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MADISON – For Charles, the most difficult part of chronic pain was the uncertainty. He didn't know why the pain wouldn't stop and why he had to change his life so dramatically because of it.

The former illustrator was diagnosed with bilateral epichondolitis, which caused inflammation and pain in both elbows, attributable to long hours on the job. Charles followed a conventional treatment plan but found no permanent relief.

 
"I've always been a hard worker and didn't understand why this was happening," he says. "When you're off and you're home all day, dealing with chronic pain, it's very hard to understand what you're going through and why you're going through it."

When his doctor mentioned the "Lifestyle Skills For Chronic Pain" series offered by UW Health psychologists Shilagh Mirgain, PhD, and Michael DiMarco, PsyD, Charles was initially skeptical. He had done some Internet research on the subject of chronic pain which proved more alarming than beneficial, and also had a few preconceived notions about availing himself to a psychologist's talents.

"I was nervous going. I was thinking it would be a dark room, a couch…," he says.

Dr. DiMarco talks about the value of altering the meaning of pain.

As it turns out, the Lifestyle Skills series has shed light on the enigmatic problem of chronic pain and helped Charles learn that his pain is real, it's not his fault and there are positive ways to deal with it.

 

The five-week series endeavors first to consider chronic pain in understandable terms, which provides a basis for progress.

"We put together this series because we've found that people don't know how to make lifestyle changes with chronic pain," Dr. DiMarco says. "This type of condition doesn't come with a manual. People don't know where to get started with coping."

 

In contrast to acute pain, which subsides in time, chronic pain sufferers deal with pain for extended periods – for years, or even for a lifetime. This transgression of our customary logic of pain – it hurts, but eventually it's going to stop – often provokes confusion and distress, secondary symptoms that exacerbate the primary pain.

"There are two parts to pain - the physical pain, and the emotion and suffering caused by the pain," Dr. Mirgain says. "It's very common to see secondary symptoms like depression, irritability and anger."

These secondary symptoms lead to what Drs. Mirgain and DiMarco call the "vicious cycle of pain." The physical ramifications of pain are made worse by the negative emotions that follow. The cycle quickly spirals downward and often results in isolation. Because sufferers of chronic pain don't fully understand the syndrome themselves, they doubt anyone else can appreciate what they're going through.

Dr. Mirgain explains how pacing can help people better manage pain.

"People say they feel isolated because the pain persists and they don't know why," Dr. Mirgain says. "They feel overwhelmed and alone."

"They think if they have depression or anxiety, it's a weakness," Dr. DiMarco adds. "We try to explain that these are common things that you should expect with chronic pain syndrome."

Charles agrees, saying, "It better helps you understand how and what you do affects your chronic pain levels. It's not in your head. It's an actual syndrome that you suffer from."

With a foundation of understanding established, the series can move onto setting well-defined, realistic goals. Specificity is the key. Just saying you want to feel better isn't enough. Better, say Drs. Mirgain and DiMarco, to tell yourself you want to again be able to work in the garden one day a week or take a 20-minute walk on the weekend.

"Goals are hard to develop, but breaking things down is really helpful," Dr. DiMarco says. "We help them develop something that is measurable, so they know at the end of the week or month if they've achieved it."

 

In redesigning a life around the constrictions of chronic pain – "creating a new normal" – Drs. Mirgain and DiMarco emphasize pacing as an element integral to acceptance. Chronic pain patients sometimes will pursue a rollercoaster pattern of personal activity by trying to do everything on days when pain is less severe, which inevitably invites more pain. Or the fear of pain convinces them to restrict themselves to no activity whatsoever, which results in decreased fitness and pain flares when activity is again attempted.

Drs. Mirgain and DiMarco promote a balance between too much and too little activity.

"We encourage patients to plan their activities for a week, and on a good pain day we tell them not to overdo it," Dr. DiMarco says. "And on a bad pain day we tell them to bump it up a little bit, so they have some consistency in their activity level."

Perhaps most difficult for chronic pain sufferers is leaving behind the lives to which they were accustomed and embracing the new reality necessitated by chronic pain. Many patients resist, insisting they will once again be able to do all the things they love doing, but such recalcitrance impedes what Drs. Mirgain and DiMarco call "radical acceptance" – seeing and accepting life filtered through the lens of chronic pain.

"Patients feel they can't be happy until the pain is eliminated. That mindset will keep people stuck and hamper their creativity in terms of how to maneuver with this condition," Dr. DiMarco says. "You have to embrace the pain problem and say, 'This is a part of who I am but it's not the only thing I'm about.' You're greater than the sum of all your pain."

"Until a person can come to a place of acceptance, it is often difficult to move forward," Dr. Mirgain says. "Acceptance is a critical component to the series."

Charles seems to be moving toward the acceptance of which Drs. Mirgain and DiMarco speak. He uses the deep breathing and self-meditation exercises he was taught to control his pain, and he is focused on his goals while accepting that chronic pain may prevent him from attaining them in the exact form he prefers.

"I want to get back to my life and do the things I want to do," he says. "And if I can't do those exact things, I'll find other things that I can do and be great at."