|• What Is Fibromyalgia?|
• Pathophysiology of Fibromyalgia
• History of Fibromyalgia
|• Controversies About Fibromyalgia|
• Who Is at Risk for Developing Fibromyalgia?
• Will I Get Better?
What is Fibromyalgia?
By Karen Lee Richards*
Fibromyalgia is a chronic disorder characterized by widespread pain, fatigue, sleep disturbances and cognitive impairments.
The term ‘fibromyalgia’ is a combination of three words:
- fibro – a Latin word meaning fibrous tissues, such as tendons and ligaments.
- my – from the Greek word “myo” meaning muscles
- algia – a Greek word meaning pain.
So fibromyalgia literally means “fibrous tissue and muscle pain.” That name initially seemed appropriate since fibromyalgia was originally thought to be a musculoskeletal disorder because most of the pain was felt in the muscles and other soft tissues.
Much research and the advancement of brain-imaging technology, however, lead to the belief currently held by most that fibromyalgia is actually a disorder of the central nervous system, which causes abnormal pain processing and results in pain amplification. Longtime FM researcher, Dr. Daniel Clauw, describes fibromyalgia as “the poster child for a ‘centralized’ pain state.”
While central sensitization certainly does seem to play a significant role in fibromyalgia, new research is revealing additional physiological factors which seem to play key roles in this illness we call fibromyalgia.
Pathophysiology of Fibromyalgia
Theories abound as to the cause of fibromyalgia. Years of research have uncovered numerous physiological abnormalities associated with FM. Many pieces of the fibromyalgia puzzle have been discovered but so far no one has been able to determine exactly how all of those puzzle pieces fit together. In the end, it may turn out that there are several “causes,” any one of which can trigger the cascade of symptoms we know as fibromyalgia. Only time and continued research will tell.
Below are some of the categories of abnormalities found in fibromyalgia.
History of Fibromyalgia
People often think of fibromyalgia as a relatively new illness because the term “fibromyalgia” wasn’t used until late in the 20th century and it didn’t have an official criteria until 1990. However, physicians and researchers have written about FM-like conditions since the early 1800s. And historical accounts of illnesses with remarkably similar symptoms can be found as far back as circa 1500 BC.
What may be the earliest description of a condition resembling fibromyalgia can be found in the Biblical account of Job’s physical anguish. Job laments, “I, too, have been assigned months of futility, long and weary nights of misery. Lying in bed, I think, ‘When will it be morning?’ But the night drags on, and I toss till dawn… And now my life seeps away. Depression haunts my days. At night my bones are filled with pain, which gnaws at me relentlessly.” (Job 7:3-4 and 30:16-17 – NLT)
In the 19th century, Florence Nightingale, an English army nurse and Red Cross pioneer, became ill as she worked on the front lines during the Crimean War (1854 – 1856). She never fully recovered and was bedridden much of the time, suffering with unrelenting pain and fatigue, until her death in 1910.
The collection of symptoms we know today as fibromyalgia, has been called by a variety of other names. Beginning in the 1600s, fibromyalgia-like symptoms were diagnosed as muscular rheumatism. Then in 1904, Sir William Gowers coined the term “fibrositis” to describe a condition which he believed was caused by inflammation within muscle fibers. When further research did not confirm Gowers’ inflammation theory, Dr. Philip Hench renamed the condition fibromyalgia in 1976. Although new findings will not likely lead to another name change, it should be noted that very recent research seems to be indicating that Gowers may have been right all along, as several studies have shown there to be at least some degree of inflammation involved with FM.
The tender points, used to identify fibromyalgia and differentiate it from other pain conditions, were first described by Dr. Hugh Smythe in 1972. They were used in the 1981 Yunus study, which was the first controlled clinical study to use known fibromyalgia symptoms and tender points as validation. It was also Smythe who, in the training sessions for the 1990 American College of Rheumatology FM criteria study, taught the other investigators how to do a tender point examination.
Following are some of the significant milestones in the history of fibromyalgia:
|1600s||Symptoms resembling fibromyalgia were given the name muscular rheumatism.|
|1816||Dr. William Balfour, surgeon at the University of Edinburgh, was the first to fully describe what would later be known as fibromyalgia.|
|1824||Dr. Balfour described what would become known as tender points.|
|1904||Sir William Gowers coined the term fibrositis, which literally means “inflammation of fibers,” to identify the pain experienced by patients formerly diagnosed with muscular rheumatism.|
|1972||Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia when he described widespread pain and tender points.|
|1975||The first sleep electroencephalogram study, which identified the sleep disturbances that accompany fibromyalgia, was performed.|
|1976||Dr. William Balfour, surgeon at the University of Edinburgh, was the first to fully describe what would later be known as fibromyalgia.|
|1981||Dr. Muhammad Yunus was the first to officially use the term fibromyalgia as a synonym for fibrositis in a scientific publication.|
|1987||The American Medical Association recognized fibromyalgia as a real physical condition.|
|1990||The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes. However, since there was no other diagnostic tool available, the criteria soon began to be used by clinicians as a tool to help them diagnose fibromyalgia in patients.|
|1990s||The concept of neurohormonal mechanisms with central sensitization was developed.|
|2007||Lyrica (pregabalin) became the first drug to receive FDA approval for the treatment of fibromyalgia.|
|2008||Cymbalta (duloxetine) was the second drug to receive FDA approval for the treatment of fibromyalgia.|
|2009||Savella (milnacipran) followed as the third drug to receive FDA approval for the treatment of fibromyalgia.|
|2010||The American College of Rheumatology proposed a new set of diagnostic criteria which takes into account other common fibromyalgia symptoms, such as fatigue, sleep disturbances, and cognitive problems, as well as pain.|
|2011||Modifications to the 2010 Fibromyalgia Diagnostic Criteria were proposed.|
|2012||The Social Security Administration published a ruling (SSR 12-2p) explaining how disability claims examiners and judges should evaluate whether fibromyalgia constitutes a “medically determinable impairment” (MDI). While this ruling does not automatically grant disability benefits to someone with fibromyalgia, it does recognize that fibromyalgia is a legitimate impairment. Beyond that, claimants must still prove that they are too disabled to work.|
|2013||The 2013 Alternative Criteria for diagnosing fibromyalgia was proposed.|
|2013||EpiGenetics introduced the first blood test for diagnosing fibromyalgia – the FM/a® blood test.|
Controversies About Fibromyalgia
Fibromyalgia has had more than its share of controversies on its journey to become accepted as a legitimate disease. Huge progress has been made over the last three to four decades, but there is still a little ways to go before everyone in the medical community fully accepts fibromyalgia as a real illness that deserves to be treated as such.
Until 1981 when Dr. Muhammad Yunus, et al. published the first controlled study of the clinical characteristics of fibromyalgia and the first data-based criteria for diagnosing it in Seminars in Arthritis and Rheumatism, the general attitude toward fibromyalgia was that it was considered to be essentially the same thing as psychogenic rheumatism. It was thought to be unworthy of research or investigation, as evidenced by the fact that very little related to fibromyalgia was published during the 1960s and 1970s.
Dr. Yunus’ paper was a very important first step toward gaining credibility for fibromyalgia. Slightly less than a decade later, the American College of Rheumatology would publish the first official criteria for fibromyalgia so that researchers could be sure they were studying homogeneous groups of patients.
Although fibromyalgia was slowly gaining a foothold in the field of rheumatology, much of the medical community had still either not heard of fibromyalgia at all or they thought it was a psychosomatic problem, requiring referral to a psychiatrist.
By the end of the 1990s, the Internet was becoming more popular and fibromyalgia patients began to find one another. Prior to the availability of the Internet, even if a patient was lucky enough to find a doctor who knew how to diagnose fibromyalgia, it was unlikely that she knew anyone else with the same diagnosis. Fibromyalgia patients felt very alone and often thought they were the only ones who had to live with these odd and painful symptoms.
The Internet was quickly adopted by patients in general and by fibromyalgia patients in particular. First they banded together to form support groups. It was a huge relief for patients to find out they were not alone; that there were a lot of other people out there who were experiencing the same set of symptoms.
The need for advocacy groups soon became apparent. Patients needed help and the medical community seemed to be moving much too slowly. Soon several nonprofit advocacy organizations and research foundations were founded with the mission of raising awareness about fibromyalgia and encouraging more research.
While significant strides were being made, unfortunately there was still a large percentage of physicians who remained skeptical about fibromyalgia. It didn’t help that Dr. Frederick Wolfe, lead author of the paper that established the 1990 ACR diagnostic criteria for fibromyalgia, reportedly changed his mind and became quite vocal in promoting his new theory that fibromyalgia is merely a byproduct of depression, stress and social anxiety. Needless to say, this was a disappointment for the fibromyalgia community. But there was a light shining on the horizon.
The year 2007 became a banner year for fibromyalgia. It was then that the U.S. Food and Drug Administration (FDA) approved Lyrica, the first-ever drug to be approved for the treatment of fibromyalgia. Even though Lyrica would only improve symptoms for about 30-40% of fibromyalgia patients, its approval made a very big difference for all FM patients for several reasons.
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- Fibromyalgia suddenly had legitimacy. After all, the FDA wouldn’t approve a drug for an illness that didn’t exist.
- Physicians who previously didn’t want to treat fibromyalgia patients because they felt they had nothing to offer them, now had a medication to offer.
- Pfizer, the pharmaceutical company who developed Lyrica, did extensive television advertising for its new product. Within a few short months, most people had heard of fibromyalgia and had at least a vague idea of what it was.
The additional approvals of Cymbalta in 2008 and Savella in 2009 further bolstered the credibility of fibromyalgia in the eyes of the medical community, the government and the general public.
Today more medical professionals than ever are familiar with fibromyalgia. However, if you peruse fibromyalgia forums, you’ll see that there are still far too many doctors who either don’t believe it is real or consider it a “wastebasket” diagnosis – a diagnosis they give when they can’t figure out what is wrong.
Why Doesn’t My Doctor Know More About Fibromyalgia?
You may wonder why there is still any disbelief given all of the research that shows very distinctive physiological abnormalities in fibromyalgia. One big reason, according to Dr. Kent Holtorf in his article “Why Doesn’t My Doctor Know This?” is because most doctors do not read medical journals. And even when they do learn of new research, they are resistant to anything new that they did not learn in medical school. That’s not just his opinion; it’s the conclusion of a number of studies and articles published in the aforementioned unread medical journals.
In defense of the doctors, their negligence in acquiring new scientific knowledge is not just a matter of apathy. They are so overloaded with patients and paperwork, there simply isn’t enough time to keep up. Unfortunately, it is the patients who suffer. According to a National Institute of Health study, “The lag between the discovery of more effective forms of treatment and their incorporation into routine patient care averages 17 years.”
What Can Patients Do?
Fibromyalgia patients must be proactive and take charge of their own healthcare. Find a doctor who is knowledgable about fibromyalgia; or at the very least, find a doctor who is open and willing to learn. Try to keep up with the latest fibromyalgia research. (ProHealth publishes all new FM research so check our Fibromyalgia Health Center regularly.) Take copies of significant research abstracts, or the entire journal article when possible, to your doctor. If your doctor is unwilling to even look at new research, it’s probably time to find a new doctor.
Who is at Risk for Developing Fibromyalgia?
Adult women appear to be at greater risk for developing fibromyalgia than men or children, however, it can affect all ages and both sexes. Historically, 75 to 90 percent of people diagnosed with FM have been women, but new information may eventually change those figures.
Fibromyalgia experts are finding that men often have fewer than the traditional 11 tender points required for diagnosis, yet meet all the other diagnostic criteria for fibromyalgia. And what was once thought to be “growing pains” in children may turn out to be a previously unrecognized form of fibromyalgia. Although fibromyalgia will probably still occur most frequently in adult women, we may soon discover it affects significantly more men and children than once thought.
A significant risk factor is family history, as there is growing evidence of a genetic component in fibromyalgia. If someone in your family has fibromyalgia, you may be at greater risk of developing it yourself.
Since fibromyalgia is usually triggered by an injury, illness, other chronic pain condition or sometimes prolonged emotional stress, those events can increase a person’s risk for developing fibromyalgia – particularly if the person has a family history of FM.
Will I Get Better?
Dr. Bruce Campbell, who has a self-help website for fibromyalgia and chronic fatigue syndrome, says of the prognosis for fibromyalgia,
“Fibromyalgia is neither progressive, nor fatal. Just as there is no cure for CFS, there is no treatment that cures fibromyalgia. But, as with CFS, some patients experience a spontaneous recovery and many experience notable improvement. In fact, improvement is probably the most common outcome for fibromyalgia, experienced by half to two thirds or so of patients.
“As with CFS, the course of fibromyalgia may vary. The location and severity of pain can change over time. Symptoms can be intermittent, fluctuating or persistent. Triggers of symptom intensification may include excessive activity, inactivity, stress, trauma, repetitive motion, poor sleep, strong emotions and weather changes.”
Patients who experience the greatest improvement are generally proactive and adopt a multi-disciplined approach to treatment, which may include a combination of medication, alternative/complementary therapies, nutritional supplements, exercise, a healthy eating plan and lifestyle adaptations.
* Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE, the very first full-color, glossy magazine devoted to FM and other invisible illnesses. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, and then for eight years as the Chronic Pain Health Guide for The HealthCentral Network.
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