Just describing the pain is hard enough.
“Imagine a toothache,” said John Bell, who gathered with several others at a Fairway medical office last week to talk about what they called “the stigma” of living with chronic pain.
“You put that toothache in any part of the body, sometimes in multiple parts at the same time … sometimes even in your eyes,” he said. “Now imagine a dentist trying to extract that tooth without using novocaine.”
Hard to imagine. And for people who don’t suffer the hardship, including physicians, the pain is impossible to see, difficult to diagnose and thus easy to doubt.
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So some living with chronic pain — by one estimate, as many as 42,000 people in the Kansas City area — don’t talk about it.
But last week, on a night rocked by a lightning storm, those in a group hoping to raise awareness gathered from out of their usual shadows. To talk of doubters who may think chronic pain is an excuse for getting out of work.
To talk of clinicians who roll their eyes in the emergency room after a bad flare-up hits.
And of friends (at least those they’ve told) who probably think they’re whiners, if not crazy.
“My children think I should just suck it up and move along,” said Tamara Figge, 56, who spends most of her days flat on the couch.
Independence resident Kalind Perry, 29, has been on both sides of the pain divide.
A former emergency medical technician aboard an ambulance, Perry was dispatched to too many “3 a.m. toothaches” not to be suspicious. Was severe pain the issue, or was it a play for a quick narcotics fix? She’d suspect the latter.
Then after being attacked by a patient in 2012, Perry’s skull began to throb. Horribly and often.
“Suicide headaches,” she called the pain, which drove her to scream for help from wary care providers.
Yes, she’d insist, this pain is real and unbearable.
“My own perceptions of this issue have turned around completely,” Perry said. “It’s not bullcrap.”
Yet given reports in recent years of a nation tragically abusing painkillers, an initiative called Relieving Pain in Kansas City, on which Perry and others serve as citizen advisers, faces an uphill public relations climb.
There are good reasons for the medical community to be careful dispensing drugs, all agree. There are reasons, as well, for pain sufferers not to talk, for keeping their struggles secret from employers who might fear lost hours or higher insurance premiums.
Downplaying pain also helps keep friends.
“I try not to mention it,” said lawyer Mike Hockley, a partner at Spencer Fane who endures continuous back pain and is lending support to the Relieving Pain initiative, organized by Kansas City’s nonprofit Center for Practical Bioethics.
“A lot of my colleagues here don’t know. They’ll say, ‘You OK? You don’t look so well.’ And I’ll downplay it. ‘Oh, just a little pain. …’ I’m not sure they understand.
“But my wife immediately knows when I come home after a bad day,” Hockley added. “She sees it in my eyes.”
Living with pain
Pain for Hockley, whose civic life includes being a charter board member for the United Way of Greater Kansas City, dates to a 2005 bicycle accident.
As with others living with chronic pain, surgeries were supposed to have fixed his injuries. But although X-rays confirmed bone repair, something else left him hurting.
He said his difficulties pale compared with those of others he knows with chronic pain.
Kathleen Warren is one. A former kindergarten teacher at Fort Leavenworth, Warren never recovered from a routine appointment to fill a tooth cavity a decade ago.
She tried everything to ease a mysterious, searing pain originating from the right side of her mouth down to her neck and up to her forehead.
“Oh my goodness, I’ve probably tried 15 different medications” on top of surgery, nerve blocks, acupuncture, electric jolts and other therapies, Warren said.
“When I have to explain it to people, they’ll say, ‘Really? You look so good,’” said Warren, 64. “But then I wonder why I feel so bad.”
So bad, in fact, that she avoids stepping outside in a cold wind.
Even an air conditioner blowing at her in a restaurant will spur her to seek a new table.
“That can be a little embarrassing when you’re with friends,” she said.
Years of uncertainty finally produced a diagnosis: trigeminal neuralgia, a nerve disorder estimated to affect about one in every 20,000 people.
Complicating any discussion of chronic pain are such obscure, hard-to-pronounce conditions of unknown cause — a typical one being fibromyalgia, a diagnosis many doctors reach when no other explanation exists, according to the medical community.
For Jason Ward, 39, it’s Camurati-Engelmann disease, a rare genetic bone disorder that took specialists nearly 20 years to diagnose in him.
Most just thought he was a tall, long-legged kid with growing pains.
But his sore joints and migraines were strangely severe, beginning in middle school.
“The first doctor we saw said it was constitutional, meaning it was just how I was,” said Ward, of Kansas City.
For no known reason, he kept growing taller even through his 20s, reaching 7 feet by the time Ward was diagnosed at age 30. His hearing suffered, the arches in his feet dropped, his knees turned inward and pain persisted throughout his body — symptoms now attributed to the disease for which Ward was the featured patient in a 2010 science journal.
Try explaining all that, Ward said, to passersby who stop him and comment on his height.
“They’ll just come up and say, ‘Hey, you play basketball?’” and Ward doesn’t bother to tell them he can’t.
“Well, you should,” many say. Some even take his picture.
“I’m thinking, ‘Thank you very much, random stranger,’” Ward said. “They don’t think about the fact I need 10 medications just to get around.”
The aim of the Relieving Pain in Kansas City effort, which is seeking grant money and donations, is “to transform the way pain is perceived, judged and treated,” said project manager Cindy Leyland of the Center for Practical Bioethics.
With low-income pain sufferers thought to be the most underserved, organizers hope to integrate a far-flung network of patients, “safety net” clinics, physicians and therapists who approach treatment in ways that extend beyond a drug regimen.
There have been setbacks. A research institute last year declined to award a $1 million grant to help the center develop a Web portal for pain patients.
Some critics object to the center and other advocacy groups accepting contributions from drugmakers, which Leyland defends as necessary to fund the center’s goal of improving patient outcomes.
The initiative was spawned from a 2011 report of the nongovernmental Institute of Medicine, which, at the directive of the Affordable Care Act, weighed in on chronic pain. The report noted the need for a national effort to address the problem as a public health crisis. Many questioned its estimate that chronic pain affected more than 100 million American adults, tens of millions more than estimates of other medical groups.
The local effort is fraught with challenges, Leyland said.
For the advisory panel of citizens trying to “build a grass-roots movement that says chronic pain is real,” the mission starts with banding with fellow patients, though pain leads many to socially withdraw, she said.
“Part of the social stigma of living in chronic pain is that the people around you stop listening,” she said. “Family members get sick of hearing it. Care providers get frustrated doing all the right things that still don’t produce the desired outcome.
“There’s so much benefit to these patients being in a room with people who don’t turn you off.”
Those gathered for last week’s meeting reflected the array of injuries, diseases and sometimes baffling conditions that lead to a common challenge for pain sufferers: finding a trusting doctor.
“I understand why doctors are suspicious,” said Bell, who has sickle cell disease. “How can you tell if a person is in pain? How does a doctor know you’re not just looking for drugs?”
Overstating his agony makes clinicians doubtful and standoffish, Bell said.
“You need a doctor who wants to get to know you. It’s like dating. You put your best foot forward and hope they believe you.”
Tensions between pain patients and physicians are common, especially as concerns mount over the widespread prescribing of opioids, the most powerful, addictive painkillers.
Family physician Michael Munger, who sits on the board of the Leawood-based American Academy of Family Physicians, acknowledges that many doctors are reluctant to treat patients who cite conditions that no lab test can confirm — especially if the first line of treatment, often medication, produces no results.
The “ultimate dilemma,” Munger said, is when unsatisfied patients switch doctors.
“Unfortunately, antennae are going to go up when a new patient has already seen a physician or two or three … and that person is saying oxycodone is the only thing that helps.
“We’re hearing from our state boards and professional societies to be careful,” Munger said. “We need to watch for this.”
But the best doctors, he said, approach chronic pain cases in ways that many sufferers say they seek.
“You do need that family physician who knows you as a whole person because it really is a process,” he said. “It shouldn’t be, here, take a pill and it’s a quick fix.”
As for dealing with employers, attorney Hockley said pain sufferers face a Catch-22. Telling nobody about your pain or the medications you may take could raise substance abuse suspicions among co-workers who see you behaving erratically or missing work.
Telling everybody, he said, could lead unsympathetic employers to find reasons to cut you.
Disclosure “can be a double-edged sword,” he said.
University of Kansas medical student Joel Burnett, who spent a summer fellowship interviewing local patients living with pain, said a “clash in priorities” typified their struggles.
Most don’t want to take pain pills and deal with side effects, but they will if the pills control their suffering.
“You choose between reducing pain and being completely nonfunctional,” Burnett said.
“What pain patients really want is validation and legitimacy from a primary care physician,” he added, but they’ll doctor-shop if need be, raising the doubts of each physician they visit.
Finally, they often need a compassionate ear to listen.
“But they know there’s a social stigma to this,” Burnett said, “and many don’t want people to know.”