Madisons Foundation - Moms And Dads In Search Of Needed Support

What

Fibromyalgia syndrome (FMS) is a chronic disorder characterized by pain throughout much of the body. The pain may begin gradually or have a sudden onset. Other, older terms to describe this condition include Fibrositis, Fibromyositis, Periarticular Fibrositis and Rheumatoid Myositis. All of these terms end in “itis,” which is actually incorrect because “itis" means inflammation, and there is no inflammation in Fibromyalgia. Fibromyalgia has now become the accepted term, but many people continue to be diagnosed with the other synonyms.

Who

FMS accounts for 7.5% of new diagnoses made among children and adolescents by pediatric rheumatologists. The disorder has an increased frequency among women 20 to 50 years old. The prevalence of the disease has been estimated between 0.7% and 13% for women, and between 0.2% and 3.9% for men.

Signs and Symptoms

Widespread tender areas on the back of the neck, shoulders, sternum, lower back, hips, shin, elbow, knees (muscle and joint pain) Fatigue Sleep disturbances; non- restorative (‘unrefreshing’) Reduced exercise tolerance Chronic facial pain or aching

Possible Causes

The cause of this disorder is unknown. Some studies suggest that fibromyalgia patients have abnormal pain transmission responses. Sleep disturbance associated with fibromyalgia has also been suggested as an actual cause for the condition. Another hypothesis suggests that the disorder may be decreased blood flow associated with defective skeletal muscle metabolism, which could cause chronic fatigue and weakness. Others have suggested that an infectious microbe, such as a virus, which at this point has not been identified, triggers the illness. Pilot studies have shown a possible inherited tendency toward the disease, though evidence is very preliminary. The disease can appear to cluster in families though it does not appear to be genetic in the strict sense. Patients are often told that their disease is a mental illness, but this is not strictly the case. Patients are told this because it is characteristic of this disorder that there is no inflammation or structural problem identifiable at the painful site. Fibromyalgia, though, is a disorder of pain perception, and the pain is very real. All pain, even pain from injuries, is a perception. Counseling and psychiatric attention can be helpful in the same way that anyone with a chronic, painful condition needs coping stategies, stress reduction, and relaxation techniques.

Diagnosis

Fibromyalgia requires a three month history of widespread muscle pain for diagnosis, with a certain number of specific tender “trigger points” in the muscles. Laboratory and X-ray tests are often used to help confirm the diagnoses, mainly by excluding other diseases. There are a variety of syndromes that are similar to fibromyalgia that require different approaches to treatment, including other trigger point syndromes, chronic fatigue syndrome, complex regional pain syndromes and rheumatologic conditions. It is important to diagnose these carefully.

Treatment

Treatment focuses on restoring sleep and daily functioning. Pain relievers, especially narcotics, are usually not helpful. Certain classes of antidepressant medications are often prescribed for the disorder. Studies show that antidepressants in low doses can improve sleep quality, decrease depression, relax craniofacial and skeletal muscles, and release pain-killing endorphins. Other medications that are used include medications that work on pain transmission pathways, such as gabapentin. Sleeping disturbances and severity of symptoms may be alleviated with a nutritious diet and avoiding caffeine. The single most effective intervention is starting and maintaining a low intensity exercise program. Studies have shown that fibromyalgia symptoms can be relieved by low impact (i.e walking and swimming) aerobic exercise, done at a low intensity level. Many times, physical therapists can be helpful in designing such a program. High-impact aerobics and weight lifting could cause increased discomfort. Gentle stretching and light massage may help relieve symptoms, as well as acupressure, acupuncture, and relaxation techniques. Severe cases of fibromyalgia may require a referral to a pain clinic. In mild cases, symptoms may go away when stress is decreased or lifestyle changes are implemented. A combination of treatments including medications, patient education, physical therapy, and counseling are usually recommended. Many fibromyalgia sufferers have found support groups helpful (see below).

Prognosis

Fibromyalgia is a chronic problem. The symptoms vary from patient to patient, sometimes improving, and at other times, worsening. Sometimes the symptoms can continue for months or years. A multi-faceted approach to the management and treatment of the disease is strongly recommended. There is no strong association that fibromyalgia syndrome results in an increased death rate.

Connect with other parents

In the spirit of community and support, Madisons Foundation offers the unique service of connecting parents of children with rare diseases. If you would like to be connected to other parents of children with this disease, please fill out this brief form.

Weblinks

Fibromyalgia Network
A comprehensive website with information about fibromyalgia and coping strategies, as well as links to support groups and ongoing research.

Medline Plus
An outstanding website with information about fibromyalgia as well as coping mechanisms and links to support group, research and ongoing clinical trials.

American Chronic Pain Association
A great website dedicated to providing support for patients and families with chronic pain.

Google Search for Fibromyalgia Syndrome (FMS)

References and Sources

www.rarediseases.org www.nlm.nih.gov/medlineplus/medlineplus.html www.emedicine.com www.theacpa.org Support Groups: American Chronic Pain Association P.O. Box 850 Rocklin CA 95677 Phone #: 916-632-0922 800 #: 800-533-3231 e-mail: ACPA@Pacbell.net Home page: www.theacpa.org