Information about the frequently asked questions is provided by the National Institute of Arthritis and Musculoskeletal and Skin Disease , the Fibromyalgia Network, and the National Fibromyalgia Association.
Who Gets Fibromyalgia?
Scientists estimate that fibromyalgia affects 5 million Americans age 18 or older. For unknown reasons, between 80 and 90 percent of those diagnosed with fibromyalgia are women; however, men and children also can be affected. Most people are diagnosed during middle age, although the symptoms often become present earlier in life.People with certain rheumatic diseases, such as rheumatoid arthritis, systemic lupus erythematosus (commonly called lupus), or ankylosing spondylitis (spinal arthritis) may be more likely to have fibromyalgia, too.
Several studies indicate that women who have a family member with fibromyalgia are more likely to have fibromyalgia themselves, but the exact reason for this – whether it be hereditary or caused by environmental factors or both – is unknown.
What Causes Fibromyalgia?
The causes of fibromyalgia are unknown, but there are probably a number of factors involved. Many people associate the development of fibromyalgia with a physically or emotionally stressful or traumatic event, such as an automobile accident. Some connect it to repetitive injuries. Others link it to an illness. People with rheumatoid arthritis and other autoimmune diseases, such as lupus, are particularly likely to develop fibromyalgia. For others, fibromyalgia seems to occur spontaneously.
Many researchers are examining other causes, including problems with how the central nervous system (the brain and spinal cord) processes pain.
Some scientists speculate that a person’s genes may regulate the way his or her body processes painful stimuli. According to this theory, people with fibromyalgia may have a gene or genes that cause them to react strongly to stimuli that most people would not perceive as painful. However, those genes – if they, in fact, exist – have not been identified.
How Is Fibromyalgia Diagnosed?
Research shows that people with fibromyalgia typically see many doctors before receiving the diagnosis. One reason for this may be that pain and fatigue, the main symptoms of fibromyalgia, overlap with many other conditions. Therefore, doctors often have to rule out other potential causes of these symptoms before making a diagnosis of fibromyalgia. Another reason is that there are currently no diagnostic laboratory tests for fibromyalgia; standard laboratory tests fail to reveal a physiologic reason for pain. Because there is no generally accepted, objective test for fibromyalgia, some doctors unfortunately may conclude a patient’s pain is not real, or they may tell the patient there is little they can do.
A doctor familiar with fibromyalgia, however, can make a diagnosis based on two criteria established by the American College of Rheumatology (ACR): a history of widespread pain lasting more than 3 months and the presence of tender points. Pain is considered to be widespread when it affects all four quadrants of the body; that is, you must have pain in both your right and left sides as well as above and below the waist to be diagnosed with fibromyalgia. ACR also has designated 18 sites on the body as possible tender points. For a fibromyalgia diagnosis, a person must have 11 or more tender points. (See illustration below.) One of these predesignated sites is considered a true tender point only if the person feels pain upon the application of 4 kilograms of pressure to the site. People who have fibromyalgia certainly may feel pain at other sites, too, but those 18 standard possible sites on the body are the criteria used for classification.
How Is Fibromyalgia Treated?
Fibromyalgia can be difficult to treat. Not all doctors are familiar with fibromyalgia and its treatment, so it is important to find a doctor who is. Many family physicians, general internists, or rheumatologists (doctors who specialize in arthritis and other conditions that affect the joints or soft tissues) can treat fibromyalgia.
Fibromyalgia treatment often requires a team approach, with your doctor, a physical therapist, possibly other health professionals, and most importantly, yourself, all playing an active role. It can be hard to assemble this team, and you may struggle to find the right professionals to treat you. When you do, however, the combined expertise of these various professionals can help you improve your quality of life.
You may find several members of the treatment team you need at a clinic. There are pain clinics that specialize in pain and rheumatology clinics that specialize in arthritis and other rheumatic diseases, including fibromyalgia.
What factors aggravate the symptoms of Fibromyalgia?
Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, infections (flu or a cold), and over-exertion can all contribute to symptom flare-ups. Repetitive use of the same muscle group can strain the muscles and lead to more pain.
Does fibromyalgia get worse over time?
Studies show that roughly 25% of patients get worse over time, but another 25% get better. Some patients may be likely to improve because they have a good doctor willing to work with them to find which therapies they respond to. Also, as people age, other medical conditions can aggravate the symptoms of fibromyalgia, so it is imperative that patients seek aggressive treatment for age-related conditions, such as arthritis. A preventive medicine program with maintenance exercises and a healthy diet may prove worth while.
What Can I Do To Try To Feel Better?
Besides taking medicine prescribed by your doctor, there are many things you can do to minimize the impact of fibromyalgia on your life. These include:
- Getting enough sleep – Getting enough sleep and the right kind of sleep can help ease the pain and fatigue of fibromyalgia. (See “Tips for Good Sleep”.) Even so, many people with fibromyalgia have problems such as pain, restless legs syndrome, or brainwave irregularities that interfere with restful sleep.
- Exercising – Although pain and fatigue may make exercise and daily activities difficult, it’s crucial to be as physically active as possible. Research has repeatedly shown that regular exercise is one of the most effective treatments for fibromyalgia. People who have too much pain or fatigue to do vigorous exercise should begin with walking or other gentle exercise and build their endurance and intensity slowly. Although research has focused largely on the benefits of aerobic and flexibility exercises, a new NIAMS-supported study is examining the effects of adding strength training to the traditionally prescribed aerobic and flexibility exercises.
- Making changes at work – Most people with fibromyalgia continue to work, but they may have to make big changes to do so. For example, some people cut down the number of hours they work, switch to a less demanding job, or adapt a current job. If you face obstacles at work, such as an uncomfortable desk chair that leaves your back aching or difficulty lifting heavy boxes or files, your employer may make adaptations that will enable you to keep your job. An occupational therapist can help you design a more comfortable workstation or find more efficient and less painful ways to lift.
- Eating well – Although some people with fibromyalgia report feeling better when they eat or avoid certain foods, no specific diet has been proven to influence fibromyalgia. Of course, it is important to have a healthy, balanced diet. Not only will proper nutrition give you more energy and make you generally feel better, it will also help you avoid other health problems.
Is TMJ disorder associated with fibromyalgia?
Temporomandibular Joint Dysfunction (TMD) causes tremendous jaw-related face and head pain in 25% of fibromyalgia patients. However, a 1997 published report indicated that close to 75% of fibromyalgia patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint, and not necessarily the joint itself.
What are Researchers learning about Fibromyalgia?
The research on fibromyalgia supported by National Institute of Arthritis and Musculoskeletal and Skin Diseases(NIAMS) covers a broad spectrum, ranging from basic laboratory research to studies of medications and interventions designed to encourage behaviors that reduce pain and change behaviors that worsen or perpetuate pain.
Following are descriptions of some of the promising research now being conducted:
- Understanding pain – Research suggests that fibromyalgia is caused by a problem in how the body processes pain – or more precisely, a hypersensitivity to stimuli that normally are not painful. Therefore, several NIAMS-supported researchers are focusing on ways the body processes pain to better understand why people with fibromyalgia have increased pain sensitivity.
Previous research has shown that people with fibromyalgia have reduced blood flow to parts of the brain that normally help the body deal with pain. In one new NIAMS-funded study, researchers will be using imaging technology called positron emission tomography (PET) to compare blood flow in the brains of women who have fibromyalgia with those who do not. In both groups, researchers will study changes in blood flow that occur in response to painful stimuli.
Researchers speculate that female reproductive hormones may be involved in the increased sensitivity to pain characteristic of fibromyalgia. New research will examine the role of sex hormones in pain sensitivity, in reaction to stress, and in symptom perception at various points in the menstrual cycles of women with fibromyalgia and of women without it. The results from studying these groups of women will be compared with results from studies of the same factors in men without fibromyalgia over an equivalent period of time.
Another line of NIAMS-funded research involves developing a rodent model of fibromyalgia pain. Rodent models, which use mice or rats that researchers cause to develop symptoms similar to fibromyalgia in humans, could provide the basis for future research into this complex condition.
- Understanding stress – Medical evidence suggests that a problem or problems in the way the body responds to physical or emotional stress may trigger or worsen the symptoms of any illness, including fibromyalgia. Researchers funded by NIAMS are trying to uncover and understand these problems by examining chemical interactions between the nervous system and the endocrine (hormonal) system. Scientists know that people whose bodies make inadequate amounts of the hormone cortisol experience many of the same symptoms as people with fibromyalgia, so they also are exploring whether there is a link between the regulation of the adrenal glands, which produce cortisol, and fibromyalgia.
Another NIAMS-funded study suggests that exercise improves the body’s response to stress by enhancing the function of the pituitary and adrenal glands. The hormones produced by these two endocrine glands are essential to regulating sleep and emotions as well as processing pain.
- Improving sleep – Researchers supported by NIAMS are investigating ways to improve sleep for people with fibromyalgia whose sleep problems persist despite treatment with medications. One team has observed that fibromyalgia patients with persistent sleep problems share characteristics with people who have insomnia, such as having erratic sleep and wake schedules and spending too much time in bed. This team is testing whether strategies developed to help insomnia patients will also help people with fibromyalgia achieve deep sleep, which eases pain and fatigue. Preliminary results show that sleep education, which teaches good sleep habits, and cognitive behavioral therapy, which includes sleep education and a regimen to correct poor habits and improper sleep schedules, both reduce insomnia.
- Looking for the family connection – Because fibromyalgia appears to run in families, one group of NIAMS-supported researchers is working to identify whether a gene or genes predispose people to the condition.
Another team is trying to determine whether fibromyalgia is more common in people with other conditions, such as serious mood disorders, that tend to run in families. Specifically, the group is studying the prevalence of psychiatric disorders and arthritis and related disorders in people with fibromyalgia and their first-degree relatives (parents, children, sisters, and brothers) as compared to people with rheumatoid arthritis and their relatives. The group is exploring whether clusters of conditions exist in families, which might shed light on shared risk factors or disease processes.
- Studying and targeting treatments – NIAMS recently funded its first study of a drug treatment for fibromyalgia. The study will measure the effectiveness of gabapentin, an anticonvulsant medication, in reducing symptoms of fibromyalgia. Gabapentin has been found to relieve chronic pain caused by nervous system disorders, and it was recently approved by FDA for the treatment of persistent, severe pain that can follow an episode of shingles.
Scientists recognize that people with fibromyalgia often fall into distinct subgroups that adapt to and cope with their symptoms differently. They also realize that these subgroups may respond to treatments differently. One NIAMS-funded team of researchers has divided people with fibromyalgia into three groups based on how they cope with the condition. Relative to other chronic pain patients, those in the first group have higher levels of pain and report more interference in their life due to pain. They also have higher levels of emotional distress, feel less control over their lives, and are less active. The second group reports receiving less support from others, higher levels of negative responses from significant others, and lower levels of supportive responses from significant others. Those in the third group are considered adaptive copers; they have less pain, report less interference in their lives due to pain, and have less emotional distress. Members of this last group feel more control over their lives and are more active. On the premise that the better you understand the subgroups, the better you can tailor treatments to fit them, the researchers now are trying to design and test different programs for each group, combining physical therapy, interpersonal skills training, and supportive counseling.
