The Free Press, Mankato, MN

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April 6, 2008

Playing (and living) with pain

Gustavus student a noted advocate for sufferers of fibromyalgia

By Robb Murray

ST PETER — When Jenny Syverson tells you she lives in constant pain, it’s almost too hard to believe.

She’s young. Her handshake is firm. Her smile is wide and infectious. She laughs. Goes to college. She’s a member of a sorority. How can it be?

No one really knows. But this Gustavus Adolphus College student says she’s been living with constant pain since she was 6 years old. She suffers, says she, from a disease called fibromyalgia, which causes pain in nearly every corner of her body.

She’s tried every remedy. And every other possible disease, disorder or syndrome has been ruled out.

“It’s frustrating and it’s hard,” Syverson said. “The pain is real to me.”

The last six months have seen Syverson become something of a spokeswoman and advocate for victims of fibromyalgia. Last semester she organized a fundraiser at her Twin Cities-area church where donations totaled nearly $5,000. Hers was the first of its kind in the United States, and she’s been getting some national attention because of it.

She’s also getting some local attention. On May 3 she’ll be the official honoree at the Arthritis Walk, taking place at Spring Lake Park in North Mankato. It is the only such walk taking place in southern Minnesota.

Organizer Carol Ries said she was thrilled to get Syverson as the honoree and said her enthusiasm and love for life, even as a sufferer of fibromyalgia — a form of arthritis — will be inspiring to everyone who comes to the walk.

Syverson said it was May 10, 1994, when she woke up with pain in her neck and shoulders. It hasn’t gone away since.

At some point, though, Syverson says she made a choice to refuse to allow fibromyalgia run her life. So even though it hurt, she competed in soccer and softball. Some days were harder than others, and she couldn’t perform. But most days saw her out there with everyone else because she wanted to be like everyone else.

For that reason, shedidn’t tell everyone about her disease.

“I usually tried to keep it quiet,” she said. “I didn’t want to be that outcast.”

Her parents questioned her. Not that she was in pain, but on why she’d choose to compete in sports while she was hurting.

“I told (my dad) I’m not just going to sit there on the sidelines,” she said. “Fibromyalgia is not Jenny.”

Today she’s a nursing student with a 3.4 grade-point average. She loves attending Gustavus (she cried the day she got her acceptance letter).

Her notoriety from the fall semester fundraiser got her invited to Colorado to discuss fibromyalgia. And she’s scheduled to be in a television commercial of some kind, advocating for battling her disease.

Her hope is to raise awareness, raise money and prompt more research on the disease that’s always on her mind.

Said Syverson, “I just don’t know what life is like without pain.”

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