Is Chronic Pain Necessary? (long article)

Discussion in 'Fibromyalgia Main Forum' started by Dara, Jul 21, 2003.

  1. Dara

    Dara New Member

    This is the article I posted about that was in the Parade Magazine, Sunday 7/20/03 issue.

    Is Chronic Pain Necessary?
    By Arthur Rosenfeld

    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 restricted 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 a.m., I have to get up 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. "I have 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 Jr., 41, 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. Garner 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," he 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 dont' get better treatment. Ideally, alleviating chronic pain is a straightforward exercise of human kindness. Instead, "pain management" has become a battleground of conflicting agendas and priorities among doctors, patient advocates, government regulators and the insurance companies. A key issue is the widespread fear of addition.

    "Hooked" on painkillers? The medications that help Reiter and Garner are called opiod 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 godsend. (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 opiods 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 opiod," 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 Garner. "I was seen as addicted to medications."

    Some doctors withhold or underprescribe opiod 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 cannot 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," Rude 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 4.0 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 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, insurers 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.

    The End

    Arthur Rosenfelds' new book, "The Truth About Chronic Pain" (Basic Books), explores the challenges of facing, understanding and overcoming persistent pain.

    How (And How Not) to act with a Person in Chronic Pain:
    People with chronic pain want to know that you believe them and that you care. Here are some guidelines for dealing with someone in pain:

    DO NOT judge the person. Pain is not a sign of weakness or bad character.

    DO acknowledge the person's suffering.

    DO NOT pretent that you don't notice the struggle.

    DO act with respect.

    DO NOT dwell on the future. Pain forces people to live in the present, so make the present pleasant. Be upbeat.

    DO offer assistance. Ask if there is anything you can do: run an errand, take him or her to a doctor, adjust a pillow, make a call.

    DO NOT dwell on your own problems. Talk about light subjects: a book you've read, a movie you want to see.

    DO treat the person the way you would like him or her to treat you.

    OK, that's it, I apologize for any errors but my eyes are crossing now and don't have the energy to try and edit it and correct any errors.

    There is also an excerpt from his book that I will type out later.

    [This Message was Edited on 07/21/2003]
  2. JP

    JP New Member

    this is VERY generous of you to type this out. Great article. I sure hope your hands are okay.

    Thank you!
  3. Dara

    Dara New Member

    At least it was written in a positive way regarding chronic pain, didn't make it sound like we were all just nuts or anything.

    My hands are better today, but yesterday I couldn't even hold onto a coffee cup. You know the routine I'm sure.

    Take care & thanks for the reply.

  4. babyjoan

    babyjoan New Member

    Hi Dara

    Thanks for the article. It actually made me cry. What a great world we would have if people could and would do all that was listed in the article!!

  5. Dara

    Dara New Member

    better place if only everyone could find the compassion and empathy for others and their situations. I think too many people are only interested in themselves and too selfish to try and look at things throught the eyes of others. I am glad you enjoyed the article, I was quite impressed with it. I'll probably get the book from the bookstore and see what else he has to say.

  6. MissRachel

    MissRachel New Member

    Here is the article

  7. Dara

    Dara New Member

    It was originally posted on 7/21/2003.

  8. Mar19

    Mar19 New Member

    Thanks so very much for taking the time to type all this out. I'm going to copy and paste it and then print it out. I only wish I had seen it when it was first posted, I could have saved my Parade magazine from the recycling bin to keep; actually to have my family read it too.

    This chronic pain is really a hard burden. THankfully, my doc is very compassionate and willing to work with me. His outlook on it is that no one should have to endure pain on a daily basis. (God bless you, Dr R!!) He has reassured me more than once that I am definitely NOT an addict, that I need these meds to function on a daily basis. With family and friends, I'm very selective in who I tell that I take the meds. DH is concerned, of course, but realizes what my life would be without them...he's seen it. Kids were concerned too, but they have also seen me with and without. Not too many of my friends know exactly what I take. One of them, when they found out kept asking me to "share" my meds. Yeah, like that's what I want to do. Risk them hurting themselves and me not being able to obtain the meds anymore -- or just simply not having enough to get thru the month comfortably.

    Oops! I'm rambling again! Someone stop me! LOL I really just meant to say "thanks".

    Love and blessings
  9. Dara

    Dara New Member

    that there would be lots of people interested in it. You are very fortunate to have found such a great doctor. My doctor is also rather good at prescribing enough pain medication to get me through. I have also had the same problem as you, certain people asking if they could "borrow" some pain medication. My standard answer is I don't have any that I'm willing to part with. My doctor had me sign a pain contract so I know exactly how many I am allowed to take per month, and so way am I running out. Besides, if there pain is that bad then they need to find their own doctor for treatment.

    Glad you enjoyed the article.