Living in agony

A success story.

(Published Wednesday, September 28, 2005 10:44:32 AM CDT)
The Janesville Gazette
By Chris Schultz, Gazette Staff

SHOPIERE - Tera Hayward, 17, has a relentless enemy.

The Big Foot High School senior is dogged by a rare condition that causes her excruciating pain.

It is pain severe enough that nerve blocks - shots of powerful local anesthetics-are needed to stop it.

Tera suffers from a condition called Complex Regional Pain Syndrome. Physicians are still not sure what causes it - and while they can mitigate its pain, there's no recognized cure.

Although she's not suffering any pain right now, Tera has to be careful not to get the slightest injury or the syndrome, and its crippling pain, will recur.

Big Foot High School senior Tera Hayward suffers from Complex Regional Pain Syndrome, a rare condition that causes excruciating pain. 'American Idol' judge Paula Abdul has battled through a similar disorder. Hayward isn't currently in pain, but even a slight injury can cause a recurrence.

Tera was first diagnosed with the syndrome when she was 9 years old and has suffered through three bouts with the pain.

According to medical literature, the pain is considered at the top of the pain index - even higher than the pain experienced by people suffering from nonterminal cancer.

Tera has a better description.

"If you were to drain your veins of blood, fill them with lighter fluid, and then light it, you might have an idea of the pain," she said.

Still, Tera is facing up to her enemy. It kept her out of school all last year. But she made up her junior year through tutoring and summer school. This year, Tera walked through the doors of Big Foot High School in Walworth as a senior - and she plans to complete the school year and graduate. She wants to attend Washington University in St. Louis. Her goal is to become a physician. "I want to be a doctor," Tera said. "I want to treat this. "With all of the school I've missed, I could be several grades behind," Tera said. She's not. Perhaps because her parents are teachers, she's fought hard to keep up and maybe forge a little bit ahead.

Her mother, Kim Hayward, is a science teacher at Edison Middle School in Janesville and her father, Ken Hayward, teaches vocational technology at Big Foot High School.

The Haywards live in rural Shopiere, within the Clinton School District. But Tera attends Big Foot as a transfer student.

Tera's bout with the pain syndrome started with a simple childhood accident. She picked up too much firewood and dropped a piece on her foot, breaking her toe. Within 24 hours, Tera's foot turned purple, and it was oddly cold to the touch, Kim said. Tera described the onset of the pain as a cold ache. It didn't stay cold for very long.

The family was living in Tennessee at the time. The doctors there made a mistake. They put Tera's foot in a cast. While that may be the right treatment for a broken bone, patients with Complex Regional Pain Syndrome should not have their limbs constricted, Kim said. The cast caused Tera tremendous pain.

Sometimes people with the syndrome are accused of faking symptoms, Kim said. But Tera was losing sleep. "You don't fake not sleeping," Kim said. It was a podiatrist who first recognized Tera had the syndrome.

At a hospital in Nashville, Tera began years of treatment for an enemy that attacked her from the inside and stole her peace of mind and proper use of her legs and feet. It took four months of treatments to finally chase the pain away. Tera said she was in remission for two years.

"There's no cure for it. You just keep it at bay," she said. Complex Regional Pain Syndrome lurks like a predator, waiting for another opportunity. And it can strike after even a trivial incident.

At age 11, Tera tripped over the family cat and landed on her arm. The pain came back, flooding her right arm with fire from the finger to the shoulder. Kim said the syndrome affects the appearance of the affected area. The skin on Tera's arm turned red and the hairs stood straight up. The skin can be either very hot or cold to the touch. But touching is not recommended.

"You can't get it wet," Tera said. The water causes pain. "You can't put it under the covers," she said. Even the softest sheet causes agony. Even noise can set off or escalate the pain, Tera said.

Again, this attack lasted between three and four months. Pain blocks aren't the only treatment. Once the pain is controlled, the patient needs therapy because the syndrome causes muscles to wither away if they're not kept in motion. Tera said she squeezed tennis balls, learned sign language and did a lot of writing and drawing.

The pain left for five years, but when Tera was starting high school as a freshman, she began to experience low back pain. A benign tumor was found on her spinal column. She went through surgery at UW-Madison in October 2004 to remove the tumor. The operation was a success, but the surgery triggered another bout with the syndrome, Kim said. The onset this time was slow, but it came on nonetheless.

By April, the pain started in earnest. Tera found starting her junior year at Big Foot High School was impossible. "I do want to be here, but I can't be here," Tera said. "School is a privilege. It's been taken away from me.

"Tera is on the 504 plan, a federal program that gives students an extra year to complete a school year. She's had tutoring and does research on the Internet to make up for lost classroom time. "The Internet is my biggest resource," Tera said.

Tera had to complete her entire junior year during the summer. By late August, she was certain she would finish her junior year and be ready to start her senior year this fall. Tera said Big Foot did everything it could to help her complete her junior year. "The students and teachers are very supportive," Tera said.

By August, the Complex Regional Pain Syndrome was going into remission again. Tera can't participate in contact sports. But she is active - when she can be. "I can't live in a plastic bubble," Tera said. "It's just a risk you have to take." Tera takes pain counseling, but she doesn't put much stock in it. Instead, she relies on a matter-of-fact, grit-your-teeth, fight-through-the-pain attitude. "Everyone falls down in life, but you have to get back up," Tera said.

"You have to be an advocate for yourself."