The American Fibromyalgia Syndrome Association, Inc.

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AFSA is an all volunteer nonprofit organization dedicated to funding research that investigates the causes and treatments for fibromyalgia syndrome.

A 501(c)3 Nonprofit Charitable Organization.

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

Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe.1 Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain.2,3

Regional muscle pain not related to arthritis or the nervous system also occurs in the majority of people with fibromyalgia.4 Patients describe this as firm knots in the belly of muscles, often causing restricted movement and radiating pain.5 These muscle nodules are myofascial trigger points and some researchers suspect that these painful areas overlap with the tender points used to diagnose fibromyalgia.6

The symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans. You may feel as though you have to "push yourself" to get things done.7

Most patients with fibromyalgia say that their muscles feel like they have been pulled or overworked, and sometimes they twitch or cramp.8 Even the skin may feel badly sunburned.9 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.

Given that the symptoms may be similar to a viral flu, experts in the field of fibromyalgia and chronic fatigue syndrome believe that these two illnesses may be one and the same.10 Gulf War syndrome also overlaps with these two conditions.11

Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more.12 In addition, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person's overall pain rating.13 The muscles in these painful areas can feel tight, knotted and rope-like. Pressing on the firm, knotted region hurts and often causes the pain to shoot to other muscles when a myofascial trigger point is present.

Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though their arms and legs are weighted down by concrete blocks and their bodies may be so drained of energy that every task is an effort.7

Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks.14 This symptom is referred to as "fibro fog" and may hinder job opportunities. In particular, fibromyalgia patients have serious difficulty retaining new information if they are distracted.15

Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep, but the unrefreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep.16 As a result, the night is spent in "quasi-sleep" and patients wake up feeling as though they have been run over by a Mack truck. An overnight sleep study will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified.17

Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse.18 This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients.19

Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating, abdominal gas, and nausea represent symptoms commonly found in roughly 40 to 70 percent of fibromyalgia patients.20

Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component.21 Referred pain from myofascial trigger points in the shoulder, neck, and head muscles are suspected to be responsible for most tension-type headache and also play a role in migraines.22

Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain and affects one-quarter of fibromyalgia patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.23

Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur.24,25,26 Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.27

Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.12

Fibromyalgia Quick Facts

  • Affects 3 to 5 percent of the general population28
  • Occurs in people of all ages, even children
  • Men develop fibromyalgia too, although more women are diagnosed with it
  • Symptoms are chronic but may fluctuate throughout the day
  • Roughly one-quarter of people with fibromyalgia are work-disabled12
  • FDA approved the first drug for fibromyalgia in 2007 and more treatments are being developed

References

* Reposted with permission from Fibromyalgia Network. www.fmnetnews.com/basics-symptoms.php


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The American Fibromyalgia Syndrome Association, Inc. (AFSA)
PO Box 32698, Tucson, AZ 85751 • Phone: (520) 733-1570 • Fax: (520) 290-5550
Federal Tax I.D. 77-0355224 • Copyright © 1998-2011

This site is provided for informational purposes only.
Patients should always consult their physician for medical advice and treatment.

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