What is Fibromyalgia?

Pain in every muscle and the profound exhaustion are not symptoms that people can see, but they are real and may be devastating for the person with fibromyalgia. Although the invisible nature of the condition causes credibility dilemmas for patients, the number of research papers on fibromyalgia grew at an exponential rate between 1995 and 2004 (Friedberg F, et al. J Psychosomatic Research 63:143-6, 2007). While this is good news, the amount of U.S. government funding for fibromyalgia ranks in the bottom 10% (based on a financial report from the National Institutes of Health’s website).

Speaking at the MYOPAIN 2007 conference, AFSA’s medical advisor Daniel Clauw, M.D., said “We understand fibromyalgia as well as many conditions that are much more credible.” For example, he pointed to hypertension (e.g., high blood pressure), which is a credible disease, but doctors are still struggling to find effective treatments for their patients. In the year 2008, the National Institutes of Health (NIH) expects to award $393 million to study hypertension compared with the $9 million it plans to award for researching fibromyalgia. Despite recent gains in understanding this condition, the lack of an easy “gauge” for chronic pain—similar to the simple one for blood pressure—makes it difficult for people to grasp how fibromyalgia may cause so many symptoms and seriously jeopardize every aspect of a person’s quality of life.

Fibromyalgia varies from one patient to another, but the multiple symptoms it causes are often intertwined. For example, patients who do not sleep well will usually struggle with daytime fatigue, difficulty concentrating, depressed mood, and increased pain. Yet the diagnosis is based strictly on the painful aspects of the condition. Patients must have widespread pain and tenderness in all four quadrants of the body (using a tender point exam), and although there is no blood test or biomarker for fibromyalgia, the diagnostic criteria are accurate; severe widespread pain is not normal and its presence should prompt a doctor to conduct a tender point exam. Current treatment methods are geared at relieving the symptoms, particularly the pain and the sleep disorder.

The goal of AFSA is to fund more research that will lead to improved treatment options. This will enable physicians to target the cause of the symptoms, leading to greatly improved function and quality of life for the millions of people who struggle from day to day with fibromyalgia. Brain imaging studies and many research projects to identify how the pain processing systems are not working correctly in this condition have definitely provided a foundation for explaining how the symptoms can be so severe and persistent, despite any obvious lesion or structural abnormality. As Dr. Clauw, a University of Michigan professor, recently stated, “We know a lot about fibromyalgia.” Without a doubt, this condition is real, and with the help of your donations researchers will learn more about the causes of disturbed sleep, dyscognition, and how to develop more effective treatment options for people with fibromyalgia.

Symptoms

The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, disturbed sleep, and dyscognition (e.g., often referred to as “fibro fog”). Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.

Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they were pulled or overworked. Sometimes fibromyalgia symptoms include muscle twitches and burning sensations. More women than men are afflicted with fibromyalgia, and it shows up in people of all ages. A conservative estimate of its prevalence is 2% of the general population, but one large study found that chronic widespread pain in general population of women was 10%, so the prevalence of fibromyalgia may be as high as high as 4-6%.

To help your family and friends relate to your fibromyalgia symptoms, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuates from person to person, fibromyalgia may resemble a post-viral state. This similarity is the reason experts believe that fibromyalgia syndrome (FMS) and chronic fatigue syndrome (also called myalgic encephalopathy or ME) may actually be the same condition. Gulf War syndrome also overlaps with FMS/ME.

Common symptoms of fibromyalgia and chronic fatigue/myalgic encephalopathy:*

• Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.
• Fatigue - This symptom can be mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, making physical activity more difficult.
• Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine that recorded the brain waves of patients during sleep. Researchers found that the majority of fibromyalgia patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.
  Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck—what doctors refer to as unrefreshing sleep—it is reasonable for your physician to assume that you have a sleep disorder. Many fibromyalgia patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).
• Dyscognition (or fibro fog) - Patients may describe this brain fogged feeling in a variety of ways, such as difficulty concentrating, disorganized thinking, memory problems, and inability to stay focused or alert. Minor distractions may greatly impair cognitive functions in people with fibromyalgia.
• Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of fibromyalgia patients. Acid reflux or gastroesophageal reflux disease (GERD) also occurs with the same high frequency.
• Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this patient group.
• Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients. However, a 1996 published report indicated that close to 75% of fibromyalgia patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.
• Other Common Symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination may occur. Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications they are prescribed.
• Aggravating Factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to fibromyalgia symptom flare-ups.

Each of the above symptoms compound the difficulties that fibromyalgia patients have with managing their health, yet there is often substantial overlap. Studies show that the poor quality sleep in fibromyalgia is linked to increases in daytime fatigue, pain, and depressed mood. Dyscognition is also believed to be linked to sleep, but more investigations are needed. This gap in understanding the role of sleep is the very reason for AFSA’s sleep research initiative. In 2008 we hope to fund six projects looking at the intricacies of sleep and how they relate to our current understanding of fibromyalgia.

The American Fibromyalgia Syndrome Association’s (AFSA)
http://www.afsafund.org/fibromyalgia.html