Journey into the 'burning hell' of RSD

0 Comments | Oakland Tribune, Apr 1, 2006 | by Barry Caine, STAFF WRITER

LAURA SORAVILLA walks gingerly up the stairs to the second-floor bedroom she and her husband Andy converted to a studio apartment.

The room is equipped with a voice-activated phone system, a small refrigerator, a TV and DVD player, furniture, pillows and a couple of remotes.

"I used to be able to do my remotes with my toes, but now my feet are out of commission," Soravilla says.

A resident of San Ramon, the former dancer and legal secretary suffers from Reflex Sympathetic Dystrophy (RSD), a debilitating nerve-related syndrome that keeps people in constant pain.

Unless it is treated early enough, there is no cure for RSD, which was first identified during the Civil War but still befuddles the medical community.

Also known as Complex Regional Pain Syndrome Type 2 (CRPS2), the syndrome -- it is not a disease -- is difficult to diagnose because the symptoms vary, and the pain is difficult todescribe.

Nobody knows for certain how many have it, says Dr. Aimee Chagnon, a Mill Valley neurologist, but she estimates the number in America is "probably in the range of several hundred thousand."

RSD strikes more women than men. It can hit anyone from young children to the elderly. The typical patient is a female in her 20s to 40s.

Soravilla, 58, has had it in her hands for 10 years. "Now it's spreading to my legs," she says.

Her eyes well up, but the tears don't fall.

"You learn to live with what you have and make the most of it," she says.

At its worst, the pain is "burning hell," she says. "It's horrible. You can't concentrate. You can't do anything. You have to go into a dark room because even light affects you."

Others have described the pain as feeling like drills going through their bones; or as if their hand is being dipped in a vat of acid and they can't pull it out.

Some have the sensation of bugs crawling beneath their skin. Often, there's a constant deep ache, or the sensation of a lance going through a body part.

When the pain is that intense, "you can't have anybody touch you," Soravilla says. "You take your meds and wait till it goes down. It's a constant up and down, up and down."

No one knows exactly what triggers RSD, but often it strikes someone who has suffered a minor injury such as a twisted ankle or fall. Car accidents, minor surgeries and bumped limbs can also lead to RSD.

If you didn't know she had RSD you would think Soravilla looks fine. That's a common problem for those with the syndrome. Other people don't believe there's anything wrong with them. So they are often treated as malingerers; as if their problem is imagined.

To ease her discomfort, Soravilla dresses in soft, loose-fitting clothes, such as the velour sweatsuit she has on today. She and her husband are on their way to an RSD support group meeting at Body Lines Day Spa in San Ramon.

Like Soravilla, other attendees wear sweats. One wears thick gloves. A couple rest their feet on pillows. All wear tennis shoes or other comfortable footwear.

It's like a room filled with delicate crystal. Most move carefully.

"I used to be a people person," says Franci, one of many who drove to the meeting from Castro Valley. Everyone but Soravilla, who started the group with another member, asked that their last names not be used.

"In my head, if somebody hits this leg I will die," Franci says, referring to her right leg. "I can't do anything for any length of time. My fear is my leg won't work if someone stops (his car) in front of me."

Her RSD started after a botched hysterectomy. Before that she was a successful businesswoman. Since then, she has lost her house, her savings, "everything," she says. "I lost my marriage, my kids, because they thought I was crazy. They put me in a psych ward."

Misdiagnoses are not unusual, given the unfamiliarity many medical people have with RSD and pain treatment in

general.

Pain is the most common reason people give for seeking medical care in this country. Costs total $120 billion. Yet it is not focused on in the education of U.S. doctors, Chagnon says.

Most in the support group have been treated with some combination of pain medicine, antidepressants, antipsychotics, antiseizure medication, muscle relaxants, compounded topicals for skin, oral anesthetics and injectable anti-inflammatories. Some have tried biofeedback and meditation.

Recently, Franci went to an accupuncturist. It helped. "I can climb stairs, which I hadn't been able to do for 51/2 years," she says.

She and other members exchange information and give updates on what's working and what's not with their bodies, families, doctors, psychologists, psychiatrists and bureaucracies, such as the Workman's Compensation system.

Emily, who co-founded the group with Franci, says antipsychotics have helped her, and her pain is in remission. Her RSD seemed to start after her arm got sore from her dog pulling too hard on its leash.

Donna feels pain from RSD in her face and mouth. It is so severe that she can't go outside without wearing a bubble-like plastic mask.

Dave's began after he started using a computer. He is the one wearing gloves. "When I walk through a room it feels like a sunburn," he says.