Lupus and Fibromyalgia
Adapted from a presentation to the SLE Workshop at Hospital for Special Surgery
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.
Many of the symptoms are the same. For example, fatigue, joint and muscle pain, morning stiffness, hand symptoms without observed swelling, Raynaud’s phenomenon (painful hands or feet in response to cold), numbness, and headaches can be seen in both of these disorders.
The treatments for lupus and fibromyalgia are very different, but fibromyalgia can get in the way of judging the lupus activity. If you are being treated with immunosuppressive drugs for your lupus but have continued pain and fatigue, those symptoms may be considered evidence of continuing lupus activity, when they might be fibromyalgia. So there is the theoretical risk that you might be treated with higher doses of immunosuppressants and be at risk for their side effects, when such drugs don’t help fibromyalgia and may not be needed at that time for your lupus. For example, among people with lupus, the occurrence of fatigue correlates more strongly with the presence of fibromyalgia than with their degree of lupus disease activity or damage.
The proper diagnosis can alleviate anxiety. For example, if you have numbness and it can be determined that the cause is fibromyalgia, that can be reassuring because you know it won’t progress and cause more serious outcomes, as might occur in numbness due to lupus. Because fibromyalgia doesn’t have the same internal organ manifestations and potential for damage that lupus-mediated problems have, symptoms may have a better prognosis (outlook) if they are caused by fibromyalgia.
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
Fibromyalgia is not a disease but a syndrome (a cluster of symptoms and signs of disordered function) that causes chronic, widespread musculoskeletal pain. The pain typically includes particular areas of increased sensitivity called tender points – spots where application of mild finger pressure causes pain without spreading beyond that site. Fibromyalgia is often associated with one or more other symptoms, such as: sleep problems, fatigue, stiffness, skin tenderness, pain after exertion such as exercise, lightheadedness, fluid retention, paresthesias (sensations of numbness, tingling, or other heightened sensitivity), or cognitive problems (including difficulty with memory and vocabulary).
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.
What Causes Fibromyalgia?
Although it is considered a rheumatologic disorder, no evidence suggests that fibromyalgia is an autoimmune disorder, as lupus is. Further, although muscle pain is one of the hallmarks of fibromyalgia, there does not seem to be anything wrong with the muscle itself – there is no muscle inflammation and biopsies of muscle tender points don’t show any consistent abnormalities.
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.
After many years with no approved medications, three medications have recently been approved by the FDA for treatment of fibromyalgia. Pregabalin (brand name Lyrica) was approved in June 2007. Originally developed as an antiseizure drug , it is generally well tolerated with the exception of mild sleepiness that often decreases as one continues on the drug. Other less common side effects include ankle swelling and weight gain. Duloxetine (Cymbalta) and milnacipran (Savella) are antidepressant drugs approved for treatment of fibromyalgia in June 2008 and January 2009, respectively. They are classified as serotonin-norepinephrine reuptake inhibitors (SNRI’s) and are less likely to cause sedation but may lead to nausea, constipation or dizziness as possible side effects.
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.
Getting the Right Diagnosis
Because fibromyalgia can cause so many different types of symptoms, patients may go to a wide variety of specialists – a gastrointestinal specialist for irritable bowel symptoms, a neurologist for dizziness or numbness, a rheumatologist for muscle and joint pain, etc. – and that may contribute to difficulty with diagnosis as well as differentiating whether it’s your fibromyalgia or your lupus causing a particular symptom. Your doctors need to communicate in order to pull a unifying diagnosis together.
How can fibromyalgia be differentiated from renewed lupus activity? That can be difficult.
Generally, in patients with fibromyalgia and no other underlying disease, the sedimentation rate is normal and there is no positive ANA. So if a patient with lupus is very symptomatic and in the past has had a lot of changes in labs to go along with such symptoms – but this time the lab work does not show any changes, that can be a hint the symptoms may not be due to lupus.
If the patient is placed on corticosteroids and it doesn’t help the symptoms, that suggests the symptoms are not due to an inflammatory cause such as lupus – and fibromyalgia might be considered.
If you are having a major lupus flare, then you will hurt all over and other signs and symptoms occur that usually make it obvious to you and your physician. But when patients come in looking pretty good and the only complaint is “I hurt all over,” and then the doctor touches them and they jump, that’s suggestive of fibromyalgia coming into the picture.
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.