Fibromyalgia presents a diagnostic challenge, with its elusive nature stemming from both its symptoms and stigmas that exist among doctors regarding the disease
It begins with intense pain of unclear origin, accompanied by growing fatigue and difficulties in maintaining concentration. These pains come and go over time, but do not disappear. If you’ve found yourself navigating from one doctor to another without receiving a clear diagnosis, and if your descriptions of your symptoms are met with skepticism, you could be suffering from fibromyalgia.
Fibromyalgia is a syndrome characterized by chronic pain in different parts of the body, sleep disturbances, physical fatigue and symptoms related to thinking and memory. It’s a common disorder, affecting an estimated 2 to 4 percent of the general population, with two-third of the sufferers being women. Nevertheless, defining the disease, its underlying causes, methods of diagnosis and treatment, and at times, its very existence, remain a matter of an ongoing medical and academic debate.
Since the symptoms of fibromyalgia are not unique to it, but are also characteristic of many other conditions, it is very difficult to diagnose it, and often years pass from the appearance of the first symptoms until a clear diagnosis is reached. During these years, the patient suffers from unexplained pains, and in many cases does not receive proper treatment. Until recently, many professionals claimed that the disease “does not exist at all”, and the presence of psychiatric symptoms, mainly depression and anxiety, which are common among those afflicted by the disease, reinforces this prevailing perception.
The story of singer Lady Gaga, who also battles fibromyalgia, illustrates this well. In 2016, prior to her diagnosis, she was documented saying - "I just think about other people who have maybe something like this, that are struggling to figure out what it is, and they don't have the money to have somebody to help them… What the hell would I do?". Years later, after being diagnosed, she said in an interview with Vogue, the fashion magazine - “I get so irritated with people who don’t believe fibromyalgia is real… People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”
The 1990 definition of the disease by the American College of Rheumatology has changed significantly in 2010. A map of the sensitive points on the body according to the old definition | VectorMine, Shutterstock
What Causes Fibromyalgia and How is it Diagnosed?
The cause of fibromyalgia remains unknown. In the past, many physicians attributed its symptoms to a psychogenic disorder, that is, a disorder stemming solely from a mental condition. This outdated perception was later refuted, and in the 1990s, fibromyalgia was recognized as a disorder of pain-regulation, heightened pain sensitivity and hyper-responsiveness originating in the central nervous system. However, a clear explanation for the disease’s biological basis is still lacking, and research into the subject continues.
The diagnostic criteria for fibromyalgia have undergone a revolution in recent years. In 1990, the American College of Rheumatology defined fibromyalgia as widespread pain felt both above and below the waist, and on both the right and left sides of the body. This pain includes sensitivity in at least 11 of 18 common pain points in the body (known as “tender points”).
Twenty years later, in 2010, the organization drastically changed the definition of the disease. According to the new criteria, the disease doesn’t necessarily cause pain in the tender points. It is diagnosed based on two assessment indicators: one that evaluates the pain’s intensity and nature, and another assessing additional fibromyalgia symptoms (such as fatigue and cognitive symptoms). In both assessments, the patient must meet a certain threshold in order to be diagnosed with fibromyalgia. In 2016 the criteria were slightly updated, with the addition of a requirement for the pain to appear in four out of five main body areas. This change was made to rule out pain disorders related to specific body areas. The change in the criteria simplified the definition of the disease, and consequently, the number of diagnosed fibromyalgia patients increased significantly.
But defining the disease was not enough. An Israeli study published in 2018, conducted by a team of researchers headed by Prof. Howard Amital from Sheba Medical Center, and with the assistance of Maccabi Healthcare Services, showed that the average time required for a fibromyalgia diagnosis from the onset of symptoms is about six years, and the average time from diagnosis to treatment is almost four years. The study also found that fibromyalgia patients tend to switch their attending physician quite frequently, partly due to frustration over the lack of diagnosis. Other studies have shown that the delay and inaccuracy in diagnosing the disease result from several factors. Physicians may not be familiar with the updated diagnostic criteria or may find it difficult to recognize the clinical manifestations of the disease or differentiate it from other conditions with similar symptoms. The last factor is especially important - doctors may hesitate to diagnose fibromyalgia, fearing they might overlook another underlying cause of the patient’s pain. Furthermore, the presence of depression and anxiety, which often accompany the disease, coupled with the stigma and disregard still unfortunately associated with the treatment of individuals grappling with mental disorders or difficulties, can “mask” fibromyalgia, leading doctors to dismiss the patient’s complaints.
In the last 30 years there has been a revolution in the approach to the disease, from a disease “whose existence was doubtful” to a disease in every respect—with well-defined symptoms and proven treatment. This revolution has also been expressed through the medical literature, which today includes a much larger number of scientific publications on the disease. One of the interesting findings described in the abovementioned Israeli study is that the older the attending doctor, the more time he or she requires to diagnose fibromyalgia. For example, the time to diagnosis for doctors born before 1955 was twice as long as for doctors born after 1960. This difference probably reflects the increased awareness of the younger generation and the adoption of advanced approaches to the nature of the disease.
About two-thirds of fibromyalgia patients are women. A young woman experiencing pain | Geobor, Shutterstock
How Is Fibromyalgia Managed?
Today, fibromyalgia treatment primarily revolves around lifestyle changes and symptom-focused pharmaceutical interventions. Physical activity, psychological therapy, good sleep hygiene, proper nutrition, maintaining a healthy body weight and an overall healthy lifestyle can alleviate the symptoms of the disease. Concurrently, patients receive medication, such as pain relievers and drugs to address anxiety and depression.
It's important to note that there is no single, universally effective treatment or method for fibromyalgia. Without undermining the importance of the existing pharmaceutical treatments, clinical experiments that examined their effects have demonstrated clear but only modest improvements in managing the condition’s diverse range of symptoms. Cognitive behavioral therapy (CBT), which is considered to be a targeted and relatively short-term treatment, may enhance mood and reduce the impact of the condition on daily life, but it likely doesn’t significantly alleviate the pain experienced by patients.
An up-to-date review of the relevant scientific literature suggests that the best approach to help patients is to combine several different tools for managing the disease, according to the specific symptoms an individual patient experiences. From a diagnostic perspective, it’s extremely important to raise awareness about the condition and its symptoms both among the general public and the medical community. Enhanced awareness can expedite diagnosis and facilitate the development of more effective treatments.