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 profound exhaustion are not symptoms that people can see, but they are real and may be devastating for the person with fibromyalgia (FM). Although the invisible nature of the condition causes credibility dilemmas for patients, the number of research papers on FM continues to grow exponentially. 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).

Fibromyalgia is believed to be triggered by an event or threat to the body (infection, injury, disease, prolonged stress, trauma, etc.) that activates your pain processing system. Ordinarily, the pain circuitry quiets down once the event has resolved, but in genetically predisposed people, things go haywire and chronic widespread pain develops. In turn, the mishaps in the central nervous system (CNS) set off a snowstorm of other symptoms.

Pain normally serves a protective role, forcing you to take it easy so that your damaged tissues or pulled muscles can heal. It’s a danger signal designed to prevent you from risking further injury. Yet the chronic pain of FM has long outlived its purpose, resulting in a disease of the CNS ... yes, FM is a disease.

Although FM used to be considered a syndrome, or constellation of symptoms with widespread pain being key, it is every bit a disease as diabetes. Just as the pancreas does not generate enough insulin to regulate blood glucose, the CNS in people with FM fails to produce the right balance of chemicals to control pain.

FM 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. There is no blood test or biomarker for FM, and current treatments are of limited benefit.

The goal of AFSA is to fund more research that will lead to improved treatments and better diagnostic tools (other than just telling a doctor you hurt all over). Brain imaging studies and many research projects have identified how the pain processing systems are not working correctly ... and several of them were funded by AFSA. However, more research is essential for providing a better quality of life for people with FM, and that is why AFSA seeds research to step up progress in this field.

Symptoms

FM produces widespread pain, disturbed sleep, and exhaustion from head to toe. 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.

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

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.

Most patients with fibromyalgia say that their muscles feel like they have been pulled or overworked, and sometimes they twitch or cramp. Even the skin may feel badly sunburned. To help your family and friends relate to your FM 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. Gulf War syndrome also overlaps with these two conditions.

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. 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. 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.

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

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. 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.

Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of FM worse. 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 FM 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.

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 FM patients.

Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of FM patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component. 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.

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.

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. FM patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed. In fact, there is a brain region in people with FM that is suspected of amplifying ALL sensory inputs, leading to a variety of sensory sensitivities.

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.

Fibromyalgia Quick Facts

  • Affects 3 to 5 percent of the general population
  • 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-disabled
  • FDA approved the first drug for fibromyalgia in 2007 and more treatments are being developed

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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 © 1998-2021

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

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