Millions of Americans suffer from chronic pain. While there is still no “magic pill” for the illness, there are ways to manage it. This article from US News Health features some of the people who have learned to cope with chronic pain.
Imagine gritting it out with sharp, throbbing pain from a
migraine or back injury for just a few hours. Or doing your best to concentrate at work through the ache of an abscessed tooth.
Now,
imagine coping with similar pain for years – and though it goes away at
times, it's never for long. Sadly, that's the reality for millions of
Americans. Chronic pain can take over a person’s life, but it doesn't
have to. Still, there's no magic pill. Learning to manage pain is a
process you go through and a decision you make.
Pain’s Wide Reach
Pain is invisible – others can't see it or touch it. There isn’t a blood
test that measures pain, or an X-ray that confirms its existence. It
can be hard for people to get their pain taken seriously. But pain is a
big problem. About 100 million U.S. adults are affected by chronic pain,
and it costs up to $635 billion yearly in medical care and lost
productivity, according to a 2011
Institute of Medicine report.
Backaches and headaches (especially migraines) are the most common pain
culprits, but there are many others. Arthritis, injuries, pain from
cancer or heart disease, genetic conditions like sickle cell disease,
and surgical complications like severed nerves – any of these can result
in pain that becomes a continual presence.
Here to Stay
For Penney Cowan, founder of the American Chronic Pain Association,
the journey with pain began nearly 40 years ago. Fibromyalgia was the
reason, but it took six years for doctors to properly diagnose it. Even
today, the cause of fibromylagia is still unclear, but common symptoms
include widespread muscle pain, fatigue and sleep problems. In Cowan's
case, pain affected nearly her entire body and worsened to the point
that her quality of life was "down the tubes," she says. "I couldn't
even hold a cup of coffee; it was too painful." It became so bad, she
says, that it consumed every waking thought and moment.
When does
pain cross the line from temporary setback to lifelong condition? "If
the pain's been around for five years, the chances of having zero pain
are probably pretty small," says Robin Hamill-Ruth, an anesthesiologist,
pain management specialist and president of the American Board of Pain
Medicine. At that point, she says, pain management becomes the goal:
"How do you get the pain to a level that it doesn't control [patients']
lives – they control it?"
Facing Loss
Mariann Farrell, 67, was a music educator in Philadelphia until two car
collisions ended her career years ago. “Horrible” sciatica – pain from
the sciatic nerve that travels from the lower back and down the legs –
kept her bedridden for a year and a half, leaving her husband to cope
with two kids, the household and everything else. “I got very depressed,
helpless and hopeless,” she recalls.
At first, Farrell’s strategy was one that many patients fall into –
doing less and less in an effort to avoid anything that might trigger
pain. “I thought, if I can lie in bed and be very quiet and still, the
pain would go away,” she says. But it only got worse. She says the
impetus for getting out of bed came as she was crying alone while the
rest of her family attended her son’s chorus recital. “I asked myself
what I was doing,” she says. Farrell decided she might as well be
watching her son in pain, rather than being bedridden in pain.
Chronic pain "is a loss of function; it's a loss of self," Hamill-Ruth
says. Unlike acute pain, where the predominant emotion is anxiety, for
people with chronic pain, it's depression. "When people have lost
function – they may have had a back operation – there are just things
they can't do," she says. The resulting grief, she says, is no less than
it would be for the loss of a limb. People like Farrell, who could no
longer teach the music she loves, or a manual laborer who's the family
breadwinner but can no longer do physical work, have to find ways
to "redefine" themselves, Hamill-Ruth says. "Once a person identifies
how they can be a person who lives with chronic pain, and still have a
quality of life and still be a person, they tend to do much better."
No Easy Fixes
When pain begins, sufferers first try
over-the-counter painkillers
such as Tylenol and Advil, or simple home remedies. If those don’t help
much, they may ask their physician for stronger prescription drugs to
treat pain. These include opioid (narcotic) painkillers such as Vicodin
or Oxycontin, certain types of antidepressant or anti-seizure
medications, and corticosteroid injections. But people who expect
chronic pain to disappear after swallowing a pill or putting on a patch
are usually disappointed. "Pain medicine doesn't take away the pain,"
Farrell says of her own experience. "It mitigates it."
With growing scrutiny as issues of opioid addiction, overdose and
improper prescribing emerge, doctors are more reluctant to start
patients on these painkillers. That may not be a bad thing, according
to Hamill-Ruth. "Opiates
aren’t very good, for all the noise they get," she says. "They don’t
work that well
for a long period of time; they're better for acute [than chronic] pain,
but there are enough side
effects and problems" to limit their usefulness.
Some patients go through increasingly invasive procedures to control
pain. These could be nerve-block numbing injections or implanted devices
to deliver anesthetics straight to the spine. And some people resort to
surgery, such as spinal decompression or disc replacement for
intractable back pain.
But when chronic pain withstands medical procedures and prescriptions,
health providers may eventually say, "Just learn to live with it," Cowan
says. In response, she adds, the American Chronic Pain Association’s
new catchphrase is "Don't tell me to live with it. Teach me how to do
it.”
If relief from a pill or procedure is often only partial – pain drops
from a 10 to a 7 – people usually give up and move on to the next pill
or procedure. But that’s not always the answer, Cowan says. Pain
management involves finding a combination of methods that works for
you. Medication-free options include physical reconditioning – physical
therapy, stretching exercises and weight lifting – to mind-based
treatments, such as cognitive behavioral therapy, biofeedback and
hypnosis, and stress management techniques like
meditation. The
most effective techniques vary for each individual. With Farrell, for
instance, music therapy is a must. For Cowan, it’s her morning
stretching routine.
Weight loss
is the most valuable modification for many chronic pain patients,
according to Hamill-Ruth, because it relieves the burden of additional
weight on the joints. Movement is essential for all patients, she says.
"Staying active is just critical. If you don't [move your body] it gets
weak, and it's a downward spiral of deconditioning, being more
vulnerable to injury." It helps to set achievable goals for yourself,
she adds, even if it's walking three minutes a day and next week bumping
it up to four minutes.
Seeking Specialists
Decades ago, the
Cleveland Clinic
rheumatologist who confirmed Cowan’s fibromyalgia told her she’d have
to live with the pain. But he also referred her, with some skepticism,
to an in-house pain specialist who could teach her
how to live
with it. Equally skeptical, she entered the program and with seven weeks
of comprehensive pain management, she says, “I went from patient to
person again.”
Thirty-five years later, pain management is an established medical
subspecialty. But with only about 3,500 U.S. physicians board-certified
in pain care, that means there are 28,000 people with chronic pain per
specialist, according to the IOM. So primary care providers deliver the
bulk of treatment for chronic pain. When it comes to finding a pain
practitioner, some are more qualified than others, Ruth-Hamill says.
"You can look up a pain doctor in the phone book and can't tell whether
they did a two-year pain fellowship or a weekend course." Her group is
pushing for stricter credentialing that requires a background in
comprehensive pain management that includes familiarity with psychiatric
and complementary medicine.
Sharing Your Pain (Management)
Isolation is a hazard of chronic pain, Farrell says, making depression
worse, and it's crucial to interact with others in a similar
situation. She recalls the moment she became aware that others shared
her struggle, while attending her first support group meeting. "Having
them understand me and my life, and I theirs, was of great emotional
benefit," she says. She didn't have to explain her pain; they
understood. She now facilitates a support group whose members listen
daily to a music CD she put together.
When it comes to pain management, the focus is increasingly shifting
toward the role of patients – with an emphasis on self-management and
becoming an active part of the health care team. To further that team
mentality, Cowan is currently traveling to Veterans Affairs hospitals
and talking to patients and health providers about how to live with
chronic pain and bridge the gap between the health care provider and the
person with pain. For her part, Hamill-Ruth says pain management is a
team sport, and patients are the key players. She describes a patient
who did really well with self-management after turning her attitude
around. "She said, 'I finally figured out that this is my pain,'"
Hamill-Ruth recalls, "'and I'm going to have to own it if I want to get
better.'"
Dr. Melanie Novak, M.D., specializes in the diagnosis and treatment of all types of pain and provides an individualized treatment plan for her patients’ unique needs. For more discussions on chronic pain management, follow this Facebook page.