Chapter 2: Reviewing Fibromyalgia
First observed in the nineteenth century, fibromyalgia was originally referred to as fibrositis and fibrositis syndrome. It later was referred to as fibromyositis and muscular rheumatism. Dr. Philip Hench coined the term “fibromyalgia” to refer to the disease in 1976. Fibromyalgia is diagnosed by examining the severity of each patient’s pain across 19 specific areas on the body, as well as the severity of their associated symptoms (such as sleeping difficulty, cognitive dysfunction, and fatigue).
Over the years, fibromyalgia has carried a legacy of negative stigma within many realms of the medical community. Originally disregarded as a “psychosomatic” illness, many clinicians believed that people with fibromyalgia simply imagined their symptoms. Others believed that fibromyalgia itself was not a singular disease, but rather a combination of symptoms from a group of related conditions. In addition, other clinicians have refused to acknowledge the disease altogether, considering it an illegitimate condition and simply treating each specific symptom in the absence of a formal diagnosis. This lack of acceptance by the medical community has made patients feel ostracized, confused, and frustrated. In addition, this lack of acceptance has also made it difficult for patients to explain their symptoms to family and friends. When the American College of Rheumatology established definitive diagnostic criteria for fibromyalgia in 1990, the disease finally received the credibility it deserved and gave patients the ability to receive a true diagnosis. However, despite the existence of these diagnostic criteria, some clinicians still refused to accept that fibromyalgia is a true condition and continued to insist that its symptoms were the result of another physiologic condition or simply psychological in nature. Despite the continuing resistance from some in the medical community, fibromyalgia has become more widely accepted as a true medical diagnosis, thereby enabling patients to get the care they so desperately need and so greatly deserve.
For far greater detail relative to defining and understand the many aspects of fibromyalgia, please refer to our website – www.fibromyalgia-treatment.com. The sections in the primary header labeled “What is Fibromyalgia?”, “Fibromyalgia Treatment” and “Fibromyalgia Symptoms” contain comprehensive information related to all aspects of fibromyalgia. You will find individual articles detailing specific treatment options, from various pharmaceutical drugs to complementary and alternative therapies such as acupuncture and yoga. There you can also read detailed articles on the many symptoms associated with fibromyalgia, such as anxiety, depression,fatigue, and morning stiffness, as well as find summaries of the latest research surrounding fibromyalgia.
Although fibromyalgia most often affects Caucasian women, it does not discriminate. Anyone, including men, can get the disease. A 2005 Internet-based survey conducted by a team of leading fibromyalgia researchers, in conjunction with the National Fibromyalgia Association, found that of the 2,569 respondents, 96.8% were female and 91.5% were Caucasian. The average age was 47 and most were moderately overweight. Half of all respondents had average household incomes between $20,000 and $80,000. Click HERE for a full article on this research study into the demographics of fibromyalgia.
Pain
The most common symptom associated with fibromyalgia by far is chronic, widespread pain. The pain is often described as being deep, muscular pain as well as pain in the connective tissues (“myofascial pain”). Individual descriptions of pain sensations vary among fibromyalgia patients, with some describing it as aching, throbbing, or sharp/shooting. Others describe it more as a burning or tingling sensation.
The pain associated with fibromyalgia causes sufferers to ache all over. Certain " Tender Points” on the body may continue to ache regardless of the therapies a patient tries, and muscles may feel constantly overworked. The pain of fibromyalgia can concentrate around the joints of the neck, back, shoulders, and hips, which can make sleeping difficult and restrict mobility. Furthermore, fibromyalgia pain is frequently made worse by changes in weather, temperature, loss of sleep, fatigue, excessive physical activity or lack thereof, and stress/anxiety. Fibromyalgia pain differs from acute pain (that which originates suddenly and resolves over a period of time, such as with a broken bone), in that it is chronic, persistent, and ongoing.
Living with the pain of fibromyalgia is extremely difficult. It makes relaxation problematic and interacts severely with an individual’s ability to sleep restfully. Chronic sleep deprivation results in increased pain and aching, morning stiffness, and daytime fatigue. Fibromyalgia pain can also make it difficult for sufferers to maintain an active lifestyle and lead to social isolation, depression, and anxiety.
Fatigue
In addition to widespread muscle pain and aching, chronic persistent fatigue is another hallmark symptom of fibromyalgia. It occurs in as many as 90% of patients and can be so severe that it leads to isolation, depression, and anxiety. Many fibromyalgia sufferers describe their fatigue as being similar to that which occurs with the flu, truly debilitating and exhausting. Fatigue may wax and wane as symptoms worsen or improve, however it continues to be problematic and made worse by the sleep disturbances most fibromyalgia patients also experience.
Some researchers and physicians have observed strong similarities between the fatigue seen in fibromyalgia patients and the condition called chronic fatigue syndrome (CFS). CFS is a disorder marked by persistent, extreme fatigue that does not improve, even after a person rests. In addition, a number of other symptoms are commonly seen in CFS, including muscle pain, impaired memory, headache, sleep problems, and painful lymph nodes. It also occurs most often in women in their forties and fifties. Due to the strikingly similar symptoms and the high rate of occurrence in women, CFS and fibromyalgia are often miss-diagnosed as each other or diagnosed together in the same patient.
Sleep Impairment
Impaired sleep is another defining symptom of fibromyalgia, with as many as 85% - 90% of patients reporting insomnia and non-restorative sleep. Patients feel groggy and un-refreshed upon awakening. Fibromyalgia sufferers frequently report difficulty initiating or maintaining sleep, sleep that is light or of poor quality, and excessive daytime sleepiness. Some patients experience sudden bursts of brain activity – known as alpha EEG anomalies – which mimic being awake when in fact the brain should be in a state of deep sleep. These bursts of activity prevent individuals from having deep, restful sleep. Sleep apnea is also common, and it results when an individual stops breathing while asleep. These pauses in breathing disrupt sleep and cause a shift from deep sleep into lighter sleep phases, all of which culminate in poor sleep quality and a feeling of fatigue and tiredness the next day.
Morning Stiffness
Between 70% and 90% of individuals with fibromyalgia report waking up with increased pain, tenderness, muscle aches, and stiffness in the morning. They may feel as if it takes several hours for their bodies to loosen up or “warm up” before becoming fully mobile. This obviously can interfere with mobility and limit activity, making even the most simple tasks – such as getting out of bed, showering, and driving into work – incredibly difficult for fibromyalgia patients. Symptoms of morning stiffness include muscle tightness upon awakening, stiffness particularly in the hands, fingers, feet and toes, limited range of motion in the joints (for example, being unable to fully extend your leg), and generalized stiffness in the back, neck and head.
Historically, one of the required criteria to receive a diagnosis of fibromyalgia was the presence of at least 11 of 18 specific tender points. These 18 anatomic sites cluster around the neck, shoulders, chest, hips, knees, and elbows. In order to evaluate these tender points, a physician will apply light pressure to the surface of the muscles throughout the body. While most individuals will feel only light pressure, patients with fibromyalgia may feel increased pain and tenderness that is disproportionate to the amount of pressure that is applied.
The presence of myofascial “trigger points” can sometimes complicate the diagnosis of fibromyalgia. The term fascia refers to the dense fibrous connective tissue surrounding muscles. When fascia is injured, it “knots up” and creates what are known as trigger points. When touched, these trigger points are very painful and the pain radiates throughout the muscle and surrounding areas. The chronic muscle pain that results from these trigger points is known as myofascial pain syndrome. The pain is persistent, worsens over time, and can result in stiffness and difficulty sleeping. Much like fibromyalgia, myofascial pain syndrome can have a significant negative impact on an individual’s ability to live an active lifestyle. As a result of their overlapping features, myofascial pain syndrome may be misdiagnosed as fibromyalgia and vice versa. What is important to understand, however, is that trigger points for myofascial pain syndrome are not the same as tender points in fibromyalgia. Trigger points are the underlying cause of myofascial pain syndrome, whereas tender points are a defining symptom and at times a diagnostic requirement for fibromyalgia. Tender points do not present an underlying hard knot of muscle tissue as is typically present in a myofascial trigger point. Tender points have extreme tenderness and disproportionate pain when pressure is applied, but no hard muscular knots are present.
Headaches
The majority of people with fibromyalgia experience headaches. Migraine headaches are common, as are tension headaches. Migraines cause severe throbbing or pulsing in one area of the head, and may also be accompanied by nausea, vomiting, and sensitivity to sound and/or light. Migraines may last in duration for hours or even days. Tension headaches are typically widespread and moderately painful, and they are the most common type of headache. They are commonly experienced as dull, aching pain, or a sensation of tightness or pressure along the forehead, sides, or back of the head. Tension headaches can range in duration from as short as 30 minutes to as long as a week. For individuals with fibromyalgia, headaches often arise for no apparent reason. They often do not respond well to traditional headache medicines.
Cognitive Impairment / “Fibro Fog”
Individuals who suffer from fibromyalgia frequently report substantial cognitive impairment, a symptom so prevalent is has been coined “Fibro Fog.” Fibro fog is characterized by memory loss (both short- and long-term), difficulty maintaining focus and paying attention, and trouble locating the right words to speak while talking. In addition to the cognitive impairments, fibromyalgia patients may also experience dizziness, feelings of lightheadedness, and disorientation. These cognitive difficulties are all very troubling for fibromyalgia patients and can fuel feelings of anxiety and depression.
Depression & Anxiety
While many people will experience depression at some point during their lives, fibromyalgia patients often must deal with a heavy burden of the illness. Driven in part by the constant widespread pain and overwhelming fatigue associated with fibromyalgia, depression may also be exaggerated by constant headaches, sleep disturbances, and muscle pain. Depression in fibromyalgia can be very severe and is estimated to be present in up to 30% of patients at the time of diagnosis. Those patients who suffer from both depression and fibromyalgia have decreased quality of life and often modify their behaviors as a result, including self-imposed social isolation and decreased activity - actions that can feed the syndrome.
Anxiety often goes hand-in-hand with depression. Anxiety is a natural response of the human body to stress, both good and bad. When anxiety occurs under normal circumstances it can be beneficial to the body; however, when anxiety becomes excessive and sustained, it can become a debilitating disorder that prevents sufferers from carrying out normal daily activities. In addition to depression, many fibromyalgia patients also suffer from generalized anxiety disorder – a condition marked by sustained elevated levels of anxiety, excessive worrying, and tension, even when no stimulus is there to trigger such symptoms. Certain physical symptoms also accompany generalized anxiety, including fatigue, headache, muscle aches, difficulty swallowing, and irritability. Those who suffer from anxiety often suffer from panic attacks and unexplained feelings of inadequacy.
Irritable bowel syndrome (IBS) is characterized by severe abdominal cramping, changes in bowel movements, along with a host of other symptoms. The cause of most cases of IBS is not known, however some cases may result from an intestinal infection or be triggered by a nerve problem. Like fibromyalgia, research has shown that IBS may start following a stressful life event or result from the body’s impaired ability to process pain. IBS is common and affects one out of six people in the United States, with women affected more often than men at a rate of two to one. The primary symptoms of IBS include abdominal pain, a sense of fullness, gas, and bloating, and can range in intensity from mild to severe.
When compared to the rate of IBS in the general population (10%-15%), fibromyalgia patients experience an increased incidence of the condition. Some researchers have estimated that as many as 70% of fibromyalgia patients have IBS. Up to two-thirds of all IBS patients may also have fibromyalgia. Despite their common co-occurrence, it is unknown if the two conditions are causally related or if they merely occur together as a coincidence. Those who have both conditions usually have more severe symptoms and a poorer overall quality of life than those who suffer from either fibromyalgia or IBS alone.
Interstitial cystitis (IC) is a condition that is marked by frequent pain or discomfort in the bladder and pelvis. Symptoms vary from person to person and may increase in intensity as the bladder fills with urine, and after it is emptied. In addition to pain, people with IC may also feel the frequent urge to urinate. For women, their symptoms may worsen during menstrual periods or vaginal intercourse. The cause of IC is not known. But since many women who suffer from IC also have other conditions such as fibromyalgia or IBS, some researchers think that IC is merely the bladder’s response to a more generalized condition elsewhere in the body. The frequent co-occurrence of fibromyalgia and IC in many patients may be due to malfunctioning nerve signals. The fact that both conditions are much more common in women than in men also suggests that certain genetic and/or hormonal factors may contribute to their development.
Secondary symptoms of Fibromyalgia
A number of secondary symptoms are associated with fibromyalgia. They vary from patient to patient so much that it is nearly impossible to provide a comprehensive list. An abbreviated list of some of the more common symptoms is below:
The exact cause of fibromyalgia has yet to be identified, however a number of potential causes have been suggested. Genetic factors may play a role in the development of fibromyalgia, as the disease has been observed to cluster in families. In addition, many individuals with fibromyalgia report having been under extreme stress prior to the onset of symptoms. Furthermore, many people with fibromyalgia are often overweight or obese, an observation which also may indicate a causal association between body weight and/or diet and fibromyalgia. In addition to these potential causes, a number of events have been suggested as potential “triggers” that result in the development of fibromyalgia among predisposed individuals. No definitive evidence exists, however, which links them to the onset of the disease. These potential “triggers” include: accidents that result in physical trauma, physical and/or sexual abuse, illness, high stress levels, childbirth, and others.
Fibromyalgia is a condition that is very difficult to diagnose. In reality, its diagnosis is often achieved through the process of elimination. Doctors must first rule out a number of conditions that closely mimic the disease, including chronic fatigue syndrome, myofascial pain syndrome, and others. This often results in confusion and frustration for patients, as they shuffle from one specialist to another and undergo multiple tests and diagnostic procedures.
There are no laboratory tests that can be used, therefore the diagnosis of fibromyalgia can only be achieved by physical examination, patient history, and ruling out the presence of other similar conditions. Rheumatic diseases, such as rheumatoid arthritis and lupus can easily be ruled out by the presence of definitive clinical features characteristic to each condition. For example, patients with rheumatoid arthritis experience joint swelling, joint deformities, and specific abnormalities in particular blood tests. Patients with lupus present with rashes, generalized and widespread inflammation, and abnormalities in specific blood tests. Ruling out the presence of certain neurological conditions can prove to be more difficult, as many fibromyalgia patients may report feeling numbness, tingling, and burning sensations. However, ultimately the exclusion of neurological conditions is easily done, as most fibromyalgia patients do not show any abnormal findings when evaluated using standard neurological testing. The greatest difficulty in the diagnosis of fibromyalgia occurs when attempting to distinguish it from other functional pain disorders, such as TMJ, irritable bowel syndrome, and chronic fatigue syndrome. CFS and fibromyalgia have been estimated to co-occur in as many as 80% of patients, whereas approximately 70% of fibromyalgia patients also have irritable bowel syndrome. Approximately 40% - 70% of fibromyalgia patients also have TMJ. As such, there is a high frequency of mis-diagnosis, as the symptoms associated with these disorders are very subjective and physician interpretation may vary, leading some physicians to diagnose one disease when another might view the patient’s symptoms differently.
Moldofsky and Smythe proposed the first diagnostic criteria for fibromyalgia in 1977. These criteria included 1) the presence of at least 12 of 14 tender points and 2) non-refreshing sleep. In 1981, Yunus et al. proposed a revised, more formal set of criteria to diagnose fibromyalgia, which required aching, pain, and stiffness for a minimum of three months as well as the presence of at least five tender points. In addition, Yunus et al. required patients to have at least three of the following symptoms: decreased physical activity in response to symptoms, weather-related symptom aggravation, stress/anxiety-related symptom aggravation, sleep disturbances, fatigue/tiredness, anxiety, headaches, irritable bowel syndrome, swelling, and/or numbness. Finally, in 1990, the American College of Rheumatology (ACR) established official diagnostic criteria for fibromyalgia. These included the presence of chronic widespread pain and a minimum of 11 of 18 tender points. In addition, the attention and endorsement by the ACR finally gave much-needed recognition to fibromyalgia as an official clinical diagnosis.
The ACR diagnostic criteria for fibromyalgia were recently updated in 2010, in an effort to standardize the symptom-based diagnosis of the disease and ensure that physicians are using the same process to make a diagnosis. With this update, the tender point test was replaced with a widespread pain index and a measurement of symptom severity, known as the symptoms severity scale. The pain index is determined by counting the number of areas on the body where the patient felt pain within the previous week, and the checklist includes 19 specific areas. The symptom severity score is determined by patients’ rating the severity of three common symptoms – fatigue, waking unrefreshed, and cognitive symptoms – on a scale of zero to three (with three being the most severe). Additional points can be added for the presence of other symptoms, with a final score ranging from zero to 12. Under the new criteria, in order to receive a diagnosis of fibromyalgia, a patient would need to have seven or more pain areas and a symptom severity score of five or more; or, three to six pain areas and a symptom severity score of nine or greater.
In addition to the 2010 ACR diagnostic criteria, the Fibromyalgia Impact Questionnaire (FIQ) has often been used to help doctors evaluate fibromyalgia patients. Developed in the late 1980s, the FIQ was first published in 1991 and has since been translated into 14 languages. The questionnaire originally used a visual analog scale that required patients to place a slash on a 100 millimeter-long line to indicate the magnitude of their symptoms. Unfortunately, the questionnaire was difficult to score. It was worded in a way that made unfair assumptions about patients, and it failed to include important assessments of cognition, balance, and environmental sensitivity. In 2010, the FIQ was revised to correct these deficiencies, creating the “FIQR.” The FIQR consists of 21 questions, all of which are based on an 11-point numeric rating scale from 0 to 10, with 10 being the worst. The FIQR is organized to evaluate functioning, overall impact of fibromyalgia, and symptoms.
One of the main reasons that fibromyalgia is so difficult to treat effectively is the fact that despite years of research, the definitive cause (or causes) of fibromyalgia remain unknown. Advances in research and understanding of how the human body transmits and processes pain signals has led to the prevailing theory that individuals with fibromyalgia are unable to process pain signals normally. Research suggests that this may be the result of various chemical abnormalities in the brain. These chemicals, known as neurotransmitters, carry pain signals from one nerve cell to the next. When the body has excess neurotransmitters, it is easier for pain signals to reach the brain, which then relays the ‘painful sensation’ back to the body. Recent research studies have shown that fibromyalgia patients have disproportionate levels of pain-regulating neurotransmitters. This has led researchers to hypothesize that perhaps the origin of fibromyalgia for some individuals may be related to these chemical abnormalities in the brain.
In addition, relatives of people with fibromyalgia are eight times more likely to develop the syndrome than those who have no family history of it, which is suggestive of a possible genetic cause for fibromyalgia. Based on observational studies in fibromyalgia and their first-degree relatives, researchers have turned their sights to the human genome for clues as to what gene, or genes, may be involved in the development of fibromyalgia. In particular, genes that regulate the brain’s ability to transmit pain signals via neurotransmitters are of particular interest to researchers.