The contents of a nightstand tell the story of people’s quietest moments, of how they start and finish their days: A book, reading glasses, perhaps a journal or the television remote. For David Parker, the nightstand in the bedroom of his Dallas-area home tells a tale of sleepless, pain-ridden nights and stiff, achy mornings.
There sits a constellation of pain relief: Emu oil for his wrists and hands. Salonpas patches for hurting hips and elbows. Copper braces for his knees. Turmeric and ibuprofen for the inflammation.
“I’ve had days where I didn’t even want to get out of bed,” said Parker, who has dealt with psoriasis for decades and psoriatic arthritis for the past several years. “I’m doing everything I can so I don’t have to worry about the pain.”
Chronic pain is a common bedfellow for people with psoriasis, particularly for the approximately 30 percent who also develop psoriatic arthritis. The disease’s trademark stiff, swollen, painful joints can make life’s most basic routines excruciating, if not impossible. At its worst, psoriatic arthritis pain has brought Parker to tears and has made formerly simple tasks like reaching for a jug of milk from the refrigerator too much to bear.
“The arthritis is a very hurtful pain,” said Parker, who by day oversees a fleet of trucks and drivers as a transportation manager. “It just wears you out.”
Yet like thousands of others who share his plight, Parker has successfully mastered his chronic pain through the use of a wide variety of therapies. Contrary to conventional medical wisdom, there isn’t a one-size-fits-all approach to managing chronic pain; as evidenced on nightstands across the country, it’s a battle fought on many fronts.
“Historically, we thought either that any therapy would work in all pain conditions, or that we could treat pain based on the disease the patient has,” said Daniel Clauw, M.D., director of the Chronic Pain and Fatigue Research Center at the University of Michigan. “We should be treating pain based on an understanding of the mechanism that is causing pain in that particular disease.”
In other words, the medical community now acknowledges what many people faced with chronic pain have known for a long time: What works for one person doesn’t necessarily work for another.
“The medicine has come a long way,” Parker said. “New people that are being diagnosed have a lot of choices.”
(Mis)managing chronic pain: a history lesson
Julie Cerrone was in fifth grade the first time she underwent surgery for pain in her left knee. Although she didn’t know it at the time, psoriatic disease was to blame — and she was only at the start of a spiral of pain that would plague her throughout adolescence and early adulthood.
Even when Cerrone’s doctors began to suspect arthritis as the culprit, successful pain management proved elusive. Two more surgeries, hours of physical therapy and plenty of prescriptions failed to eradicate the pain that had become her companion throughout the mid- to late 1990s.
“I remember getting prescribed anti-inflammatories like candy,” said Cerrone, now a 31-year-old patient advocate who lives in Pittsburgh. “I lived on naproxen from fifth grade until I graduated high school.” The drugs wreaked havoc on Cerrone’s stomach, and they didn’t necessarily alleviate her pain. Her physicians ultimately prescribed narcotic painkillers such as Vicodin, which also yielded only limited relief.
Such a course of treatment was typical of that era, when many physicians relied heavily on opioids in treating chronic pain, even when they didn’t produce much actual benefit to the patient.
“Now we realize that opioids never really work very well for chronic pain,” Clauw said.
One unintended consequence of their overuse is the current opioid epidemic that, according to the Centers for Disease Control and Prevention, claimed more than 33,000 lives in 2015. Only recently has the broader medical community begun to take a more individualized, nuanced approach to managing chronic pain.
“The classic way of thinking was if you just made the correct diagnosis of the underlying disease, you would then know what kind of drug or non-drug therapy to use,” Clauw said. “That turns out not to be the case at all.”
Among the more recent findings is the idea that for many patients, chronic pain emanates not only from the site of damage caused by a condition such as psoriatic arthritis, but also from the brain and central nervous system.
“What is really common in [autoimmune] conditions is what we call ‘centralized pain,” Clauw said. “The brain is turning up the amplifier on pain processing throughout the entire body.”
He estimates that roughly half of those patients who have psoriatic arthritis experience some degree of centralized pain — and for these folks, merely treating the joints involved with anti-inflammatories, biologics or other therapies won’t take the pain completely away. Because the source of centralized pain extends beyond the joints, a successful strategy for managing it must, too.
Targeting chronic pain: an individualized approach
If the first step in managing chronic pain is understanding its source, how do people with psoriatic arthritis know if their pain is strictly due to joint inflammation, or if centralized pain may also be at fault? Examining the location and quality of pain and the presence or absence of other symptoms can help patients and their physicians determine if centralized pain might be partly to blame.
“We look for pain in other regions of the body,” Clauw said.
Does pain extend beyond the joints, into the muscles of the arms, legs, back, neck? Does the patient have frequent headaches?
“That doesn’t happen with plain old garden-variety psoriatic arthritis that hasn’t centralized,” Clauw said.
Generally, the dull ache of centralized pain is also less affected by activity than is the peripheral pain originating in a joint; centralized pain is likely to be just as bad when people are inactive as when they’re not. A host of other symptoms also tends to accompany centralized pain, such as fatigue, trouble sleeping, memory problems and heightened sensitivity to light, sounds, odors and other stimuli.
Sometimes identifying centralized pain becomes a process of elimination; if treatment successfully reduces joint inflammation and swelling, but the patient is still suffering, chances are good that the pain has centralized.
“That type of pain is notoriously unresponsive to NSAIDs [nonsteroidal anti-inflammatory drugs] and opioids,” Clauw said. “It still befuddles providers.”
So what does work? In some cases, drugs that are used to treat fibromyalgia, such as Lyrica (pregabalin) or Cymbalta (duloxetine), can provide relief for people experiencing centralized pain, Clauw said. But for many, incorporating non-pharmaceutical treatments such as exercise and cognitive behavior therapy can be just as effective, if not more so.
“The non-drug therapies work quite well,” said Clauw, who has developed FibroGuide.com as a free resource for patients seeking such therapies. “They often work better than the drugs.”
Julie Cerrone can attest to the power of a holistic approach in managing pain. By her late 20s, she lived in debilitating pain from nerve and bone conditions that compounded her psoriatic arthritis. Despite taking 11 medications — including opioids three or four times per day — she was “absolutely miserable.”
“These things that were supposed to be making me feel better weren’t making me feel better at all,” Cerrone said. “I felt like there just had to be a better way.”
Over the next two years, Cerrone launched an all-out assault on her pain. She closely tracked her triggers, from dietary choices to sources of stress. She cut out problem foods such as gluten, dairy and soy; added supplements such as turmeric, vitamin B12, zinc and lysine; received regular acupuncture, cupping and chiropractic care; and began daily meditation and frequent yoga. She ultimately weaned herself off of all her medications except a very occasional painkiller — and today, she’s mostly pain-free.
“I used to think there was a magic bullet that was going to take away all my pain,” she said. “For me, I’ve found that’s not necessarily a reasonable expectation. It’s so important to figure out what your specific triggers are.”
Finding relief: an ongoing fight
David Parker took the long road to finding the triggers for his psoriasis and psoriatic arthritis. Even when psoriasis covered 60 to 70 percent of his body in the early 1990s, his doctor would send him home with no more than a “little tube of cream that just didn’t do any good,” he said. “I kind of gave up. I just dealt with it.”
He spent years at the mercy of his psoriasis, which would improve in the summer sun and return with a vengeance in the winter. He finally began Humira (adalimumab) about five years ago, which cleared his skin, but psoriatic arthritis soon reared its head during a flare in 2014.
“I couldn’t do anything,” he said. “I was homebound for a month.”
The idle, agonizing days of his flare did have one silver lining: They gave him time to research his disease and connect with others in his situation via social networks. There he learned about triggers and treatments he hadn’t considered before.
“I didn’t know stress was a major factor,” he said. “Stress is one of my biggest triggers for the psoriatic arthritis pain.”
He also began taking 500 milligrams of turmeric daily, which worked wonders for his joint pain for several months, then stopped working. In late 2016, he started taking Otezla (apremilast) and, coupled with stress management and an exercise regimen of walking three to four times per week, his pain is now under control.
“Some people have it worse,” he said. “I’m grateful for the way that I am. You keep that positive outlook and just get up and go.”
Cerrone also recommended a day-by-day approach to managing chronic pain.
“When I was in the midst of all my pain, I couldn’t see the end,” she said. But by living in the moment, “I was able to see the small progress that I was making. All those little moments add up to big moments, and [before you know it] you’re closer to the finish line than you thought."
NPF’s Chronic Pain Management Hub
If you are living with chronic pain, NPF has developed new tools to help you better understand, manage and talk about your pain. Visit our Chronic Pain Management Hub to access new information, download resources and request our free Chronic Pain Management Guide, an interactive workbook that helps track your pain and the impact it has on your daily activities.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.