Pubdate: Sun, 20 Jul 2003
Source: Parade Magazine (US)
Copyright: 2003 Parade Publications
Contact: http://www.parade.com/email/index.lasso
Website: http://www.parade.com/
Details: http://www.mapinc.org/media/336
Author: Arthur Rosenfeld
Note: Arthur Rosenfeld's new book, "The Truth About Chronic Pain" (Basic 
Books), explores the challenges of facing, understanding and overcoming 
persistent pain.
Also: Parade is included in the Sunday edition of hundreds of newspapers. 
Letters are published online only.

IS CHRONIC PAIN NECESSARY?

Millions of Americans cope with persistent pain that goes untreated or is 
inadequately treated, even though the means exist to bring them relief. 
Arthur Rosenfeld - author of the new book "The Truth About Chronic Pain" - 
explores the world of the pain patient and suggests how to make it better.

"OFTEN, IT FEELS AS IF MY ARM, my leg and the left side of my face are on 
fire" says Esther Reiter of Chicago.

"When that pain starts, it doesn't stop, though I can block it when I sleep."

Reiter, 60 - who has a brain condition called thalamic pain syndrome - is 
one of an estimated 50 million Americans who cope daily with pain, often 
disabling. Many suffer needlessly and lead unnecessarily restrict-ed lives 
because they do not get the relief they need.

Chronic pain takes over lives. Reiter calls pain "an adversary I must 
continually fight in order to function." While she has access to the strong 
medications she needs to cope, her pain never goes away completely. For 19 
years, it has ruled her daily activities. "I'm in extreme pain when I wake 
up," she says. "if I have to be somewhere at 9 am., I have to getup at 5:30 
or 6, take medication, rest while it takes effect, then get up again and 
shower."

Pain also is a key factor in her relations with others. "1have to be 
careful," she says. "Talking about it with friends carries the danger of 
burdening the friendship. People feel badly when you're in pain. It can 
become a barrier.

"It's an enormous part of who I am.  That bothers me. I don't want to be 
'the person in pain.' I don't want to be pitied."

Hal E. Garner, 4l, of N. Logan, Utah was a promising player with the 
Buffalo Bills when a spinal injury ended his football career and propelled 
him into the world of a chronic-pain patient.

Gamer lived with pain for 12 years before he found effective therapy. He 
felt pressure to adopt a stoic posture. 'Everyone gets sick of hearing how 
you hurt," be says. 'I had to paint a smile on my face every day.

"People think you're making it up. They want you to see a psychiatrist. But 
this pain is real. It comes from rods in my back and scar tissue pressing 
on nerves. It was hard to sleep, to get out of bed in the morning, go to 
work day to day and make a living-and keep everybody happy."

Today, Garner has a pump that delivers strong medication directly into his 
spine. A specialist helps him to manage his pain. "Now" he says, 'I don't 
have to put on a smile or make excuses for myself."

Why Pain Patients Don't Get Better Treatment.

Ideally, alleviating chronic pain is a straightforward exercise of human 
kindness. Instead, "pain management" has become a battle ground of 
conflicting agendas and priorities among doctors, patient advocates, 
government regulators and the insurance companies.

A key issue is the widespread fear of addiction.

"Hooked" on Painkillers?

The medications that help Reiter and Garner are called opioid analgesics. 
Related to morphine, one of the strongest painkillers known, they are 
generally safe and effective. They're not for everyone, but for many, these 
drugs are a god-send. (Treatments such as hypnosis, biofeedback, surgery, 
physical therapy and acupuncture also can help.)

Yet not everyone who needs these drugs gets them. Many doctors are 
reluctant to prescribe opioids for fear that their patients will become 
addicts. Addiction is a serious disease with psychological, social and 
probably genetic roots. Dependence is an unavoidable side-effect. While 
pain patients may become physically dependent on medications, research 
shows that addiction is uncommon unless there is a previous history of 
substance abuse. The pain patient depends on the drug the way a diabetic 
depends on insulin. Misunderstanding this difference creates problems.

"When you tell somebody you take an opioid" says Reiter, "they look at you 
like, 'Oh, my goodness, she's going to become addicted!' But I don't use 
drugs, I take medication. I'm not addicted; I'm dependent. And I monitor 
myself carefully."

"I ran into prejudices at every job I went to," says Gamer. "I was seen as 
addicted to medications."

Some doctors withhold or under-prescribe opioid painkillers because they 
are wary of scrutiny by state medical boards (some states set dosage limits 
for these drugs) and the Drug Enforcement Agency. In the climate created by 
the "war on drugs," a person reporting pain whose cause can not be 
determined may be suspected of seeking a prescription for a controlled 
substance.

"They thought I was faking pain." Mathew Rudes, 17, of Northridge, Calif. 
was born with severe infantile Marfan syndrome - an often lethal 
connective-tissue disease that also affects the heart, blood vessels, eyes 
and skin. Multiple surgeries and other procedures saved his life but Rudes 
had recurrent episodes of severe spinal pain that doctors could not 
diagnose. Many didn't believe it was real. "They'd do scans, X-rays and 
other tests, and they'd come up negative" Rudes says. "The doctors thought 
I was faking it. That made me really angry."

He is now under the care of a pain specialist, who prescribes effective 
medications and monitors his dosage weekly. Mathew is an 11th-grade honor 
student. "I have a 4.O grade average" he says.

The Cost of Relief.

Finding the best treatment often requires a trial-and-error process. Few 
treatments are cheap, and health plans may put caps on how much they will 
pay and for how long. A patient who needs a costly medication for a 
lifetime may be covered for only six months.

What Needs to Change.

If chronic pain is to be defeated, say pain care professionals, people need 
to understand that pain can have wide-ranging effects and hidden causes. We 
need to be clear on the difference between addiction and dependence. The 
romance with stoicism must go. Above all, more compassion is needed - from 
doctors, legislators, insur-ers and everyone else - so that chronic pain 
receives as much attention as drug abuse. We must stop judging sufferers 
and see pain for what it is: a part of life. It could happen to any of us.
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