Living Through the Pain: Overcoming Complex Regional Pain Syndrome

January 15, 2009
Overcoming complex regional pain syndrome.

It was a twisted ankle that finally brought Corinne down. After so many injuries-a broken hip, surgery on her knees and her shoulder-it was one small twist, something anyone would dismiss offhand, and Corinne was flat on her back, in absolutely unimaginable, intolerable pain.

As a child, Corinne was susceptible to injury. Her family, like so many others, thought the bumps and bruises were nothing more than a sign of childhood clumsiness. But then, at 13, Corinne took a tumble on the basketball court that broke her hip. It was the beginning of a series of injuries that would suddenly halt her life.

"I always used to think that I was cursed", says Corinne "that I was just the most unlucky human being, that somebody had it out for me and my body, that my body was just rejecting me totally."

Her sophomore year of high school she had surgery on her knees because her body couldn't handle the extra height caused by a growth spurt. During her junior year, she dislocated her shoulder while doing a single push-up. Shortly after, she had surgery to shorten the ligaments in her shoulder. It was only after that surgery that her family learned Corinne has Ehlers Danlos syndrome, a disorder that affects connective tissue with symptoms as peculiar as joints that hyperextend, bending far beyond the normal range of movement. In a way, the diagnosis was a relief for her family. They were tired of hearing that nothing was wrong and worried by the puzzled looks on all the doctors' faces.

"To have a doctor say, 'Well, this is beyond me' is a scary thing," says Wendy, Corinne's mother.

And then her ankle twisted as she was walking down the stairs. Corinne tried to shake it off, but several days passed and the pain kept increasing. Assuming it was related to the syndrome, Corinne's family sought the advice of different doctors, including an orthopedist. But it worsened each day and became so excruciating that Corinne couldn't walk. She quit going to school and spent all day in bed.

"The pain was so bad you couldn't even touch her leg with a cotton ball," Wendy says. "She was crying all the time. It was terrible. There's nothing worse than seeing your child in pain, excruciating pain, and knowing there's nothing you can do about it."

But Corinne's troubles didn't end there. The pain and the inability to live her life left her feeling alone and helpless, and she spiraled into depression.

"It just broke me down" says Corinne. "Your senior year is the year you're supposed to have it all and do everything, and for me that just wasn't an option anymore."

Corinne went to a pain specialist who prescribed narcotics and diagnosed her with complex regional pain syndrome, a chronic condition. The cause of the syndrome isn't completely understood, but it results in pain so extreme a small gust of wind on the affected area can cause intense, intolerable pain. But the medicine didn't help Corinne, and it was actually Corinne's pediatrician who recommended the Kennedy Krieger Institute's pain management clinic, which provides interdisciplinary assessment and treatment of chronic pain on an inpatient and outpatient basis.

In the outpatient pain clinic Dr. Sabine Kost-Byerly, a pediatric anesthesiologist and pain specialist, confirmed the diagnosis.

"Corinne's foot was very sensitive to even slight touch, mildly swollen, and colder than the other foot. A mottled discoloration extended almost to her knee," Dr. Kost-Byerly says.

"When I got to Kennedy Krieger, I had been out of school for two months. I was on meds like methadone and OxyContin," says Corinne. "I was a slug at this point. I didn't have a personality."

"Kids have often reached the bottom of the bottom by the time they come to us," says Dr. Cynthia Maynard, a postdoctoral fellow with the Pediatric Psychology Program, which is part of Kennedy Krieger's Department of Behavioral Psychology.

The therapists worked with Corinne to help her manage her pain and the depression. A crucial component of pain management at Kennedy Krieger is the interdisciplinary rehabilitation approach used. Professionals from a range of disciplines work together to develop a treatment plan for every patient. Those disciplines include medicine, occupational and physical therapy, behavioral psychology, nursing, education, nutrition, social work, child life/therapeutic recreation, neuropsychology, pediatric anesthesiology, and psychiatry.

"For patients who don't immediately see the benefit of our multidisciplinary approach I like to use a sports analogy: professional teams have a coach (physical therapist), team psychologist (behavioral psychologist), and a team physician," Dr. Kost-Byerly says. "You need all those people to help the players do their best."

Because the team looked at Corinne's case from all angles, they were able to help her manage her pain and go back to her everyday life. More importantly, each team member knew the plan and ensured it was being followed at all times, helping Corinne make progress and never fall behind on her goals.

The treatment team set small goals for Corinne. Instead of asking her to get up and walk as she always had, therapists had Corinne put weight on her foot for two seconds, slowly building up over time to five and then seven seconds. These steps forward, though small, laid a foundation allowing Corinne to regain use of her foot.

"You need more than just pills to overcome this disorder," explains Dr. Kost-Byerly, "but these small steps are the only way to convince someone who is in so much pain to participate in any activities."

Dr. Maynard also met with Corinne for individual therapy sessions, working to help Corinne manage her depression and cope with her pain, frustration, and anxiety by writing in a journal and working on verbal expression as ways to help her convey her feelings. Dr. Maynard also taught Corinne techniques such as progressive muscle relaxation and visual imagery that she could use to cope with, and distract herself from, the pain.

Working with Corinne during physical therapy, Dr. Maynard taught her coping methods such as deep breathing and distraction. While the therapists knew that they couldn't completely eliminate Corinne's pain, they encouraged her to use the physical therapy and coping techniques. Over time, she got used to bearing weight on her foot, so the pain slowly decreased.

Therapists also worked with Corinne's family to educate them about what she was going through and how they could best support her. And that support system, Corinne says of family, friends, and therapists, is what helped her get through it all.

"When we started therapy I was very resistant. I was mad and I didn't want to do anything," Corinne says. "I wanted them to let me lay in bed by myself, but they pushed me, and that pushed me to push myself."

Because that support system pushed Corinne to work harder and get through the pain, she was able to return to school and finish her senior year. She even danced in the school's spring dance concert. Front and center, she soaked up the limelight.

"It was the best feeling," says Corinne. "It was like I beat it."

And, despite everything she's been through, Corinne knows that her struggle isn't over. Because she has Ehlers Danlos, her risk of injury is high, and any injury could result in a recurrence of the complex regional pain syndrome. Although Corinne now has a name for the pain, she can't just go to the store and get an over-thecounter remedy, or visit the doctor and get a prescription and get well. But thanks to the team at Kennedy Krieger, she has the techniques and methods to help her if she needs them. For once, she's on even footing against her pain.

"I feel like I've always been looking over my shoulder," Corinne says. "And I know I'll be looking over my shoulder for the rest of my life. But now I'll look less often."

Kennedy Krieger Institute Announces Retirement of President and CEO

Dr. Gary W. GoldsteinThe Institute’s board of directors is conducting a national search and is expected to name a new CEO in the coming months.
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