Spine University s Guide to Fibromyalgia

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1 Spine University s Guide to Fibromyalgia

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3 Introduction The official name for fibromyalgia is fibromyalgia syndrome. Fibro means fiber and myalgia means muscular pain or tenderness. Fibromyalgia has been around for a long time. There are reports that Florence Nightingale, who died in 1910, had symptoms of fibromyalgia that first began to affect her in the mid 1850s. Before fibromyalgia was recognized as a medical syndrome, it often wasn t taken seriously, particularly since more women suffered from the symptoms than men. Those who were living with it were often accused of faking illness, being nervous or hysterical, or seeking attention. Luckily, things have changed, although there is still a lot to do in educating the public. When it was recognized as a medical problem, at first there wasn t much agreement on what to call the illness. Before the term fibromyalgia syndrome was coined, the syndrome was given a variety of names, such as psychogenic rheumatism, fibrositis, and myelasthenia, although fibromyalgia was also used. Finally, in 1990, the American College of Rheumatology, an organization of doctors and scientists who work in the field of rheumatic diseases, developed diagnostic criteria (rules for diagnosis) and the term fibromyalgia syndrome became the official name. What causes fibromyalgia? There is a short answer and a long answer to the question what causes fibromyalgia? The short answer is: Researchers don t know. The longer answer is a bit more complicated. Because one of the main complaints with fibromyalgia is generalized and chronic pain, it was originally thought that it was a muscle disease and that is likely why myalgia is part of the name. However, over the years, the medical community has learned that there is much more to fibromyalgia than just muscle pain. What researchers do know is that people who have fibromyalgia experience or feel pain differently from those who do not have it. There is some sort of alteration in the processing of the pain from the painful area to the brain. Although it hasn t been proven yet, there are some strong theories about fibromyalgia and what brings it on. Physical trauma or injury: While not all people with fibromyalgia have been injured, a large number have. They may have been in a car accident or some other type of accident that, in particular, causes injury and pain to the spine. It s thought that this type of injury affects the central nervous system of some people and then progresses to fibromyalgia. Infection: Although it s not been proven, there are theories that an infection, either bacterial or viral, may be responsible for fibromyalgia. Genetics: It s believed that some people have a genetic predisposition to fibromyalgia, which means it runs in families. These are the people who may have the illness triggered by an accident or infection. One thing that researchers have found in patients with fibromyalgia is that they have a lower level of cortisol, a stress-fighting and anti-inflammatory hormone, than people who don t have fibromyalgia. The researchers believe that this lower level of cortisol may affect how people feel and interpret pain and other sensations. Another difference that s been found is in something called serotonin, which is also lower in patients with fibromyalgia. Serotonin acts as a chemical messenger that transmits nerve signals between nerve cells. Finally, a protein called substance P is found in higher levels in people with fibromyalgia. Substance 3

4 P is involved in how a person processes by stimulating nerve endings at the site of injury. Who gets fibromyalgia? Anyone can get fibromyalgia, including children. When a child, usually a teenager, develops it, it s called juvenile fibromyalgia syndrome. However, it s mostly adults that develop fibromyalgia and the majority of them are women. In fact, among those over 50 years old, women outnumber men with fibromyalgia by up to seven to one. It doesn t seem that any part of the world is more affected by fibromyalgia than another. Estimates in the United States, Canada, Spain, France, and the United Kingdom are that about two to five percent of the population is affected. Researchers also say that there will be more diagnoses around the world as doctors become more aware of the diagnostic criteria and recognize patients who have the syndrome. What are the symptoms of fibromyalgia? There are several different signs and symptoms associated with fibromyalgia and each one, taken alone, likely doesn t seem to mean very much. But, by combining the symptoms, they can cause severe disability. The most common and the hallmark symptom is widespread, chronic pain. This pain can and most often is severe and debilitating. There are also tender points, spots or points on the body that are particularly painful if any pressure is applied. Other signs and symptoms include: Changes in vision Depression and/or anxiety Difficulty concentrating and remembering things (often called fibro fog) Difficulty sleeping and not feeling refreshed or rested after sleeping Difficulty with balance, dizziness Fatigue, often to the point of exhaustion Feeling exceptionally sensitive to heat and cold Headaches Irritable bowel (diarrhea and/or constipation) Need to urinate urgently and/or frequently Numbness and tingling throughout the body Sensitivity to chemicals Stiffness and joint pain upon waking Some of these problems are more common than others. For example, researchers have found that 40 percent of people who have fibromyalgia also have depression, compared with 10 percent of the general public. Up to 45 percent of people with fibromyalgia have anxiety and up to 51 percent have anxiety if they have fibromyalgia and another illness as well. Irritable bowel syndrome seems to affect up to 70 percent, compared with only 20 percent of the general public. How these symptoms affect different people also varies quite a bit. For example, sensitivity can be very severe some people may not tolerate contact with their clothing, for example. How is fibromyalgia diagnosed? There is no test that can tell a doctor if a patient has fibromyalgia. Because many of the symptoms can be caused by other diseases or syndromes, doctors must rule out the other illnesses before they can diagnose fibromyalgia. This is called a diagnosis of exclusion. The onset of symptoms can be very gradual or they can come on suddenly. A thorough medical history may reveal if there has been a physical or psychological stress that occurred just before the onset of symptoms. For example, statistics have shown that about 22 percent of patients with fibromyalgia 4

5 symptoms had experienced whiplash not long before, but researchers aren t convinced that this plays a role. Interestingly, many patients with fibromyalgia, as with other chronic pain syndromes, also have a childhood history of physical or sexual abuse. According to specialists, to be diagnosed with the syndrome, you must have spontaneous chronic widespread pain (pain that appears out of nowhere, not caused by an accident or injury) that involves both arms and legs, and the trunk of your body. The pain may be different from person to person. One may complain of a deep aching pain, while another may complain of a stabbing pain. The pain may come and go, although most people describe it as constant pain that can get worse from time to time. This pain may be severe enough to limit every day activities. When looking for fibromyalgia, doctors also look for tender points. These, as described earlier, cause deep pain when they are pressed. Of course, the doctors also look at the signs and symptoms and then put the pieces of the puzzle together. How is fibromyalgia treated? Unfortunately, there isn t any particular onesize-fits all treatment for fibromyalgia yet. In fact there is no treatment for fibromyalgia at all. There are some treatments that are helping some patients with some symptoms, but for others, they may not do anything. And, even with treatment, it s rare that all the symptoms will go away. In 2007, a group called the European League Against Rheumatism (EULAR) published treatment recommendations for fibromyalgia, which they say that they will update every five years. The guidelines currently stress the importance of a complete and comprehensive evaluation of the patient, including pain, function and any psychosocial issues involving the patient. They then recommend using a team approach to treatment, rather than just one. This means using medications along with heated pool exercises and/or swimming, individually tailored exercise programs with strength training, and cognitive behavior therapy for psychological support. Medications that are used aren t specifically for fibromyalgia, but they have been found to be helpful for some people with the syndrome. These include antidepressants, which have been found effective in treating chronic pain, analgesics (pain killers), and even medications used to prevent seizures. Antidepressants: The older antidepressants, tricyclics such as amitriptyline, have been found to reduce pain and improve every day function, but some of the newer antidepressants, the serotonin reuptake inhibitors (SSRIs), such as fluoxetine, the serotonin norepinephrine reuptake inhibitors (SNRIs), such as venlafaxine or duloxetine, and 5-HT3 receptor antagonists, such as tropisetron, have also been found to be effective. Analgesics: Generally, many patients manage with the use of over-the-counter medications like acetaminophen, or weaker prescription medications. However, tramadol, a controlled drug, is often recommended for flare-ups of fibromyalgia pain. Some patients wonder why they aren t given stronger pain medications. Along with corticosteroids, stronger pain medications like Demerol or morphine are not recommended. Antiseizure medications: Pregbalin (Lyrica) has recently been approved by the United States FDA for the treatment of fibromyalgia. Researchers found that pregbalin helped moderate the pain process and reduce the painful sensations. What happens after you ve had fibromyalgia for a while? Fibromyalgia isn t a fatal disease nor is it a 5

6 progressive disease, which means it usually doesn t progress from mild to moderate to severe. Fibromyalgia also doesn t progress into any other disease. That being said, the pain and fatigue from fibromyalgia can cause a person to become depressed or anxious and this can become a vicious cycle. Also, the difficulty in managing with fibromyalgia may result in isolation as it becomes too difficult to work, to get out of the house, or to see friends. Making meals can become too difficult, resulting in malnutrition. Poor sleep contributes to fatigue, and that also becomes a vicious cycle. Early treatment may help reduce the symptoms and prevent these other issues from popping up. What is being done for fibromyalgia? Researchers are continuing to try to identify the causes of the syndrome. Treatment can t be targeted until they know why fibromyalgia occurs. Experts will continue revising the diagnostic criteria in order to fine tune the diagnosis. But importantly, raising public awareness is a major issue. It s only with public education that people will realize that fibromyalgia is a true medical illness, with diagnosis and management, and not a figment of someone s imagination or a ploy to get attention. Spine University's Guide to Fibromyalgia 6

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