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Friday, February 28, 2014

In the Spotlight: Fibromyalgia

9:09 AM Posted by Stephanie Horgan , ,
Today's entry is the 2nd of 2014, where we have started a "Rare Disease of the Month" series. Last month was achalasia. My apologies on the delayed entry of this post- technically it is still February!  As Tiffany said in her previous post, our goal of this initiative is to bring awareness to 12 chronic illnesses that don't get much press but still can deeply affect those who live with them each day.
Snapshot:  
Fibromyalgia is a complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause. (National Fibromyalgia Association)

What is it? 
Fibromyalgia is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities. Symptoms include: moderate to severe fatigue, sleep disorders, problems with cognitive functioning, IBS, headaches and migraines, anxiety and depression, and environmental sensitivities. Research has documented neuroendocrine physiological abnormalities that may contribute to the symptoms. (National Fibromyalgia Association) 

How common is it? 
The exact prevalence of fibromyalgia in the U.S. population has not been thoroughly studied, but conservative estimates place the total between 3 to 5 percent of the general population . It is found more often in women than men. (Fibromyalgia Network) Roughly one-quarter of people with fibromyalgia are work-disabled. For more information on work-accomodations, check out the Job Accommodation Network website to for ideas. 

What about diagnosis and treatment?
Recent research has suggested a genetic component. The disorder is often seen in families, among siblings or mothers and their children. Fibromyalgia often occurs following a physical trauma, such as an acute illness or injury, which may act as a “trigger” in the development of the disorder. Increasing attention is being devoted to the central nervous system as the underlying mechanism of FM. Recent studies have suggested that FM patients have generalized disturbance in pain processing and an amplified response to stimuli that would not ordinarily be painful in healthy individuals. 

Since there is no known cure for FM, treatment focuses on relieving symptoms and improving function. A variety of prescription medications are often used to reduce pain levels and improve sleep. On June 21, 2007, the U.S. Food and Drug Administration approved Lyrica (pregabalin) as the first drug to treat fibromyalgia. Cymbalta (duloxetine HCl) was approved in June 2008; and Savella (milnacipran HCl) was approved in January 2009. Alternative therapies, such as massage, myofasical release, acupuncture, chiropractic, herbal supplements and yoga, can be effective tools in managing FM symptoms. Increasing rest, pacing activities, reducing stress, practicing relaxation and improving nutrition can help minimize symptoms and improve quality of life.(National Fibromyalgia Association) 
What is the social and emotional impact?
Many people with this illness may feel that others do not believe their illness is real, as there is not a lot of research in this area. Recently there was a study showing moderate evidence for specific changes in the brains of those with fibromyalgia. As more and more research as is done, it will help bring awareness and validation to those who suffer with this day after day. If you are interested in learning about more clinical trials in research that are geared toward fibromyalgia, check out this page, as it lists any open studies that are recruiting patients.

Having a chronic illness that includes fatigue and pain can severely affect the mental and emotional health of a person. According to the National Fibromyalgia and Chronic Pain Association, it is vital to implement a healthy sleep regimen, as well as develop an emotional support network. Many communities throughout the United States and abroad have organized fibromyalgia support groups. These groups often provide important information and have guest speakers who discuss subjects of particular interest to the FM patient. Counseling sessions with a trained professional may help improve communication and understanding about the illness and help to build healthier relationships within the patient's family. 

If you want to check out the best Fibromyalgia blogs, click for this list here

Hope this was informative!  Stay tuned for a new rare disease post each month.

Cheers,
Steph