Resident with nerve disorder talks about pain, challenges

By: Brian Louwers | Warren Weekly | Published December 31, 2015

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WARREN — It wasn’t easy, but Lauren Lilley made it to her high school graduation.

She’d been bedridden at times, in near constant pain since her health really started to deteriorate at age 15. There’d been various treatments and therapies. Opinions from doctors? There were a lot of those. There were many consultations, which resulted in a battery of prescriptions.

Lauren’s medical odyssey began after she broke her foot in sixth grade and began rehabilitation. There were complications, and the pain started. When she was in high school, she learned she had a disease known as Complex Regional Pain Syndrome, or Reflex Sympathetic Dystrophy.

It’s changed her life, but she said it hasn’t changed who she is.

“I have no friends because of my disease. I’ve lost everyone,” said Lauren, 20, of Warren. “They don’t understand what I was going through.”

The person closest to her, her mother, April Lilley, made it a mission to learn about her daughter’s condition. In many ways, dealing with CRPS/RSD is a journey they’ve taken together.

“This disease has been around for a while,” April Lilley said, citing related medical references to “phantom pain” in soldiers during the Civil War.    

According to the U.S. National Library of Medicine and the National Institute of Health, CRPS/RSD is described as a “chronic pain condition that can affect any area of the body, but often affects an arm or a leg.” It is either caused by a nerve disorder that most commonly manifests in the arms or legs after a minor injury, or by an injury to the nerve. Damage to the nervous system, which includes those that control blood vessels and sweat glands, result in the body’s decreased ability to regulate blood flow. It also affects the sensation of touch and body temperature. Resulting problems affect the blood vessels and bones, muscles, nerves and skin.

The key symptom is intense and burning pain that begins at the point of injury but can spread to other areas and get worse over time.

When Lauren was 15, she experienced the burning sensation in her injured foot.

“That’s a symptom of RSD,” Lauren remembered. “He (the doctor) said, ‘We’re just going to put you in a cast to rest your foot.’ I was in a cast for three months.”

When the healing process seemingly stalled, the doctor performed exploratory surgery and removed a bone spur.

“From the moment they did the surgery, that night we noticed marks on my legs, swelling and excruciating pain,” she said. “The very next day, my mom rushed me to the hospital. They said it’s bruising. We now know that was RSD coming. The doctor mentioned RSD, but didn’t explain what it was.

“It was like the pain started growing through my body,” Lauren said.

Living with CRPS/RSD is an incredible challenge. Many people, including some doctors, just don’t get it. Other doctors have been incredibly helpful. Both Lauren and her mother said the staff at Center Line High School was incredibly supportive.

“There are believers, and there are non-believers,” April Lilley said. “As a parent, I do research. I’m going to do anything and everything I can to stop this from spreading.”

Even a superficial injury can lead to extensive problems. While there is no cure, the disease can be slowed.

In November, Lauren wore orange to raise awareness of CRPS/RSD. She encouraged anyone wishing to learn more to visit www.colortheworldorange.com.

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