Now the life in me trickles away,
days of grief have gripped me.
At night-time, sickness saps my bones,
I am gnawed by wounds that never sleep.
Phyllis Aavang lives in a small one-bedroom apartment over a chiropractor’s office in a far northwest suburb. The living room is sparsely furnished, but an array of houseplants gives it a homey look. On one wall is a picture of hot-air balloons in bright, rainbow colors; hanging from the ceiling is a large paper model of a balloon, also rainbow striped; and Aavang is wearing a sweatshirt decorated with a fleet of multicolored hot-air balloons. “I like bright colors,” she says. “I think you cheer people up when you have a lot of color around.”
Aavang, who’s 33 and has a bachelor’s degree in psychology, is single and unemployed. She spends a lot of time at home, and admits it’s a struggle to maintain even moderate cheerfulness. She has been in almost constant pain since 1984–pain so disabling and unremitting that on one occasion she attempted suicide. She is articulate and forthright in conversation, but the struggle to stay in control shows in her face and in her calm, deliberate voice.
The ache in her back is caused by nerve damage, the result of a spinal injury. The pain in her right foot and in both legs is entirely different: a burning, buzzing pain like a continuous electric shock, which keeps her awake at night and in such misery some days that she has to stay in bed. She finds it especially difficult to walk and has recently noticed increasing difficulty in straightening her leg.
“When you have this,” Aavang says, “pain rules your life. You’re not in charge, and you have to limit your expectations–maybe to just one project a day, like going to the store.” She smiles at how that must sound to a healthy person.
Last September a doctor at a pain clinic told her the source of the pain in her feet and legs was RSD–reflex sympathetic dystrophy–a scary-sounding term she was not familiar with. He recommended a series of nerve blocks: anesthetic injections into the affected areas or into a central nerve ganglion. Since then Aavang has had some 15 blocks. Several halted the pain for up to two days; most gave relief for only about six hours, and then it was “back to square one,” she says. She also had a catheter implanted in her back that allowed her to inject pain killer directly into the spinal area when her suffering was intense, but the catheter kept slipping out of place and reimplanting it required minor surgery. So for the time being she’s abandoned that procedure.
Aavang is surviving on oral pain medications, occasional physical therapy, regular psychological counseling, and monthly get-togethers with her RSD support groups. She is a coleader of two such groups, one in McHenry and the other at Lutheran General Hospital in Park Ridge. Says Aavang, “It seems to me the best way to deal with this pain is to help others deal with theirs.”
She has read a great deal about RSD, and now believes she had the ailment long before it was diagnosed. Though it reportedly affects some six million Americans, the medical profession knows little about it. Various medics have told her that she has “a low pain tolerance” or that she is “not as sick” as she thinks she is or that she’s just “one of those people who needs a lot of attention.” One doctor who’d treated her for several years told her finally not to call him anymore because he regarded her as a “noncompliant patient.” Noncompliant, says Aavang, meant she wasn’t getting better and he didn’t know what to do about it.
Many doctors have apparently never even heard of RSD. One day last November Aavang’s leg pain was so severe that she went to the emergency room at a local hospital. When she told the doctor she was under treatment for RSD, he asked her what it was. Then, she said, he began frantically paging through a medical dictionary in an effort to educate himself quickly.
Aavang has limited her long-term ambitions. “I realize I have to accept this,” she says. “That doesn’t mean lying down and giving up. It means coming to terms with what I have, and that helps relieve some of the inner turmoil.”
RSD is “an orphan disease,” says Dr. Patricia Cole, clinical psychologist at the Rush Pain Center of Rush-Presbyterian-St. Luke’s Medical Center in Chicago. “It’s often ignored or misdiagnosed or left untreated. People are sometimes told it’s all in their head, but it’s not all in their head. Not at all.” The problem, says Cole, is that pain is so subjective; you can’t see or measure it. But those who have experienced several varieties of pain testify that RSD is far worse than childbirth and many forms of cancer.
Today a significant debate is brewing in the medical community over RSD. The more traditional view is that it’s a mysterious neurological problem–that is, there’s something physically wrong in the nerves themselves or with the central nervous system–and that a great deal more research is needed to determine the cause. More recently, however, researchers have begun concentrating on “predisposing factors” for RSD: they contend that certain personality types are more likely to fall victim. Some, including Dr. Ronald Pawl, a leading Chicago-area pain specialist, have even insisted that RSD is a psychologically induced illness for which there is no organic cause. Such a stark view arouses the ire of organizations like the nine-year-old Reflex Sympathetic Dystrophy Syndrome Association, a national body with around 1,300 members that sponsors research and promotes the formation of RSD support groups. The psychological explanation also arouses the anger of longtime RSD sufferers, who regard such theories as a cop-out when what’s needed is scientific inquiry. A verdict is not expected anytime soon.
“I don’t think we really understand to what extent psychological factors affect this condition,” says Cole. “We do know there is a continuum between the body and the mind. We know, for example, that mental stress can depress the immune system or crank up the sympathetic nerve system.” But she and others who treat chronic pain at Rush carefully steer clear of either/or explanations. Meanwhile, they treat RSD as fundamentally a physiological illness of the nerves.
Ever since it was first identified, RSD has confounded the medical community. The generally acknowledged discoverer is Silas Weir Mitchell, a Civil War surgeon who reported on a peculiar condition he observed in some of his patients. In his 1864 book Wounds and Other Injuries of Nerves he wrote: “We met with a small number of men who were suffering from a pain they described as ‘burning’ or as ‘mustard red-hot’ or as ‘red-hot file rasping the skin.’ . . . Its favorite site is the foot or hand. . . . Its intensity varies from the most trivial burning to a state of torture which can hardly be credited, but which reacts on the whole economy, until the general health is seriously affected. The part itself is not alone subject to an intense burning sensation, but becomes exquisitely hyperesthetic [supersensitive], so that a touch or a tap of the finger increases the pain. Exposure to the air is avoided by the patient with a care which seems absurd. . . . As the pain increases . . . the temper changes and grows irritable, and the face becomes anxious, and has a look of weariness and suffering. The sleep is restless, and the constitutional condition . . . exasperates the hyperesthetic state so that the rattling of a newspaper, a breath of air, the step of another across the ward, the vibrations caused by a military band, or the shock of the feet in walking, gives rise to increase of pain.”
Since then the phenomenon has been observed and reported on by thousands of doctors, acquiring over the years a bewildering collection of names, including causalgia (Greek for “burning pain”), Sudeck’s atrophy, shoulder-hand syndrome, and the unpronounceable algoneurodystrophy. In recent decades “RSD” has been widely accepted, though scholarly arguments still flare up. Some specialists today insist the condition should be called “sympathetically maintained pain” (SMD), because that term is more true to possible psychological causes. Medical journals report regularly on the name debate, which is of course tied to the general disagreement about RSD.
RSD is thought to be caused by a malfunction of the sympathetic nervous system–that part of the nervous system that regulates the body’s involuntary (autonomic) actions. For example, the sympathetic system increases the heart rate, raises the blood pressure, and produces sweat when a person is exercising or agitated. It dilates the pupils to adjust to darkness and keeps the body breathing when one is asleep. When an injury occurs to a hand or foot, the sympathetic nerves at first constrict the blood vessels in the area to minimize bleeding; then as healing progresses the system dilates blood vessels to promote healing.
Usually RSD begins with a minor injury to one of the extremities–a sprained ankle or a bruised wrist. Occasionally the initiating injury happens to the elbow, the knee, the face, even (in one reported instance) the penis. After the initial pain has subsided and healing has apparently occurred, a burning pain sets in. The affected part remains inexplicably swollen, red at first and later a grayish blue as the temperature in the injured area fluctuates. Stiffness and excruciating sensitivity to touch or stimulation of any kind begin. Hair and nail growth in the affected area is exaggerated at first, then retarded later. Osteoporosis, a decrease in bone density, takes place, and irreversible atrophy of both skin and bone can occur. Eventually the hand, leg, or other body part may become useless. RSD has been diagnosed in children as young as 3 and in adults as old as 75, although it most often hits people in their 40s; it tends to strike women over men by a ratio of about four to one.
Experts distinguish three stages in the syndrome. The acute phase, lasting up to three months, is marked by exaggerated blood flow to the affected part, then by constricted flow as the sympathetic system follows some renegade law of its own. In stage two, which can last six months or more, the pain increases and the swelling becomes firm and fixed, often spreading up or down the extremity. The skin is taut, cool, and very sensitive. In stage three, which may last two years or longer, the pain decreases slightly but the wasting of bone and skin continues apace, as the ailing body part gets little or no exercise. Strangely, the affliction sometimes travels, so that a previously unaffected foot begins to mimic the symptoms of the RSD-affected extremity.
“The system just goes haywire,” says Dr. Biba M. Sihota, an anesthesiologist and former director of the Pain Control Clinic at the University of Illinois Hospital in Chicago. “It seems to recruit other parts of the nervous system, and there’s no predicting how it will move.” The human body, she notes, contains an extensive network of interconnected nerves, like a complex system of railroad tracks: a malfunction in one area can move through the system and pop up somewhere else. Sihota, who has many RSD patients in her current private practice, stresses the importance of identifying and treating the syndrome early, before it becomes “centralized.”
That view is shared by most pain specialists. “Early diagnosis and appropriate treatment is the only way to control this thing,” says Dr. Mark Sloan, director of Pain Management Consultants in Vernon Hills. “Too often we see people when the problem is far advanced. But when I see someone in stage one I get orgasmic! There’s hope, there’s the real possibility of cure–or at least 90 percent recovery.”
The appropriate treatment, as understood by most pain specialists, is interventional blocks. One kind, the Bier block, involves anesthetic injection directly into the painful area. Another, the ganglion block, shoots an anesthetic into one of the body’s central relay stations in the neck or back, the ganglia through which pain messages are transmitted: for hands, arms, and upper body, the target is the stellate ganglion in the neck; for feet, legs, and lower body, it’s the lumbar ganglion in the lower back. A third treatment, the epidural block, numbs nerves in the spinal area. And in some very serious cases, the accepted treatment is a sympathectomy, an irreversible procedure that surgically or chemically destroys a portion of the nerve-carrying ganglion.
Sihota and Sloan admit that no one treatment is universally successful, and that many prove disappointing. Even sympathectomy often fails to derail the pain or halt the atrophy of a hand or foot. One study claimed “some improvement” among 65 percent of patients with lower-extremity RSD through lumbar blocks, but only if treatment was received within 12 months of the onset of pain. Those diagnosed after years of pain had decidedly poorer rates of improvement, and instances of total recovery were rare.
Some patients have even opted for amputation of the body part, only to discover that so-called phantom pain continues undiminished in the region of the missing arm or leg. In the absence of any guarantees on more aggressive treatments, Sloan approves a host of supportive procedures: individual counseling, family counseling, behavior modification, meditation, acupuncture, hypnosis, psychoanalysis, vitamin supplements–whatever helps the patient cope. But always, he insists, even moderate control of the condition requires physical therapy, to keep the extremity at least minimally operational.
Sloan decries the small amount of money going into RSD research. And what research there is hasn’t made much impact, he says. “This is so difficult,” he adds, “because we have no models to work with. If it were a virus, we could study it. If it were a heart condition, we could evaluate the contributing factors.” All that researchers know, he says, is that RSD is not infectious or malignant and that it doesn’t seem to be a metabolic or immunological disorder. “In medical jargon we call RSD ideopathic,” he says, “and that really means us doctors are idiots because we haven’t found a cause.”
RSD sufferers often remember the date, even the exact hour, when their lives were changed. More often than not the incident seemed trivial at the time, just a temporary inconvenience. For Dolores (Dee) Connors, the day was December 31, 1988. As manager of the bars at the Pheasant Run resort in Saint Charles, she was hustling around the place making sure bartenders and waitresses were ready and adequate spirits were on hand for New Year’s Eve. With Jay Leno as the featured entertainer, the crowd was going to be huge. As she sped through an unlit hall, Connors struck her right foot against the blade of a forklift. “I thought at first I’d broke my foot or cut it,” she says. “It hurt that bad.” But X rays revealed no severe damage; there was only a bruise, which left the foot painful, swollen, and black-and-blue up to the ankle for almost six weeks. Gradually the colors faded, but the pain–“like somebody holding a match to my foot,” she says–remained. Now, more than four years later, the condition is no better.
An effervescent, outgoing woman, Connors appears younger than her 51 years. She’s quick with a self-deprecating joke and laughs easily. But when she rises and moves across the room, an eerie metamorphosis takes place. Hobbling on her cane, she moves slowly and with an extreme limp, as if she’s suddenly aged 35 years. “You could say this has changed my life completely,” she says. “I was always active, into everything–skiing, roller-skating, running, dancing. Would you believe I used to be an aerobics instructor?”
Six months after the accident, Connors’s orthopedist sent her to a pain specialist near her home in Elgin. The specialist looked at her leg, which was pale and painful to the touch, and pronounced that she had RSD. She has since gotten a series of interventional blocks in the ganglion in her back, and she had physical therapy twice a week for three years. Relief was temporary at best. She then had a chemical sympathectomy to destroy part of the lumbar ganglion. Still no relief; in fact, she developed a sciatic nerve problem and a blood clot in the leg. At one point she tried to return to her job, only to find walking unbearably painful. She hasn’t worked now for over three years.
Connors says she maintains an optimistic outlook through techniques she learned in a Silva Mind Control course some 20 years ago. “I’ve taught myself to stay calm and easygoing,” she says. “I don’t panic.” She also gives enormous credit to her husband of 29 years, Toby. “He’s very patient,” she explains, “even when I’m rolling around the bed like a thrashing machine, trying to sleep. Since I can’t sit in a car for long, he got us a van. And he’ll stop whenever I want so I can change positions.”
Dee Connors admits there are times when even mind control and Toby’s ministrations don’t work. While at a McDonald’s recently with her grandchildren, she found she couldn’t even carry her tray to the table. “That depressed me so bad I just cried,” she says. She is no longer active in her local church because she doesn’t want old friends to see how disabled she’s become. “I was always the care giver, the one in charge,” she says. “Not anymore.”
The pain is moving up her leg, so Connors is considering a long-term inpatient program: one to three months of hospitalization. “They try a combination of things,” she notes, “mostly things I’ve already tried. But you can’t give up, you have to keep hoping.”
The day of reckoning for Thomas Burke was December 7, 1988. A sturdy, red-faced Irishman raised on Chicago’s west side, Burke says he hadn’t missed a day as a heavy-equipment operator in 38 years. “Always had good health,” he remarks. But helping dig the basement for a new home in River Forest that day, he was standing adjusting air hoses when a tractor moved slightly, trapping his feet underneath for about four seconds. He felt a burning sensation but not extreme pain, and after sitting down for a while he went back to work. He put in six more hours that day. That night, at his home in Wheaton, he found that both feet were swollen. The next workday he couldn’t get his shoes on, so he wore snow boots and put in a full day. Thus shod, he continued to work for four months.
Burke’s doctor recommended whirlpool baths and ultrasound treatment for his feet; but neither had an appreciable effect on the swelling and pain. In April, when his condition was diagnosed as RSD, his doctor and boss agreed he should stop work. “It felt like I was walking on stones all the time,” says Burke, “sort of like the bottoms of my feet were rounded and I might just roll over.”
In 1990 he tried to return to his job three days a week but had to abandon the effort after a month. He’s had numerous nerve blocks at Rush-Presbyterian and a lot of physical therapy at Central DuPage Hospital. The only improvement is that he can now move his toes, which for a time were immobile. The pain continues, and lately it’s gotten into his right leg.
Before that critical day, Burke and his wife had been looking forward to a more relaxed life as their parental responsibilities diminished. They have six children, four of whom are now on their own. But at this point the future is murky. “I’m not feeling sorry for myself,” says Burke, who takes medication to control his pain and attends a support group regularly. “But I’d have to say I’m sort of aggravated. And I have to wonder, as bad as I am now at 59, how is my life gonna be down the road a few years?”
Joellen Skrip, a 37-year-old Hinsdale wife and mother of two, remembers the afternoon of December 23, 1987, with utter clarity. Driving through a Toys-R-Us parking lot she had momentarily stopped to allow pedestrians to pass when another car rammed into the side of her two-month-old Toyota. “I wasn’t aware of being hurt at all,” she says, “and I didn’t even go to the hospital. I was just shook up about the damage to our new car. I was afraid my husband would kill me.”
The next day her left wrist hurt, but she had expected some delayed soreness. Then the pain, somewhere between a burning sensation and the cut of a razor blade, grew stronger in the following days and weeks. The skin on her wrist became red and painful to the touch. She had to quit her job and lost 30 pounds in four months. In April, a surgeon said the condition was RSD.
Skrip had ganglion blocks and physical therapy, but the condition only crept up her arm. After a year her left hand was involuntarily clenched into a tight fist, and she habitually kept it tucked protectively under her chin. Skrip wore a sock and three gloves on the hand because it was so cold and sensitive, and the skin on her wrist and arm became ulcerated. “My life was falling apart,” says Skrip. “The kids thought I was going to die. For a while I was afraid my husband and I were going to get a divorce. I didn’t want to go out. I didn’t want to see anyone. What I really wanted was to have my arm amputated.”
In researching her ailment, Skrip came across an article that suggested RSD strikes women who demand a lot of sympathy and secretly want to be taken care of. “I flipped,” she says. “I took that as a personal affront. I quit crying and changed my attitude. I started making light of everything. I even got into race walking. My whole mood improved.” But the wrist and arm did not–until 1990, shortly before she was scheduled to have a sympathectomy.
A doctor suggested she try instead an intense series of ganglion blocks–every other day–combined with massage therapy. That produced a gradual improvement. Her hand has unclenched and the pain is no longer severe. “I will not forget the first day I could button my shirt again,” she says, “or the day I put my arm out the window and could actually feel the breeze and sun as pleasant sensations.” She continues massage once a week and sees the doctor twice a month. “I’m doing better,” she says. “I really am.”
No one knows why people like Joellen Skrip improve while others, like Dee Connors and Tom Burke, do not. No one fully understands the sympathetic system’s mysterious misbehavior, but several complicated physiological explanations for it are frequently offered.
According to the “short circuit” theory, RSD is the result of abnormal links between sensory and sympathetic nerve fibers in the injured part of the body. A large nerve in the hand, for example, contains both sensory fibers, which carry touch and other sensations from the hand to the spinal cord and up to the brain, and sympathetic fibers, which carry messages back to the hand from the central nervous system. When the nerve is damaged, it’s possible for unhealthy synapses to develop between the two sets of fibers–a kind of short circuit in the nerve. Ordinary sympathetic impulses are thus transmitted directly to the nearby sensory fibers, which relay them back up to the brain, which reads them as pain. This theory does not explain, however, why the short circuits occur in some people but not in most.
In the “vicious cycle” model, some people are constitutionally inclined to sympathetic-system instability, so that the system overreacts to a minor injury, constricting blood vessels in the injured area more tightly than is appropriate. The diminished flow of blood causes pain, which causes the sympathetic nerves to clamp down on blood flow even more tightly. The cycle of pain is thus self-perpetuating, and the injured part begins to atrophy from disuse. Of course this theory doesn’t explain why the instability is there in the first place.
The “gate control” theory maintains that the problem is not in the injured part of the body but in the spinal cord. Certain nerve cells, or neurons, in the spine receive input from nerve systems all over the body. Specialized large fibers in these neurons are supposed to modulate, or close the gate on, the smaller, pain-carrying fibers. But the neuron may become so sensitized itself, according to this theory, that it fails to close the gate, instead passing on even normal sensory input, such as a pat on the hand, as if it were intense pain. While the gate-control theory explains both the continuing burning pain and the hypersensitivity associated with RSD, it doesn’t explain why a neuron becomes or remains sensitized.
Some researchers contend that all three theories–and others as well–have elements of truth; they see RSD as a complex disorder operating on many levels at the same time. Once it settles into the central nervous system, they fear, it can never be fully cured. Much of the research by psychological experts supports the idea that the causes of RSD are strictly physiological. Psychologist John Bonica, for instance, declared that 90 percent of the emotional disturbances found in RSD patients are the direct result of pain and disability, not predisposing factors. Of course, many display some emotional problems, he says–who wouldn’t, after years of 24-hour-a-day pain? Researcher J.D. Haddox claimed, after reviewing existing research, that there’s insufficient evidence to establish the existence of an RSD-prone personality. Nevertheless, the intriguing possibility of a close link between the mind and RSD remains.
On an unseasonably cold evening, a dozen people are sitting in a large room on the fifth floor of Rush-Presbyterian medical center for their regular RSD support group. Most are in their 40s or 50s. Many are accompanied by a spouse or close friend. Some have come 50 miles or more for the meeting. New members and old introduce themselves by taking turns briefly narrating their experiences, often in tones so low it’s difficult to hear them. One woman was stricken in her right arm two and a half years ago and has had five surgeries–with no relief. Another woman who arrived on crutches says she can’t connect her disability with any particular injury. “If I’d known when I got this what I know now,” she says matter-of-factly, “I would have blown my brains out.” A Chicago policeman explains that his trouble started after being shot in the thigh more than a year ago while trying to thwart a currency-exchange robbery. He keeps rubbing his calf during the meeting, as if trying to restore circulation.
More than 50 such support groups exist in the United States, according to Rosalyn Davis, cofounder of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), headquartered in Haddonfield, New Jersey. “We get about 250 requests a month for information,” says Davis. “There’s been a tremendous increase in interest and information in the last two or three years. We’ve learned there’s no one treatment for RSD–that’s why more research is needed.”
Davis is familiar with the horrors of RSD. Her daughter Gina, then 11, was stricken in 1974 (it was Memorial Day, Davis remembers) after she fell off her bike and bruised her elbow. Today, nearly 19 years later, Gina is almost totally incapacitated. She’s had 14 operations and uncounted nerve blocks and other procedures to stem the pain, which courses from her shoulder to her hand. It is now controlled to some extent by a kind of last-resort measure: a pump implanted in her abdomen that supplies morphine as needed to nerve centers in her spine.
The RSDSA maintains that the syndrome has a physiological base. “It’s not a mental problem,” Davis insists. “It’s a real, organic disease. It affects all kinds of personalities. Of course some people have emotional problems to begin with. But the vast majority were perfectly normal until they were hit.”
The speaker this evening at Rush-Presbyterian is Dr. David Flemming, an anesthesiologist associated with the University of Chicago Hospitals who does not share Davis’s views but who has been invited because he’s gotten some good results for RSD pain with massage therapy and hypnosis. Flemming talks for a while about short circuits and other theories on how the sympathetic nervous system goes haywire. He then shifts the discussion, suggesting that many people who develop RSD have had “painful experiences” while growing up and noting that RSD victims appear to be disproportionately “gifted in hypnosis”–that is, they are more open to hypnotic suggestion than the general population.
His shift produces an almost palpable change in the audience’s mood–a tensing of jaws, a narrowing of eyes. Flemming continues somewhat tentatively, perhaps sensing he’s on the cusp of something explosive. When RSD is brought under control, he says, it leaves “a void in one’s life” where once there was something that dominated every waking moment. The former victim, he says, must reconstruct a more acceptable emotional life. He is not terribly explicit, but the suggestion is surely planted that the pain has been supplying a need, serving some unconscious purpose, and not a healthy one.
A body of recent research, much of it appearing in technical publications like The Clinical Journal of Pain, lends support to Flemming’s contention. Some investigators claim that people who develop RSD have had, almost without exception, significant disturbances in their lives, such as the loss of a job or the death of a close relative, within six months or so of developing the syndrome. Others, basing their findings on extensive interviews with patients, propose the existence of an “RSD personality” with such characteristics as passive-aggressive behavior, hypochondria, hysteria, suppressed rage, and chronic complaining. These persons, they believe, are predisposed to RSD. One investigator claimed that 64 percent of the people in his study required psychiatric evaluation; another said 35 percent of the RSD patients he studied showed “overt psychiatric abnormalities”; still another said 37 percent of a study group had “long-term emotional disturbances.” Children with RSD, some studies claimed, come from families characterized by instability, manipulativeness, and the absence of clear boundaries between family members.
Flemming does not go into all this, but the support group members appear uncomfortably aware of what he’s getting at. They give him modest applause at the end of his presentation. Outside the room after the meeting, a woman walks unsteadily toward the elevator, aided by a cane. “I don’t think my mind has anything to do with this,” she says. “OK, maybe I am crazy, but if I am it’s because of what I’ve been through with this pain. I sure didn’t ask for it.” Several of her companions nod in agreement but decline to be interviewed. (Many RSD victims are reluctant to discuss their illness with reporters because they have outstanding insurance claims or pending lawsuits.)
Later, Flemming expands on his views. “We’re all born with the ability of our minds to wander in a creative fashion,” he tells me. “A child in a particularly stressful situation may invent a character, another persona for himself, who is better able to cope with the problem.” Flemming is not suggesting that RSD sufferers have split personalities but that creative ways of dealing with problems can persist in adult life.
The pain of RSD, he contends, is an outgrowth of some emotional stress the person is under, a way of substituting physical pain for emotional discomfort. The overwhelming majority of RSD sufferers he sees have a “well-developed capacity to disassociate,” to detach feelings from their sources, says Flemming. He cites the case of a woman who bottled up her emotions after her husband died; a subsequent bout with RSD in her leg was a substitute for the grief she could not express. He talks of the young man who could not bring himself to speak with his girlfriend after she had been raped; when he developed RSD, says Flemming, the man felt less anguish over the situation, even though he could get around only on crutches.
Flemming is the doctor who helped Joellen Skrip get rid of her tightly clenched fist and wasted arm. She acknowledges that a series of “personal traumas” and “unresolved problems” had been dogging her prior to her accident and the onset of RSD. “I really believe if I had dealt with these things, I wouldn’t have gotten it,” she says. Since she has been working on the inner conflict, Skrip contends, her veins and muscles are gradually restoring themselves.
Flemming is concerned about the resistance to psychological treatment he finds among RSD patients. “Some people,” he says, “would rather have an inoperable brain tumor than a relatively minor emotional problem that can be alleviated by psychiatric or psychological intervention.” He is also concerned about the multiplication of RSD support groups. “You can’t cure someone if the membership in the group is providing a social aspect to life and giving a certain status,” he says. “The real problem has to be faced.”
Even more outspoken about “the real problem” is Dr. Ronald Pawl, medical director of the Pain Treatment Center at Lake Forest Hospital. He was cited earlier this year by Chicago magazine as one of the top 205 doctors in the area, for his treatment of chronic pain. And the Lake Forest pain center is one of the largest in the Chicago area, with more than 300 new patients evaluated last year alone, the majority longterm sufferers. Sitting in his office, Pawl discusses his experience with RSD over some 30 years. “At first I followed the accepted approach,” he says. “I did sympathetic blocks–they didn’t work. I did epidural blocks–they didn’t work. I did sympathectomies–they were not helping.”
He has finally come to the conclusion, he states confidently, that RSD is “a psychologically originating disorder” whose major manifestation is disuse (and eventual atrophy) of a body part; it’s also a disorder that always results in certain “secondary gains” for the patient. Furthermore, he insists, “the data is becoming clearer” that large numbers of RSD sufferers experienced some kind of abuse in childhood, and this early trauma may be linked with the personality profile many exhibit. The abuse can come in various forms, Pawl believes–physical, sexual, emotional–but he says the patients he interviews show an unmistakable pattern.
Pawl thinks some doctors today falsely diagnose persistent pain as RSD when in fact the source is some neurological malfunction; in these instances, blocks and other medical interventions can and do provide relief, even cure. When it’s genuine RSD (and only an extremely thorough medical and psychological investigation of the person and the family background can determine this, in Pawl’s view), traditional methods will fail; the root cause, the psychological problem, must be dealt with.
Particularly baffling are the “secondary benefits” patients allegedly receive from their illness. “Look at any case of real RSD,” says Pawl, “any case at all, and you will find some benefit–workmen’s compensation, [damages from] a lawsuit, relief from some responsibility. There’s always, always something.”
I ask Pawl how such benefits can possibly compensate for the continuous torture these people endure. He does not pretend to know, but he says some victims mutilate themselves in order to enhance their symptoms. One man applied a tourniquet to his leg to stimulate more pain; one woman painted her foot with blue dye in order to mimic RSD symptoms.
But the people I saw showed no obvious psychiatric symptoms, I insist, and gave not the slightest indication of somehow enjoying secondary benefits. They hoped and prayed daily for one thing: relief. Pawl–whose book The Chronic Pain Primer is widely referred to by physicians–suggests that the source lies so deep it is not easily diagnosed, even by skilled practitioners. It’s also important to realize, he says, that “90 percent of the literature” on RSD and most of the treatment of chronic-pain patients is done by anesthesiologists–people whose specialty is injecting pain-killing drugs, not probing the human psyche.
Pawl’s insights notwithstanding, Rosalyn Davis and the RSDSA have little patience with talk of secondary benefits, child abuse, or self-mutilation. “Not for one minute do I believe this is a psychological thing,” says Davis, “and neither do the doctors and psychiatrists we deal with. It’s a real disservice to try to write it off as psychological.”
Long-term RSD sufferers are equally adamant about the true nature of their illness. “I’ve read about predispositions and emotional problems,” says Phyllis Aavang. “And it’s unsettling because it’s just not true. What I think is this: the doctors can’t find a cure, so they just blame the patient.”
Art accompanying story in printed newspaper (not available in this archive): photos/Jon Randolph.