Controversial Syndromes and Their Relationship to Fibromyalgia

Over the years, a variety of health professionals have developed terms or phrases to denote seemingly unique clinical combinations of symptoms and signs. A disorder or syndrome does not necessarily exist simply because it has been described in the medical literature. Some have stood the test of time, others overlap with syndromes described by different specialists, and additional terms may be favored by a single practitioner advocating a “cause.” This chapter reviews conditions that have overlapping features with fibromyalgia but are not yet regarded as full-blown, legitimate disorders by organized medicine. When Dr. Fine first met Wanda, she was a basket case. Wanda had canceled three prior appointments because smells from a new carpet had made her sick, Med fly agricultural spraying 30 miles away prevented her from getting out of bed, and she developed a severe headache when her neighbors’ house was being painted. She almost passed out in the elevator going to Dr. Fine’s office because somebody was smoking. Wanda had been to three allergists, who obtained normal skin tests and blood tests. Desperate, she traveled to Mexico, where “immune rejuvenating” injections were administered, and to Texas, where a clinical ecologist sequestered her in a pollution-free, environmentally safe quonset hut for a month. There she received daily colonies, antiyeast medication, and vitamin shots, to no avail. Dr. Fine elicited a history of aching, sleep disorder, a “leaky gut,” muscle pains, fatigue, and a spastic colon. His physical examination and mental status examination revealed evidence of anxiety, obsessive-compulsive tendencies, and fibromyalgia tender points. Wanda was treated with fluoxetine (Prozac) for pain and obsessive behavior, buspirone (Buspar), for anxiety during the day, and trazodone (Desyrel), a tricyclic, to help her sleep at night. She was referred to a psychologist who worked to improve Wanda’s socialization skills and encouraged her to go out rather than be a prisoner in her own home. Wanda is slowly improving but will need many months of therapy. Self-reported environmental sensitivities are observed in 15 percent of Americans.

The Future Holds a Lot of Hope

When we became interested in fibromyalgia over 20 years ago, we quickly learned how it felt to be lonely. The Fibrositis Study Club (now the Fibromyalgia Study Club) of the American Rheumatism Association (now the American College of Rheumatology) had an average attendance of ten at its annual meetings. In 2001, more than 500 rheumatologists attended the same meeting. During the early 1980s, an average of 14 articles a year appeared in the fibromyalgia medical literature, and less than $100,000 was being spent annually on fibromyalgia research. The recognition of fibromyalgia by organized medicine as a distinct syndrome has had a salutary effect on research. As of this writing, 500 articles are now published yearly and $2 million is spent annually on research. All this attention and interest bodes well for more scientific breakthroughs in the field. What can fibromyalgia patients hope for over the next 20 years? In all probability, the name fibromyalgia will be replaced by a more all-encompassing term, one that includes related syndromes that have similar causes and physiologic processes. A better (and catchier) term that combines symptoms and signs reported in tension headache, pain amplification, irritable bowel syndrome, irritable bladder, and chronic fatigue syndrome, among others, will be devised and agreed on. When organized medicine marshals the resources of experts in gastroenterology, infectious disease, rheumatology, and other subspecialties to work together, our knowledge of pain amplification, neurotransmitter-mediated, behaviorally influenced fatigue syndromes will be increased, and research strategies will be better coordinated and focused. Fibromyalgia advocacy groups will unite to increase funding for research and education that will make a difference. We predict that 2–5 percent of the U.S. population has chronic neuromuscular pain with the systemic overlay mentioned above. Over the next 20 years, the precise racial and ethnic backgrounds of these individuals will be identified, as well as the genes that influence the process. Additionally, environmental and occupational factors that cause or aggravate chronic neuromuscular pain will be clarified. Through coordinated strategies involving all forms of media, the public will become aware of what fibromyalgia is and what factors are associated with it.

The Influence of Exercise and Rehabilitation on the Mind and Body

Let’s continue on the self-help road to improving fibromyalgia symptoms. Suppose we are eating healthy, well-balanced meals, are no longer smoking, have learned to pace ourselves, cope with changes in the weather, are sleeping well, and have reconfigured the house. At this point, how can the body be trained to reduce pain, stiffness, and fatigue? This chapter will explore how physical, mental, and complementary modalities allow fibromyalgia patients to feel better about their bodies and minds. Therapeutic regimens that help the body and mind, whether physical therapy, yoga, acupuncture, or chiropractic methods, are all based on similar tenets of body mechanics: 1. Fibromyalgia patients will never improve unless they have good posture. Bad posture aggravates musculoskeletal pain and creates tight, stiff, sore muscles. Therefore, stretch, change positions, and have a good workstation that does not require too much leaning or reaching. 2. The way we get around is a demonstration of body mechanics. The fundamental principles of good body mechanics in fibromyalgia include using a broad base of support by distributing loads to stronger joints with a greater surface area, keeping things close to the body to provide leverage, minimizing reaching, and not putting too much pressure on the lower back. Also, don’t stay in the same position for a prolonged period of time. 3. Exercise is necessary. It improves our sense of well-being, strengthens muscles and bones, allows restful sleep, relieves stress, releases serotonin and endorphins, which decreases pain, and burns calories. 4. Don’t be shy about using supports. Whether it be an armrest, special chair, brace, wall, railing, pillow, furniture, slings, pockets, or even another person’s body, supports allow fibromyalgia patients to decrease the amount of weight or stress that would otherwise be applied to the body, producing discomfort or pain. 5. All activities should be conducive to relaxation and stress reduction, whether they be deep breathing, meditation, biofeedback, or guided imagery. There are a surprisingly large number of ways these activities can be carried out. They are discussed in the next few sections.

I’m Not Crazy!

“You look fine, and I can’t find anything wrong with you. Maybe you’re just depressed or stressed out.” Nearly all of my patients have heard this before. And they start to wonder: Am I really crazy? How could it all be in my mind? This chapter will summarize the small number of behavioral surveys that rheumatologists and psychiatrists have performed on fibromyalgia patients. The treatment of fibromyalgia will be reviewed in Parts VI and VII. Why are there so few studies that we can rely upon? First, most research is conducted at university medical centers, where fibromyalgia patients tend to be more symptomatic and have not responded to interventions by community physicians. Second, depression itself is associated with high rates of musculoskeletal pain. Also, few people have had comprehensive psychological evaluations before they became ill that can be used for comparison. Finally, instruments of psychological assessment were devised before we knew what fibromyalgia was, and popular tests such as the Minnesota Multiphasic Personality Inventory (MMPI) cannot distinguish between pain from a disease and pain from depression. Is fibromyalgia a manifestation of depression or the reverse? Well-designed studies have addressed this issue, but many used different methods, populations, ethnic groupings, referral sources, and geographical distributions. In any case, the results were reasonably similar. On average, these studies showed that about 18 percent of fibromyalgia patients have evidence of a major depression at any office visit and 58 percent have a history of major depression in their lifetime. What does this mean? At any point in time, the overwhelming majority of fibromyalgia patients are not seriously depressed. And if they are depressed, it’s usually because they do not feel well. This condition is called reactive depression and is reversible with treatment, as opposed to endogenous depression, which is caused by chemical imbalances and is much harder to treat. A well-designed study of depressed patients demonstrated that fewer than 10 percent had two or more tender points. Certain life events or historical factors are statistically present more often in fibromyalgia patients than in those without the disorder.

What is the Autonomic Nervous System?

The autonomic nervous system (ANS) has already been introduced; let’s summarize what we know about it so far. Part of the peripheral nervous system, the ANS consists of the sympathetic nervous system (SNS), which consists of outflow from the thoracic and upper lumbar spine, and the parasympathetic nervous system (PNS), including outflow from the cranial nerves emanating from the upper spine and also from the mid-lumbar to the sacral areas at the buttock region. Several neurochemicals help transmit autonomic instructions. These include epinephrine (adrenaline), norepinephrine (noradrenalin), dopamine, and acetylcholine. This chapter will focus on how abnormalities in the regulation of the ANS cause many of the symptoms and signs observed in fibromyalgia. Our body has numerous receptors or surveillance sensors that detect heat, cold, and inflammation. These ANS sensors perform a function known as autoregulation. As an example of how the ANS normally works, why don’t we pass out when we suddenly jump out of bed? Because the ANS instantly constricts our blood vessels peripherally and dilates them centrally. In other words, as blood is pooled to the heart and the brain, the ANS adjusts our blood pressure and regulates our pulse, or heart rate, so that we don’t collapse. On the local level, these sensors dilate or constrict flow from blood vessels. They can secondarily contract and relax muscles, open and close lung airways, or cause us to sweat. For instance, ANS sensors can tone muscles, regulate urine, and regulate bowel movements, as well as dilate or constrict our pupils. The SNS arm of the ANS is our “fight or flight” system, releasing epinephrine and norepinephrine as well as a neurochemical called dopamine. Whereas the SNS often acts as an acute stress response, the PNS arm tends to protect and conserve body processes and resources. The SNS and PNS sometimes work at cross purposes, but frequently they work together to permit actions such as normal sexual functioning and urination. How do the workings of the ANS relate to fibromyalgia? The SNS is underactive in fibromyalgia in the sense that an increased ratio of excitatory to inhibitory responses from central sensitization results in lower blood flow rates, leaky capillaries, at relatively low baseline blood pressure.

What’s Wrong with My Muscles?

Since most fibromyalgia patients complain of aching and spasm in their muscles, common sense suggests that there must be something wrong with the muscle. This is easier said than agreed upon. For the last 80 years, researchers have been looking for the key to muscle pathology in fibromyalgia. As of this writing, there are highly respected investigators who feel that there is little if anything wrong with fibromyalgia muscles. However, other equally regarded researchers have presented evidence that abnormal muscle metabolism is the linchpin for what goes awry in the disorder. Why are there such discrepancies? Let’s explore what goes on in our muscles. Our body has 640 different muscles, which constitute as much as 40 percent of our weight. When physicians look at muscles of fibromyalgia patients under a simple microscope, they generally appear normal. In fact, muscles must be looked at under an electron microscope (which magnifies the tissue thousands of times) in order to find any consistent abnormalities. In this setting there are subtle alterations, including the deposition of a chemical, glycogen, swollen and abnormal cell organelles known as mitochondria, increased DNA fragmentation ragged red fibers, and smeared muscle cell membranes. Some investigators have shown that magnesium levels are low in the muscles of fibromyalgia patients. So where are the disagreements? Fibromyalgia patients are generally deconditioned. In other words, they are out of shape. Of course, many more people are out of shape than have fibromyalgia, but studies of muscles from out-of-shape people also show some of these alterations. If fibromyalgia muscles don’t look very different from normal muscles under themicroscope, where else can we look for muscle pathology? Muscle strength can be decreased or normal in fibromyalgia, and published studies conflict as to whether or not muscle fatigue is present. Nevertheless, people who are out of shape also have decreased muscle strength. Let’s look at blood flow to muscles. Muscles are fueled by oxygen, which is supplied and carried by arteries. Some muscles in fibromyalgia do not get enough oxygen. “Angina” of the muscles can develop, producing pain if the oxygen supply is decreased.

Why and How Do We Hurt?

A fibromyalgia patient frequently complains of pain. The pain of fibromyalgia is different from that of a headache, stomach cramp, toothache, or swollen joint. It has been described as a type of stiffness or aching, often associated with spasm. Unlike the other pains mentioned above, fibromyalgia pain responds poorly to aspirin, acetaminophen (Tylenol), or ibuprofen (Advil, Motrin). In fact, studies have suggested that even narcotics such as morphine are minimally beneficial in ameliorating fibromyalgia pain. Why is it that fibromyalgia patients can take codeine, Darvon, Vicodin, or even Demerol for musculoskeletal aches and have only a slight response? What produces “pain without purpose”? In this chapter, we’ll explore what makes fibromyalgia a pain amplification syndrome. Why does the patient hurt in places where there was often no injury and all laboratory tests are normal? What creates what doctors call allodynia, or a clinical situation that results in pain from a stimulus (such as light touch) that normally should not be painful? Fibromyalgia is a form of chronic, widespread allodynia, as well as sustained hyperalgesia, or greater sensitivity than would be expected to an adverse stimulus. The nervous system consists of several components. The brain and spinal cord comprise the central nervous system. Nerves leaving the spinal cord that tell us to move our arms or legs are part of the “motor” aspects of the peripheral nervous system. Additionally, all sorts of information about touch, taste, chemicals, and pressure are relayed through “sensory” pathways back to the spinal cord, where they are processed and sent up to the brain for a response. The autonomic nervous system consists of specialized peripheral nerves. Fibromyalgia is a disorder characterized by an inappropriate neuromuscular reaction that leads to chronic pain. Patients with fibromyalgia usually react normally to acute pain. Our current concepts of the way the body responds to chronic painful stimuli stem from the gate theory, first proposed by Ronald Melzack and Patrick Wall in 1965. Nerve “wires” go from the periphery to the dorsal horn of the spinal cord. These wires are modulated by feedback loops within the nervous system.

What’s the Prognosis?

When patients are diagnosed with fibromyalgia, one of their first questions to us relates to its outcome. “Is there hope, doc?” and “Will the pain ever go away?” are two of the more common queries we hear. Unfortunately, few surveys have addressed this issue, and some have arrived at contradictory conclusions. This chapter will try to put these studies in their proper perspective. Yes, there is hope! When discomfort is limited to a specific region of the body and is not widespread, the outlook for long-term relief of pain is usually quite good. With local physical measures, injections, emotional support, and anti-inflammatory and analgesic medication, as well as instruction in proper body mechanics, over 75 percent of regional myofascial pain syndrome patients have substantial pain relief within two–three years. Unfortunately, there is little middle ground. For example, in an 18-year analysis of 53 patients with low back pain followed by musculoskeletal specialists, 25 percent ultimately developed fibromyalgia. Therefore, we believe that myofascial pain should not be shrugged off or given short shrift. A problem that is addressed early and effectively saves patients, health plans, and society money. Also ameliorated are the heartaches of patients and those close to them. Improved productivity promotes a feeling of relief, as well as a better quality of life. When a practitioner prescribes Advil and says that this is all that can be done for TMJ dysfunction syndrome, it is penny wise but pound foolish. The outcome of fibromyalgia depends on who sees the patient and calls the shots. For example, in one report that tracked family practitioners, internists, or other primary care physicians familiar with fibromyalgia’s diagnosis and management, 24 percent of patients were in remission at two years and 47 percent no longer met the ACR criteria for the syndrome. This implies that early intervention by a knowledgeable community physician is the first line of therapy. Children with fibromyalgia also have a favorable outcome. In the largest study to date, symptoms resolved in 73 percent within two years of diagnosis. The outlook in tertiary care settings is not as rosy. Once the symptoms and signs of the syndrome are serious enough to warrant referral to an academically oriented rheumatologist who is involved in fibromyalgia research, improvement is common but recovery rare.

Work and Disability

Most of us have to work for a living. There are bills to pay and families to provide for. Since fibromyalgia patients do not usually look ill and on superficial examination appear strong, complaints of difficulty performing the job can be hard to believe. This chapter will review definitions as they apply to disability, impairments reported in fibromyalgia patients, and constructive approaches that allow individuals with the syndrome to work most effectively. The World Health Organization defines disability as a limitation of function that compromises the ability to perform an activity within a range considered normal. Efforts to manage work disabilities considers issues such as age, sex, level of education, psychological profile, past attainments, motivation, retraining prospects, and social support systems. Additionally, work disability issues take into account work-related self-esteem, motivation, stress, fatigue, personal value systems, and availability of financial compensation. An impairment is an anatomic, physiologic, or psychological loss that leads to disability. Impairments include pain from work activities (e.g., heavy lifting), emotional stress (e.g., working in a complaint department), or muscle dysfunction (e.g., cerebral palsy). A handicap is a job limitation or something that cannot be done (e.g., deafness). Patients with a disability can be permanently, totally disabled and thus potentially eligible for Social Security Disability and Medicare health benefits. Other classifications include being permanently, partially disabled, whereby vocational rehabilitation, occupational therapy, and psychological or ergonomic evaluations can address impairments or handicaps to optimize employment retraining possibilities. Temporary, partial disability allows one to work with restrictions (e.g., no lifting more than ten pounds) while treatment is in progress. Temporary, total disability involves a leave of absence from employment while undergoing treatment so that one can return to work. Subjective factors of disability include symptoms such as pain or fatigue, while objective factors of disability are physical signs such as a heart murmur or a swollen joint. One can be disabled from a work category and granted disability even if employment is ongoing in a different work category. Work categories are rated as sedentary, light work, light medium work, medium work, heavy work, or very heavy work, each defined by how much exertion is used over a time interval.

Behind the Hype: Unproven, Experimental, Herbal, and Innovative Remedies

Advocates of practical though controversial lifestyle approaches have always found a sympathetic ear in the United States since the time folk practitioner Sylvester Graham’s principles of health, nutrition, and fitness (in addition to inventing the Graham cracker) achieved cult status in the 1840s. Heroic, misguided therapies were administered by allopathic (mainstream) physicians throughout the nineteenth century. This created fertile ground for promoters of patent medicines and nostrums to those escaping organized medicine’s use of leeches, cupping, phlebotomy (blood drawing) knives, and brutal laxative regimens. During the Progressive Era, medicine started to improve with the establishment of postgraduate training programs at Johns Hopkins University just before the turn of the century and the regulation of medicines as part of the Pure Food and Drug Act of 1906. The final revolution occurred when two-thirds of the medical schools in the United States closed following revelations of their inadequacies by the investigative Flexner Report funded by the Carnegie Foundation in 1910. Despite these changes, however, the appeal of alternative therapies to the American public continues unabated. The previous two chapters have described how mainstream, organized, conventional medicine approaches fibromyalgia. Even though their therapies usually provide significant relief of symptoms and signs, traditional physicians to some extent must regard themselves as failures. In the United States, one person in three has consulted a complementary medicine practitioner. These individuals spend $23 billion a year on this approach, $13 billion of which is out-of-pocket and not reimbursed by insurance. This exceeds all expenditures on hospital care in the United States. A 1996 Canadian study found that of several hundred fibromyalgia patients, 70 percent purchased unproven over-the-counter rubs, creams, vitamins, or herbs; 40 percent sought help from alternative medicine practitioners such as chiropractors, massage therapists, homeopaths, reflexologists, or acupuncturists; and 26 percent went on special diets. Since it is logical to believe that people who are tired and hurt want to get better, it follows that some fibromyalgia patients will try anything that is not harmful to improve their medical condition. This chapter is dedicated to patients who wish to “look before they leap” into nontraditional therapies.