Constable: World colored by never-ending pain for people with rare disorder

During her explanation of how her chronic disorder cost her the nursing career she cherished or soured some relationships with relatives and friends, Kathleen McGill wipes away a tear. But the emotional pain of the 51-year-old Arlington Heights woman's complex regional pain syndrome pales in comparison to the never-ending, excruciating pain caused by her rare disorder.

“I'd say my pain right now is about a 7,” McGill says, noting that she considers it a good day when her agony isn't off the 0-10 chart hospitals use to assess pain. The right side of her face occasionally undulates with small spasms. Sometimes they are strong enough to break teeth.

“Some days are better than others, but I don't go a day without crying about it,” McGill says.

“It's probably the most perplexing and most painful condition you'll ever see,” says Dr. Mehul Sekhadia, one of McGill's doctors and medical director of the Interventional Pain Management Center at Advocate Lutheran General Hospital in Park Ridge. “Putting on a T-shirt might cause severe pain. The wind blows and it hurts like crazy.”

Also known as reflex sympathetic dystrophy or RSD, the disorder kicked off an awareness month Monday with a Color the World Orange campaign in Illinois and other states, with people wearing orange clothes or sporting orange ribbons to raise awareness. As “One of the Many Faces of RSD,” McGill says the first step is to educate people.

“The problem with this syndrome is that you've never heard of it until you develop it,” says Jim Broatch, executive vice president of the Reflex Sympathetic Dystrophy Syndrome Association. On one widely accepted pain index, the pain from the syndrome rates a 42 on a 0-50 scale — slightly higher than the pain of amputation or childbirth.

It was first diagnosed in the United States among Civil War soldiers complaining of a burning pain. “Their wounds had healed, but they still had this pain,” Broatch says.

Pain management for CRPS includes simple physical therapy, narcotics, devices and the latest painkilling drug made from the venom of a poisonous sea snail, Sekhadia says. He says “catching it early” is a key to treatment.

Two spinal stimulation devices implanted into McGill's back send electric impulses to her spine in an attempt to disrupt the nerve impulses that make her feel pain. This month, she will begin receiving that new drug delivered through pain pumps that will reduce her need to take narcotics and other drugs by mouth.

The pain causes people with this disorder to sweat, turn red, swell up, spasm and be unable to move. McGill posted a difficult-to-watch video on YouTube of her spasming right hand clenching up during a painful attack that sent her to the emergency room.

“People don't believe you, how bad it is. It's so easy to be dismissive about the disease,” McGill says. “It feels like someone poured gasoline outside and inside my entire body and lit a match.”

Her ordeal began on Nov. 17, 1991, when her car was rear-ended by a drunken driver and her jaw dislocated as it hit the steering wheel. Doctors told her they fixed the problem and that her injuries would heal, but the pain always returned, says McGill, who has a grown daughter and a young granddaughter.

“It felt like my face was on fire. I'd get these electrical shocks and my face would spasm,” she says. She had four surgeries on her jaw, but the pain always returned, worse than it was before, McGill says. While living in California, she received her RSD diagnosis from a doctor at Cedars-Sinai in Los Angeles.

“Of course you are in pain,” she remembers the doctor telling her. “It's your nervous system that's screwed up. It's your brain.”

The Reflex Sympathetic Dystrophy Syndrome Association says people with the chronic neurological condition often have difficulties making loved ones and even physicians understand that their pain is real.

“The No. 1 reason people die with this disease is suicide,” McGill says, noting how Facebook messages among RSD sufferers refer to suicide as “the cure.”

McGill says her case worsened in 1996, when the pain spread to the left side of her face.

“I couldn't work. I couldn't concentrate,” says the nurse who worked for an agency and did stints at many suburban hospitals, often helping cancer patients control their pain. “It's one of the biggest blows to me that I can't work anymore. I loved it. I loved every second of it.”

McGill says she went on disability in 2004 and suffered another setback when she fell on the ice in 2010 and shattered a bone in her shoulder. After a second surgery to fix that break, McGill says the syndrome spread. After a routine pelvic exam, she developed the chronic pain throughout her lower body as well.

“You don't want to talk about pain because you don't want people to perceive you as weak or helpless,” she says.

She lives with her parents, Jerry and Joanne, who are in their 80s and help take care of her and advocate for her, she says. Crediting her Catholic faith for giving her the strength to carry on, McGill says people often tell her mother that they are praying for her.

“Thanks for praying for her,” her mother replies. “But don't pray for her. Pray for a cure.”