Silent suffering no more

Chronic pain afflicts millions of people. In Worcester, sufferers have banded together to demand attention and adequate treatment for one such pain disorder, Reflexive Sympathetic Dystrophy Syndrome.

by Eric Johnson

Paula Daigle's alarm clock wakes her from a poor night's sleep. She's already jolted up four times this night because her sheets rubbed against her foot the wrong way, sending searing pain up her leg. Now she faces the real challenge: getting out of bed. Gently, she places her good foot on the floor. But when her other foot gingerly lands on the ground, it feels like stepping into a salt pit with an open wound. Hot pain shoots along her leg, and she's forced to rest. Next attempt, she is more prepared. Still it feels like a million knives being driven into her leg and foot.

Daigle knows the pain will be constant throughout the day. And this day looks like it will be one of her better ones.

On a bad day, Daigle could end up in a hospital emergency room where she will have to fight with doctors to get the treatment she needs. Daigle, along with several million other people, is afflicted with Reflexive Sympathetic Dystrophy Syndrome (RSDS). It is a chronic pain condition that, although first documented during the Civil War, is still misunderstood and relatively unknown.

Patients often find they are treated by ill-equipped emergency-room staffers, who occasionally dismiss the complaints, hinting that a RSDS sufferer is just another junkie looking for narcotics.

This lack of knowledge extends into primary care also. RSDS patients are typically misdiagnosed or dismissed as hypochondriacs or addicts. Even after being properly diagnosed, they have to wait to get adequate treatment due to the short supply of doctors trained to treat them. If patients are lucky enough to find a doctor, they still have to struggle to get medication. Because most pain medications are addictive, doctors are wary of writing long-term prescriptions.

Once getting treatment, RSDS patients must struggle to pay for it. Insurance companies have refused to fund care because there is little documented medical research on RSDS and its treatment. For example, Daigle has a device called the PGS 3000, which helps her manage her condition by using an electrical pulse to fatigue her muscles to the point where the pain diminishes. She describes it "like eating ice cream on a hot day." A PGS 3000 device costs $1600, a substantial outlay of money for a person with medical bills that are already high. Despite the fact that many other RSDS patients use it to make their lives better, Daigle had to fight her insurance company for a year before they would authorize payment.

Once out of bed, Daigle will go to work where, fortunately, her coworkers and managers are very supportive. Her PGS 3000 is portable, so while working she can plug it in and get a spell of relief. The pain will never go away though. It may lessen, but it is always there, as is the constant struggle with the very people Daigle pays to be her allies.

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Patients often find they are treated by ill-equipped emergency-room staffers, who occasionally dismiss the complaints, hinting that a RSDS sufferer is just another junkie looking for narcotics.

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Triggered by soft tissue injuries, RSDS causes the sympathetic nervous system to malfunction, resulting in chronic, burning pain that has been regarded as twice as potent as that suffered by cancer patients. However, unlike cancer, RSDS is never fatal nor can it be overcome. In addition, there is a host of symptoms that make RSDS hard to diagnose. Migraine headaches, fatigue, and increased anxiety are common indicators of many stress-related disorders but also RSDS. Other symptoms: cloudy vision, lack of coordination, and memory loss, all of which can also be related to stress or neurological disorders. RSDS sufferers also experience muscle atrophy and osteoporosis.

RSDS began being studied during the Civil War. Doctor Silas Mitchel, a Union army doctor, was the first physician to document a series of pain conditions in his patients. He coined the term cuasalgia, a condition related to RSDS that attacks only outer extremities. In October 1864, Mitchel and two of his colleagues, G.R. Moorehouse and W.W. Keen, published Gunshot Wounds and Other Injuries of Nerves, which is thought to be the first account of RSDS.

Unfortunately, not much more has been learned about the condition. The medical community is still unsure of what triggers it. And until the late 1940s and 1950s, when doctor John Bonica started working with chronic-pain patients, few advances in the treatment were made. While working in the army, Bonica realized that scant published information on the treatment of clinical pain, such as that suffered by RSDS patients, existed, and that physicians were not being trained to recognize or treat patients. Thus he pioneered an interdisciplinary strategy to treat the conditions. In 1953, he published The Management of Pain, now considered the bible on pain.

Current treatment methods stick to Bonica's concept of a team approach. RSDS patients, once diagnosed, are referred to a pain clinic where they will be treated by a team of doctors, including a neurologist, an anesthesiologist, their primary-care physician, and other experts. Treatment involves a host of techniques, including pain medication, physical therapy, and a controlled diet. Severe cases call for more drastic measures. Some patients require surgically implanted morphine pumps or spinal stimulators to manage the pain. The worst cases can result in amputation of the affected limb. What form the treatment takes varies from person to person. The success of treatment also depends on the individual and the amount of time between the inception of the condition and treatment. If RSDS is diagnosed early, ideally within three months, it can be treated with a high rate of success, although there are no guarantees that it will not flare up again.

Unfortunately, quick diagnosis is rare.

According to Donald Stevens, a doctor at the UMass pain clinic, in Worcester, "Getting treatment depends on your doctor." Because RSDS includes a spectrum of symptoms, it can be hard to get a handle on it.

"If the doctor is not used to patients with nerve pain, they can think the patient is crazy. Patients with RSDS can look normal," Stevens says. "The physician must know what to look for. Unfortunately, many don't."

Worcester resident Mary LaBree spent six years after a fractured spine suffering from RSDS before being properly diagnosed. Her condition has progressed to the point where she is rarely free of pain and is hospitalized two to three times a year, spending days confined to her bed.

Even after being diagnosed, receiving treatment can be difficult. There are two pain clinics in Worcester: one at UMass Medical Center and one at St. Vincent's. Getting into these facilities can be difficult because they have limited hours and a waiting list.

"We treat RSDS patients as emergencies, Stevens says of UMass's policy. "After receiving a referral we get them in within two weeks. Routine patients can wait for up to two months." Paula Daigle has had to wait for up to a week to be seen for flare ups of her RSDS and has often had to resort to emergency-room treatment.

"Because going into an ER at night complaining of pain is a typical drug-seeking behavior, many ER doctors are skeptical," Stevens says. "Besides, flare ups are difficult to treat even for a specialist. Many treatments, such as nerve blocks, require that patients don't eat for eight hours before the procedure or other preparations."

Another factor in getting proper treatment in an ER is the doctors' lack of knowledge about RSDS.

"It is very frustrating when you have to educate doctors in the emergency room so they don't inadvertently make the pain worse," Daigle says. "Any injury, even an IV puncture, can increase the pain or make it move to a new location."

What makes this lack of medical knowledge about RSDS amazing is that it is not a rare condition. According to Stevens, 5 percent of all injuries that require casts lead to some level of RSDS. Fortunately for many, the physical therapy received once the cast is removed reverses the condition. Sadly, an estimated 20 million patients continue to suffer. There are 500 children in Massachusetts alone currently suffering from RSDS. The youngest child is 5 years old. These children experience debilitating pain coupled with the ridicule their peers pile on them because they are unable to play sandlot football or ride their bikes around the block.

To combat the ignorance of RSDS and lend support to each other, RSDS patients across the globe have formed support groups. In Worcester, Mary LaBree, who was an advertising executive before her RSDS progressed to the point where she could no longer work, formed the RSDS New England Coalition in 1997. With the help of Friendly House, she advocates for patients' rights and tries to educate area doctors. She organized the coalition's RSDS support group and talks with patients on the phone to lend them support or to refer them to doctors, even lawyers. Over the summer, she helped a boy in Texas find a doctor to treat his conditions through her extensive network of doctors across the country. Currently, LaBree is working on scheduling a national conference on RSDS for October 2000.

One of the coalition's major efforts has been to gain political recognition. Members are pushing the state legislature to pass a Chronic Pain Bill that would protect doctors from litigation arising from the prescription of large doses of painkillers, which, as mentioned, they are often hesitant to prescribe because the drugs are addictive.

"Chronic pain patients are less likely to become addicted to pain medication because they are very aware of how to use it," LaBree contends.

The coalition is also pushing for legislature in Connecticut that would allow handicapped people to travel on restricted, highway "diamond" lanes, currently reserved for car pools and mass transit.

"When you suffer from a condition that is worsened by stress, such as RSDS, commuter traffic can cause a flare up," LaBree says. "You may not be able to make it to work."

Other political action includes the recognition by the state that July is RSDS awareness month and July 26 as RSDS awareness day by Worcester Mayor Raymond Mariano. RSDS groups are pushing for a national RSDS awareness month. Currently the New England coalition is organizing its ninth statewide proclamation of a RSDS day for next year.

Due to the work of RSDS groups and increasing awareness in the medical community, RSDS is becoming more visible. According to Stevens, there have been many advances made in the past 10 years. However, it is still difficult to get a timely diagnosis or treatment. Another factor hindering the treatment of RSDS is insurance companies, and the distribution of workers' compensation benefits.

Daigle had to haggle with her insurance provider for a year to get her PGS 3000.

"Unfortunately, because there have been no [research] papers written on it, it is hard to get insurance companies to approve it," says Jim Watson of Sports Medicine Products, which offers the device.

Despite the constant struggle with pain and treatment, Daigle manages to live her life.

"I refuse to let the disease beat me," Daigle says, "or the system."