Fibromyalgia is a disorder that can occur alone or secondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have lupus also have fibromyalgia. It's important for people who have lupus to know about fibromyalgia for several reasons.
Discerning the difference is also important for research. Fibromyalgia seems to affect the validity of some of the measurements of lupus activity. Whether a new drug works for lupus or not can be hard to figure out if 25% of the participants also have fibromyalgia and are having symptoms for that are erroneously labeled as lupus activity
Diagnosing fibromyalgia can be difficult because there are no tests to confirm the diagnosis and because the symptoms can be similar to so many other disorders. Thus, it is a clinical diagnosis made by the physician after ruling out other possible causes of the symptoms, including lupus, rheumatoid arthritis, other connective tissue diseases, and underactive thyroid.
People with fibromyalgia have ups and downs, just as people with lupus do. They don't hurt all the time. Similarly, stress, anxiety, and other emotional or physical stresses may make symptoms worse. However, in long-term studies of people with fibromyalgia, most still have the illness 10 to 15 years later, although two-thirds are somewhat better.
The most widely accepted theory to date of the cause of fibromyalgia is called central sensitization - in which your central nervous system becomes hyper-sensitive to sensations. Different nerves carry different kinds of messages to the brain. Some carry pain messages, and some carry other messages, such as sensations of simple pressure. We believe that in patients with fibromyalgia, something has upped the sensitivity, so that the brain starts seeing a wide range of input messages as all representing pain. So, for example, you may have allodynia - in which when your skin is merely touched, it feels like pain because the message is getting shunted to the wrong kind of sensation.
What sets off that higher sensitivity could be a pre-existing disorder with pain, such as lupus, or an accident, or other kinds of trauma. Some research suggests that a history of childhood abuse, which could heighten the responses of the central nervous system, also may predispose to the supersensitive responses of fibromyalgia later in life. However, it's not at all clear or even likely that every patient has a triggering event.
Studies have shown differences in blood flow in the parts of the brain involved with processing pain in people with fibromyalgia. While we don't yet understand how that information will be useful in treating people, it's a start - and it also adds some objective data to support the central nervous system hypothesis as the underlying cause.
Research has also shown that abnormal patterns occur when brain waves are measured during sleep in people with fibromyalgia. That probably reflects the disrupted sleep seen, which in turn probably contributes to the pain. Even in healthy people, if you interfere with sleep for a period of weeks, muscle tenderness develops. This is probably one part of the cause of muscle tenderness in fibromyalgia, and it may relate to a deficiency of serotonin in the brain.
Researchers have also looked at the connection between the brain and the adrenal glands, where we make cortisone, and abnormalities have been found. So perhaps the normal response to stress is exaggerated.
Many other areas have been examined: decreased growth hormone, increased substance P, and increased activity of a certain kind of receptor in the nervous system associated with chronic pain (called the NMDA receptor).
Psychological factors have been a big issue because a lot of people with fibromyalgia are depressed. Because depression itself can cause symptoms that could mimic those of fibromyalgia, again, the two can be difficult to sort out. However, people with fibromyalgia who are seen in hospital practices seem to have more severe symptoms and a higher incidence of depression than that seen in the general population. This is likely due to a referral bias - that hospital practices attract people with more severe forms of fibromyalgia and such people are more likely to be depressed. Nonetheless, depression itself may affect how people respond to pain and how they will get better and, therefore, it is a separate factor that needs to be addressed by further research.
A number of other medications may be tried in fibromyalgia but are used "off-label" because, although the drugs are FDA-approved for other disorders, they have not been FDA-approved for fibromyalgia. These include amitriptyline (Elavil), originally developed as an antidepressant, but also prescribed for certain types of pain relief. Amitriptyline has been used for fibromyalgia for many years but has potential side effects such as sleepiness, dry eyes and mouth, and weight gain that make it difficult for some people to use. Gabapentin (Neurontin) is an antiseizure drug similar to pregabalin with a similar spectrum of side effects. In general, the anti-depressant and anti-seizure medications are not addictive, although you can't stop them suddenly because this can cause a rebound effect (they need to be tapered off slowly).
Researchers are also exploring other drugs that affect the neurophysiology of the brain in different ways, such as sodium oxybate and naltrexone, and ongoing clinical trials may broaden the range of FDA-approved medications for fibromyalgia patients over the next several years. It should be noted that people who are hypersensitized, such as those with fibromyalgia, may develop drug side effects - even on very low doses of some drugs - that are out of proportion compared to other patients taking those drugs.
What does not work should also be noted. Corticosteroids, such as prednisone and methylprednisolone (Medrol) do not help. Non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Motrin), may help some patients due to pain-relief action only, but not due to anti-inflammatory action. Narcotic pain relievers such as morphine, meperidine (Demerol), and hydromorphone hydrochloride (Dilaudid) are not recommended. Although narcotics are valuable for acute pain, such as after surgery, the chronic pain pathway of fibromyalgia is different from the acute pain pathway. (Pain experts now understand that acute and chronic pain are different and mediated by different pathways in the nervous system.) Further, narcotics can cause physiological addiction.
A number of non-medical approaches have been shown useful for fibromyalgia: two that show particularly strong results are aerobic exercise and cognitive behavioral therapy.
Aerobic exercise, such as brisk walking, low-impact aerobics, and swimming (but not stretching and yoga, which are not aerobic) decrease pain and the tender point count over time. Patients often have a lot of trouble sticking with their exercise program because they have post-exertional pain and don't want to go back. So it's a challenge. You have to start very slowly, perhaps just five minutes of aerobics daily, in order to build tolerance and avoid becoming discouraged.
Cognitive behavioral therapy (CBT) should not be confused with psychological counseling. They are not the same thing. CBT is a directed kind of behavioral modification that involves education and can help you change your thinking about how to approach and deal with your pain. It also includes the concept of pacing, which is important in fibromyalgia - learning to recognize when you need to rest and integrating rest into your schedule.
Some non-conventional therapies seem to be helpful, although studies evaluating them have been very short-term - three months or less. Acupuncture, hypnosis, and massage all have their proponents, but no one seems overwhelmingly helpful.
Probably the best approach is to have medication, aerobic exercise and psychological support rolled into one, integrated program. Some studies looking at such programs are promising for decreasing pain and increasing functional status.
How can fibromyalgia be differentiated from renewed lupus activity? That can be difficult.
The bottom line is that you need to keep track of all of your symptoms to help your doctor discern any new patterns that might merit a different diagnosis - and different treatment.
Learn more about the SLE Workshop, a free support and education group held monthly as HSS.
Summary of a presentation given at The SLE Workshop, a free support and education group held monthly for people with lupus and their families/friends. Adapted from Dr. Sammaritano's presentation by Diana Benzaia.