By Shawn Hogendorf

Correspondent

PRIOR LAKE -- Bonnie Scherer of Prior Lake is no stranger to pain. She experiences pain equal to or exceeding that of childbirth on a daily basis. 

The pain is so bad in her legs that she can’t wear pants. Even in subzero temperatures, people will see Bonnie in shorts.

 She can’t work. She can’t sleep an eight-hour night. She can’t be up for more than two hours at a time. Every 15 minutes, she needs to sit down for two minutes to keep from going into a flare.Bonnie Scherer of Prior
Lake has lived with RSD for
nine years. (Photo by Shawn
Hogendorf)

When times are bad, she sleeps above the covers. 

“Anytime anything touches me, the bed sheets, pants, the dog’s tail, it is excruciating,” Bonnie said. “I can’t live life on any type of schedule. It’s hard to plan anything because you don’t know how you will feel.” 

She doesn’t give into her pain. Bonnie perseveres through life and helps others live with reflex sympathetic dystrophy (RSD) through the nonprofit organization she and her husband Steve started: The Minnesota RSDS/CRPS Coalition. 

RSD, also known as complex regional pain syndrome, is a chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. 

RSD comes on after a minor injury or trauma that the body faces, which develops into a chronic pain syndrome lasting long after the original injury, said Dr. L. Michael Espeland, an interventional pain management specialist at HealthEast Midway Pain Center in St. Paul. 

Bonnie is not alone in her pain. Millions of people have RSD, and it is more commonly diagnosed as medical professionals learn more about the disease that began during the Civil War. 

Bonnie developed RSD nine years ago, after she slipped on ice and sprained her ankle. Before being diagnosed with RSD, she saw a total of 17 doctors and had two surgeries on her ankle. She was told her pain was psychological. It was a sore ankle, and she had to learn to live with it.

 She was told by three different neurologists that there was nothing that caused her symptoms.

After two years of differing medical opinions about the source of her pain, she was finally diagnosed with RSD. 

RSD is difficult to diagnose because it’s very seldom that a patient shows all of the symptoms, Espeland said. It is a clinical diagnosis. There are no tests that give a definitive yes or no. 

There is a need for a medical evaluation to diagnose RSD, said Nurse Practitioner Angie Bruker of Fairview Pain and Palliative Center. It’s a complex syndrome with a large group of symptoms. Medical professionals must look at the big picture and listen carefully to the patient. They can’t just review the history. 

“It is something we don’t know a lot about. When there is a lack of understanding, there are problems treating it,” Bruker said. 

“There are many different medical opinions,” Bonnie said. “Every doctor sees this disease differently. That is very validating, because as patients we see the difference in opinions a lot in the medical community. I have learned you can agree to disagree with your physician, but you still need to respect them.” 

The therapies need to be combined with a cognitive-behavioral approach and physical therapy, Bruker said. It’s important to look at the overall functioning of the patient to enhance self-management, help them return to their roles in society and, when possible, decrease the pain. 

“There is no cure for pain, so it is not always possible to decrease it,” she said. 

The RSD pain scale is based on the patient’s level of pain, ranging from zero to 10, said LaVonne Dunn, a Brooklyn Center woman who has had RSD for 10 years. 

“I have never talked to a person with RSD who has a pain level under five or six on a good day,” she said. “That’s where most of us want our pain to be.” 

Bonnie lives her daily life at a seven or eight, she said. When first diagnosed, her pain level was a three or four. 

A pain level of six or seven is incredible pain, Espeland said. 

The pain is manageable in some cases through a number of pain medications, a spinal-cord stimulator that acts like a pacemaker for the nervous system, and electrical stimulation that passes through spinal fluid into the spine to block pain, replacing it with a more pleasant, warm, tingling feeling, Espeland said. 

“RSD is very individualized. There are no absolutes with RSD,” said Dunn, a member of the coalition’s board. “People may experience similar symptoms or pain, but each individual responds to RSD differently.” 

Bonnie has exhausted all of the options in an attempt to make her pain tolerable. She is on too many pain medications to count, has had sympathetic nerve system blocks, and is about to have a pain pump implanted with a medication derived from toxic properties of snails, in an attempt to touch the pain that morphine cannot. 

In addition to medicine and treatment, Bonnie uses relaxation techniques such as guided imagery to calm her flares down. 

“The longest time I have had without pain after a block was three hours,” Bonnie said. “I was in heaven. I had no pain. I didn’t know what that was like. This pain is my every day.” 

The RSD coalition emblem is a candle called the light of hope, Bonnie said. “I’ve accepted that this will probably never go away, but a part of me has to believe there is a cure, especially when I see kids with it,” she said. 

The pain Bonnie feels is not only physical, it is emotional. 

Bonnie has been through severe depression, she said. “Its part of the process to get to the point of acceptance, but you can’t give up. Giving in doesn’t mean giving up.” 

“It’s hard on the grandkids because they can’t just jump on grandma’s lap,” Steve said. “At first they don’t understand that. If they can’t physically see something wrong like a cast or a wheelchair, they don’t understand the pain.” 

“The hardest part isn’t the pain,” Bonnie said. “It’s looking at Steve and my kids and my grandkids because they hurt, and I can see the pain in their eyes when they look at me and I can’t do something because the pain is severe or I fall down.” 

Bonnie has become an advocate for people in pain. The coalition is a place for people with RSD to come together in the form of a support group. 

“When the group started, everyone thought they were alone,” Steve said. “It makes group members so happy to meet other people who share the same experiences they do. The support has become so deep and the network is always there. It isn’t just two hours a week that they get to talk about their problems. All people have to do is pick up the phone or get on the Internet. They used to be alone, but now they have fiends who know how they feel.” 

The coalition has become her family, Dunn said. “Following in Bonnie’s footsteps is something I can’t learn anywhere else. Bonnie and Steve mean a lot to me. They are very special people. They are always giving.” 

For information about the RSD coalition, visit www.rsdsmn.org.