The Perception of Pain: Understanding Fibromyalgia
Web Paper 3
The Perception of Pain:
Similar to beauty, which has been said to be in the eye of the beholder, perhaps ironically pain is in the perception of the victim. Thus, throughout history, the victims, or patients, or clients, or invalids, or individuals experiencing pain have often also encountered difficulty communicating their pain to the medical community.
The case of Fibromyalgia, or Fibromyalgia syndrome (FMS), has been no exception. Although historians have noted that symptoms of Fibromyalgia have been documented as far back as biblical times, when Job complained of restless nights and tender joints, the medical community at that time had no name for his pain (1). The same holds true for Frida Kahlo, who is now thought to have suffered from posttraumatic Fibromyalgia (2). This diagnosis may explain Frida's poor response to the multiple treatments she received both in Mexico and in the United States of America (2).
Today, Fibromyalgia remains somewhat of a mystery. As recently as 1904, Sir William Gowers first coined the term fibrosis. The word, a compound of fiber and inflammation, was meant to describe the sore spots on patients with muscular rheumatism. However, later, when no evidence of inflammation could be found, the medical community reconsidered the validity of the terminology that had been used (3). Thus, while conducting studies on sleep, tender points, and widespread pain (4), medical community introduced the term Fibromyalgia in 1976. This new compound word combined fiber, muscle, and pain to more clearly define the condition at hand (3). However, it was not until 1990 that the American College of Rheumatology published the first criteria on Fibromyalgia (4).
Yet, despite advances in understanding and classifying Fibromyalgia, diagnosing and treating patients in pain remained and continues to remain a difficult task. Fibromyalgia is a chronic disorder that affects approximately three to six million Americans. A majority of individuals affected by Fibromyalgia are women of childbearing age, however, it does also appear in children, the elderly, and men. The cause of Fibromyalgia remains unknown (5). However, researchers have multiple theories as to how certain individuals end up with this type of pain. These hypotheses include genetics, injury or trauma, changes in muscle metabolism, and viral triggers (5). Widespread musculoskeletal pain, fatigue, soft tissue tenderness, sleep disturbances, and multiple tender points distinguish Fibromyalgia (5, 6). Tender points have been classified to refer to tenderness that occurs in precise, localized areas of the body. These areas include the neck, spine, shoulders, and hips, and are highlighted on the chart in the following link (7).
Diagnosing Fibromyalgia is also a difficult process, as there remains no laboratory test for determining whether or not a patient has the syndrome. Instead, doctors must listen to patient histories and self-reported symptoms. Doctors must also conduct a physical and manual tender point examination. The tender point examination is based on the criteria set forth by the American College of Rheumatology. In order to be diagnosed with Fibromyalgia patients must experience both “widespread pain in all four quadrants of the body for a minimum duration of three months” and “tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied (6)” (see figure in the following link) (7).
Unfortunately, it is often extremely difficult for many patients to receive a proper diagnosis. This is because many doctors know little about Fibromyalgia, and because the medical community as a whole still has a lot to learn about the syndrome (6). This also is caused by the fact that many symptoms of Fibromyalgia overlap with symptoms of other conditions. Thus, while patients can have more than one aliment, Fibromyalgia often goes un or misdiagnosed (6).
In both my research for this paper and personal experience with a brother who was diagnosed with Psoriasis, Vitiligo, Psoriatic Arthritis, and Fibromyalgia early in his childhood I have found the connection between Fibromyalgia and other conditions to be extremely interesting. A diagnosis of Fibromyalgia does not exclude the possibility for other diagnoses, just as other conditions do not rule out the possibility of Fibromyalgia. Often, in fact, it has been found that there are many conditions that often overlap with Fibromyalgia. These conditions include various forms of arthritis, lupus, chronic fatigue syndrome, migraine headaches, and a variety of autoimmune disorders.
Fibromyalgia is unique because it affects the central nervous system. Individuals with Fibromyalgia experience an abnormal amplification of pain due to atypical sensory processing in the central nervous system. Imbalances of chemicals and hormones in the brain confuse sensory messages thus causing pain information to be intensified. Essentially, the neurons of Fibromyalgia patients experience difficulty regulating pain and thus magnify it in error (6). Fibromyalgia suffers describe the pressure of a watch or necklace feeling like a “blowtorch” (8). However, the pain they experience may have nothing to do with the periphery. In other words, the watch or necklace does not actually have the pressure of a blowtorch, but rather that pain is misjudged internally. FMS patients would feel pain with or without input from an outside source, such as a necklace.
If individuals suffering from both Fibromyalgia and other related ailments experience pain both from the central nervous system and from the periphery, pain must be treated in multiple ways. It is often difficult for those who suffer from Fibromyalgia and other associated conditions to discern one type of pain from another (9). Thus, in my experience, holistic measures often best treat all of the symptoms of Fibromyalgia. After visiting the best specialists in the juvenile form of each of my brother's conditions, faithfully following their programs, attending group information sessions, and researching tirelessly, my brother's pain decreased only slightly, on a “good” day. Thus, my parents turned to a more holistic approach. My brother began receiving weekly massages, using hot wax tubs to soak his joints, working out with a specialist, sleeping on a specifically designed mattress, seeing a nutritionist, and following a holistic doctors plan. Although it took time to see results, slowly my brother began to find nights where he could sleep again, and to find days where he was not in excruciating pain.
Fibromyalgia pain is real. From the personal experience of looking into my brother's teary eyes while he promised that he was fine as my parents asked how he was feeling for the fifteenth time on any given “bad” morning, I can vouch for the fact that what he felt existed. Until recently however, it has been difficult to quantify that pain. In 2003, Dr. Daniel Clauw, a rheumatologist and professor of medicine at the University of Michigan utilized functional MRI scans in order to concretely prove that the pain of Fibromyalgia is genuine. In his study, Dr. Clauw worked with 16 suffers and 16 non-suffers. He placed slight pressure on each of their left thumbs and scanned their brains. Whereas the non-suffers showed little to no response, blood rushed to the pain perception area of the Fibromyalgia patient's brains. In general the medical community has come to accept Fibromyalgia (8). While this signifies a far leap from the days of Frida Kahlo, and even signifies progress from as recently as 1977, when researchers were warned that studying Fibromyalgia was a waste of time as the women complaining of the ailment were “crazy” (8), much more work needs to be done. In the future more research must be conducted in order to understand how individuals with Fibromyalgia perceive pain, and how to best treat pain that is amplified from within.
9. Interview with Ryan Rifkin. May 6, 2007.