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RSD Feature Article: The Misunderstood Pain Disease

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by Fran Worrell Contributing Editor of Your Family’s health.

Keith Orsini, of South Portland, ME, was hit by a baseball when he was 14 years old. The blow shattered his nose and cheekbone. The burning pain was immediate, he says, particularly in his eyes. “It was like hot burning coals.” His vision soon worsened, and light began to bother him. More ominous, however, were the variety of other seemingly unrelated physical ailments that began to plague him, such as memory loss, skin mottling and cold extremities, which continued throughout his teens and early 20s. He went to a variety of doctors, but no one could figure out what was wrong.

Then, at age 25, Orsini broke his back and underwent spinal fusion surgery. Soon thereafter, his symptoms worsened, and the pain progressed to more parts of his body. Still, physicians were baffled. “I went to specialists and clinics all over the country, only to be told by more than one doctor, ‘It’s all in your head,'” he says.

Louise Plaster, of Greenville, SC, was 35 years old when she hit her knee on a metal bracket at work. Almost immediately, her leg became bruised and swollen. Unlike other relatively minor injuries, however, this one just didn’t heal.

She went to one doctor. Then to another. And another. No one knew what was wrong. In the meantime, her symptoms worsened. She battled fatigue, swelling, stiffness and chronic pain. Her skin became mottled and sensitive to even the slightest touch. Until her injury, Plaster had worked 10-to-12-hour days. She was physically fit, too, walking three miles a day. Now, she could hardly get out of bed.

Linda Calhoun, of Philadelphia, had a career she enjoyed, often working overtime, and she exercised regularly for years. All that came to an abrupt end after she hit her knee on a trashcan at age 41. The following day, she says, she couldn’t walk. “It felt like nails sticking in me.” Her legs turned purple and were ice cold to the touch. Yet, at the same time, she experienced burning sensations, especially at night. Her skin became so sensitive, “even the bed sheets felt like sandpaper.”

She, too, made the rounds of doctors, seeing a variety of specialists more than a dozen in all before being accurately diagnosed. One doctor suggested fibromyalgia; another, multiple sclerosis. She was told by a few of them, as were Orsini and Plaster, that the problem was psychological rather than physical. But, it wasn’t.

Diagnosis Is Difficult

Eventually, Orsini, Plaster and Calhoun were diagnosed with Reflex Sympathetic Dystrophy, or RSD, a chronic and incurable neurological disorder in which the autonomic nervous system the system that transfers signals from the central nervous system to various organs throughout the body malfunctions, causing nerves to misfire and send constant pain signals to the brain. RSD typically develops in response to physical trauma a fall, fracture, infection, surgery or repetitive motion injury like carpal tunnel syndrome. Strangely, it often develops after a seemingly minor injury such as a stubbed toe or sprained ankle. Although there are many symptoms, pain disproportionate to the precipitating injury is common in all cases. In some patients, the condition is mild; in others it is severe and debilitating. In a few cases, no precipitating cause can be found.

Although it’s not known exactly how many people have RSD worldwide, it is estimated that as many as 8 million suffer from the disease in the United States alone, and that it complicates as many as 5% of all injuries. Typical age of onset is the mid-30s, yet children and the elderly also develop the disorder. It affects women more often than men.

What causes RSD? No one knows for sure, although current research suggests that an excessive immune response, possibly due to latent infection, is the culprit, at least in some cases, says Dr. Robert G. Schwartz, a Greenville, SC, physical medicine and rehabilitation specialist and a pioneer in RSD research and treatment. Other predisposing factors may include any condition that inhibits oxygen flow, such as smoking, diabetes or circulatory disease. “Whatever the cause, it is definitely not due to a psychological disorder or symptom magnification.”

The most common symptom of RSD is chronic pain, which patients frequently describe as burning or stinging. Patients also suffer from extreme skin sensitivity, so that even clothing is unbearable. Other symptoms include swelling, profuse sweating, nail changes and color and temperature abnormalities at the injury site. Patients may also experience muscle spasms, tremors, weakness, fatigue, skin rashes, frequent infections, fever, headaches and insomnia. In some people, the disease is confined to the affected area, but in as many as 70 percent of patients it spreads to adjacent parts of the body or crosses over to affect the same area of the opposite limb. RSD can also spread to unrelated sites, especially following another injury.

Diagnosis is difficult, says Schwartz, because many symptoms of RSD are similar to those of other more common illnesses such as chronic pain, rheumatic disease, multiple sclerosis and fibromyalgia. What’s more, he notes, many physicians aren’t familiar with the disorder, which leads to a delay in proper diagnosis and treatment.

Prompt Treatment Critical

Yet prompt treatment is critical within the first three months before the course of the disease becomes irreversible, says Schwartz. “Early intervention can mean the difference between putting the disease in remission and coping with a lifetime of pain and disability.”

Sadly, by the time Orsini’s problem was diagnosed, he had been living with RSD for almost 20 years. He now experiences constant pain throughout his body. In fact, Orsini is one of the few RSD sufferers whose disease is systemic. It has lowered his immune system, making him more susceptible to colds and the flu, and he is afflicted with a variety of physical and emotional symptoms ranging from decreased mobility to memory loss.

Plaster and Calhoun are also victims of delayed diagnoses. They, too, experience symptoms ranging from severe pain and impaired movement to tissue damage and memory problems.

Schwartz’s advice is simple: If you experience pain, swelling or bruising disproportionate to an injury, don’t wait for it to go away. “Seek help from a doctor who understands pain diseases.” Physiatrists, physicians who specialize in physical medicine and rehabilitation, focus on treating patients with acute and chronic pain.

When you visit your doctor, be prepared, he advises. “Bring a list of symptoms and questions with you.” It may help to keep a journal of symptoms what bothers you and when. Also, when seeing a new doctor, bring a copy of your medical history, test results and x-rays as well as a list of injuries and surgeries. “RSD is like a puzzle. Your doctor needs to know all the factors that may have contributed to it.”

It may help to bring a friend or family member to the appointment, says Schwartz. “If you’re in a lot of pain, you won’t process everything the doctor tells you.” Another idea: Take notes or bring a tape recorder.

Although some doctors employ a variety of medical tests to identify RSD, a diagnosis often can be made based on clinical observation alone, says Schwartz. Primary clues are pain disproportionate to the injury and nerve dysfunction in the affected area. Also, he notes, neuropathic pain is different from everyday aches and pains. “It has a tingling or burning quality and, often, sudden jolts of shooting pain.” Stimulation with mild cold or light touch also may cause discomfort.

What’s more, he says, a physician familiar with RSD will observe the patient’s physical symptoms such as mottled skin, swelling, movement disorders and changes in the hair and nails.

Tips For Coping With RSD

Although there is no cure for RSD, there are many ways to manage its symptoms. Typical treatment incorporates a variety of therapies such as electrical nerve stimulation, anesthetic blocks, injection therapy and physical therapy. Drug therapy often includes anti-inflammatory drugs, muscle relaxants and antidepressants.

Some RSD patients find relief in alternative medicine such as acupuncture, or in relaxation therapy and hypnosis. Psychological counseling can also help patients cope with the frustration and depression that often accompany the disease.

Following are more strategies for managing RSD:

Be a partner with your physician. “Visit your doctor regularly. The doctor-patient relationship is critical, because the disease is so individualized,” says Plaster.

Eat properly. A healthy diet is especially beneficial to people with RSD, notes Schwartz. Avoid coffee, processed foods, sugar and fried foods. Also, leave off foods containing nitrites, such as bacon, sausage and hot dogs. Eat lots of fresh fruits and vegetables, fish and poultry, and drink six to eight glasses of water a day. Some RSD patients also find nutritional supplements beneficial.

Become a volunteer. Doing something for other people helps you stop focusing on your own problems, say Plaster and Calhoun. They practice what they preach: Plaster is the director of the South Carolina RSD Association, and Calhoun runs an Internet support group called RSDRebels.

Keep moving. Stretching and walking on a treadmill are particularly good exercises, says Schwartz.

Take a time-out when you need it. “If you need a nap, take one,” advises Calhoun. “Don’t push yourself too hard.”

Don’t face it alone. Check out local support groups and the Internet for information. “You are not alone, and you are not crazy,” says Plaster, the director of the South Carolina Reflex Sympathetic Dystrophy Support Group (ww.scrsda.org).