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Can't just walk off this pain

November 01, 2004|by KATE COLEMAN

katec@herald-mail.com

Shannon Leidig winced as she put on socks and shoes last Monday afternoon. She was getting ready to take her daily walk - something she has to do. She's been told that she'll lose the use of her legs if she doesn't walk every day.

Leidig has a chronic pain condition called complex regional pain syndrome. She was a college student majoring in music therapy and piano in February 1990 when she woke with her hand swollen, waxy-looking and in severe pain. By the end of May, the pain had spread up both arms and into both legs.

She's been treated with a variety of medications, has been on steroids, has been sent to psychiatrists and had numerous operations and procedures - including nerve blocks - to reduce her pain. She takes 20 to 25 pills every day in order to function.

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Leidig, 33, said the pain in her arms and hands is almost gone, but she described the pain in her legs as shooting and burning like a volcano that's ready to erupt. When it does, it's like lava flowing.

Shannon Leidig is not alone.

The American Pain Foundation (APF) estimates that more than 50 million Americans suffer from chronic pain; 25 million individuals experience acute pain as a result of injury or surgery.

The Baltimore-based nonprofit organization, founded in 1997, works to improve the quality of life of people with pain by raising public awareness, providing information, promoting research, and advocating to remove barriers and increase access to effective pain management.

Dr. Andrew Mannes, an anesthesiologist and clinician-researcher at the NIH Clinical Center in Bethesda, Md., said he works in the field of pain and palliative care because it's an underserved area of medicine.

"You have to keep an open mind," Mannes said. A variety of treatments - acupuncture, massage, physical therapy and hypnosis, as well as psychotherapy to help provide ways to cope and relieve depression to which pain can contribute - need to be considered. Whole new families of drugs are being researched; the possibilities go way beyond morphine and the nonsteroidal anti-inflammatory medicines that have been used for years, he said. People living with pain have jobs, school. People need options for therapy without incapacitating side effects.

There has been progress - though not enough - in awareness of pain, Mannes said.

"Our society expects people who are living in pain to keep quiet," said Micke Brown, a pain management nurse, former president of the American Society for Pain Management Nursing and spokeswoman for APF. "You can't treat what you don't know about."

The American Pain Foundation is urging people to contact their congressional representatives to seek their support of the National Pain Care Policy Act. The proposed legislation, introduced in April 2003, is scheduled for a hearing in the next four months by the health subcommittee of the U.S. House of Representatives Energy and Commerce Committee, said Will Rowe, APF's executive director.

People living in pain are talking. There will be a "public listening" Saturday, Nov. 6, in Chewsville. The session will be the sixth held in Washington County. Maryland is one of seven states in which APF is focusing public awareness efforts.

Leidig has helped to organize the sessions. She said family, friends and caregivers of those in pain are welcome. She said the sharing has been amazing.

She'll be there. Her mother will drive. Leidig doesn't drive often because she doesn't trust her legs.

Despite her condition, she changed her major and earned her college degree. She works - not full time, but in a variety of jobs; she needs health insurance.

She doesn't play piano as much as she used to, but she plays.

Her huge blue eyes brighten when she talks about her efforts to help make a difference - to raise awareness, to increase funds devoted to pain research.

"I want to make the road easier for someone else," she said.

If you go ...


Public Listening: Living with Pain

2 to 4:30 p.m. Saturday, Nov. 6

Bethel United Methodist Church

21006 Twin Springs Drive

Chewsville

Free

Directions from Hagerstown: Take Jefferson Boulevard, Md. 64, east toward Smithsburg. Turn left toward Chewsville onto Little Antietam Road, Md. 62. Turn right on Twin Springs Drive. Brick church is on left.




Pain resources


American Pain Foundation

201 N. Charles St.

Baltimore

1-888-615-7246

www.painfoundation.org

National Institutes of Health Clinical Center

6100 Executive Blvd.

Bethesda, Md.

For information on clinical research and how to participate, go on the Web to www.clinicalcenter.nih.gov.

To learn about specific research studies, call 1-800-411-1222.

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