Fibromyalgia Education and Research - AFFTER

fibromyalgia. These seemingly unrelated symptoms are described in scientific literature as Central Sensitivity Syndrome (CSS) and include: irritable bowel syndrome (IBS), restless leg syndrome (RLS), temporomandibular joint pain syndrome (TMJ), regional FM or myofascial pain syndrome (MPS), chronic fatigue syndrome (CFS), multiple chemical sensitivities (MCS), migraine, and sleep disorders. The symptoms of fibromyalgia are unique for each person and vary both in intensity and frequency. AFFTER published research* that demonstrates a significantly higher percentage of specific symptoms in the FMS group compared to a control group (gender matched without fibromyalgia), such as: muscle pain in the neck and shoulders, muscle spasms, cramps, chest pain, changing vision, anxiety, moodiness, restlessness, hives and skin sensitivities, cognitive impairment, low grade fever, night or cold sweats, cold/heat intolerance, chronic sinusitis, dry mouth and skin, carpal tunnel pain, night driving difficulty, allergies, numbness and tingling of extremities, dizziness, pelvic pain, sensitivities to light, sound and chemicals - and the list goes on.

*Fibromyalgia Patients Report Many Symptoms Other Than Pain and Fatigue (and other published studies available at: www.affter.org/research.htm)

TREATMENTS

Unfortunately, there are few highly effective treatments that provide more than temporary, symptomatic relief and typically do not result in progressive improvement. Before the FDA approved Lyrica to treat FMS in 2007, there were no medications specifically approved for FMS at all. That development gave FMS validity in the eyes of the medical community and hope to FMS sufferers. Progress is being made and studies are ongoing in search of additional medications and other treatments for FMS. Being sensitive to medications, many sufferers turn to alternative therapies such as physical therapy, massage, myofascial release, acupuncture, biofeedback, trigger point injections, exercise, modifications to diet, supplements, etc. It is likely patients benefit from combinations of pharmacological and alternative treatments. EDUCATION

Patients need to become educated about their disease so they can learn how to control the symptoms. AFFTER’s own studies show, if the patient does their part and has a physician who is supportive and knowledgeable about FMS, they cope better. A good source for information about doctors and treatments can be from others who have fibromyalgia. A quality support group offers a safe place to exchange such information to help one cope with this illness. AFFTER runs multiple support groups, hosts seminars and fund raising/awareness events, and publishes a variety of free literature. We take an active role in educating patients and families, as well as the public and medical community. RESEARCH AND FUNDING

There is no known pathology or firm laboratory test to diagnose this syndrome and has been relatively little research funding for this illness considering the number of people it affects so profoundly. Although research progress is slow, we have learned a lot in the last decade. Abnormalities involving pain processing in the central nervous system of FMS patients has been discovered. Spinal fluid samples show an excess of neurotransmitters that transmit pain (Substance P) and deficiency of those that control pain (serotonin). This means there is an increased signal of pain with less than the normal ability to stop it. Other biological abnormalities involve dopamine, norepinephrine, tryptophan (an amino acid that is converted to serotonin), and hormone dysfunction. Growth hormone is needed by the body to repair muscles, ligaments and tendons and is produced during stage-4 sleep. People with FMS typically are deprived of this deep sleep which creates a deficiency of these important elements. There are ongoing genetic studies hoping to find a gene involved in FMS. Recent years research, using brain imaging studies utilizing functional MRI (fMRI) technology, shows abnormal pain processing in the central nervous system of people with fibromyalgia. This same fMRI technology is being used to study the cognitive symptoms of FMS (commonly referred to as fibrofog).* The search continues for a diagnostic test to confirm a diagnosis of FMS, as this may hold the key to more research funding. AFFTER is on a mission to raise funds for research for fibromyalgia. We will continue to conduct charitable activities in order to award funds to FMS researchers. The answer is in the research… only more quality research will lead to the discovery of a diagnostic laboratory test, more effective treatments, and ultimately a cure for fibromyalgia.

*AFFTER has been actively involved in the study of fibrofog and other research. We recently awarded a grant for fMRI studies in an effort to put more pieces of this puzzle together.