Lynnwood woman hobbled by chronic burning foot pain

Published 9:00 pm Monday, March 3, 2003

"Oh, my aching feet."

We’ve all said it, but Sarah Sundstrom lives it, hour by hour, day by day, with raging, painful, burning feet.

Sundstrom suffers from erythromelalgia. I cringed when I saw her bare left foot propped on a pillow at the end of a recliner in her Lynnwood living room. The skin was taut, purple-red like a bruise, all but throbbing in the living room light.

My mother alarm went off. Danger, danger, but there was nothing I could do to help. Even doctors she has consulted can’t get Sundstrom back on her feet.

At least this was a good day. She didn’t drag herself out to her garage so her feet could rest on cool concrete. She is only 31 and on disability. And to think she was a distance runner in high school and college.

Following a race in 1997, she was diagnosed with reflex sympathetic dystrophy, a rare nerve disease that effects the sympathetic nervous system controlling functions including heart rate for "fight or flight."

Her left foot turned purple and swelled. Surgery didn’t alleviate the shooting pain. Soon after the operation her foot got hot, much like a sunburn. She wore a wet sock, but that wasn’t enough to cool it down.

She propped her foot in the wet sock so close to a whirling fan her toes could get caught in the blades. She used to spend days plopping ice cubes in water to submerge her foot in a cool bath. Prolonged use of ice causes ulcers on her feet, so ice is no longer an option.

Dr. Way Yin, with Interventional Medical Associates of Bellingham, has treated patients with erythromelalgia.

"It’s super rare," Yin said. "Nobody knows what causes it. It may involve small changes in the nerves and blood vessels in the feet and later in the hands."

Yin said treatment is to try to control symptoms. He said he isn’t surprised to hear of someone having symptoms for several years.

"It’s often associated with burning pain, like walking on hot coals," Yin said. "It’s quite a bummer. Any physician gets frustrated when treatment options just aren’t that great. Only about 50 to 60 percent get better."

Broken down, "erythromelalgia" means red limb pain. When things were at their worst, in the late 1990s, it was too painful to get off the couch at all, Sundstrom said.

Her husband, Steve, would make her a bowl of cereal in the morning and leave a granola bar on the coffee table when he went to work. Doctors prescribed pain pills, but Sundstrom said they just didn’t ease the pain.

"It just seemed to get worse and worse," she said. "As you might imagine, my depression at this point had skyrocketed. I didn’t see the reason to continue living if there wasn’t any way the medical community could help me."

She sought medical help in Texas, Florida and Montana, when she heard about doctors there who might be able to help. After seeing a doctor in Texas, the burning worsened and moved to her right foot, both knees, her ears, her face, her thighs and her shoulders.

In a Montana hospital in 1998, thermometers showed her foot would heat to 103 degrees.

"I hit rock bottom," she said. "Sometimes my feet got so hot I thought they would explode."

During the months when Sundstrom’s burning subsided, she elevated her leg on a support device with wheels and went to work. She did pretty well if she didn’t eat spicy food, drink alcohol, wear closed-toe shoes or sit in a room that was hotter than 69 degrees.

She is terrified of blazing fireplaces and has been asked to leave restaurants when she had to elevate her bare foot.

Though many erythromelalgia sufferers can walk, it’s only for short distances. Sundstrom sees a physical therapist for tightness in her Achilles tendon and does swimming therapy.

For the past three years, much of her life has been spent sitting on her recliner with her foot elevated. She drives with her left foot in her lap, working the gas pedal with her right foot. She can’t be in the sun or it raises her core temperature, then her foot burns.

"It makes me feel like a vampire," she said. "I go insane in my house."

She said she is fortunate to have a husband who loves her so much. Steve Sundstrom said they receive support from their parents.

"Without their love and support, I probably couldn’t handle our situation as well as I do," Steve Sundstrom said. "Sarah is the most important person in my life.

"What keeps me going? It’s simple. I love her."

In the past 18 months, Sarah Sundstrom has never walked more than 200 steps in a day. She gets out in a wheelchair, a scooter or on crutches.

"When things were at their worst, I cried every day," she said. "The problem was that crying would actually make the burning worse. I’m not quite sure why. I really had to focus on staying calm to keep the burning calm too."

She communicates with other erythromelalgia sufferers via e-mail.

"We are our own doctors," she said. "Someone has an idea and everyone tries it."

Sunstrom said if she found a doctor who would amputate her left foot, she would do it, but doctors told her that the stump could become inflamed.

"I’m able to deal with the current state I’m in," she said. "When I get frustrated, all I have to do is remember how bad it was in 1998 and realize it could be worse."

It could be worse?

Not from this mother’s viewpoint.

Columnist Kristi O’Harran: 425-339-3451 or oharran@heraldnet.com.