Facing pain that won't go away

After camping and fishing with friends, Shana Hayes was driving back to her home in Puyallup, Wash., when her car hit ice and tumbled down a 500-foot hill. It was 1992, and she was 21.

During the plummet, Shana’s right wrist was sprained and she was badly bruised, but miraculously, she escaped serious injury.

What she did suffer as a result of the sprain altered her life forever.

When she awoke in the hospital, “my wrist was hurting,” Shana said. After she got home, the pain continued to progress and spread quickly through her right arm.

“Initially, my right arm atrophied and became stuck in one position,” Shana added. “I couldn’t feed myself. My mom fed me, and I couldn’t do my hair. I was in so much pain I cried on the couch.”

Through those tears and through those years of agony, which Shana rated “10” on the pain scale, “my mom and I sang, ‘Jesus loves me, this I know,’” she said. “It was a reminder that He was there for me when I was so bad off. My faith has helped me tremendously.”

Plagued by pain throughout her body, Shana saw 15 physicians over the next three years, but it wasn’t until she was referred to the University of Washington in Seattle, that she was diagnosed with reflex sympathetic dystrophy, also known as complex regional pain syndrome.

Fairly rare and affecting 1.2 million people, RSD is a chronic, painful and progressive neurological condition that affects the skin, muscles, joints and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. But many cases of RSD involve only a minor injury, such as a sprain.

Yes, such as a sprain.

Despite finally knowing the problem, nothing helped the intense pain.

“My mom cared for me all those years,” she said.

“She was so bad off,” added her mother, Colleen Hayes, “I was beside myself.”

So, in 1998, Colleen and Shana moved to Grand Forks, where Colleen had grown up and where she has family. “I was so glad to come back,” Colleen said.

“It’s nice to have family support,” Shana added. “A lot of people don’t have that.”

Speaking of support — through the American Chronic Pain Association, Shana was instrumental in starting a Chronic Pain Support Group at her church, Immanuel Lutheran, 1710 Cherry St.

“I’ve had so much support,” she said. “I want to give back to others. I want them to have support, too. I’ve had people come up to me and thank me for having the meeting. It’s been very beneficial.”

Shana and parish nurse Wendy Wilke are co-facilitators of the group that meets from 6 to 7:30 p.m. the first Thursday of each month. Anyone with chronic pain caused by anything — fibromyalgia, arthritis, back pain, migraines, etc. — is welcome to attend.

Dr. Robert Laidlaw, a Grand Forks psychologist whose practice focuses on chronic pain, will speak at the Oct. 7 meeting.

September is National Chronic Pain Month. According to information from the American Pain Foundation, the lost productive time from common pain conditions among active workers costs an estimated $61.2 billion a year. And the National Institute of Health estimates that pain costs the American public more than $100 billion per year in medical expenses and lost wages.

“Pain is becoming a major health problem,” Shana said. “You have to realize that medicine alone is not going to treat your pain. You have to take control of your life.”

Different methods of coping with pain are discussed at support group meetings. People help one another by telling what works for them. For example: practicing guided imagery, which is finding a place in your mind to take a soothing walk — perhaps along a white, sandy beach.

Shana lived in California until age 16, when her family moved to Washington state. “I loved the beach,” she said. “That’s my safe place for guided imagery.”

Or one could envision walking in the forest and listening to the rustling of fall leaves or the chirping of crickets. “Be creative and listen to the sounds around you,” Shana advised. “Or it could be something as simple as a heating pad or an ice pack. And laughter is great medicine. We have a lady in the group who jokes about wearing this ice pack. She goes to the grocery store with her ice pack. Every time we meet, we get to know where everyone is at. It helps people open up.”

Shana also has the benefit of loving pet therapy from Precious and Rocko, her buff-colored Chihuahuas. “Rocko lies next to me on the couch,” she said,

“And Precious knows when she’s in a lot of pain,” Colleen added. “She gives Shana kisses.”

After moving to Grand Forks, Shana, now 38, had a morphine pump implant for pain control. After 10 years, that had to be removed because spinal fluid was leaking into her abdomen.

For the past nine months, Shana hasn’t been able to keep food down, so in July, she had surgery for insertion of a feeding tube. The liquid supplement keeps the hunger pangs at bay, “but I miss the taste of good food,” she said.

With a walker or cane, Shana can stroll short distances. She uses an electric wheelchair for shopping. She’s now doing things she couldn’t do for years such as scrapbooking, arts and crafts and cruises.

Last December, she and her mom were on the Mexican Riviera. Now, they’re planning a January Eastern Caribbean cruise.

Shana continues to have “full-body, burning sharp-like electrical pain and aching.” But she no longer gives the pain a “10,” but rather a “4.”

She wears a Fentanyl pain patch. “I do have medications I can take on days when it’s cooler and damper,” Shana said. “As the weather changes, people get a lot worse.”

The Chronic Pain Support Group is an essential part of Shana’s life. “I love it,” she said. “I really look forward to meeting with everybody and talking. I had no life for many years. I would lie on the couch hurting and crying in pain. I couldn’t go to social events. I was pretty isolated. It affects every aspect of your life. The support group — I could never have done something like that.”

And now she can.

The Herald publishes Naomi Dunavan’s “In the Spirit” column the second Saturday of each month. Reach her at (218) 773-9521 or naomiinthespirit@aol.com. Also, see her blog at www.areavoices.com/inthespirit.

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