It’s extremely painful this disease,” said Edwards.

Edwards said she received lower lumbar sympathetic nerve blocks to help relieve the pain, but those stopped working after a while.

Doctors then decided to use a spinal cord stimulator that blocks pain signals.

However, CRPS can spread to different parts of the body, and Kira started seeing Dr. Mbuvah a Pain Management Physician at Conway Medical Center.

“A spinal cord stimulator might help with some of your pain just in like one leg, but suppose it jumps to your hand and then you need other therapies to supplement that and that’s when I come in and kind of help Kira,” said Dr. Mbuvah.

There is no cure for CRPS, so Dr. Mbuvah works with Edwards on different exercises she can do at home to help manage her pain.

Edwards recently started a Facebook group called Horry County CRPS Support Group and Surrounding Areas to connect with others who have CRPS.

Edwards said when it comes to CRPS awareness, it’s important not to judge a book by its cover.

“Just by looking at somebody, like looking at me right now, I look normal, but on the inside, I’m screaming. I’m in pain. I have a permanent handicap sticker, and I’ve been told I’m too young to park there or that I don’t need it. Don’t judge somebody,” said Edwards.

Thanks to Edwards, Governor Henry McMaster signed a proclamation declaring November 7, as “Color the World Orange Day” and November as CRPS Awareness Month.

The Myrtle Beach Sky Wheel will light up orange Monday, November 7 to help spread awareness about CRPS.

Edwards along with others diagnosed with CRPS encourage you to come to the Myrtle Beach Sky Wheel for the lighting and wear orange to show your support.