When Your Pain Has No Name

Cynthia Toussaint was a ballerina. She was no stranger to the aches, pains and occasional injuries that came with the trade.

So when the pain from an injury to a right hamstring wouldn't subside, Toussaint, then 21, did what she could to endure it. After all, she had auditions to attend -- in particular, a promising role in the musical Fame.

When the burning, unrelenting pain was too much to bear, however, she sought a doctor's opinion.

"I was told that I wouldn't dance for eight weeks and I thought, 'No, they're wrong,'" she recalls.

But the pain would last for much longer than eight weeks. For months it persisted. A year and a half after the pain in her right leg started, she began to experience a similar pain in her left leg. Six and a half years after that, the pain had spread to both arms.

The spread of her condition was not always so gradual. One morning, she woke up to find that her left arm had bent itself into a state of permanent contracture.

"It was so shocking to wake up to find that one of my arms would not unfold anymore," she says.

Today the pain is everywhere. Toussaint describes it as a feeling as if she has "been doused with gasoline and lit on fire... burning from the inside out... It's pain like I never imagined."

The condition which ushered Toussaint into a life of chronic agony also gradually robbed her of her ability to dance, her ability to walk -- and, as it spread to her vocal cords, her ability to talk.

"Here I am 26 years later in a wheelchair," she says. "I had everything; my life was just starting. Suddenly I had this injury that never goes away."

Her voice would eventually return. But for years, Toussaint's battle with chronic pain and loss of function came spiked with the bitter reality that no matter how many doctors she saw, none could give her an accurate diagnosis of her condition.

Worse, without a solid diagnosis, she says many physicians refused to take her case seriously.

"I was told that I was crazy for 13 and a half years," Toussaint says. Once, one of her doctors told her to take a truth serum so she would admit that she was not truly in pain. Another suggested that she was fabricating her pain condition due to stage fright.

And a visit to yet another doctor was met with even greater insensitivity, she recalls.

"I said, 'What should I do?' and he said, 'Shoot yourself in the head.' He thought it was funny."

More than a decade had passed before Toussaint found that she suffered from a mysterious condition known as complex regional pain syndrome (CRPS), alternatively known as reflex sympathetic dystrophy syndrome (RSD). The nature of the condition continues to baffle doctors, as does its exact cause.

But finally, her pain had a name.

"When I got my diagnosis, it couldn't have been worse," Toussaint says. "But it was the happiest day of my life. They could never say I was crazy again."

Patients Battle Pain, Stigma

Toussaint's struggle with her condition turned her into an activist against pain. She launched the nonprofit site For Grace, devoted to helping women find answers about their chronic pain. More recently, she has channeled her crusade against chronic pain conditions into the political realm, making it a centerpiece of her run for a California state congressional seat in 2006 and in other political efforts to bring more attention to these conditions.

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