"Restless Legs Syndrome: The RLS Rebel's Survival Guide"



Restless Legs Syndrome: Sierra Vista shares expertise on subject with new book
By Dana Cole
Herald/Review


SIERRA VISTA — Ever since early childhood, Jill Gunzel has had an irresistible urge to move.

It’s an urge that robs her of a good night’s sleep and can such everyday activities as car rides and movies a challenge. Gunzel, along with about 10 percent of the country’s population, is afflicted with a disorder called restless legs syndrome. RLS causes weird sensations in the person’s legs that are relieved by movement and distraction. It’s sometimes painful and can affect the sufferer’s arms, as well.

Despite its widespread prevalence, very little was known about RLS while Gunzel, 54, was growing up. As a child, when she described the bizarre sensations to her doctor, the complaints were brushed off as growing pains. The possibility that she could be suffering from a sensiomotor problem, one that runs in families and is seen all over the world, was never mentioned.

It was not until 1998, while searching the Internet, that Gunzel stumbled across a Web site for the Restless Legs Syndrome Foundation. She was amazed by what she discovered.

“Among other things, the site lists criteria that are used when diagnosing RLS,” Gunzel said. “I have all the symptoms on that list.”

Those criteria include the following:
• People suffering from RLS have a strong urge to move their legs, something they may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Descriptions of these sensations include: creeping, itching, crawling, creepy-crawly, tugging, or gnawing.

• Symptoms start or become worse when the person is resting. The longer the person rests, the greater the chance the symptoms will occur and the more severe they are likely to be.

• Symptoms get better when the person’s legs are moving. The relief can be complete or partial, but generally starts very soon after an activity begins. Relief persists as long as the motor activity continues.

• Symptoms are worse in the evening, especially when the person is lying down. Activities that are bothersome at night do not seem to bother the person during the day.


“I looked at the information on that Web site and remember thinking, there is a name for what I have, and there are other people out there who are going through this,” Gunzel said. “For me, it was a major revelation.”

Prior to finding the Web site, Gunzel says she felt victimized, sleep deprived and very much alone.

The RLS Web site changed her life.

She joined an e-mail support group and began analyzing her RLS experience, comparing notes with others who were suffering from the condition.

“Prior to knowing what I had, I called it ‘my leg thing,’” Gunzel recalled. “I never wanted to talk about it because I was afraid people would think I was crazy.”

After years of feeling like a victim, Gunzel was ready to take the bull by the horns and fight back. She created a Web site where she encouraged other RLS sufferers to take up their own fight against the condition. She developed a self-help manual of techniques aimed at dealing with and surviving RLS. Filled with alternative treatments and approaches, the manuscript outlines what she calls her “bag of tricks,” a collection of props and strategies that are designed to minimize the severity of the symptoms.

“I use the term ‘tricks’ for all preventative measures and defensive responses to RLS symptoms,” Gunzel explained. “Every person is different. What works for one, may not work for someone else.”

One of the tricks that has worked for Gunzel is a form of dance called clogging. She teaches the dance every Thursday afternoon at the Ethel Berger Center and is the only certified clogging instructors in Southern Arizona.

Between the energized activity of the dance and the mental distraction of performing the steps, clogging offers Gunzel some relief from RLS.

While the goal of all the strategies is to bring temporary relief to the RLS sufferer, none are a cure. They can be used as an adjunct to a doctor’s treatment program or to medications that a person may be taking.

In just a few years time, Gunzel has become an expert on the subject of RLS. She makes numerous appearances at conferences and meetings throughout the country and her self-help, common sense approach is endorsed by members of the medical community.

Known as the RLS Rebel, her latest conquest is a newly completed book that was published in April. “Restless Legs Syndrome: The RLS Rebel’s Survival Guide” incorporates a myriad of suggestions and recommendations that have helped her survive RLS.

Gunzel wrote the book while undergoing treatment for ovarian cancer. She says the focus it required helped her get through chemotherapy and the unknowns of cancer.

“I approached my ovarian cancer the same way I approached RLS,” Gunzel said.

“I never ask ‘why me?’ ” Worse things happen to other people.”

On July 15, Gunzel will hold a book signing at B. Dalton Bookseller, located in the Mall at Sierra Vista, from noon until 4 p.m. She also will be at the Bisbee Farmer’s Market on July 1 from 8 a.m. until noon.

Herald/Review reporter Dana Cole can be reached at 515-4618 or by e-mail at dana.cole@svherald.com.