Chronic pain—once considered just a symptom, but now a disease in its own right— has been estimated to affect between 30-50% of the world population. It has become an important public health problem costing society in excess $635 billion annually due to health care costs and lost productivity. Given the lack of media attention and social awareness campaigns, it may be surprising that more Americans experience chronic pain than are diagnosed with diabetes, heart disease, and cancer combined.
Relatedly, neuropathic (pertaining to nerves) pain—a subset of chronic pain conditions—is also a common health burden affecting approximately 7% to 10% of the general population. Fibromyalgia is now one of the most common chronic pain conditions in America. According to the 2012 National Health Interview Study, nearly 4 million adults in the US meet criteria for fibromyalgia and of these, more than 55% of those under the age of 65 reported inability to work due because of it. Despite this, fibromyalgia remains a controversial diagnosis in which most sufferers have experienced years where their providers, loved ones, and colleagues did not believe how crippling their pain and fatigue was. Many are told by their primary care providers that their pain is “all in their head,” and some are further stigmatized by being accused of faking their symptoms. Treatment for fibromyalgia typically entails a combination of medications, behavioral changes, and complimentary-alternative medicine (CAM) approaches that for many patients seem insufficient.
This article presents an overview of fibromyalgia. It is intended that this article will serve to help educate patients diagnosed with this often-disabling condition, while also being appropriate for them to share with their loved ones. This article isn’t intended to replace proper medical consultation or care and all patients are encouraged to discuss their medical concerns with their primary care physician.
Fibromyalgia is characterized by chronic widespread pain that is typically associated with a variety of other symptoms to include profound fatigue, sleep disturbances, cognitive difficulties (“fibro fog”), stiffness, and co-occurring psychological complaints (e.g., depression). Determining the precise biological causes of fibromyalgia have challenged researchers for decades. However, advances in medical technology continue to shed new light on its probable causes.
Genetics. It is commonly understood that genetics plays a role in many medical (e.g., diabetes) and psychiatric (e.g., bipolar disorder) disorders. Similarly, our understanding of nerve pain suggests that there likely exists a genetic component to the condition. It is generally believed that fibromyalgia, for instance, emerges in an individual who is genetically predisposed to neuropathic pain who then encounters the variety of environmental factors necessary to elicit chronic neuropathic pain. Some preliminary studies examining neuropathic pain in twins has suggested a 37% heritability risk, while similar research on fibromyalgia has shown that first-degree relatives of people diagnosed with fibromyalgia are eight times more likely to also be diagnosed with the condition.
Unhealthy neurobiological changes. The human body is genetically predisposed to produce blisters when exposed to certain conditions; in this sense, an environmental factor activates a genetic predisposition. In the case of a blister forming when exposed to friction or extreme heat, this is an adaptive occurrence done to protect injured tissue. Relatedly, when there is injury or possible injury to skin, organs, muscles, or nerves, the human body is genetically predisposed to garner its arsenal of defensive agents (e.g., white blood cells, histamine). Unfortunately, a series of unhelpful neurobiological changes can occur because of even relatively minor injuries. With tissue injury, certain inflammatory mediators enter the central nervous system (CNS) to create a normal inflammatory response. It has been suggested that if this inflammatory response is excessive and/or not treated quickly, CNS tissue damage may occur that then causes the neuroendocrine, neurotransmitter, and neurosensory dysfunction that leads to the development of central sensitization. For instance, some of the unhealthy changes observed with neurotransmitters generally relates to changes in how much of a pain-associated neurotransmitter is in the body.
Central sensitization. The development and maintenance of chronic pain is associated with a condition in the nervous system called central sensitization. Centralized sensitization is characterized by heightened sensitivity to pain (hyperalgesia) as well as heightened sensitivity to touch sensations (allodynia); in this sense, it is as if the “volume control” setting for incoming painful and nonpainful stimuli is broken. Historically, patients presenting with fibromyalgia-related symptoms have had a difficult time convincing their physicians of the legitimacy of their complaints and this was due, in no small part, to the absence of proof of the hypersensitivity they described. Advances in medical technology have allowed the research community to “catch up” to what was being seen in outpatient clinics. For instance, functional magnetic resonance imaging (fMRI) has allowed researchers to confirm the symptoms of central sensitization described by patients as well as identify the areas of the brain contributing to its development and maintenance. Some of the characteristics we see with central sensitization include: chronic pain lasting well beyond injury recovery period, history of failed interventions, and likely association with unhealthy reactions to pain. Central sensitization can also lead to sensitivities to other sensory inputs such as light, temperature, sounds, and odors.
Like other medical disorders before it, the cluster of symptoms now referred to as fibromyalgia have been previously identified under different diagnoses. Historically, this syndrome has been subsumed under diagnostic labels such as “psychogenic rheumatism,” “fibrositis,” and “myelasthenia.” Ultimately, while fibromyalgia was first recognized to some extent in the early 1900s, the American College of Rheumatology (ACR) did not establish its diagnostic criteria for the condition until 1990.
These original guidelines defined fibromyalgia as 1) chronic widespread pain in all four quadrants of the human body, and 2) tenderness upon palpation of at least 11 of 18 specified tender points. At the time these guidelines were established, they were intended only to be used for research studies and not for diagnosing patients being seen in outpatient settings. However, these guidelines were quickly adopted in medical settings which may well have done patients a tremendous disservice because the 1990 ACR guidelines failed to really capture the complexity of fibromyalgia. One of the biggest complaints about these original guidelines is that it doesn’t account for the variability of symptoms. Fibromyalgia symptoms present with an irregular intensity such that “flare ups” will often unpredictably occur; this reduces the benefit of “absolutist” guidelines.
Since then, new guidelines have been accepted. The most recent of which were adopted in 2016 by the American College of Rheumatology. These new guidelines state that patients should be diagnosed with fibromyalgia, regardless of other additional diagnoses, when they report:
1) Presence of generalized pain in at least 4 of 5 regions;
2) Symptoms have been present at a similar level for at least 3 months;
3) A widespread pain index (WPI) in 7+ areas of the body (e.g., shoulder, upper/lower arms, hips, upper/lower back); and
4) A symptom severity (SS) scale score of 5+, or a WPI of 4 – 6 and SS scale score of at least nine.
One of the challenges with diagnosing a patient with fibromyalgia is that it can be hard to distinguish it from other medical conditions. For instance, the three main symptom categories reported by patients with fibromyalgia are pain, sleep disturbances, and fatigue. Additional symptoms common to fibromyalgia include headaches, irritable bowel disease, cognitive disturbances, and weight change. Many of these same symptoms—especially fatigue and sleep disturbances—are also typical in other conditions as well such as depression, hypothyroidism, inflammatory rheumatic disease, Lyme disease, and Gulf War syndrome. For this reason, patients suspected of having fibromyalgia will often complete a variety of laboratory tests (e.g., thyroid function tests, a Lyme titer, rheumatic profile) and possibly imaging studies as well (e.g., MRI or CT scans.
Treatment goals in fibromyalgia disease management are to reduce pain, increase restorative sleep, and improve overall physical function. Medical management of fibromyalgia involves employing a multi-prong approach which typically includes medication, nonpharmacological approaches, and behavioral health. It’s important to realize not all physicians use this multi-faceted approach, and some may overly rely on medication management. Doing so is unlikely to be effective and all too often the patient will reach a point where they have exhausted the “medical” options for treatment. Most patients who achieve the best results—which is not to imply resolution of symptoms or elimination of flare ups—use a combination strategy involving medication and nonmedication-based treatment options.
Diet. In addition to the other symptoms mentioned previously, many fibromyalgia patients also suffer from stomach problems as well (e.g., constipation, acid reflux). While no one knows exactly why this is the case, some researchers believe that dietary sensitivities may play a role. For this reason, some doctors may recommend a modified diet that excludes gluten and other foods shown to promote inflammation. One study, for example, found that a gluten free diet resulted in decreased pain, fatigue, depression, and migraines in fibromyalgia patients while resuming a gluten-based diet caused these symptoms to worsen. Other studies have looked at how nutritional deficiencies in things like magnesium, omega-3 fatty acids, and certain vitamins may contribute to increased inflammation, pain, and “fibro fog.”
Exercise. One of the most consistent evidence-based nonmedication treatments for fibromyalgia is exercise. Aerobic exercise of moderate intensity two or three times per week, combined with strengthening exercises, is likely to produce significant reductions in pain, tender points, and depression, in addition to improved well-being. Unfortunately, people with fibromyalgia often find exercise worsens their pain and fatigue. For this reason, swimming and other forms of aquatic exercise may be a better option for many patients.
Medication. A variety of medications and medication classes (e.g., NSAIDs, opioids, tricyclic antidepressants) have been suggested for the treatment of fibromyalgia. Some, such as cannabis- or opioid-based medications, have limited evidence for their use in the treatment of fibromyalgia when considering potential benefits versus risks. The only FDA-approved drugs specifically approved for fibromyalgia treatment are Lyrica (pregabalin), Cymbalta (duloxetine hydrochloride), and Savella (milnacipran HCI). Most studies show that all three drugs can be effective for treating fibromyalgia, and that which medication is recommended to a patient should be based on tolerability and whether more targeted medication is needed for sleep problems, fatigue, or mood.
Behavioral health treatment. Whether encouraged to by their primary care physicians or a specialty clinic, most patients with chronic pain will at some point be referred to see a mental health provider to help treat their chronic pain. Realistic treatment goals of behavioral health treatment for chronic pain include: improving sleep quality, increased use of active coping behaviors, reducing unhealthy coping strategies, improving mood, and eliminating unhelpful thoughts about fibromyalgia. It’s important to remember to focus on realistic goals. Complete elimination of pain, while certainly desired, is not likely with fibromyalgia. It is far more likely that therapy will help reduce the frequency and severity of flare-ups.
Psychotherapy for chronic pain primarily uses a cognitive behavioral approach. The most common therapy used is cognitive behavioral therapy (CBT) and this remains the standard behavioral treatment for chronic pain. A related approach is acceptance and commitment therapy (ACT). CBT is based on the idea that how we see ourselves, others, and the world influences our reactions to life events. It is our perspective of things that defines how events affect us. CBT focuses on identifying and changing unhelpful beliefs and behaviors. For instance, the technique of “cognitive reframing” might be used to reduce fear anxiety and catastrophization and would be combined with increasing engagement in healthy behaviors. Another example of how CBT might be used in treating chronic pain relates to improving the quality of a patient’s sleep since most fibromyalgia patients suffering from insomnia.
Fibromyalgia has been one of the more controversial rheumatological disorders despite having been identified in the early 1800s as “muscular rheumatism” and then later as “fibrositis” in 1904 by the neurologist Sir William Gowers. Many patients struggle for years before receiving a proper diagnosis and many report feeling as though their medical providers—as well as significant others, friends, and co-workers—believe their symptoms to be “all in their head.” For this reason, it is vitally important that patients take the time to educate themselves, and maybe their loved ones as well, about fibromyalgia.