The answers to the following questions were provided by Robert Bennett, MD, FRCP; I. Jon Russell, MD, PhD; Patrick B. Wood, MD; and Daniel Clauw, MD. These are their independent views and not necessarily those of NFA or Pfizer. The information provided here is for general informational purposes only, and not for diagnosis. You should always consult your Health Care Provider for any questions that may relate to you.

GENERAL

What is the most important thing a person with fibromyalgia should know? (Answered by Patrick Wood, MD)

There are a variety of things that people with fibromyalgia should be aware of that may impart a sense of hope. To begin with, they need to know that their experience of symptoms is the result of a valid medical condition and not simply the product of their imagination, i.e. not “all in their heads.” You are not alone: while the symptoms may vary among individual patients, the pain is shared by millions of people around the world. Effective treatments are available to relieve much of the suffering, which include a variety of self-care strategies (e.g. stretching and exercise, lifestyle management, and good sleep hygiene) that may empower a patient to help him- or herself. Finally, strides in our fundamental understanding of the disorder are being made at an ever-increasing pace. With new understanding comes meaningful hope for more effective treatment.

What is science revealing about the pathophysiology of fibromyalgia? (Answered by Daniel Clauw, MD)

That fibromyalgia, like most diseases, occurs in part because of the genes that individuals are born with (that make them more susceptible to an illness), and in part because of what they are subsequently exposed to over their lifetime. With respect to environmental exposures, different types of “stressors” such as infections, trauma, etc., seem to be capable of triggering or worsening these illnesses.

Once an individual has fibromyalgia, a primary problem seems to be that the “volume control” for how the individual processes pain is set too high. Thus, fibromyalgia patients experience pain throughout the body (e.g. the muscles, bones, joints) typically not because there is some damage or inflammation in that region of the body, but because the pain signals from that region of the body are somehow amplified, or not appropriately filtered. The drug treatments for fibromyalgia seem to work by turning down this volume control setting.

SYMPTOMS

Why do people with fibromyalgia have pain and how is it unique from other pain disorders? (Answered by I. Jon Russell, MD, PhD)

We currently believe that people with fibromyalgia have a low pain threshold and experience as pain many normal sensory signals from the nerves—signals that a normal person would not perceive as pain. “Pain threshold” is defined differently from “pain tolerance.” People with fibromyalgia have a high tolerance for pain because they experience so much pain and have adapted to it somewhat. A pain threshold is something like the water threshold of a dam; if there is rain and the reservoir begins to fill, more water will go over the top if the dam is low than if the dam is high. Similarly, in fibromyalgia, a touch, a squeeze, or just sitting on a chair can feel painful though those things would not be painful for a healthy normal person with a higher pain threshold. Another way to illustrate that is to imagine a microphone at a radio station and two radio receivers in different houses. At the station, an Irish lullaby is being sung and in one house it sounds lovely. In the other house, the volume setting is turned way too high. The screaming sound from that second radio is terrible to hear. The radio signal for both radios is the same; the only difference between the normal radio and the screaming one is the volume setting. The “volume settings” for pain perception depend on the level of chemicals in the spinal cord and in parts of the brain. The chemicals are not at a normal level, so they seem to amplify or fail to control the nerve signals coming from the body, changing them from normal sensations to pain.

The pain of fibromyalgia is different from the pain of an injury, such as a broken bone. With the broken bone, the perceived pain comes from damaged tissue so the message is a true one. In fibromyalgia the tissue is not damaged, but the perceived pain is as bad as the broken bone pain—or even worse. The difference is that the message is not true. When the fibromyalgia patient feels a stabbing or aching pain like a knife stabbing, a look at the tissue will reveal that the message is false. That doesn’t make the pain feel any better, but the lesson is important to understand. The abnormal chemical levels in the spinal cord area are changing, amplifying, or failing to control the message.

The person who has the broken bone can see what the problem is, while the person with fibromyalgia cannot. The person with the broken bone knows that the pain will get better with time, but the person with fibromyalgia has the same pain day and night for years. Add to the mix the poor sleep experienced by the person with fibromyalgia. One can better handle discomfort during the day if one can sleep at night. When there is hope of improvement and strong support from relatives and friends, as the person with the broken bone will receive, it is easier to take the pain and limitation. On the other hand, family and friends sometimes become suspicious or even reject the person with fibromyalgia. Self doubt can eventually come as well.

DIAGNOSIS

Is it possible to diagnose fibromyalgia? How is the diagnosis made? (Answered by Robert Bennett, MD, FRCP)

The current diagnosis of fibromyalgia is based on criteria that were reinforced by the American College of Rheumatology in 1990. It is based on a history of pain involving the 4 quadrants of the body and the finding of pain on pressure in at least 11 of 18 designated tender points, in addition of a chronic widespread pain for at least 3 months. An important proviso of these 1990 criteria is that fibromyalgia is not a diagnosis of exclusion. In other words, a physician does not have to do multiple blood and imaging tests in order to confirm that fibromyalgia is indeed the correct diagnosis. On the other hand, many fibromyalgia patients do have other conditions that are commonly associated with this disorder and it is important that these be appropriately evaluated as part of the initial workup for fibromyalgia diagnosis.

Physicians often rely on their own experience in treating fibromyalgia patients. It has been evident for several years that many patients with widespread pain and other typical features of fibromyalgia do not fulfill the tender point criteria. Several recent reports have shown that pain on palpation at just 3 or 4 tender point locations may suffice to confirm a fibromyalgia diagnosis. Other investigators have used a blood pressure cuff to determine the pain threshold. One group has used a pressure cuff around the calf muscles, which is slowly inflated until pain is experienced. It is anticipated that within the next few years one of these, or a similar method of measuring pain pressure threshold, will be incorporated into the diagnosis of fibromyalgia.

What is “post-traumatic” fibromyalgia? (Answered by Patrick Wood, MD)

A person who develops the symptoms of fibromyalgia following a physical trauma (e.g. a motor vehicle accident or a fall) may be said to have “post-traumatic” fibromyalgia. While not an official diagnostic category, the label helps to distinguish a patient whose symptoms develop following physical trauma from one in whom symptoms develop under different circumstances, such as following an infection or perhaps more slowly over time. This, in turn, may inform a patient’s medical evaluation and the manner in which the symptoms are managed.

What does it mean and why is it important for a patient to create a “health care team?” (Answered by Daniel Clauw, MD)

Most patients with fibromyalgia have had pain, fatigue, memory problems, and a number of other symptoms for years. As a result of having symptoms for so long, in addition to addressing their symptoms by using drugs, we also need to address all that has happened to their lives as a result of having this condition for so long. Often the longstanding fibromyalgia has caused patients to develop high levels of stress because they can no longer function as they would like to or as others expect, in either their home or work lives. Fibromyalgia patients also often have become very inactive or sedentary, and have become depressed or developed negative or pessimistic thoughts about their illness. In order to fully address both the direct and indirect consequences of fibromyalgia, patients often need an entire team of providers that can help with various aspects of this illness.

MANAGEMENT

How important are exercise, positive attitude, and good sleep hygiene? (Answered by Robert Bennett, MD, FRCP)

The management of fibromyalgia symptoms is typically divided into pharmacological interventions (i.e. medications) and non-pharmacological interventions. The latter include education, basic “sleep hygiene” measures, and a program of daily stretching and gentle aerobic exercise. Good sleep hygiene includes going to bed and getting up at approximately the same times each day, sleeping in a darkened quiet environment that is a few degrees cooler than the average house temperature, adopting a serene state of mind before sleep (no TV or similar distractions), establishing sleep rituals (e.g. listening to relaxing music, reading some poetry, doing abdominal breathing exercises), avoiding exercise within 5 hours of sleeping, not using caffeine or nicotine within 6 hours of going to bed, ensuring that the bedroom is quiet and comfortable, having a light snack or glass of milk about an hour before retiring, and taking a hot bath (or going into a hot tub) about an hour before retiring promote sleepiness (in actuality sleepiness results from the fall in body temperature).

Most fibromyalgia patients find that strenuous exercise aggravates their pain and fatigue.

However, lack of exercise leads to becoming out of shape, leading to stiffness and eventually more pain. There are numerous studies that have reported beneficial effects of gentle aerobic exercise and regular stretching. The amount of exercise is a very individualistic matter dependent upon age and previous level of fitness. Basically, there’s no “one-size-fits-all.” The general rule is "go low, go slow, and don't give up.” Exercise induces the release of the body's natural pain fighters (i.e. endorphins), promotes an increased sense of well-being, reduces stiffness, and helps preserve muscle strength and functionality.

Not all patients, even those who are depressed, necessarily develop a negative attitude. There are probably genetic, socioeconomic, and environmental (e.g. previous negative life experiences) factors that contribute to a negative attitude. Having a chronic pain condition often results in reduced productivity, job loss, and reduced self-esteem. In some cases, members of the medical profession contribute to a negative attitude by their own unhelpful or even hostile attitude towards fibromyalgia patients. Being actively engaged in family life, career, charity work, hobbies, or support groups can all contribute to a more positive attitude. In some cases a special form of psychotherapy called "cognitive behavioral therapy" may be required to help patients adopt a more positive approach to dealing with the consequences of having fibromyalgia.

What is a multi-disciplinary treatment approach? (Answered by Robert Bennett, MD, FRCP)

This refers to the need for most fibromyalgia patients to have more than 1 health care specialist involved in their overall management. As noted above, fibromyalgia is a complicated disorder commonly associated with other pain disorders, sleep disturbances, reduced functionality, reduced levels of fitness, and depression. Thus the ideal management of fibromyalgia often involves a team approach. The leader of this team is most commonly a rheumatologist, general internist, family physician, physiatrist, or chiropractor. Depending upon the results of a comprehensive analysis of the individual patient, consultations may be required with orthopedic surgeons (e.g. osteoarthritis of the knee), rheumatologists (e.g. rheumatoid arthritis or lupus), psychiatrists (e.g. depressive disorder), neurosurgeons (e.g. spinal stenosis or carpal tunnel syndrome), gastroenterologists (e.g. irritable bowel syndrome), gynecologists (e.g. endometriosis or pelvic pain syndrome), urologists (e.g. overactive bladder/irritable bladder), or physiatrists (e.g. myofascial pain syndromes). All fibromyalgia patients should be initially evaluated by a physical therapist and an occupational therapist for advice on pacing, adapted devices, stretching, and low-grade aerobic exercise.

What are the treatments for fibromyalgia? (Answered by Patrick Wood, MD)

While there is currently no cure for fibromyalgia and no “magic bullet” to alleviate all the symptoms in every case, a variety of interventions may be useful in subsets of patients. Generally, maintaining aerobic fitness through light exercise has been shown to be one of the single most effective strategies. (Before starting any exercise program please check with your doctor.) Currently there is 1 medication approved by the US Food and Drug Administration (FDA) for fibromyalgia and there are a multiple of other medications currently being studied. The types of medication that have shown the most promise are thought to work primarily within the central nervous system (i.e. the brain and spinal cord). There is also evidence to support the use of cognitive behavioral therapy, education and social support in the management of fibromyalgia symptoms. Other modalities that have shown promise include dietary interventions, the regular use of certain nutraceutical supplements, and such “complementary” modalities as cranial electrotherapy stimulation (CES) and frequency specific microcurrent (FSM). In general, a comprehensive approach that is tailored to the individual’s specific needs appears to be the best means of managing symptoms.

Who can treat fibromyalgia? (Answered by Patrick Wood, MD)

Fibromyalgia has traditionally been considered a rheumatologic or inflammatory disorder, and rheumatologists have historically played a dominant role in either making or confirming the diagnosis. However, as our understanding of the disorder evolves, so, too, does the role of the various medical specialties. In truth, a variety of health care providers may successfully manage fibromyalgia patients, provided they are familiar with the disorder and are willing to stay abreast of the most current information regarding treatments. As with other complicated medical conditions, a primary care provider may be called upon to coordinate health care among various specialty providers, according to the patient’s specific needs.

OTHER

What does the future look like for people with fibromyalgia – is there hope? (Answered by Robert Bennett, MD, FRCP)

There is now more hope for fibromyalgia patients than ever before. This is a result of ongoing research and new medications that target specific sites in the development of this pain amplification pathway. Importantly, many major pharmaceutical firms are now developing and testing new compounds for fibromyalgia. The FDA will approve 1 or more drugs with a specific indication for fibromyalgia, and will be a major event in the long struggle for this condition to be taken more seriously. Medical students are now routinely given teaching on fibromyalgia, and internists must be familiar with fibromyalgia in order to become Board Certified.

What do you think will be the focus of future fibromyalgia research? (Answered by Robert Bennett, MD, FRCP)

Research on fibromyalgia is now a worldwide effort which has greatly increased since the publication of the 1990 American College of Rheumatology Classification Criteria. The focus of future research will follow the same general areas as in the past, namely diagnosis, epidemiology, causation, and treatment. It is likely that new and simpler guidelines for diagnosing fibromyalgia will be developed. Studies have shown fibromyalgia may run in families. This raises the basic question of whether this clustering is due to genetic factors or environmental factors. A few genetic studies have shown some weak linkage to genes that are involved in the metabolism of serotonin and norepinephrine. These sorts of genetic studies have involved looking at probable candidate genes (i.e. genes that we suspect may be involved). With recent advances in DNA sequencing it is now possible to scan the entire human genome and look for differences between healthy and diseased patients. When genome-wide sequencing is eventually done in fibromyalgia, it may show the involvement of genes that no one would currently suspect of being relevant. As genes are the blueprint for proteins, this new information will direct scientists to explore entirely new avenues of research. As researchers learn more about the basic changes in the biochemistry of fibromyalgia patients, whether related to pain processing, the stress response, or fatigue, pharmaceutical firms will translate this information into the design of new drugs.

What can friends and family members do to support a person with fibromyalgia? (Answered by I. Jon Russell, MD, PhD)

It is not easy being different. The family is a team, with every member supportive of the others and deriving value from each other. When one member is not carrying his or her usual or expected weight, everyone suffers. That is why it is so difficult when any family member is ill. A brief illness is easier to manage than a long one. An illness that affects the body in visible, easy to understand ways is easier to provide support for than is one that is somewhat mysterious, like fibromyalgia. The task for family members is much more difficult than the task of the doctor. The doctor has a few minutes of exposure in months, while the family member is there day and night. Every family member is affected by the person who is ill. It is possible to be callous and unsupportive. It is possible to be too supportive and thus interfere with healing. The right balance is hard to define.

Why is it important that people with fibromyalgia have a national patient organization like the NFA? (Answered by Patrick Wood, MD)

The National Fibromyalgia Association serves a number of critical roles in the lives of people with fibromyalgia. There is a need for reliable information regarding the disorder. The NFA serves as a clearinghouse for such information and provides educational outreach to patients and their families, as well as to health care providers. Fibromyalgia patients also need a strong voice of advocacy in the national dialogue. It is an unfortunate reality that fibromyalgia remains poorly understood, which makes it a controversial entity in medical and legal circles, due in large part to our lack of understanding of the cause of the pain and other symptoms. As a result, patient experience of symptoms has historically been de-legitimized, and the impact of the disorder on the individual’s capacity for productivity and quality of life has been marginalized. It is therefore important that a national patient organization like the NFA exists to represent the interests and needs of fibromyalgia patients to federal policy makers, as well as to medical researchers and the pharmaceutical industry, in order to better inform the direction and scope of medical research.

What have the fMRI and other brain imaging technology research taught us about fibromyalgia? (Answered by Daniel Clauw, MD)

First and foremost, the functional imaging studies done in fibromyalgia have taught us that the pain in fibromyalgia is real. It is very clear now that when fibromyalgia patients say they experience pain even when light pressure is applied, they are actually experiencing pain—we can see it on fMRI.