Published Monday, April 2, 2007 INTERNAL STRUGGLE, EXTERNAL SCORN Some Doctors, Friends, Relatives Dismiss Sickness By Gary White The Ledger It's easy to make personality judgments about people with fibromyalgia and other chronic pain disorders. The patient's current lethargy and inactivity can yield assumptions of lifelong laziness and aversion to work. Those diagnosed with the ailments say it's a common and frustrating misconception. "I don't think I have ever met a person with fibromyalgia who is lazy," said Lynne Matallana, president of the National Fibromyalgia Association. "Quite the opposite." Matallana said a high percentage of fibromyalgia patients are "Type A" personalities who were high-achieving professionals before the illness struck. Matallana, 51, worked as a partner in a prominent advertising firm and was athletic before she became ill in the early 1990s, eventually spending two years in bed after being wrongly diagnosed with lupus. Local patients have similar backgrounds. Martha Grierson of Winter Haven worked long hours as a sales manager for a large corporation before fibromyalgia prematurely ended her career. Lynn Anderson of Polk City used to show horses in competitions, though fibromyalgia now prevents her from even mounting a horse. Lakeland's Laura Bodner, another fibromyalgia patient, formerly worked as a firefighting trainer and exercised five days a week. Davenport resident Millie Haddad was a nurse with a side business until being diagnosed with chronic fatigue syndrome, and Teresa Kucera, a Lakeland resident with the same disorder, worked as a medical assistant and said she "used to be like a tornado." Government medical agencies have recognized fibromyalgia and CFS as legitimate disorders in the past decade or so, but patients say skepticism remains commonplace, especially among general practitioners. Every fibromyalgia patient seems to have at least one story of rude or dismissive treatment from a doctor. Grierson and other local patients said doctors have suggested their problems are psychological rather than physical. "I've actually had a doctor tell me I need mental health help, that it was all somatic, which is a kind way of saying it's all in your head," Grierson said. Bodner, 45, described the hostility she received from a local doctor after seeking a refill of Darvocet, a prescription pain medicine. "My daughter got real upset because she sees how much pain I'm in, and she goes, 'Can't you just give her something that's going to help her instead of Darvocet?'" Bodner said. "And (the doctor) said, 'I don't even like giving her Darvocet because I think she's overreacting. Somebody who's got fibromyalgia shouldn't be in this pain.' My daughter just went off on the doctor. She was saying, 'You know, I wish you could just have it for one week so you could see what my mother goes through.'" Matallana said the lack of compassion and understanding from doctors compounds the physical and emotional distress of the illness itself. "I know in my case I just had the idea if you got sick you went to a doctor and they treated you," Matallana said. "I never, ever imagined someone would question my pain and my inability to function. That was to me almost as bad as enduring the physical symptoms." Confusion, skepticism The transformation of dynamic people into suffering wrecks, without any apparent cause, prompts confusion and questioning. Fibromyalgia patients say even friends, relatives and spouses find it hard to accept the reality of what has been called an invisible illness. "Even my family was skeptical at first," said Randy Jones, a Dade City resident who receives treatment for her fibromyalgia at Salazar Family Clinic in Mulberry. "Even my husband, it was like, 'Maybe you just don't want to get out of bed.' " Jones, 60, admitted she had doubts about fibromyalgia before the illness struck her in 2000, leaving her incapacitated for long periods. "Nobody walks in your body but you, and how can one person say what another person is feeling?" she said. "Why would I want to do this to myself?" Grierson likewise has had friends and relatives question her condition. "Some I thought would understand have accused me of being drug-seeking, of being lazy, of doing this for attention," she said. "It's just awful the things people will say because they don't understand and it's not a common thing and you don't carry scars on the outside of your body. It makes coping with what's wrong with you that much worse because if you hear it enough you begin to think maybe you are a little crazy. That's the insidious thing of it." If the medical world has been slow to accept fibromyalgia and other chronic pain disorders, it's perhaps no surprise patients describe having difficulties with medical coverage and government disability programs. Grierson said she faced constant battles with her insurance company over payments for treatments, and at one point when she lived in Pennsylvania a doctor sued her over the plan's failure to pay medical bills. She had equal trouble getting approved for Social Security Disability Income, going through two years of denials before she hired a lawyer who helped her prevail in a court hearing. Bodner said she has twice been turned down for SSDI since applying last year. She has enlisted a lawyer to help her push for the government supplement. Anderson has Medicare coverage, but she said the plan doesn't cover massage therapy, the only treatment that offers her significant relief because the effect is temporary. Her sister, Terry Anderson, became a massage therapist after observing Lynn's ordeal, and she sometimes travels from Pinellas County to offer her services. Haddad, who required a court hearing before being approved for SSDI, said, "It took a long time before I was able to collect disability because they didn't believe this till a lot of doctors started getting the disease themselves." 'The F-Word' Dr. Patrick Wood, an assistant professor of medicine at Louisiana State University, decided to specialize in fibromyalgia in part because it was a verboten term during his training. As Wood points out, many diseases now universally accepted - including malaria, asthma and Parkinson's - were previously dismissed or relegated to non-medical categories. "When I was in medical school, it was the F-word," Wood said. "You didn't even say it around other physicians. I was very intrigued to think there was a medical entity you could choose not to believe in, like a ghost or a fairy. … I've always kind of stuck up for the underdog, and fibromyalgia patients are kind of the underdogs of the medical world." Despite recent progress, Wood said, "I've been at the same institution for 10 years, and there's still tremendous hostility toward the disorder (fibromyalgia) and toward the diagnosis from people who certainly should know better." Chronic pain patients and their advocates cite several factors behind the lingering skepticism among many doctors. One is the lack of verifiable causes. The ailments arise gradually in some patients, while others point to a specific traumatic event as the trigger. The trauma can be physical - in Anderson's case, being kicked in the face by a horse - or emotional, such as a divorce or the death of a spouse. Advocates say the varying intensity of symptoms also fosters doubts. "The illness can wax and wane, and when people feel better oftentimes they push themselves so others see them up doing what normal people would do, and the next week they're back in bad," Matallana said. "That doesn't make sense; we think of illness as being continuous." Wood, noting that doctors dislike uncertainty, said many general practitioners are loath to admit they don't have an explanation for a patient's complaints and react by questioning the patient's description. "I don't think it makes me popular with my colleagues, but we're trained to be little gods and anything that challenges our god-like capacity we dismiss," Wood said. "(A doctor) could say, 'There's nothing to objectively demonstrate you're really sick. How do I know you're sick?' You have to trust the patient's report, which we're often not willing to do when it comes to pain." Patients say it often becomes clear they know much more about their conditions than the doctors charged with treating them. Haddad of Davenport has attended countless seminars on chronic fatigue syndrome since being diagnosed with it, and she said most doctors dispense merely obvious advice - eat right, sleep right, lose weight. "A lot of health-care providers feel uncomfortable because of the limits of their expertise," said Dr. Roland Staud, a professor of medicine at the University of Florida specializing in fibromyalgia. "Many physicians wanted these patients to be seen by psychologists and psychiatrists and did not feel equipped to deal with this." A GENDER ISSUE Matallana and others say the gender factor also affects perceptions of fibromyalgia. The preponderance of patients are women, and advocates cite a long history of medical authorities dismissing female- oriented illnesses as forms of hysteria. "You have to look back on the medical community - it has basically been male-dominated," Matallana said. "I don't think it's something they have done intentionally, but I know when you have experienced something yourself it's much easier to understand what it really is." Lakeland's Jiwa Farrell was diagnosed at age 16 with lupus, an autoimmune disorder that often mimics fibromyalgia and chronic fatigue syndrome and disproportionately affects women. "I'm not trying to make this a feminist movement or anything," she said, "but … it amazes me how many drugs they have out for ED (erectile dysfunction) all of a sudden, and we haven't had a new drug for lupus since the '60s." Fibromyalgia and other chronic pain disorders sometimes occur in family clusters. For example, Bodner said her two daughters, both in their 20s, have been told they have fibromyalgia since she received her own diagnosis, and several other local patients also said relatives share their ailments. The phenomenon might suggest a genetic component to the disorders, but to a skeptical mind it can also raise the prospect of suggestibility. Confusing matters further, fibromyalgia and related disorders seem intertwined with psychological components. Many patients exhibit signs of depression, leading to a chicken-and-egg question about the relation between psychological distress and physical pain. "The question that was raised in the past was in what category of medical illness these symptoms would fall," said Staud, the UF professor. "Many physicians believed they would fall in the psychological-psychiatric area, where some physicians believed it was in the purely physical area, and of course the truth is halfway in between, because for 200 years we know there is no mind-body dichotomy. Every illness has these components. To say someone has a purely psychological illness - this is not an up-to-date approach." PATIENT PROFILING Dr. Edward Lubin of Winter Haven's Gessler Clinic said some general practitioners engage in "patient profiling" when they encounter the typical fibromyalgia patient - a middle-aged woman complaining of vague pains. Lubin, a pain-management specialist, also cited the financial pressures that limit the time doctors spend with each patient, discouraging a thorough exploration of the patient's medical history and fostering cynical reactions. "Some physicians have a sketch in their minds," Lubin said, "so when a patient comes to their office with complaints that can be treated with either antidepressants or narcotics, they immediately have a picture in their mind of a patient, and they either don't explore the nature of it or essentially they punt the patient to a pain management doctor." Lubin said some doctors dismiss patients with vague complaints of pain as hypochondriacs or malingerers, lazy people looking for an excuse not to work. Lubin said it doesn't help matters that he and other doctors regularly encounter true malingerers, about whom they must make judgments to determine government disability payments. "Every doctor is faced with being a useful idiot, being a tool for somebody who wants to get out of work," said Lubin, who trained at Yale and Harvard. "I'd rather you fooled me once and then I could say, 'Shame on you,' rather than try to prevent my ego from ever being bruised by assuming everyone whoever asked me for a pill for their pain is a drug-seeker. We can't lose our humanity just because we're afraid of being hoodwinked." Gary White can be reached at theledger.com or at 863-802-7518.