A Lifestyle of Pain: Managing the Chronic Pain of Fibromyalgia and More

Jody Gardner had joints in her feet removed to reduce the pain and enable her to walk “more like normal.” She had a hot tub installed at home to supplement the warm-water exercise she enjoys and needs.

She watches what she eats, exercises regularly and has developed a close working relationship with her doctor. When you have chronic pain, as she does, you keep trying things until something brings relief.

Gardner was diagnosed with rheumatoid arthritis when she was 22; doctors figure she’d already had it for some time even then. Forty years later, chronic pain is just one aspect of the woman’s active life. “I do so much better now than I ever did when I was young. I do know how to manage it,” she said.

Others are still learning to live with pain. The American Chronic Pain Association says people in the United States are living a “lifestyle of pain.” Headaches, back injuries, arthritis, fibromyalgia, Parkinson’s disease, neuropathy and many other medical problems or injuries can be associated with chronic pain. There are also cases of real pain with no clear medical cause.

The Joint Commission on the Accreditation of Healthcare Organizations says that nearly a third of Americans will experience chronic pain sometime. It’s estimated that about 50 million Americans live with chronic pain, the No. 1 cause of adult disability in the United States, JCAHO says, adding that chronic pain accounts for about $100 billion in lost productivity and is the major cause of worker absenteeism.

Dr. Lynn Webster, president of the Utah Academy of Pain Medicine (a local chapter of the American Academy), who also directs Lifetree Clinical Research and Pain Clinic, said the numbers are probably higher. About half of us will experience chronic pain at some point, he said. And he warns that the pain itself can become a debilitating disease if it’s not controlled or people don’t learn to cope with it. “As it exists over time, it changes the central nervous system in ways that contribute to the problem.”

Meanwhile, many of the medications used for chronic pain such as Vioxx have either been pulled from the shelves or warnings issued about potential complications and side effects, some as serious as increased risk of heart attack.

Because chronic pain can emanate from or be felt in so many different parts of the body, it’s hard to give a simple definition. “Chronic pain persists,” according to a National Institute of Neurological Disorders and Stroke description. “Pain signals keep firing in the nervous system for weeks, months, even years. There may have been an initial mishap — sprained back, serious infection, or there may be an ongoing cause of pain — arthritis, cancer or ear infection, but some people suffer chronic pain in the absence of any past injury or evidence of body damage.

Many chronic pain conditions affect older adults. Common chronic pain complaints include headache, low back pain, cancer pain, arthritis pain, neurogenic pain (pain resulting from damage to the peripheral nerves or to the central nervous system itself) and psychogenic pain (pain not due to past disease or injury or any visible sign of damage).”

The goal of treatment, Webster said, is to “allow people to function at the highest possible level and maximize quality of life.”
Treatment options vary. The National Institutes of Health lists medications, acupuncture, local electrical stimulation and brain stimulation, as well as surgery, as treatments. It also notes that some physicians give a placebo that may, in some cases, lessen or eliminate pain. Psychotherapy, relaxation and medication therapies, biofeedback and behavior modification are used to treat chronic pain. For many patients, it’s a try-everything buffet.

The use of placebo as a successful treatment doesn’t mean the pain is imaginary, the experts say. It simply underscores the fact that feelings like hope or despair can have a direct impact on pain.

The key to chronic pain, said Dr. Jason Theodosakis, author of the bestseller “The Arthritis Cure,” is getting a proper diagnosis. “Too often, we treat symptoms and actually treat the wrong disease,” he said in a phone interview with the Morning News. “Say there’s a middle-aged woman with hip pain. We think osteoarthritis when it’s actually bursitis or tendinitis and requires a totally different treatment.”

You should also ask how it happened, he said. “Maybe you can’t find a reason, but it helps to look, and you might uncover a secondary cause. I might have parathyroid problems that broke down the cartilage. Don’t just treat the symptoms.”

Daren Brooks, founder and president of The Bridge Health Recovery Center in Rockville, Utah, adds another twist to the sometimes- complicated search for diagnosis. “One thing it’s sometimes hard to get your arms around is that pain is interpreted in the brain, whether it’s a broken back or depression or a failed relationship. The body sometimes will pick and choose spots and yell in those particular spots.”

That may be one reason, he said, that doctors can’t always find a clear diagnosis when they look at an X-ray or MRI scan. “I’ve seen people get rid of lower back pain when they’ve forgiven their father.” But the father doesn’t show up on the MRI.

Most experts agree that medications ease symptoms but do not by themselves offer a cure for most chronic pain. That takes different steps and a willingness to try different things, say Webster, Brooks and Theodosakis.

The most common underlying condition for chronic pain is arthritis in some form, while lower back pain accounts for the most pain-related visits to the doctor. (The two overlap; lower back pain may be caused by degeneration in the spine.) There are more than 100 different types of arthritis and related conditions, affecting 70 million Americans. And that’s just arthritis.

Some patients get immense relief from prescriptions, while others don’t get much, said Webster.

“Unfortunately, there’s a lot of devastating pain problems for which we have only minimal ability to provide relief,” said Webster. That’s when pain experts look beyond traditional medicine to help patients.
That’s why the Bridge center uses not only western medicine, but a broad mix that includes meditation, yoga, acupuncture, nutrition and more in an 18-day in-patient pain management treatment course, said spokesman Jay Snyder.

“The more you do, the more you understand you can do. A great portion of healing is understanding that the pain may not go away, but you can do everything you have control over in tolerating it and building a life with or without that pain. Most people (with chronic pain) believe they are so limited that their scope of life becomes almost nonhopeful,” he said.

Openness to new things is the backbone of the self-help classes that the Arthritis Foundation runs, adapted from a program developed at Stanford University to help patients manage many types of chronic illness. Participants learn to develop their own exercise program, manage fatigue and stress better, know about medications and nutrition and also find ways to deal with the anger, fear, frustration and depression that may come with chronic pain. Such education can reduce arthritis symptoms by as much as 30 percent, said Victoria Saley, health education coordinator for the foundation’s Utah/Idaho chapter.

To the list of what’s valuable, arthritis expert Theodosakis adds nutritional supplements, carefully selected for quality, such as chondroitin and glucosamine, to not only ease arthritis inflammation and pain, but to improve the joints themselves. Many of them, he said, are safer than the popular anti-inflammatory medications typically used. He also likes ASU, a supplement that is made of avocado or soy oil and is used as a drug in France.

But he warns that “too often people emphasize treatment that may not be ready for prime time. We need to focus on what we know works,” including remedies proven in controlled studies in other countries. “Ninety percent of the products, I wouldn’t give to my dog. But you don’t want to throw the baby out with the bath water.

Supplements can be made in facilities that manufacture over-the- counter drugs and each batch tested.” In all cases, proper doses and concentrations must be used to be effective, and all instructions followed.

Exercise is immensely helpful with nearly all chronic pain, although many patients resist at first because it may hurt to move. But the more someone does — as long as it’s done correctly to avoid worsening the condition — the better the body responds and the more it can do. “We try to achieve as much as possible,” Webster said, noting that for some patients that’s building up to walking three miles a day and for another “huge success” might be the ability to sit at the dinner table with the family.

Every movement has a proper form to it, Theodosakis said, and improper form leads to cartilage damage and pain. Patients may need a “prescription for exercise, a trainer, exercise physiologist, physical therapist, a chiropractor sometimes, training about motion so biomechanics improve.”

Proper diet contributes not only essential vitamins and minerals to the body but helps control weight, a factor in many painful conditions. Obese people, for instance, get more finger arthritis than lean people. They are more prone to diabetes and the risk of painful neuropathy. The list goes on.

Nearly anyone with chronic pain can get at least some relief using multiple approaches, Webster said. “We may need to coordinate the physical, medicinal and mental element in treating the more severe problems.” Doctors may prescribe physical therapy or an exercise program such as low-impact aquatic therapy, which Gardner loves. “Some patients need help from a behavioral psychologist,” not because they have a mental illness but because “there’s a tremendous impact on all aspects of life, and they need to learn how to deal with that and keep it in perspective so psychological pain doesn’t drown us.”

Through it all, patients must recognize that symptoms and disease process may not match. With arthritis and the popular Cox-2 drugs like Vioxx, for instance, it stops the pain, but the cartilage degeneration continues, Theodosakis said. And the reverse is true. You can help the cartilage and still have pain. That happens sometimes with glucosamine, where “you may not have significant pain relief but X-rays show the joint is significantly, statistically better.”

Insurance coverage is another issue for chronic pain, Webster and Brooks said. If an X-ray doesn’t show a clear-cut source of pain, it may be “placed in a category as more of a behavioral issue and dismissed or at least lessened,” said Webster. Insurance may not cover some of the complementary treatments.

“There is an undertreatment of pain. There are usually treatment options if people are persistent. At the same time, not all treatments are successful, and there’s risk to all procedures. And over-the-counter remedies can be dangerous or potentially harmful,” Webster said.

Source: Deseret News (Salt Lake City)

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