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A Bit of a Mystery

Imagine, for a moment, that you hurt. All over, all the time. You feel pain but you don’t know why. It’s been months now. You no longer sleep restfully. You often have difficulty concentrating. The thought of getting ready to leave your house is beyond exhausting. You don’t understand what is going on, and neither does anybody else. 

Your friends and family don’t know what’s wrong – some may even wonder if it’s all in your head. You may wonder if you’re losing your mind. Trying to get to the root of the problem, you visit many doctors, one expensive appointment after another, in search of answers, in search of something you can do to make this better. Finally, you learn you have fibromyalgia. Now what? 

What, exactly, is this mysterious condition? What causes it, and what can you do about it?

“The etiology of fibromyalgia remains unknown,” says Michael E. Sayers, DO and staff rheumatologist with Arthritis Associates of Colorado Springs. “No single trigger has been identified, but rather multiple environmental stimuli may result in symptoms. These include viral infection, severe illness, stress or physical trauma. There also seems to be a genetic predisposition, though the genetics have not been worked out.”

According to the NIH National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), scientists estimate that some 5 million Americans over the age of 18 live with fibromyalgia, with 80-90% of those being women. Most people are diagnosed with fibromyalgia in middle age.

“Fibromyalgia is a chronic pain syndrome,” explains Dr. Sayers, “characterized by widespread musculoskeletal pain, both muscles and joints. It may be associated with fatigue, various other somatic symptoms, cognitive disturbance, etc. It is very likely what our parents call rheumatism. People describe whole body aches which are aggravated by weather change, static position, stress and sleep deprivation.”

Dr. Sayers says there is no histopathological correlate with fibromyalgia, so “you can’t biopsy anything to establish a diagnosis. Furthermore, labs are all normal. I believe for this reason many primary care doctors seem reluctant to make a diagnosis.”

Sayers says fibromyalgia is often thought of as an autoimmune disorder, best diagnosed and treated by a rheumatologist. “Fibromyalgia may accompany many of our diseases, but it is not thought to be an autoimmune condition. Consequently, your primary doctor is just as well equipped to manage this disorder as a rheumatologist.”

Fibromyalgia is classified as central sensitization, sharing characteristics of other central processes such as migraine, irritable bowel syndrome and TMJ syndrome. “Previously, the pain was thought to have been derived from muscle, but current thinking suggests that any abnormality in muscle is the result of chronic pain and inactivity,” says Dr. Sayers. “Oxidative stress and mitochondrial dysfunction may, however, directly contribute to muscle pain. Finally, there is some growing evidence that peripheral neuropathic pain processes may contribute to this pain syndrome to varying degrees.”

Fibromyalgia has been compared to both lupus and Chronic Fatigue Syndrome. The condition, explains Dr. Sayers, differs dramatically from lupus, but may be similar to Chronic Fatigue Syndrome. “CFS and fibromyalgia are thought by some to represent a spectrum, with fatigue at one extreme and pain at the other. Most patients have features of both.” Lupus, says Sayers, is an autoimmune disease - labs are abnormal, biopsies show inflammation and treatment is aimed at suppressing an overactive immune system.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases sponsors research about fibromyalgia in hopes of learning about new treatments that will improve the lives of those with fibromyalgia. NIAMS is looking at medicines and behavioral treatments, the possibility of a gene or genes that make a person more likely to have fibromyalgia, imaging methods such as MRI to better understand fibromyalgia, inflammation and its relationship to fibromyalgia, nondrug therapies to help with pain and methods to improve sleep for those with the condition.

Dr. Sayers says there are a number of things fibromyalgia sufferers can do. “In many minor cases, treating symptoms when present is all that is needed. This may include NSAIDS, Tylenol and muscle relaxants. For more severe symptoms, daily medication may be in order. These include Lyrica, Neurontin, Savella, Cymbalta and various antidepressant medications.” If symptoms are not readily controlled with medication, says Sayers, the patient needs to enlist the help of a pain specialist.

More often than not, patients who suffer from fibromyalgia have lifelong symptoms. “Some do experience remission but this is not the rule,” says Dr. Sayers. “Severity tends to wax and wane over time and symptoms do improve in most people with proper treatment. The physician managing this disorder can assist the patient with an aerobic exercise program, acquisition of proper weight, good general diet and sleep correction.” 

In addition to pain and fatigue, fibromyalgia symptoms can include

• cognitive and memory problems

• sleep disturbances

• morning stiffness

• headaches

• irritable bowel syndrome

• painful menstrual periods

• numbness or tingling of the extremities

• restless legs syndrome

• temperature sensitivity

• sensitivity to loud noises or bright lights

source: nih: niams