Mornings are the hardest. The pain usually wakes her up about 8, with the excruciating stabbing and burning sensations starting in her calf before shooting up into her hip, the intensity so severe that within minutes tears stream down Deborah Darker-Spears’ face.
Her boyfriend, Charlie Rosenberg, wants to reach out and grab and hug her and tell her it will be OK, but being touched is the last thing she wants.
As soon as she opens her eyes, she reaches for 100 milligrams of a heavy-duty narcotic she sets out on her bedside table the night before, knowing that this will happen, the same as it does every morning, and then she waits for the drug to kick in. It will be just enough for Darker-Spears, 49, to function for the day.
It never used to be like this. She is brought to tears when she reminisces about when she could get out and travel to London, Paris or Mexico. Now she’s afraid to leave her Cloquet home for fear that the slightest bump into her leg could send her into unspeakable pain.
“There are some days when I can ignore it, where pain isn’t my priority. But most days, it’s my priority. It dictates what I do,” she said. “It has taken away my life. I’ve lost my home. I’ve lost most of my friends.” Darker-Spears’ story is typical for someone whose life is controlled by constant, chronic pain. In her case, Darker-Spears is afflicted with Complex Regional Pain Syndrome.
THE WORST KIND OF PAIN? Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy Syndrome (RSD), is a malfunction of the nervous system that causes nerves to send constant pain signals to the brain. Sometimes, a gust of wind or wrong touch from a piece of fabric can send a patient spiraling into pain. It’s not known what causes it or how to cure it, though in some cases spontaneous remission has been reported. CRPS is extremely rare — different estimates place the number of people afflicted at 200,000 to 1.2 million — and often is set off by a seemingly minor injury: a sprained ankle, a broken bone, torn tissue in a knee or shoulder.
We will see a perfectly normal guy who has a sprained ankle and now they have it,” said Dr. David Nelson, chairman of SMDC’s pain management program. And it can develop into some of the worst kind of pain imaginable. A survey conducted by the RSD Syndrome Association found that the average pain score reported by people afflicted with the syndrome was 7.9 out of 10, with 35 percent reporting that their pain was a 10. Depression is a common side effect, with 47 percent of those surveyed saying they thought about ending their life, and 15 percent saying they acted on the impulse.
“It feels like [my hand] is always broke,” said John Wanglie, 47, of Duluth. “It’s that much pain. It goes up the neck and radiates down my left arm and down to my leg.” Four years ago, while working as a nursing assistant on a surgical ward of St. Mary’s Medical Center, he got his hand caught between a table and a food cart, breaking his middle finger. Surgery repaired the break, but CRPS set in on the hand, rendering everything but his index finger and thumb immobile. Wanglie said he takes a laundry list of pain pills just to get through the day, even though they make him disoriented and blur his vision. “They’re supposed to knock out the pain completely, but it doesn’t,” he said. “You constantly have it. You always feel like crying.” Now permanently disabled, his wife, he said, has to help him get dressed and do all of the chores around the house. Since his worker’s compensation ran out, her work as a nurse has become their sole income as he waits to see if he’ll be approved for Social Security disability payments. He applied for that in August.
Many people with chronic, disabling pain who are forced into disability come to loathe the barriers set up to obtain financial assistance. Many can spend years waiting to get help, and some are forced to go to litigation. “People have problems trying to prove it,” said Jim Broatch, executive director of the RSD Syndrome Association. “There is no specific diagnostic test to rule in or out definitely that you have it.”
“ SUPPORT For Rochelle Steinhilb, 38, of Superior, finding herself in court and battling to get medical reimbursement was simply a way of life. “It’s not that people believe that you don’t have it, or that it doesn’t exist,” said Steinhilb, who developed CRPS in 2000 after tearing the rotator cuff in her right shoulder while working as a physical therapy and nursing assistant at Miller-Dwan Hospital. “It’s that getting proper medication and treatment can be so costly.” Steinhilb estimates that her medications cost about $5,000 a month. While that bill is paid by worker’s compensation, she said it took several years of fighting for the courts to make that happen. Living in Superior with her husband, Oscar, and three children, Steinhilb said she tries to make life as normal as possible. “I may be disabled,” she said, “but I am not going to give up getting my kids out the door.” That’s a constant challenge. Steinhilb said the pain can be so severe it impairs her vision and makes her vomit. At night, she can sleep for only about two hours before the burning in her arm and shoulder wakes her up. “Everyday tasks become much more difficult,” she said. “The burning and throbbing is constantly there.” For the past six months, Steinhilb has led an RSD support group, which meets the third Saturday of every month at the First United Methodist Church on Skyline Parkway. Up to 20 people have attended the meetings.
“It’s such an adjustment. You go through a grieving period, just like a loss of a family member,” she said. “It affects anybody and everybody around you.” Darker-Spears agrees that CRPS is difficult on her loved ones, including her boyfriend, who has to do most of the household tasks and has to be careful to not even brush his fingers across her leg. “Why he stays year after year after year is beyond me,” she said. “It’s very hard to be pleasant to people when you hurt,” she said. “People don’t understand that.” She developed CRPS three years ago after knee- replacement surgery. Before that, she had worked in the service industry, most recently as an associate at a jewelry store at Miller Hill Mall. After developing CRPS, she was forced to sell her home to pay bills and move to a place that was more accessible. Twice she’s gone into a nursing home because she couldn’t care for herself. Two years ago, the pain became so unbearable that she considered suicide and checked herself into Miller-Dwan’s psychiatric unit.
Now, she said the disease has spread from her knee and into her hip, and worries that it might be going into her arm. The pain is so severe that she’s often considered amputating her leg, she said, but instead hopes for the day that the CRPS will go into remission. “I don’t honestly believe it’s going to happen,” she said, “but you have to have something to hope for.”
BRANDON STAHL covers health. He can be reached at (218) 720-4154 or by e-mail at firstname.lastname@example.org.