Fibromyalgia is a chronic condition that causes pain all over the body, and it is among the most common and least understood of all the arthritis-related conditions. Although millions of Americans have it, there is a great deal that remains unknown about fibromyalgia and how it works in the body. This state of affairs has contributed to a general feeling of confusion surrounding the condition, among both doctors and patients. People with fibromyalgia may grow frustrated that their condition takes so long to diagnose and that so little seems to be known about it. They may feel that their symptoms are not taken as seriously as they should be by family members, friends, and even health-care professionals.
Although people have become more aware of fibromyalgia in recent years, the condition has actually been around for a long time. It used to be called fibrositis, a term introduced by William Gowers, MD, in 1904. But the “itis” in fibrositis signifies inflammation, and there is no evidence of inflammation in the muscles, joints, or other soft tissues in people with fibromyalgia, so in the 1970’s the term “fibromyalgia” was coined. “Fibro” comes from Dr. Gowers’s first (and incorrect) description of the cause of pain in fibrositis as residing in the fibrous tissue of the lower back. “Myalgia” means muscle pain.
The cause or causes of fibromyalgia are not well understood, and there are various theories as to how the condition brings about pain and other symptoms. Some researchers have speculated that a central nervous system (brain and spinal cord) disturbance is responsible; others place the disturbance in the muscles, tendons, and ligaments.
There is some evidence to support each position. By inserting a pressure gauge into muscles between the neck and shoulder, researchers have found that people with fibromyalgia have increased muscle tension, suggesting that the muscles are involved. Other studies using functional magnetic resonance imaging (MRI) of the brain have pointed to a problem with the way people sense pain. In one such study, both people with and people without fibromyalgia had similar brain areas activated on functional MRI when their thumbnail was (painfully) pressed. However, the brain centers of people with fibromyalgia lit up with a lot less pressure on the thumbnail than did those of people without fibromyalgia. This study suggests that fibromyalgia magnifies pain signals, making people more sensitive to pain. As one patient said to me recently, “If I get a pain in my hand, I feel like my whole hand is intensely painful, like a severe burn.”
There has also been research into how fibromyalgia changes the way the body processes pain. Studies of people with fibromyalgia have found pain signals going to the brain that are initiated, in part, by chemicals called substance P and glutamate. People with fibromyalgia have been found to have high levels of these chemicals. Researchers have also found that pain-inhibiting signals traveling from the brain to the body are brought on in part by serotonin and norepinephrine — substances that may be present in lower-than-normal levels in people with fibromyalgia.
Who gets fibromyalgia?
It is difficult to say for certain how many people have fibromyalgia. According to the Arthritis Foundation, fibromyalgia is estimated to affect about 2% of Americans. In any case, fibromyalgia is thought to be greatly underdiagnosed. And while most people with fibromyalgia are women, men get fibromyalgia too, and their fibromyalgia may be especially likely to go undiagnosed. There also seems to be a genetic component to fibromyalgia; one study found that people who have close relatives with fibromyalgia are eight times more likely to develop the condition themselves. In addition, it is estimated that about one-fourth of people who have painful autoimmune conditions such as rheumatoid arthritis (RA) and lupus have fibromyalgia as well. In some cases, fibromyalgia seems to be related to a physical or emotional trauma in a person’s past though a recent study has suggested that the relationship between fibromyalgia and emotional trauma may not be as strong as has been believed.
What are the symptoms?
The main symptom of fibromyalgia is pain. The intensity of the pain is usually quite significant. On a scale of 1 to 10, many people regularly rate their pain as a 7 or 8. The pain in fibromyalgia is widespread, occurring all over the body, although pain may occur in different parts of the body at different times.
Fatigue is another hallmark of fibromyalgia. People with the condition have difficulty sleeping. They find that they seldom fall into a deep sleep, wake up frequently during the night, and get up in the morning feeling unrefreshed.
Other common symptoms of fibromyalgia include muddled thinking and poor concentration, known as “fibro fog.” Neurocognitive evaluations, such as memory tests that are commonly used to test for Alzheimer disease, often show nothing unusual in people with fibromyalgia. However, recent research has found that people with fibromyalgia do not make new memories at a normal rate when their attention is divided. If a person with fibromyalgia is on the phone and someone knocks at the door with a message, the person with fibromyalgia may have difficulty remembering the topic of the phone conversation. In addition, people with fibromyalgia have been found to have a “naming speed deficit” — they require about two-tenths of a second longer to read words and name colors than do people without fibromyalgia. However, fibromyalgia does not cause progressive mental decline.
Fibromyalgia may be associated with a wide range of symptoms besides those already mentioned. People with abdominal or chest pain or trouble swallowing often don’t realize that these symptoms may be related to their fibromyalgia. An Internet survey of both people with and people without fibromyalgia found that the following symptoms commonly occur in people with fibromyalgia:
- Balance problems
- Dry mouth
- Memory problems
- Night sweats
- Restless legs
- Sensitivity to light
- Vision problems
Other disorders may need to be ruled out as the cause of any of these problems, but it is not uncommon to find people with fibromyalgia who have a variety of unexplained symptoms.
In addition, some people tell their doctor that factors such as weather and stress can aggravate their fibromyalgia symptoms. People with fibromyalgia seem to be particularly sensitive to these kinds of changes.
How is fibromyalgia diagnosed?
The diagnosis of fibromyalgia can be difficult to pin down. In contrast to conditions such as rheumatoid arthritis and lupus, there are no blood tests or imaging tests that can help to make a diagnosis of fibromyalgia. Doctors must rely almost exclusively on their patients’ reports of pain and other symptoms.
To help standardize the diagnosis of fibromyalgia, the American College of Rheumatology (ACR) has published criteria that doctors can follow when making a diagnosis. The first diagnostic criteria for fibromyalgia were developed by the ACR in 1990. They identified 18 “tender points” located in different parts of the body. If a person had tenderness in 11 of these points and also had widespread pain lasting for at least three months, the diagnosis was fibromyalgia.
There was a lot of confusion about these criteria, especially among primary-care doctors. Some of this confusion was due to the fact that tenderness comes and goes in fibromyalgia — a person might have 12 tender points on one occasion and 4 on another. Certainly, between these two occasions the person did not stop having fibromyalgia — only the number of tender points changed. (In fact, some researchers have suggested that tender points are partly a measure of emotional distress and are more numerous when people feel more anxious.) In any case, the tender point test fell into disuse, and new diagnostic criteria, developed by the ACR in 2010, no longer require them for a diagnosis of fibromyalgia.
What the new criteria do require is that a person have at least seven “areas” of chronic pain along with symptoms of sleep disturbance, fatigue, and fibro fog. The symptoms have to have been present for at least three months. A variety of other symptoms that occur in people with fibromyalgia are also part of the official criteria. In addition, a person must not have another condition that could explain the symptoms.
It is important to remember that just because a person has a painful illness, such as RA or lupus, it does not mean that he or she does not have fibromyalgia too. However, it can be difficult to tease out a diagnosis of fibromyalgia in a person with RA or lupus. To make the fibromyalgia diagnosis in these people, doctors will consider the intensity of pain and look for other symptoms such as sleep disturbance and mental clouding.
Fibromyalgia is still sometimes described by those who do not understand it as a “wastebasket” diagnosis — that is, a diagnosis that is made only when all other possible diagnoses have been ruled out. The new criteria for diagnosis should help dispel this and other misconceptions about fibromyalgia.
Researchers have also developed Internet survey criteria so that they can study larger numbers of people with the condition. By getting information from a large group of people with fibromyalgia, researchers hope to better determine the condition’s cause and develop effective treatments for it.
How is fibromyalgia treated?
Medicines play a major part in the treatment of fibromyalgia. There are currently three drugs approved by the US Food and Drug Administration to treat fibromyalgia: pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella). Two of these drugs were originally approved to treat other conditions — Lyrica for nerve pain and Cymbalta for depression. When used to treat fibromyalgia, Lyrica dulls some of the chemicals in the body that cause pain. Cymbalta and Savella increase serotonin and norepinephrine activity in the brain — these chemicals may dampen some of the overactive pain responses in people with fibromyalgia. (These two drugs are known as serotonin–norepinephrine reuptake inhibitors, or SNRIs.)
Other medicines are also used. Tricyclic antidepressants such as amitriptyline are often helpful in low doses, especially for treatment of sleep problems. Stimulants such as modafinil (Provigil), armodafinil (Nuvigil), and methylphenidate (Ritalin) may be used to address fatigue and fibro fog. Muscle relaxants such as cyclobenzaprine (Flexeril) and tizanidine can be helpful for treating pain, but they may worsen fatigue. Many people with fibromyalgia are sensitive to the side effects of these and other medicines because they can sometimes aggravate fatigue or cognitive problems. People with fibromyalgia need to work with their doctor to find a drug regimen that reduces their symptoms and has minimal side effects. Doctors often start people on low doses and emphasize nighttime dosing to minimize side effects such as fatigue.
Powerful painkillers called opioids or narcotics — examples include oxycodone (OxyContin) and hydrocodone (Vicodin) — tend not to work that well in people with fibromyalgia, probably because the chronic pain of fibromyalgia has already caused the opiate receptors in the brain to be saturated with opioid-like chemicals. (Opioids work by attaching to these receptors.) In addition, people may develop tolerance to opioids so that they need higher and higher doses to achieve the same pain-relieving effect.
Fibromyalgia is a lot to deal with and can be very frustrating, and there is as yet no cure or treatment that can completely resolve its symptoms. Coping strategies are therefore necessary to effectively manage the condition. In addition, the symptoms of fibromyalgia are invisible, and other people often don’t understand how the condition makes people feel. People with fibromyalgia should discuss their condition and its effects with their family and close friends to gain as much support and understanding as possible. Rating one’s pain on a scale from 1 to 10 can help family members understand the severity of fibromyalgia’s symptoms, and spouses who attend doctor visits are often more sympathetic to their partner’s pain. In addition, mind–body treatments such as meditation and yoga can be helpful. Cognitive-behavioral therapy, which aims to direct the mind away from negative thoughts, may be useful as well.
Exercise is another important treatment for fibromyalgia, but it should not be strenuous aerobic activity, which can worsen symptoms. Rather, mild exercises, whether stretching or light aerobic activity, are most helpful and can improve people’s stamina and ability to function. Walking, yoga, tai chi, Pilates, and swimming and other water exercise are all good options. Elliptical machines and stationary bicycles can provide low-impact activity. In general, it is important to stay active, exercise regularly (but not strenuously), and try to maintain a good balance of hobbies, work, and other activities.
Finally, education about fibromyalgia is very important. In part because of the confusion that sometimes surrounds the condition, there is a lot of questionable information about fibromyalgia available in books and on the Internet. When seeking information about fibromyalgia, look for books and Web sites that are sponsored by the government, hospitals, universities, or other reputable organizations. (See “Fibromyalgia Resources”) Doctors may also be able to recommend helpful resources.
Top five self-management tips
Drug treatment can help to manage the pain and other symptoms of fibromyalgia, but treatment works best when you are active in managing the condition yourself. The following are a few tips to help you become a better self-manager.
Plan, pace, prioritize. These are the “three P’s” that can help you manage fibromyalgia on a daily basis. Plan ahead, pace yourself throughout the day, and prioritize the activities most important to you. If you are tired and in pain, you will not be able to “do it all,” so you must choose what is essential and allow yourself downtime.
Let family and close friends know. Nothing about how you look tells others that you have fibromyalgia, and people may not understand what the condition is and how it affects you. It is usually helpful to let people close to you know about your condition so that they can offer sympathetic help when needed.
Identify negative thought patterns. Negative thinking has been shown to make the pain of fibromyalgia worse. For example, people with fibromyalgia may magnify negative thoughts and experiences, while minimizing what is positive in their lives. If you find yourself falling into this pattern, it can help to keep a diary or other record of your negative thoughts so that you can identify what brings them on and try to replace them with more constructive thoughts.
Stay active. The first impulse when you are tired and in pain is to rest. While rest is an important strategy for fibromyalgia management, it shouldn’t be your only strategy. A sedentary lifestyle can exacerbate fibromyalgia symptoms. Light, low-impact aerobic exercise can help relieve pain and reduce fatigue. The gentle exercises provided by the National Institute on Aging are good examples. (Go online or call 800-222-2225 to order “Exercise & Physical Activity: Your Everyday Guide From the National Institute on Aging.” )
Report any drug side effects to your doctor. People with fibromyalgia may be particularly sensitive to drug side effects, including fatigue and mental clouding. For this reason, it is important to be aware of any possible side effects of the drugs you are taking and, if you experience them, report them to your doctor. You and your doctor can work to find a drug regimen that minimizes side effects while still addressing your fibromyalgia symptoms.