Woman’s attitude, treatment tame painful disease

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Woman’s attitude, treatment tame painful disease

Web Posted: 01/29/2006 12:00 AM CST

Melissa Fletcher Stoeltje
San Antonio Express-News

It all started with a simple case of tendinitis.

Thirteen years ago Jan Wells, then 35, was a computer programmer in Austin working long, hard hours. One day her wrist started hurting. The pain lingered and grew so she went to see her regular doctor, who referred her to an orthopedist. By then her entire hand was in pain.

“It was like there was burning acid on my hand all the time,” she says. “It hurt for things to touch it; even terry cloth was murder. The ridges on coffee mug handles were like knives cutting into my fingers. My hand started to cramp; I had to sleep at night with it under a pillow. I couldn’t open door knobs.”

The orthopedist listened to her symptoms and made a quick diagnosis: RSD, or Reflex Sympathetic Dystrophy.

The hallmark of the disease is puzzling, excruciating pain that arises after a usually minor injury, often of the extremities, or sometimes after no injury at all. The central nervous system goes haywire and nerves misfire, sending constant pain signals to the brain. The pain endures and magnifies long after the initial injury has healed. It can spread to other areas in the body.

Wells was extremely lucky: Many patients with RSD, also known as Complex Regional Pain Syndrome, go undiagnosed or misdiagnosed for long periods of time. RSD doesn’t show up on X-rays or MRIs. Until recently, patients were often told that the pain was “all in their head.” Many sufferers contemplate — and some even commit — suicide.

RSD is classified as a rare disorder — meaning fewer than 200,000 Americans are afflicted with it — although RSD advocates say the true number is likely in the millions. It affects more women than men.

“It is a devastating disease. People lose jobs, friends, houses, marriages,” says Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association.

Besides pain, symptoms can include swelling, skin coloration changes, variations in temperature, sweating and movement disorders.

Wells’ orthopedist referred her to a pain clinic in Austin, but instead of getting better, things got worse

She underwent a series of 13 nerve blocks, in which analgesic medicine was injected directly into the nerves affecting the injured hand. The shots totally incapacitated Wells and she could no longer work. The blocks helped some, but the relief was short-lived.

Toward the end of the nerve block series, the doctors also put Wells on pain medication, which left her dazed and drowsy. In addition, they prescribed an antidepressant, which has been shown to reduce pain.

Formerly an outgoing, free-spirited woman who was heavily involved in community causes, including serving as director of a women’s center in San Marcos, Wells took to her bed. The world began to close in around her. Like many of those who suffer from chronic pain, she sunk into depression, despite the medication.

The pain only got worse.

“If my hand brushed against something, it was like tearing the hide off my skin,” she says.

Next the doctors at the clinic tried an IV drip of an analgesic cocktail, administered at a hospital over several days. Wells’ pain disappeared, but once the medicine wore off it returned with a vengeance.

So doctors tried a different type of block, but again it was ineffective. Then they decided to perform a sympathectomy, which involved cutting the sympathetic nerve affecting her upper right side.

The surgery didn’t help. In fact, it caused the RSD to spread up her right arm.

At this point, Wells was taking 13 pills a day. In the depths of her despair, she took to banging her head against a wall in effort to distract herself from the pain. She couldn’t sleep.

“Even the air across my skin was excruciating,” she says. “Bed sheets hurt. It hurt to wear clothes. I took to shopping at thrift stores and garage sales because the material was softer.”

Doctors at the pain clinic wanted to try a spinal cord stimulator — an implanted device that helps some patients — but Wells said no, no longer trusting them.

Still, her innate gung-ho personality wouldn’t let her succumb to total resignation; Wells remained determined to crawl out from under RSD. At this point she was also facing financial hardship, having no job and no money. With no place else to turn, she accepted an offer of marriage from a friend of a friend and moved to San Antonio.

It was around this time that she came across an article in Texas Monthly magazine that sang the praises of pain clinics at teaching hospitals, saying they were the locus of cutting-edge science. In 1994, at the end of her rope, she walked in to the pain clinic at University Hospital (University Center for Pain Medicine) and begged for an appointment.

There, Dr. Somayaji Ramamurthy put Wells on the road to her liberation.

Ramamurthy is a genial, sober man who did his medical training in India. A pioneer pain specialist who opened the first pain clinic in South Texas, he has trained many U.S. military doctors in the treatment of pain

The mantra he gives his RSD patients is this: Never stop moving. Many patients show up at his door step with the affected limbs essentially frozen. Pain leads to immobilization, which leads to more pain.

“When you move the limb, you reduce the sensitivity, make more blood flow into it and you increase the sensation coming along the larger (nerve) fibers,” he says. This sort of good “input” helps decrease the painful signals, cutting them off at the gate. At his clinic, patients work not only on mobilizing the affected limbs but also on “desensitizing” the area with greater and greater external stimulation — first with feathers, then with terry cloth, then with warm wax.

Movement, he says, not only flexes and stretches tight muscles and joints, it releases chemicals in the brain that fight depression. With less depression, patients move more, which further reduces their pain.

Ramamurthy, who treats about 200 RSD patients a year, says pain patients can get into a vicious cycle.

“Everything becomes contingent upon the pain,” he says. “People let it start controlling their lives. They cannot work, they cannot participate in life or go to the movies or have sex. Pain gets incorporated into everything.”

For this reason, he tells his patients not to discuss their pain with anyone, not even family. The goal is to take the brain’s focus off the negative.

In addition to experimenting with her medication, Ramamurthy put Wells on a comprehensive physical therapy program, getting her to move her arm, which had thrown her entire body out of whack, causing secondary pain.

He also worked on relieving pain in her toe. After she stubbed it, RSD has set in there, too.

Wells discovered to her shock that she was 5 1/2 months pregnant. She had believed her periods stopped because of all the medication she was taking. She contemplated terminating the pregnancy, not only out of fear that the medication had damaged the fetus but because the trauma of childbirth can cause RSD to spread.

But after some agonizing, she decided to continue the pregnancy and went off all her medications, except the antidepressant.

Her son, Kristopher, was born prematurely but otherwise fine and is now 10. And, miraculously, the RSD didn’t spread.

Though she went back to her physical therapy regimen and pills, Wells remained in considerable pain. She was unable to hold her son or interact with him much on a tactile level. Then, when Kristopher was 2, a medical fellow at the clinic brought up the subject of a spinal cord stimulator again. Ramamurthy had also suggested the device earlier but Wells was still too terrified of surgery to consider it. Finally, she was open to the idea.

The device involves implanted electrodes in the spinal cord area that transmit signals producing a tingling sensation in the affected area. This pleasant sensation “overrides” the pain signals, much in the way exercise does, and thus cancels them out or greatly reduces them in many patients. Another device containing the battery is implanted in the hip region. After a trial run, a stimulator was implanted in Wells. Her transformation was remarkable.

“The person you see here today is not the person I was before,” she says calmly. “It was like a door was opened on a closet and I was able to step back into life.”

But it took more than the stimulator to give her this new lease on life. Wells also underwent a profound mental readjustment which, ironically, was spurred by her old nemesis: pain. One day she and Kristopher were tickling on the couch when his head hit her nose, breaking it. For three days Wells was immobilized on a recliner, focusing only on her breathing. It was during this time she had an epiphany.

“I didn’t give into the RSD, but I decided to quit fighting it,” she says. “I quit letting it ride on the top of my head and my shoulders and decided to put it on my hip, where its been ever since. Every single day I had been pounding against a wall, and all of a sudden I decided to just walk around it. I decided to just move on. Today my attitude is this: relax, float, chill out.”

Wells no longer take medications. While some days are better than others, she is mostly back to her old active self, substitute teaching at her son’s school and working as an advocate for her semirural neighborhood on the city’s far Northwest Side. She also takes part in a community dance troupe with her son, who has grown into a creative, gifted boy, she says. She does yoga regularly, doing slow, careful movements at a gym and meditates “every second of the day.” She stays focused on keeping her body in perfect balance and posture.

Now 48, she still has some pain, especially in her toe, but she no longer lets it get her down. The stimulator is crucial; once, when her battery went out, she found herself thrust back into “the pit” of RSD. But with day surgery the battery was replaced and Wells was back on track.

“Pain is not the ruler of my life anymore,” she says. “It’s simply a companion.”


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