Date: Fri 14-May-1999

Publication: Bee

Author: STEVEB

Quick Words:

Elf-FMS-health

Full Text:

Living Through The Pain Of FMS

(with photos)

BY STEVE BIGHAM

Newtown High School senior Shannon Elf competed in Tuesday afternoon's track

meet in pain. Her tight muscles ached all day. Sitting out the meet was not

even an option.

Even though Shannon's muscles are sore every day, she runs all year round. Her

grandmother suffered with similar symptoms, but was always told it was just

"in her head." But the pain is very real to Shannon. The same can be said for

her mother and for her sisters, Courtney and Caitlyn. They experience similar

pain, along with fatigue, headache and other unpleasant side-effects that come

with Fibromyaglia/Myofascial Syndrome (FMS).

After years of misunderstanding, thousands of women (and some men) have

finally been diagnosed with this debilitating genetic condition. FMS is a

widespread musculoskeletal pain and fatigue disorder for which the cause is

still unknown. Fibromyaglia means pain in the muscle, ligaments and tendons --

the fibrous tissues in the body. There are no outlying physical symptoms so it

is undetectable to the naked eye. But those who suffer walk through life often

feeling downright miserable.

Shannon heads to Bowdoin College in Brunswick, Me. and to another track season

next fall determined to overcome her problem. She has been fighting to do that

ever since she began having headaches and soreness in her legs nearly ten

years ago.

"I would always have severe pain every time I ran. I always just ran through

it," she said this week, looking back over what has been a standout high

school track and field career. "I didn't want people to think I had something

wrong with me."

Already suffering from fatigue almost daily, Shannon depends on the muscle

relaxer Relefan, which causes drowsiness. She sometimes arrives home after

practice too tired to do her homework, yet she is ranked 23rd in her class.

"The most frustrating thing is there's no cure. I just have to put it in the

back of my mind. If I don't I'll just get depressed," she said, looking out

across Bruce Jenner Stadium.

Dealing With Pain

Linda Elf said she and her daughters suffer from a variety of symptoms ranging

from pain and headaches to fatigue and insomnia. It can be a nervy pain or a

shooting pain. Sometimes it can be tingly, while at other times it can feel

like a toothache.

"It's pain. That's what you deal with is pain," Mrs Elf said.

Flare ups are the worst. These are episodes of high-intensity pain that hit

hardest in what doctors have termed the "18 tender points."

Courtney, a member of the Bates College track team in Maine, complains that

her symptoms have worsened as she has aged. Caitlyn, a standout athlete in

eighth grade, also experiences occasional pain in these "tender spots."

The thought of her symptoms worsening is hard for Shannon to accept, but she

takes each day as it comes, hoping the pain will someday all be gone.

"My love of the sport outweighs any pain I may have. My mom has suggested I

stop competing, but that's not even an option." Slowing down, she said, simply

does not sit well with her.

The majority of patients with this condition will experience their first

symptoms between ages 20 and 38, although it does occur in children.

According to George W. Waylonis, MD, a clinical professor of physical medicine

and rehabilitation at Ohio State, individuals with fibromyaglia describe a

sensation of painful knots in their muscles or the sensation of a hot knife

being pressed into their bodies. There may also be dull aches in the shoulder,

thigh, and hip muscles.

Other conditions include joint disfunction, spastic colon, knee cap pain and

sleep disturbance. Allergies can also be a problem. Individuals with

fibromyaglia often share certain personality traits, including tendencies to

be neat, perfectionistic, compulsive, organized, time-oriented and tense,

according to Dr Waylonis, who suffers from the disease himself.

"We truly are type `A' individuals. Often those around us will say `if you

would relax you would have less discomfort.'"

But Shannon is far from uptight. She, like her sisters, has used courage and

determination to emerge as a leader among her peers. She credits her best

friend, track standout Janelle Tracy, for helping her through the toughest

times.

Also, Shannon is a member of the NHS marching band, is involved in Interact,

is in the NHS Singers, and is in this year's spring play.