Fibromyalgia, Las Vegas Sun, July 29, 1997

The unseen agony Lisa Ferguson Tuesday, July 29, 1997 | 11:47 a.m. Suicide had been on Janis Murphy's lips for some time. But few who knew the 40-year-old Henderson woman, who suffered from chronic fatigue and fibromyalgia syndromes (called CFS and FMS), ever expected her to go through with it. "It was always something she talked about, but she never really meant it," says Patti Wright. "I thought it was just a cry for help." In June, Murphy's body was discovered in a Michigan hotel room, along with a note to call Dr. Jack Kevorkian's attorney. "This was a big shock," says Wright, who heads up the FMS/CFS Friends Support Group in Henderson, to which Murphy belonged. The group meets twice monthly to offer its 250 members support and share information about these debilitating, oft-misunderstood illnesses. Wright, who has suffered from both illnesses for more than 25 years, says Murphy told her she'd made "arrangements" with Kevorkian to end her life two years ago. "But she had forgotten about them and she was working on getting better." She had attended a support group meeting two weeks before her death and spoke to Wright on the telephone just days before. "This was not a hopeless time for her, she was not down," Wright says. "She was hurting, but she was always hurting. It didn't sound like a person who was going to do this. "To go from a high (spirit) to that in two days, I just don't understand it." Murphy is the second CFS/FMS patient in a year to allegedly use Kevorkian's help to die. Last August, Massachusetts resident Judith Curren, who had ailed for 20 years with both syndromes, was also found dead in a Michigan hotel room under similar circumstances. Meanwhile, national and local experts of the syndromes -- as well as sufferers -- have spent the last decade rallying to bring more medical and media attention to the non-fatal illnesses. "I would love for 'Good Morning America' or the 'CBS Evening News' to be calling to find out more about CFS, but they don't," says Frank Wrenn, director of communications and development for the North Carolina-based Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America. "The people we hear from are the patients in the community, the people who are tired of being told, 'This is all in your head,' " Wrenn says. CFS, according to the National Institute of Allergy and Infectious Diseases, is characterized by six or more months of prolonged or recurrent fatigue unrelieved by rest. It is accompanied by a myriad of other symptoms including: sleep disturbances, fainting, muscle and joint pain and cognitive problems such as impaired memory and concentration. Mistakenly dubbed the "yuppie flu" in the mid-'80s, an estimated 200- to 500,000 Americans (mostly Caucasian women ages 25-44, though men and children are also afflicted) have CFS. It's tough to diagnose, however, because a medical test for the illness does not yet exist. Neither does a cure. The origin of CFS remains a mystery to doctors. Published data, however, does not indicate that it is contagious or transmittable through casual or intimate contact or blood transfusions. A recent theory suggests that sufferers may be genetically predisposed to the condition. Others speculate an overactive immune system is to blame. CFS symptoms overlap with those of fibromyalgia syndrome, a widespread musculoskeletal pain which includes stiffness in the muscles, ligaments and tendons. Characterized by bouts of fatigue, sleeplessness, headaches, chest pains and irritable bowel syndrome, among others, its cause and cure are also unknown. An estimated 5 million Americans are afflicted with FMS, most of them female. About 75 percent of CFS patients also meet the criteria for an FMS diagnosis: pain for at least three months, and 11 of 18 specified "tender points" around the neck, shoulders, hips, knees and elbows. Originally told two decades ago that she had rheumatoid arthritis, Sheryl Brewer was re-diagnosed in 1993 with FMS. "I was losing stamina, I was losing the physical strength in my hands," says the 53-year-old Rancho High School journalism teacher, who has also struggled with cognitive side effects. "In the middle of a lecture or answering (students') questions, all of a sudden the words are gone and I'm scrambling for something to substitute" them with. Brewer leads the Las Vegas Fibromyalgia/Chronic Fatigue support group which, with 450 members, is one of the largest FMS/CFS support groups in the nation. It meets monthly at Columbia Sunrise Hospital and Medical Center. "We have (members) who are working, we have people who cannot work," she says. "We have people who can't do anything, but they don't give up." Brewer was "absolutely floored" upon hearing the news of Murphy's suicide. "This is not a reason to end your life. You're not going to die from it. I hurt everyday, too, ... but I don't think about taking my own life. "There are a lot of things we can do to help us get through the worst of the pain, because it's not going to go away." Search for the cure Many of CFS and FMS symptoms, however, are treatable through mainstream and alternative medical techniques. One of the most notable breakthroughs came two years ago, when pediatrician Dr. Peter Rowe and researchers at Johns Hopkins University demonstrated a link between the CFS symptoms of light-headedness and fainting and neurally mediated hypotension (NMH). The blood pressure regulation disorder can only be detected through tilt table testing: Patients are positioned upright at a 70-degree angle to simulate long periods of standing, which seems to trigger the symptoms. NMH can be treated with common blood pressure medication and by increasing a person's salt and fluid intake. Meanwhile, studies continue at Johns Hopkins. The NMH discovery drew medical credibility to CFS, Wrenn says. "Suddenly there was something physiological going on here. I think it added new interest in the disease." Locally, Dr. Mervyn Willard, a family physician who serves as a medical advisor to the Henderson support group, conducted a study with 18 group members of a drug being tested by the Milkhouse Laboratory in New York. The liquid solution, being called "2CVV", contains molecules that "signal" white cells and other components of the immune system, thus increasing a patient's energy and also alleviating some of their FMS symptoms. It's undergoing the second phase of Food and Drug Administration trials and the results of Willard's study are being analyzed. A date when it will be made available to the public has not been determined. A step toward devising a diagnostic test for CFS was made last fall, when researchers at the Temple University School of Medicine identified a human enzyme present in all 10 of the patients they tested. The enzyme may also explain some common observations in CFS patients, such as their inability to maintain cellular energy. A larger patient study is underway. "I think this is a very optimistic time," Rowe says. "New therapies are being investigated by people all over the world now. I think this is going to be a very productive next decade." Mind over matter Of the treatments and medications already available, Joyce Huston has experimented with most of them -- from traditional anti-depressant and anti-inflammatory drugs to acupuncture and energy healing. What's proved the most effective, however, are "major talks with God" and "a lot of soul searching." "The pain of it is devastating," says the 35-year-old database administrator for TRW in Las Vegas. "Every time I stand up, it's like the pain goes shooting from the top of my head all the way down and it concentrates in my thighs." It has at times crippled the freelance trumpet player, vocalist and songwriter, who has performed in shows with music legends B.B. King and John Lee Hooker. Huston was diagnosed with FMS in 1992 following a year's worth of medical tests. "It came to the point where I couldn't walk," she says. "It was the most devastating thing in my life because I was used to being very active and independent and I was just a mass of nothing." Though she's continued to work at her job (often relying on a cane or a wheelchair to move about), it's been several months since Huston has had the strength to perform her musical act. "I can look so normal and that's part of the dilemma, too," she says. "(People) can't see the pain, so they may think you're making it up or something." That's why the Las Vegas FMS/CFS support group has been "tremendously helpful," she says, "because you don't have to try to explain (the pain), you just get it off your chest." Though she has "a lot of compassion" for Murphy, Huston doesn't condone her suicide. "I understand the thought crosses your mind because it can be so devastating," she says. "That was the way she decided to deal with it. I wouldn't advocate that." Neither does Lois Davidson. "We don't want this to lead to an epidemic of the same thing," says Davidson, 56, who founded the Las Vegas support group in '93, they year after she was diagnosed with FMS. "It is the most isolating illness in the world," she says. "When we choose to be martyrs and suffer in silence, we only accelerate our downward spiral into depression and isolation. "An illness doesn't make you commit suicide, it's what you're willing to deal with and not deal with." For Huston, that means not letting life pass by while the medical community searches for a cure. "I'm trying to find ways to adjust my lifestyle, to have more control over (the illness) instead of thinking it has control over me," she says. "I'm finding it hard to accept my limitations, but I have a mission to continue to live." archive