When Your Pain Has No Name

Chronic pain can be all the more traumatic when its origins are a mystery.

November 4, 2008, 1:50 PM

Nov. 5, 2008— -- 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."

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.

It is a success story that stands in stark relief against the lives of those who are still searching for answers to their agony. Michael Smith, associate professor in psychiatry and behavioral sciences at Johns Hopkins University in Baltimore, says that there are a number of pain conditions for which the origins and exact causes are still unknown.

"We're supposed to be this wonderful medical system that can do anything, that can save lives," Smith says. "But we really don't know enough about pain."

"It is often difficult to come up with a diagnosis for a patient with chronic pain in particular," agrees Dr. Paul Christo, director of the Multidisciplinary Pain Fellowship at the Johns Hopkins School of Medicine. "Sometimes these types of pain do have names, but we still don't understand the exact mechanisms of the pain."

And because chronic pain is often misunderstood, many patients go without the treatment they need. This, in itself is a problem; untreated, chronic pain conditions can actually worsen, recruiting more nerves until the pain spreads throughout the body.

Dr. Doris Cope, director of the Pain Medicine Program at the University of Pittsburgh Medical Center, says that this spread is often ignored -- particularly in the absence of a proper diagnosis.

"Some doctors say, 'Oh, there's nothing wrong with you,'" she says. "Meanwhile there is pain."

Still, patients may find themselves swept into dismissing their conditions as well.

"First of all they begin to doubt it themselves," Cope says. "Secondly, they get the feeling of helplessness and hopelessness. They don't know what's happening."

Worse, for these sufferers chronic pain has not only a physical component but an emotional one as well. As the pain spreads, the same chemical signals involved in depression, anxiety and stress also come into play, commencing a symphony of physical and emotional misery for the chronic pain patient.

"For many people, their pain takes over their entire life. It affects their work life, their family life, their social life," Cope says.

It is a personal tragedy to which Toussaint can attest.

"It destroyed every relationship in my life except for my relationship with my partner, John," she says. "He stood by me, but my entire family left me behind.

"The emotional pain becomes more serious than the physical pain."

Little surprise, then, that chronic pain is regularly tied to depression.

"Imagine that you develop chronic pain and in time you are no longer able to work," Christo says. "That can be very disruptive and lead to a loss of self-esteem and self-worth. At the same time, it can change the nature of your relationship with your family and friends.

"If the patient has lost their sense of self-worth and become depressed, that in turn can lead to social isolation."

Smith agrees. "[Patients] get the feeling that they really can't control the pain; they feel helpless about it... In some cases these patients can go to full-blown clinical depression."

The roots of this depression even appear to transcend emotions alone. On Monday, scientists revealed additional biological clues as to why pain and depression may be so closely linked. A team of researchers led by Irina Strigo of the University of California San Diego compared brain scans of people with depression to those of 15 people who were not depressed while these subjects anticipated or experienced a painful sensation.

What the researchers found was that those with depression showed a higher level of activity in the areas of their brain that processed emotions. Moreover, the regions of the brain that are normally involved in mitigating pain were less active in the depressed subjects -- a hint that chronic pain may have a propensity to feedback on itself.

Toussaint says the depression that accompanied her chronic pain was nearly too much for her to bear.

"I suffered very, very extreme depression," she says. "All of us with pain do. We're being tortured 24/7, we're not believed, and our lives are upside-down.

"I had a plan of suicide -- not because of the physical pain but because everyone I knew had abandoned me."

Fortunately, pain experts say, the majority of those battling mysterious chronic pain can find answers if they search long enough.

"Most pain does have a label," Cope says. "If you can find some general idea of what's causing your pain, you can tailor treatment toward that."

"A lot of people don't realize that there are treatments available," Christo says. "We do have some pretty reasonable treatments for people that can help control the pain and increase quality of life."

As for the best way to access these resources, Christo says pain sufferers can start with a simple Internet search, using their symptoms as search terms.

"What will usually come up is a description of the condition, and sometimes a directory of self-help groups," he says, adding that some support Web sites even have suggestions for doctor referrals.

For those who have found themselves being pinballed from one doctor to the next, finding a multidisciplinary pain management center may be the best step. Here, patients can afford themselves an entire spectrum of care services -- from pain physicians and physical therapists, to psychiatrists trained in helping those with chronic pain come to deal with their conditions.

"Medication, injections, physical therapy and pain psychology all can come together to significantly improve quality of life," Christo says.

For Toussaint, the medicine that worked best was the anti-seizure drug Neurontin. Today, this medication, combined with a physical therapy regimen that incorporates Eastern and Western healing techniques, allows her to control the pain brought about by her condition.

As is the case with some who face chronic pain, Toussaint may live with her condition for the rest of her life. But she says that those who face a similar struggle must take heart that an answer exists for their mysterious pain.

"Know that you're not alone," she says. "Know that you're pain is real. And know that you deserve the dignity of proper diagnosis and treatment."

To visit the For Grace website, click here.

To visit the website of the American Academy of Pain Medicine, click here.

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