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FIBROMYALGIA, MYOFASCIAL PAIN AND
CHRONIC FATIGUE IMMUNE DEFICIENCY SYNDROMES
Fibromyalgia is best described as a disorder of brain chemicals, characterized by chronic diffuse body wide muscle pain, stiffness, fatigue and sleep disturbances.
People with these diseases have been categorized as, to name a few, malingerers, hypochondriacs and/or chronically depressed. They are ignored or insulted by the medical community as a whole. The doctors referred to Fibromyalgia, Myofascial Pain and Chronic Fatigue syndromes as the "All in your head" disease!!! Meaning that it was psychosomatic. They weren't completely wrong, it is all in our heads, but the problem is not a psychiatric problem, it is a circulation problem in the head or to be specific, the brain.
MRI and SPECT scan images have demonstrated that the circulation in the brains of people with FMS versus people with "normal" brain circulation have a significantly decreased circulation pattern in the brain, specifically it is in the areas of the Caudate Nucleus, Hypothalamus, Thalamus.
Because of the decreased circulation in these areas, there is a problem with the nerve conduction, the hormonal balance, and the synthesis of brain chemicals that keep our body balanced and healthy.
People with FMS present with associated signs and symptoms from the failure of the systems of the body to function properly. Every system is involved:
· The Circulatory System (Raynauds Phenomenen)
· The Brain and Nervous System (Numbness, Tingling, Sleep disorders, thermoregulation)
· Cardiovascular and Pulmonary System (Mitral Valve Prolapse)
· Uro-genital System (Irritable Bladder, Sexual Dysfunctions)
· Gastrointestinal System (IBS)
· Hormonal (Thyroid, Serotonin, Melatonin, Growth Hormone)
· Endocrine System
· The Limbic System (Emotion and Behavior)
· Autonomic Nervous System (regulation activity of Cardiac Muscle, smooth muscle, and glands.)
· Sympathetic & Parasympathetic Nervous Systems (Excitation & Relaxation of Muscles)
· The Lymphatic System (Immune response-CFIDS)
· The Musculo-Skeletal System ( Muscles and bones)
· Labrinthine System ( Equilibrium,POTS)
These are just to name a few of the systems that we have difficulties with. It is no wonder that we are medically complicated patients. With symptoms coming from all of these systems, no wonder doctors think we are crazy or hypochondriacs.
Prevalence of people with FMS:
In America there are about 268,000,000 folks. Some reporting agencies report 8 to 9% of the population have FMS. The NIAMS reports 5% of Americans with FMS. So if we take the conservative route and do our multiplication here we find that 5% X 268,000,000 = long pause here------or 13,000,000 (or 13.4 Million to be specific) people diagnosed with FMS. When one includes the Chronic Fatigue with a reported 2,000,000 to 3,000,000 and 5,000,000 for CFIDS. In 1993 Congress Appropriations Committees stated to NIAMS "There may be as many as 15,000,000 million Americans suffering with FIBROMYALGIA!". Males, Females as well as Adolescents and Children are diagnosed with these diseases. These numbers are courtesy of our own FMS Bob Dude.
Fibromyalgia is not a "New Fad Disease" !!!
Dr. William Balfour, a surgeon at University of Edinburg (vanWhy1994) documented his research of Fibromyositis (FMS) as early as 1816. Until the early 1980's, in regards to Fibromyalgia and Chronic Fatigue, there was virtually little published about them in the medical journals. Little serious research was being done to address the complex problems that we were exhibiting.
The medical doctors, in their defense, weren't and aren't educated very well on the complex problems associated with them. Even when you find a compassionate doctor who is capable of performing the correct tests to rule out what it is not, collagen problems, hormonal dysfunction, etc... He may be able to diagnose it, but then doesn't have much information to help you learn how to control it, or to help you get it into remission.
There is no known cause, there is no known treatment and there is no known cure. To make the matters worse, Congress allocated millions of dollars to research for Fibromyalgia and Chronic Fatigue Immune Dysfunction Syndromes and the money was spent elsewhere, only a fraction of the funds were actually spent on the research that it was allocated for.
People are suffering with UN-imaginable pain, overwhelming fatigue, as well as, the myriad of other associated signs and symptoms of the diseases. More and more of them have to leave their respective careers because of the disabilities, which they are manifesting.
It is only recently that the Social Security Administration began recognizing CFIDS as legitimate disability impairment. FMS still is not recognized. The only help that the disabled people can get help through the SSA is by having another associated disability impairment, and by the time that they finally get a favorable decision they are bankrupt and suicidal.
We have lost too many of our friends to this disease. America and the World have to combine efforts and help us to find the answers before many more are lost as well.
There are many other diseases like Multiple Sclerosis, HIV, ALS (Lou Gherigs Disease), Lupus as well as many more, which were known also as "All in their Heads!". It took many concerned people coming together in a concerted effort to bring these to light, and force the medical community to realize that they were real, and now there is much research being done to help the people suffering with these diagnosis. People with Fibromyalgia, Myofascial Pain, CFIDS etcetera would just like the same courtesy
God Bless to all, Kathy, President, Trustee Of Chronic Fatigue Research France. Inc.
Reply to:Kathy,
Help Organizations
Arthritis Foundation
1330 West Peachtree Street
Atlanta, GA 30309
404/872-7100
800/283-7800 or call your local chapter
(listed in the telephone directory)
World Wide Web address: http://www.arthritis.org/
This is the main voluntary organization devoted to all forms of arthritis. The Foundation publishes a pamphlet on fibrositis. Single copies are free with a self-addresses stamped envelope. The Foundation also can provide physician referrals.
The CFIDS Assocation of America,inc.
PO BOX 220398
Charlotte NC 28222-0398
1-800-44CFIDS 1-800-4423437
FAX 1-704-3659755
http://www.cfids.org/
Fibromyalgia Alliance of America
P.O. Box 21990
Columbus, OH 43221-0990
614/457-4222
Contact: Mary Anne Saathoff, R.N.
Fibromyalgia Association of Texas
3810 Keele Drive
Garland, TX 75041
972/271-5085
Contact: Ms. Faye Wright
Fibromyalgia Network
P.O. Box 31750
Tucson, AZ 85751-1750
800/853-2929
Contact: Ms. Kristin Thorson
Fibromyalgia Association of Greater Washington (FMAGW)
13203 Valley Drive
Woodbridge, VA 22191-1531
Phone: 703/790-2324
Fax: 703/494-4103
Web: http://www.fmagw.org/
Contact person: Tamara Liller National
National Fibromyalgia Awareness Campaign
(714) 921-0150