In Constant Pain, but in the Game

Type I CRPS usually follows trauma -- car accidents, gunshot wounds, surgery, athletic injuries -- and results in spontaneous pain that isn't limited to a certain nerve or set of nerves but spreads through an entire appendage. Normal sensations that wouldn't ordinarily cause pain can result in extreme discomfort for people with CRPS. Normal elements like the water coming out of a shower head or clothes resting on skin can cause extreme discomfort.

Paynter's nervous system is extra sensitive to loud noises such as fire alarms, police sirens and whistles. Each time a referee blows a whistle in her volleyball matches, the pain grows stronger. Early in the match, it's easy for her to ignore. But by the middle of a third, fourth or fifth game, she said, the burning sensation makes it hard for her to concentrate.

"I've never had a patient come to me where sound worsens their pain," said Paul Christo, the director of the Multidisciplinary Pain Fellowship at Johns Hopkins, who specializes in treating patients with chronic pain. "But we understand so little about the specifics of [CRPS]. People don't always go through the same symptoms or stages."

Less than 200,000 cases of CRPS are reported each year. The syndrome can occur at any age, but it has been shown to be two to three times more common in women than men, according to the RSD Association, an advocacy group for people with chronic pain. There is no cure for CRPS.

In certain ways, the whistles and alarms are easier for Paynter to adjust to than other triggers. Lynn always used to rest her hand on her daughter's shoulder or arm, but now it causes the shocking sensation. Paynter's father, Ken, always liked to sneak up on all three of his kids and scare them by making a whooping noise, but that sets it off too.

"He doesn't do his whoops as much anymore, which makes me really sad," Paynter said. "Sometimes he'll do it anyway just for the heck of it, and I try not to shake my arm, but we all know it's bothering me.

"The hardest part, though, was being told, 'We don't know what to do' so many times," Paynter said, adding that she hopes to pursue a career in sports medicine to help provide answers to others. "I hate shots, I hate doctors, hospitals, but at this point I'm willing to do anything."

Paynter's therapy, like that of many CRPS patients, focuses on pain relief and pain control so she can participate in physical therapy that helps maintain muscle integrity. Because of the pain, she has stopped using her left arm and hand for many daily activities such as opening doors or holding books.

Occasionally though, the pain disappears after Paynter's visits with her neuromuscular massage therapist, Stephanie LaBeau. The relief only lasts for five minutes or so, but it's still five minutes without pain.

"I've tried a lot of techniques with her," LaBeau said. "Her nervous system used to be so fired up and she had tried so many things that hurt her more that she was afraid. . . . I think she can eventually be in a place where she doesn't have pain."

Giving up volleyball was never an option to Paynter, who has been River Hill's starting setter since she was a freshman. Doctors told the Paynters that staying active would be good for her, if she could play with the pain.

Paynter was willing. She became determined to find ways to compartmentalize the pain, to ignore it as she went through club and high school seasons. She became so successful in her effort that until a practice this fall her teammates were almost completely unaware she had any pain or CRPS.

"I thought they needed to know what she was dealing with," said River Hill Coach Sybil Modispacher, who told the team after school one day. "It was an inspiration to look at what she's doing for our team that hurts her so much, and to work on being better passers so that she's not working as hard and in that fifth game. But more importantly, everybody needed to be aware of what's going on with her to support her -- to be there for her like she is there for them."

Paynter's teammates had known about the accident but didn't know that it had significant lasting effects. "She hides it so well that it's hard for us to react in a big way to it, because she doesn't make a big deal about it," said Sarah Okey, a sophomore outside hitter. "If it's killing her, you don't know."

These could be the final weeks of Paynter's volleyball career. River Hill is 13-3 and the No. 2 seed in the Maryland 2A South Region tournament. The Hawks play Monday in a region quarterfinal.

Although she can push the pain out of her mind, Paynter still has to find ways to use both sides of her body equally on the court. As a setter, she needs even hands and strives for complete balance and control in placing the ball. But her pain-addled arm doesn't always cooperate.

"My left hand's not as strong as my right, and it's something I really notice with my back setting," she said. "When I set back, my arm stops in a random place and the ball winds up lopsided. . . . Sometimes it spazzes in the middle of the set and then the ball just drops. It's embarrassing, but I can't do anything about it. It's so frustrating and I get angry, but at this point all I can do is laugh."