In constant pain
By Jennifer Girardin
Arizona Daily Star

Sallie Seymour suffers from Reflex Sympathetic Dystrophy, a disease that affects the nervous system and leaves sufferers in chronic pain. (Chris Richards / Arizona Daily Star)

Sallie Seymour looks healthy. Her cheeks flush pink when she smiles, but she's hurting because of a little-known syndrome that causes chronic pain.

She, like many others who suffer from Reflex Sympathetic Dystrophy Syndrome, is always looking for better ways to relieve the pain she describes as "dull scissors being stuck in the nerves of my toes."

And to help those with the syndrome, a new support group has started up in Tucson.

RSD is referred to as Complex Regional Pain Syndrome by the medical community now, said Dr. Kutaiba Tabbaa, director of the Pain Institute in Tucson.

"RSD was a disease that needed either major or minor criteria," said Tabbaa, also an associate professor at the University of Arizona. Now, the Complex Regional Pain Syndrome "encompasses everything."

The condition is caused by a dysfunction in the central or peripheral nervous system - some call it "an overactive nervous system" - and is thought to be triggered by some sort of trauma like a surgery or the breaking of a bone. The pain that follows is "out of proportion to the severity of the injury," and often the pain worsens with emotional stress, says the institute.

The condition was first diagnosed among injured soldiers in the Civil War, according to the U.S. Department of Health and Human Services. Veterans described an intense, hot pain long after some of their wounds had already healed.

The Reflex Sympathetic Dystrophy Syndrome Association estimates between 1.5 million and 6 million people suffer from RSD, as it is commonly known, nationwide. However, because the syndrome is little known, most people aren't diagnosed right away. If diagnosed within the first year, patients have a good chance of going into remission, though this hasn't been proved clinically.

Seymour began researching RSD on the Internet shortly after being diagnosed three months ago and ran across an RSD support group in Phoenix.

After contacting it, she was referred to Rhonda Smith, another RSD sufferer who was in the process of organizing a similar support group in Tucson.

The first meeting, attended by 10 people, was held in May, and the second was June 12.

Seymour said she feels comfortable in the meetings because everyone understands what she has and she doesn't have to explain it.

Members talk about various therapies, what has been working for their ailments, and how they're coping with the life changes. Since each person has a different pain and responds to different treatments, every suggestion is taken seriously, whether it is meditating or taking a different prescriptive drug.

For Mary Chrisman, 46, a former boutique owner, studying kinesiology and getting massages whenever possible have helped her to relax.

For Smith, seamless, soft socks designed for diabetics have alleviated a lot of the pain in her foot. But shoes are still uncomfortable.

Pain began for Seymour after she suffered a back injury on the job in 1990. She said her entire body felt numb, but she "pushed through it."

It wasn't until she woke up in the middle of the night with "horrific pain" after a slight injury to her foot in 2001 that she realized something was terribly wrong.

In the course of a year, Seymour saw several doctors about her foot, but most said her back would need to be treated before they took care of her foot. But Seymour said the doctors just didn't do enough to determine what was wrong.

When the pain didn't decrease and sitting became unbearable, Seymour resigned herself to her bed.

For about a year, Seymour said, she was a prisoner in her own home. To make matters worse, she said, she lost friendships, colleagues and her career. She used to teach Navajo women about early breast cancer detection.

"Some people just don't believe you," said Seymour.

"They say, 'Well, you look so good, so how can you be in so much pain?'" Seymour said she received advice from a friend in Mexico that she should see a laser therapist and her husband had heard the same. She found one just around the corner from her home and began getting low-intensity laser therapy on her back and foot.

Humor is an important element of recovery in chiropractor Leonard Rudnick's Laser Therapeutics office at 570 N. Columbus Blvd.

"Laughing is a very curative thing," said Rudnick at one of Seymour's recent therapy appointments. "Endorphins are released and it's your own morphine."

Rudnick said he has a manila folder stuffed full of jokes and he'll read them one by one until he gets the patient to laugh.

For about an hour once a week, Seymour visits Rudnick for treatment on her lower back, left foot and lower abdomen. Thirteen months ago, Rudnick couldn't even touch her foot because it was so swollen and painful.

Rudnick said he puts the laser treatment pads on her back and foot at the same time in order to target the origin of the pain in her foot, a nerve that stretches from her lower back to the tip of her foot.

Rudnick said that while the laser treatment doesn't always heal the injury, it substantially reduces the pain.

And Seymour can testify to that.

She said her pain has decreased and now she can walk again and play the piano, a favorite pastime since she was 3.

Although she has suffered from RSD for three years, Seymour was not diagnosed until three months ago by a podiatrist who noticed severe bone deterioration on the left side of her foot while the right side was completely normal.

Seymour had never heard of RSD but sought the advice of a host of other doctors in addition to the opinion she received from another podiatrist.

When she found out, she said, she felt relieved but didn't imagine that it could get worse, that it didn't have a cure.

"The doctor said if it had been caught in the first year, there was a 90 percent chance of remission," said Seymour.

"After that, there was no chance. That was a tough pill to swallow."

Raising awareness of the condition in the medical community as well as making RSD a household name is the goal of Cynthia Toussaint, RSD sufferer and founder of For Grace, a nonprofit organization based in California.

With the help of her partner and president of For Grace, John Garrett, the two have launched an RSD National Awareness Campaign.

"It's an ongoing forum for people or families with RSD," said Toussaint. "People need support and community."

Source

July 6, 2004