Fibromyalgia. This is one of the most controversial diseases.

The most common cause of widespread musculoskeletal pain, and generally accompanied by profound fatigue, disordered sleep, psychiatric disease, cognitive (thinking) complaints and multiple somatic (body) complaints, is also one of the most aggravating diseases to have and to treat.

It affects 8-12 million Americans, but can make up as much as 40 percent of new patient referrals to a rheumatologist (a physician who specializes in treating muscle, bone and joint disorders). It is much more common in women, especially ages 20-60, at about six to 10 times the frequency in men. It is occasionally seen in children and the very old. It runs in families and is often seen in association with other medical conditions, including all forms of arthritis.

However, it is not arthritis, indeed, is not progressive, non-life threatening, cannot be seen and has no diagnostic labs or imaging studies. It is a clinical diagnosis based on widespread pain for greater than three months without a definitive cause. It seems to be a product of stress and often non-restorative sleep.

Most researchers believe it is a disorder of pain regulation, and has to do with the way your brain processes pain signals. Traditionally, it has required the presence of “tender points” in the body, but that is no longer required to make the diagnosis. It seems to occur after physical or emotional trauma, and occasionally infection.

It isn’t clear exactly what it is, or who should manage it. No medical specialty claims dominion over the disease, though it is still often diagnosed and managed in association with a rheumatologist. It could be neurologic disease, and is seen frequently by neurology. It could be a psychiatric disease, or somatoform disorder (physical symptoms caused by mental illness), and many are managed in association with psychiatry. Indeed, many patients are hypochondriacal and afflicted with depression, anxiety, post-traumatic stress, bipolar, ADHD or others.

It might make up as much as 40 percent of pain clinic patients, as they often end up there because prior treatments have not worked, or providers cannot help them.  There are still physicians who do not think this is even a real disease, simply a grouping of commonly shared symptoms that usually have a psychiatric basis. Some would insinuate that rheumatologists made the diagnosis up to get the work; nothing could be further from the truth. Many rheumatologists now avoid these patients, some will not see them, and some won’t make the diagnosis.

So, we have a disease that is poorly understood, shows up as diffuse pain, fatigue, sleep disorders, thinking problems, headaches, jaw pain, pelvic pain, irritable bowel syndrome, acid reflux, numbness, depression, anxiety, and/or panic attacks and may be seen with other diseases. There is no definitive testing, but it is usually associated with tender points in the body. It can look like hypothyroidism, polymyalgia rheumatic, inflammatory muscle disease or be confused by other associated disease.  Sleep disorders such as obstructive sleep apnea or restless legs are also often associated. It is sometimes incorrectly called myofascial syndrome, a regional pain syndrome. It runs in families. Patients often appear normal, but complain vigorously.

They are often medicated with one of the three approved drugs in the U.S. for treating the condition: Lyrica (pregabalin, 2007), Cymbalta (duloxetine, 2008) or Savella (milnacipran, 2009). The results are often disappointing with a response rate of less than 50 percent, and frequent complaints on the products. Other drugs, especially gabapentin, cyclobenzaprine, amitriptyline, fluoxetine and tramadol are commonly used, but virtually all of the psychiatric meds for depression, anxiety and bipolar are used at times. Though sleeping pills and narcotics are avoided, virtually all chronic patients who visit many providers end up on them. Injection therapy may be used, with benefit, if not done frequently, to address specifically painful areas.  Supplements are common here because many patients do not get good results from available therapies.  These often include coenzyme Q10, malic acid, creatine or St. John’s Wort. Again, the results with these are usually disappointing.

Physical therapy, cognitive behavioral therapy, chiropractic, massage, yoga, tai chi and other physical techniques are occasionally helpful. Acetaminophen and anti-inflammatory drugs are usually tried also with limited benefit. Because patients often do not respond to any pharmacological or physical approach, they are often unhappy, see many providers, alienate their families and live difficult lives.

Many lead stressful lives with awful social circumstances, poor support systems and limited resources.

A surprising number have severe psychological problems or are overmedicated, in part due to frequent and unresolved complaints.

However, some patients will respond to a simpler approach. This includes aerobic level exercise, stress management and improved sleeping hygiene. Water exercises and walking are particularly helpful for some. A multi-disciplinary approach that involves different modalities and different specialty providers helps some, but most are still managed by their primary care provider since specialty expertise often does not add much to what can be done once the diagnosis is made.

Research into the causes of the disorder has been disappointing and has not lead to any marked understanding or improved therapy over the last seven years. Since the disorder is non-fatal, not well defined and not progressive, it does not garner the interest and funds of established diseases such as cancer, AIDS or heart disease. My suspicion is that there is a physiologic abnormality that results in the marked sensitivity to pain, and that this will be a target for therapy and possibly a cure.  Considerable work is necessary before this disorder becomes one that providers want to treat, and patients don’t mind having. Until that time, those who suffer with this common syndrome should see to maximize those things that only they can:  exercise, stress management and quality sleep.

Randal White, MD, FACP, FACR is a rheumatologist with Vidant Rheumatology of Washington and can be reached at 252-948-4990.