Chapter 3: Fibromyalgia: The Elusive Fiend
Fibromyalgia is relentless. It can wrack your body with pain and drain your energy leaving you exhausted – physically and mentally. The ever-changing way in which it manifests itself can confuse not only you but your doctors as well, leading to frustration and a sense of helplessness. Fibromyalgia takes a toll on all involved – you, your friends, and your family. It can destroy relationships, careers, and bank accounts. Fibromyalgia is indeed a fiend, and an elusive one at that, as effective treatment can be very difficult in light of the fact that there is no known definitive cause to target.
Fibromyalgia presents a serious problem, and this chapter is devoted to discussing the extreme difficulties posed by fibromyalgia relative to its diagnosis, reputation within the medical community, and struggles with regard to the most effective treatment approach. This chapter will also touch on Americans’ perceptions of health care and how fibromyalgia fails to conform with what we have come to expect in terms of treatment from our medical system.
Fibromyalgia is difficult to both define and diagnose, given the wide spectrum of symptoms and co-morbid conditions that accompany it. In addition, fibromyalgia is often misdiagnosed with other diseases that add to the confusion. For many years, the medical community considered fibromyalgia to be a “whiners disease,” discounting patients’ symptoms and suggesting their pain was all in the head. (that ironically may prove to be true - research has demonstrated differences in the chemical processes in the brains of fibromyalgia patients relative to how pain signals are amplified and processed) Unfortunately, despite the formal recognition of fibromyalgia as a diagnosable condition by the American College of Rheumatology and the International Classification of Diseases, many providers continue to doubt its legitimacy as a true pathological condition.
Adding to the confusion and confounding the medical community’s understanding of fibromyalgia is the lack of easily defined and effective treatment strategies. Treatment of fibromyalgia is highly individualized; there is no “Magic Pill” that will work for everyone. What works for one patient may be totally ineffective for another, and may even make that patient’s symptoms worse. Unfortunately, those who are helped to a great extent by a particular therapy may celebrate the relief of their symptoms by telling others about their “cure,” unintentionally perpetuating confusion about effective treatments.
The general lack of understanding surrounding fibromyalgia creates a negative stigma about the disease and perpetuates negative attitudes toward those who suffer from it. People tend to doubt or even fear things they do not understand, and in the case of fibromyalgia, people’s attitudes toward those with the disease can be doubtful, harsh, and even condescending. Given that anxiety and depression are frequent symptoms associated with fibromyalgia, this kind of hard feedback from friends, co-workers, family members, and even health care providers can be crushing and can trigger new negative feedback loops.
The reality of fibromyalgia is that there is no cure. Unfortunately, this does not stop individuals from claiming to have found one! In addition, misdiagnosis is rampant, both for those with and without fibromyalgia. Many individuals with true fibromyalgia are often diagnosed as having a different disorder, while others who are diagnosed with fibromyalgia may in fact suffer from something quite different. Additionally, there is a very high incidence of comorbid (having additional clinical conditions at the same time as the primary) conditions with fibromyalgia, adding further complexity to an already complicated situation.
In addition, there is no recognized and accepted single “best treatment” – a reality driven by the fact that even the most effective treatments have a negative impact on a significant percentage of those who try them. The following point cannot be emphasized enough: What may work for one patient may not work for another, and may in fact make the other patient feel worse! This reality makes the Elusive Fiend a moving target, and the weapons for fighting him inconsistent from one warrior to another.
Symptom–Cause Interplay and Confusion
Many causal symptoms are associated with fibromyalgia. In other words, many of the symptoms of fibromyalgia appear to function in a causal role, i.e., they can both trigger fibromyalgia or appear after the onset of fibromyalgia. For example, depression can cause anxiety. Fatigue can cause depression. Sleep problems can cause fatigue. Deep, persistent pain can cause sleep problems. All of these things can be both caused by stress and can cause stress to occur. These symptoms also frequently come and go, or “wax and wane,” in seemingly random fashion. As the course of fibromyalgia unfolds over time, it often becomes extremely difficult for patients to pinpoint what came first in different symptom / cause loops. In effect, a “chicken and the egg” scenario develops which can make determining effective approaches to treatment difficult. This can lead to increased confusion and further escalations in the overall negative impact on the patient’s life.
All of these symptom-cause relationships are extremely complicated and difficult to understand. They can be impacted by a wide variety of factors, including stress, diet, vitamin deficiencies, exercise, obesity, menstrual cycle, weather, pharmaceutical side effects, chemical sensitivities, and environmental factors. Determining the relationship between primary and secondary symptoms – key causal factors and negatively-impactful environmental and life factors – can often prove to be more complicated than calculating rocket trajectory for a NASA moon mission. At least with NASA, the laws of physics are the same for everyone! In fibromyalgia, there are no clinical standards; everyone’s fibromyalgia is unique. The manner in which these factors interplay will be different for you than it is for others.
Learn more about these frequent causal symptoms -
| Anxiety | Stress | Depression | Fatigue | Sleep |
Many symptoms associated with fibromyalgia are not isolated. They interact with each other, feeding off of each other in a negative manner. This type of relationship is known as a negative feedback loop. Negative feedback can best be described as a cycle in which an event leads to another event, which leads to another event, which leads back to the original event and so on. The cycle continues until something happens to make it stop. For example, an individual with fibromyalgia may suffer from sleep impairment. This inability to sleep adequately results in excessive daytime fatigue. This excessive fatigue aggravates the persistent pain that the individual experiences from their fibromyalgia. Due to the worsening pain, the individual may not be able to sleep well. This cycle is an example of a negative feedback loop, and will not cease until something occurs to disrupt it. That “something” might be a new treatment regime that incorporates massage therapy, which addresses both the fatigue and relieves the excess pain, thereby improving sleep quality.
Causal symptoms interact both with other symptoms and other causal factors. As is illustrated in the above example, this interaction creates, fosters, and strengthens negative feedback loops – a scenario in which a vicious circle is created. Furthermore, the interaction of negative feedback loops and causal factors can lead to overlapping loops, loops within loops, or loops with shared symptoms that impact other symptoms. The ultimate result of these interactions is a downward spiral that may cause fibromyalgia syndrome to worsen over time. Fibromyalgia is NOT by definition a degenerative disease, however the causal impact of symptoms and triggers can, if left unrecognized and untreated, lead to a debilitating downward spiral and a decline in the quality of life for the fibromyalgia patient.
The relationship between symptoms and causal factors is multi-layered, inconsistent in frequency and intensity, and difficult to define. All of this can lead fibromyalgia sufferers to ask: why is the Fiend so elusive? One reason lies in the fact that multiple negative feedback loops can function simultaneously, often with shared causal factors. In addition, the form and function of symptomatic negative feedback loops will vary between patients, just as symptoms will. This makes generalizations and precise definitions relative to the overall syndrome of fibromyalgia next to impossible. In addition, this increases patients’ confusion and discouragement, both of which can make decisions related to treatment even more difficult than they already are. Again, the Elusive Fiend at work.
Another fact that makes fibromyalgia so hard to pin down is that as negative feedback loops progress, they can trigger or amplify secondary symptoms, which in turn may lead to the formation of additional negative feedback loops. Certain environmental factors can also serve the same function – though at times have the opposite effect. Take Seasonal Affective Disorder (SAD) for example. Seasonal Affective Disorder can lead to increased depression that feeds into other symptoms, such as pain and poor sleep; however, as the seasons change and spring brings with it improved weather and sunshine, it can lessen the impact of SAD and thus foster improvements in pain and sleep quality.
It is important to note that negative feedback loops are not by definition a diagnostic criteria associated with Fibromyalgia, but rather are a commonly observed phenomenon. Significant research relative to causal factors related to linked conditions does provide some research evidence to support the concept of negative feedback loops and their function as an amplifier in Fibromyalgia but more specific research is needed.
The U.S. medical system is highly fragmented and therefore simply not designed to effectively diagnose and treat patients who suffer from a syndrome such as fibromyalgia. As the diagnosis of fibromyalgia can only be achieved by excluding the presence of other conditions, different physicians may take different approaches to reach their diagnosis. Furthermore, if a particular practitioner is in the school of those who doubt the legitimacy of fibromyalgia as a true diagnosis, they may bypass a diagnosis of fibromyalgia altogether in favor of treating each individual symptom.
A large percentage of doctors lack an in-depth understanding of fibromyalgia and the most effective options for treating it. This frequently leads to a “generic” approach, i.e., “throwing pills at it.” This approach is not a cure, however, and frequently it can serve to make things worse for the patient. Pharmaceutical options are often effective; however, even in the best case, symptoms are only partially alleviated. Improvement is maximized if the pharmaceutical drugs can be supplemented with other treatment options.
Another aspect of the U.S. medical system that often precludes individuals from seeking certain treatments is health insurance. Many insurance providers do not grant approval for certain treatments, such as chiropractic or massage therapy, and even certain medications may not be covered by some insurance plans. Therefore, if a particular treatment approach is not “approved” by a patient’s insurance company it may never be discussed as an option for the patient. This can have huge ramifications for patients who may actually receive benefit from those treatments. A massive problem is created when insurance restrictions and required approvals drive treatment options, rather than the fibromyalgia patient and their care team.
Admittedly, insurance companies face an uphill battle when trying to structure a system for the treatment of fibromyalgia in a manner that is both effective for the patient and viable within their business model. Insurers must deal with the reality of trying to manage the treatment and costs associated with millions of patients, all of whom require individualized approaches and therapies. There is no question that insurers want to be effective when approving treatments for fibromyalgia; they do. Effective treatment is not only prudent from a patient’s standpoint, but also from a cost standpoint. Unfortunately, the most effective proven treatment approaches for fibromyalgia are multi-disciplinary in nature, and health insurance companies are simply not structured to manage this kind of approach. Although some insurers are expanding their availability of covered services to included complementary and alternative therapies, such as acupuncture, chiropractic, and nutritional therapy, these offerings are not universal and are by no means standard across the broad range of insurers. Furthermore, recent economic downturns and other personal financial factors have resulted in many individuals having to scale back on the scope of their insurance plans. Some people forego health insurance altogether. Without health insurance, affording good-quality, comprehensive health care in the U.S. is almost impossible.
Insurance issues aside, doctors are in an untenable position. Due to the fact that a multi-disciplinary approach to the treatment of fibromyalgia is typically the most suitable, it is nearly impossible for any single health care provider to be effective in guiding and managing a patient’s overall treatment on a long-term basis. To expect a single doctor to be capable of this is to simply ignore the realities of both fibromyalgia and the medical system. No doctor can be an expert in general medicine, chiropractic, massage therapy, dietary nutrition, alternative medicine, behavioral focused medicine and all of the many other medical specialties that can play into treating fibromyalgia. It is not physically possible for one individual to be the best in all of the different medical specialties that someone fighting Fibromyalgia will want on their team. This scenario drives the reality of why a self-management approach provides the most effective treatment. The patient must take responsibility for directing and coordinating the efforts of all of their care providers. Self-Management is a team approach.
As can be imagined, when coupled with the variable symptoms and the overwhelmingly individualistic nature of the disease itself, fibromyalgia is a nightmare for the medical system. The lack of a one-size-fits-all approach to treatment, the need for treatments that are not often covered by routine health insurance, and the relentless nature of the disease itself makes fibromyalgia extremely difficult to both endure and to manage.
Consumers and patients have been led to be believe – and have come to expect –
that there is a “Magic Pill” to cure almost every ailment out there. This cultural phenomenon is unfortunate, as it gives many individuals a false sense of security and an inaccurate understanding of how medicine truly works. The unfortunate reality is that medical science and doctors are neither as advanced nor as capable as most Americans believe them to be. This is not a failure on the part of the medical community; it is a failure of expectations to remain aligned with reality. The doctors on TV can cure anything (and have good hair while doing it) - so surely my doctor should be able to make me feel better.
This is particularly the case for fibromyalgia. There is no known cure for fibromyalgia – only treatments geared toward addressing its symptoms, and many of those treatments are only partially effective, or effective in only a percentage of patients. Magic Pill Syndrome leads patients to believe that one particular medication or therapy can result in a “cure” for their disease when no such cure exists. For fibromyalgia patients, this belief drives unrealistic expectations, feeds depression and anxiety, and contributes to the frequent confusion and lack of understanding among family members. These false expectations are a big issue and a major hindrance to people with fibromyalgia, and make a very complicated disease even more complicated to manage effectively.
It is vitally important for all fibromyalgia patients to accept the reality of their condition in order to move forward with effective treatment. There is no “magic pill.”
The U.S. Food and Drug Administration (FDA) recently approved the drug Lyrica for the treatment of fibromyalgia. For many Americans who do cursory research and depend solely upon their doctor’s guidance with regard to treatment, they may interpret this FDA approval as meaning that the U.S. government has certified Lyrica as a cure and thus it is the “magic pill” they are seeking. Unfortunately, this is not the case. Lyrica is not a cure for fibromyalgia, and for those patients in whom it is most effective, it only decreases fibromyalgia symptoms by about 40%. In other words, Lyrica may help, but it is certainly not a “magic pill.”
Effective Treatment - Overwhelming Options
There are many suspected causes of fibromyalgia, and they vary from patient to patient. These variations make the identification and evaluation of overlapping conditions extremely difficult given the time constraints modern realities place on the medical profession.
Among the theories surrounding effective treatment strategies for fibromyalgia, perhaps the most consistent among experts is that a multifaceted approach is most likely to yield sustainable long-term results. Most experts agree – and research tends to support – that the most effective treatment for fibromyalgia patients will involve a combination of pharmaceutical therapy, dietary supplements, alternative therapies, dietary modification, and regular exercise. It is important to note, however, that what works for one patient may not necessarily work for another. Furthermore, each aspect of treatment has a large number of options and no single care provider is going to be an expert in all of them. Finally, many treatment options present interaction challenges. Certain drugs may interact with other drugs or dietary supplements. Dietary factors may have an impact on how the body metabolizes and uses the drugs themselves. In addition, personal factors, such as body weight and mental status may also play a role in the effectiveness of the various treatments. Determining the combination of treatments that is most effective for a particular patient involves patience, dedication, and a process of trial-and-error.
As noted in the diagram to the left - multiple negative feedback loops may function simultaneously feeding an ongoing decline in overall health that drives a worsening of fibromyalgia symptoms.
Patients should utilize diagrams like this to chart and document how fibromyalgia is playing out in their own bodies. Nothing fancy is required - crude diagrams hand-drawn can serve the same purpose as fancy computer generated graphics. The important thing is to build a comprehensive base of understanding relative to exactly how fibromyalgia is being presented in your individual case.