in good health, sound in body and mind
September 2, 2001
Please Note that all information and links provided are NOT meant as medical advice.
The information posted here is for informational purposes only!
I am not a medical professional; I am just another person
who wishes to help other's in their search for useful information.
Please check with your personal Medical Professional before
trying any new regime
and to verify it's validity and usefulness for yourself.
Through life's trials and tribulations, Mom has always emphasized the importance and power of positive thinking. She never complained and never focused on the 'down' side of things.
No matter what, she went to work every day, cooked meals, kept a house meticulously clean, and found time to give us a loving ear. We never knew just how much work that was, until we had homes of our own, families to care for, and careers to manage.
She is my hero, for she has always been focused on being the strong willed, determined woman who, in spite of life's ups and downs, has tried to teach us (her children) the power of dedication to love, life, family and career.
She firmly believes that there is power in thinking positive thoughts, instead of feeding the doubts and fears that we can all get caught up in, especially, when we don't feel "well".
She has always lived by the principal that happiness and "wellness" came from within ourselves and we had the power to make the best of what ever came our way in life.
Recently, she shared with me a secret....she didn't feel well and had been suffering from long term aches and pains that her solid, common sense, and conscientious efforts could not explain. She asked me to research an odd sounding condition that the doctor had told her she now had.......... called Fibromyalgia.
This site is devoted to the information I have found on this condition. I hope that through our efforts to research and understand this condition, we can help you find 'peace' in the knowledge that your pain is not imaginary and your aren't nuts or loosing your marbles! (You may have a loose screw or two, but, being wound up "too tight" is not good either!)
Once again, my Mom's legacy and philosophy of finding the positive in all things has shown true.
Through her desire to comprehend all the challenges that may lay ahead, we can learn from her example and learn to understand, respect, and have more compassion regarding things that aren't always obvious and we don't always understand.
And perhaps, we might gain more insight into the invisible pain and frustration others may be silently enduring.
This one's for you Mom!
Update from MisChif
It has been several years now since I first started this web site for my Mom. Since then, I too, have been officially diagnosed with Fibromyalgia, Myofacial Pain Syndrome and Chronic Fatigue Syndrome. And, these past few years, have been the hardest of my life.
Like most people, who suffer from these conditions, I have watched my entire life change as a result of the chronic fatigue, cognitive issues, constant aches and pains, and not being able to simply 'snap out of it'..and get better.
If you are a family member or friend of someone who is trying to overcome the effects of these conditions, and you are here, reading my pages, I welcome you!!
There are so many things that one must begin to understand and comprehend about these, often overlapping, illnesses.
The most important things you MUST keep in mind are:
These conditions attack the patient's self esteem!! These diseases are REAL and very complex. They involve the body's immunological, physiological and neurological systems. There is a lot of research being done to find the causes, and possible cures. There IS Hope! And.... most importantly...
acceptance and support
can make the journey
toward finding a treatment plan
which improves their condition
much less traumatic.
The following information is intended to help you learn more about FMS, MPS, CFS, and Multiple Chemical Sensitivity Syndrome (MCSS). I sincerely hope they point you in a direction that proves helpful..
What is FMS?
The following excerpts from: InteliHealth
"The term fibromyalgia means pain in fibrous and muscular tissues. It is a chronic condition of pain, stiffness, and usually fatigue.
Fibromyalgia is more common than most people realize. According to the American College of Rheumatology, fibromyalgia affects 3 to 6 million Americans. It primarily occurs in women of childbearing age, but children, the elderly, and men can also be affected. Sometimes children have it, but it is more common in adults, and more women have it than men.
Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and multiple tender points. "Tender points" refers to tenderness that occurs in precise, localized areas, particularly in the neck, spine, shoulders, and hips. People with this syndrome may also experience sleep disturbances, morning stiffness, irritable bowel syndrome, anxiety, and other symptoms.
Fibromyalgia is difficult to diagnose because many of the symptoms mimic those of other diseases. The physician reviews the patient's medical history and makes a diagnosis of fibromyalgia based on a history of chronic widespread pain that persists for more than 3 months.
The American College of Rheumatology (ACR) has developed criteria for fibromyalgia that physicians can use in diagnosing the disease. According to ACR criteria, a person is considered to have fibromyalgia if he or she has widespread pain in combination with tenderness in at least 11 of 18 specific tender point sites.
Studies have shown that aerobic exercise, such as swimming and walking, improves muscle fitness and reduces muscle pain and tenderness. Heat and massage may also give short-term relief. Antidepressant medications may help elevate mood, improve quality of sleep, and relax muscles. Fibromyalgia patients may benefit from a combination of exercise, medication, physical therapy, and relaxation."
Excerpt from The Fibromyalgia Advocate
by Devin J. Starlanyl.
© copyright the author. All rights reserved.
"Fibromyalgia is a chronic invisible condition that has finally come "out of the closet". Fibromyalgia isn't new. It was described by William Balfour, a surgeon at the University of Edinburgh, in the early 1800s. For many years it was called by different names, including chronic rheumatism, myalgia, and fibrositis.
In 1987, the American Medical Association (AMA), recognized FMS as a true illness and a major cause of disability. Now, nearly ten years later, it is still too often dismissed as the "newest fad disease". Most physicians lack the training to diagnose and treat it. It is incorrect and a disservice to the patient to lump all soft tissue chronic pain conditions as fibromyalgia.
FMS is a chronic non-degenerative, non-progressive, noninflammatory, truly systemic pain condition. Diseases have known causes and well-understood mechanisms for producing symptoms. FMS is a syndrome, which means it is a specific set of signs and symptoms that occur together. This does not mean fibromyalgia is any less serious or potentially disabling than a disease. Rheumatoid arthritis, lupus, and other serious afflictions are also syndromes. The term "syndrome" is a measure of our ignorance, not a reflectance of the impact fibromyalgia has on our lives.
Laboratory tests for fibromyalgia are valid only to rule out other conditions. There is still no blood test that can accurately identify fibromyalgia.
FMS can occur at any age. Many doctors who are expert diagnosticians of FMS have picked out developing FMS in children at the toddler stage. There are also people who develop FMS in their geriatric years. The first trigger points of MPS may occur during birth.
About 25 percent of the FMS patients I see are men. This ratio still differs from most sources in the literature. I think that this is due to FMS being under-diagnosed in males. Pain is frequently the most prominent symptom of FMS, but there are many others. You will learn why when you get to the section about neurotransmitters. This is an emerging field, and the majority of health care practitioners out there know little about them, and yet they run, and can ruin, our lives.
Your thermal regulatory system may be out of whack. You may notice this thermal fluctuation when you get out of bed (perhaps often, due to TrP bladder irritability) during the night. You may have to wait for your temperature to cool down after getting back in bed, before you can pull the bed covers up again. Your hormones become unbalanced.
Fingernails can break off, often in crescent-shaped pieces. If nails do grow, they sometimes start to curve under. Your cuticles may overgrow, and yet they develop hangnails which take a long time to heal. You get bruises, but you can't remember where you got them, and they take forever to heal.
FMS is a sensitivity-amplification syndrome. This means that you can be are hypersensitive to smells, sounds, lights, and vibrations. The noise emitted by fluorescent lights can drive you crazy. You may be unable to tolerate crowds, or cities. Your body might interpret touch, light, or sound as pain. Your brain knows pain is a danger signal--an indication that something is wrong and needs attention--so it mobilizes its defenses. Then, when those defenses aren't used, it become anxious.
Sleep, or the lack of it, plays a crucial role in FMS. Perhaps you aren't getting enough sleep, or the right kind of sleep. You may have insomnia of several types, or a host of other sleep-related problems. People with FMS often have the alpha-delta sleep anomaly. As soon as we reach deep delta level sleep, alpha waves (awake) intrude and either jolt us to an awakening or to a lighter stage of sleep. We wake up feeling like we've been hit by a truck. That's the sign of unrestorative sleep. Our body heals and many of our neurotransmitters and other informational substances are restored and regulated during delta sleep. One might say that neurotransmitters are the "information superhighway" between the body and mind. People with FMS have sleep deprivation.
Only about 20% of FMS cases have a known triggering event that initiates the first obvious "flare." During a flare, current symptoms become more intense, and new symptoms frequently develop. Life is out of control. Even the best organized support systems become strained at this time, and your whole focus has to be on survival. "
Fibromyalgia Doctor's Assessment Form
Original Source Devin Starlanyl devstar@EMPATH.WIN.NET
Original Date: December, 1995
This questionnaire may be used by your doctor to assess your condition and functional impairment. Fibromyalgia Residual Functional Questionnaire
[modified from the Fibromyalgia Impact Assessment Form developed by Mason,J Silverman,SL Weaver,AL et al, (Arthritis Care Res. 4:523, 1991)]
This page and other sources of useful information can be found on the
Fibromyalgia Awareness Page
What Is Brain Fog?
Visit Nurse Marilyn's page on 'brain fog'
Marilyn J. Kerr RN © 1997,1998, 1999, 2000
Fibromyalgia & Chronic Myofascial Pain Syndrome
Except as noted, all content & Copy is copyright 1995-2000
Devin J. Starlanyl & Mary Ellen Copeland
A Guide for Relatives and Companions
Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual
by Devin J. Starlanyl and Mary Ellen Copeland M.A. M.S.,
© copyright 1996, the authors. All rights reserved.
A Physician's Guide to Fibromyalgia Syndrome
David A. Nye MD
The Chronic Fatigue Immune Dysfunction Syndrome/
Fibromyalgia Information Page
by Marilyn J. Kerr RN
Fibromyalgia Pain Diary Worksheet
A national support organization for individuals with FMS that publishes an informative newsletter.
Living With Fibromyalgia (FMS) and
Chronic Myofacial Pain Syndrome (MPS)
An EXCELLENT resource site.
Including online support group, guidelines for friends and family, SSDI tips, etc.
F.A.C.E.S. INC. Firbromyalgia Association Created for Education and Self-help,
a network of self-help groups in the Chicago metropolitan area:
send email to: email@example.com or call Sabrina Johnson at 773-731-1228.
Fibromyalgia Association of Greater Washington
Fibromyalgia Network News
The National Fibromyalgia Awareness Campaign
The Fibromyalgia Alliance of America
The Oregon Fibromyalgia Foundation.
Information clearing houses
Fibromyalgia - Online Support GroupsFibrohugs
Live Chat Room Action
CFIDS/Fibromyalgia Self-Help course
A solution-oriented discussion group for people coping with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), fibromyalgia (FM) or related illnesses. Classes are offered both online and in-person. Our groups are supportive and focus on practical strategies for improving quality of life and, where possible, increasing chances for recovery.
The name "Co-Cure" stands for "Co-operate and Communicate for a Cure." The mailing list has been established with the goal of furthering co-operative efforts towards finding the cure for the illness(es) commonly referred to as Chronic Fatigue Syndrome (CFS) and Fibromyalgia
Other Helpful Sites
Neurontin FAQ Page
(Includes information regarding the Parke-Davis
Patient Assistance Program for patients taking Neurontin)
The Invisible Disabilities Page
Bandaides And Blackboards
"When Chronic Illness..Or Some Other Medical Problem..
Goes to School"
This is by far the best site about kids and chronic illness.
Joan Fleitas knows her subject well and writes with much empathy. This should be your first stop.
Medical Resource Sites
Learn about the latest medical advances and those who make them at Johns Hopkins University and Health System, one of the world's foremost health research and treatment centers, and the hospital named "the best of the best" for seven consecutive years by U.S. News and World Report.
The National Center for Infectious Disease
The mission of NCID is to prevent illness, disability, and death caused by infectious diseases in the United States and around the world.
The Arthritis Foundation
The mission of the Arthritis Foundation is to support research to find the cure for and prevention of arthritis and to improve the quality of life for those affected by arthritis.
Sapient Health Network
SHN is an interactive health information service developed for people with chronic and serious illnesses.
Google - Health Search
Medical Word Search
National Jewish Medical and Research Center -Respiratory and Immulology Glossary
The Journal SLEEP (Home Page)
The Journal SLEEP is sponsored jointly by the following international societies: the American Sleep Disorders Association the Sleep Research Society the European Sleep Research Society the Latin American Sleep Research Society and the Japanese Sleep Research Society. The Journal SLEEP was founded in 1979 by Christian Guilleminault, M.D. and William C. Dement, M.D., Ph.D. The Journal SLEEP is an international, peer reviewed journal that is published ten times per year.
The American Sleep Disorders Association (ASDA)
The American Sleep Disorders Association (ASDA) is a professional medical association representing practitioners of sleep medicine and sleep research. Sleep disorders medicine is a clinical specialty concerned with diagnosis and treatment of patients with disorders of sleep and daytime alertness. The spectrum of sleep disorders ranges from primary dysfunctions of the neural mechanisms of sleep and arousal (such as narcolepsy) to sleep exacerbated medical conditions (such as chronic obstructive pulmonary disease) to disturbances associated with medical, psychiatric, or behavioral syndromes.
Alternative Treatments for Fibromyalgia
Questioning Alternative Treatments for Fibromyalgia
November 21, 1997
Copyright: The Johns Hopkins University, 1997. All rights reserved.
BALTIMORE (Johns Hopkins) - It's one of the most frustrating and baffling disorders in America. It probably affects 2 to 3 percent of the population, causing a lot of generalized pain and aching. Sufferers have trouble sleeping and are tender to touch. Yet modern medicine doesn't understand it or know how to cure it.
It's called fibromyalgia. It's really a collection of symptoms with no clear underlying disease. Put simply, doctors don't know what causes it, but the pain and suffering drives many people to alternative cures and therapies. Johns Hopkins doctor Nathan Rudin says the search for relief is understandable - the Internet is full of talk about fibromyalgia - but he cautions that none of the alternative treatments are proven.
"There are all sorts of folk remedies [and] Chinese herbal remedies," says Rudin, "some of which may [be] relatives of non-steroidal drugs, Valium or other potentially addictive or dangerous things that people have tried. So you really have to watch your step."
Words From The Wise
(Excerpt taken from Doctor Patient Communication Tips, courtesy of Quackwatch)
When consulting a doctor, try to present a detailed and well organized account of present symptoms and relevant past history. Before contacting the doctor, it may help to draw up a list to guide your presentation. If there is more than one problem, start with the most important one. If you have a particular concern, bring it up at the beginning of your visit. If medications are being taken, either write down their names and dosages or bring the original bottles to the appointment.
Multiple Chemical Sensitivity Sites
Based on my recent visit to an Occupational Health Specialist, I would like to suggest that anyone who is suffering from FMS or CFS start paying attention to the petrochemicals in their environment.
Petrochemicals have neuro-toxins that cross the blood barrier and go directly to the brain. Exposures to neuro-toxins triggers the immune system into action which then produces a higher T cell count.
T cells also attach to collagen and this is a suspected link to the aches and pains most people feel when they have the flu or a cold. Hence, an elevated T cell count is suspected as a possible mechanism in the chronic muscle aches described by people who suffer from FMS and CFS.
Neuro-toxins are found in a variety of products including, perfumes, air freshener, cleaning products, laundry products, hair care products, and especially pesticides.
Many of us who grew up in the 50's and 60's were exposed to pesticides that were once thought to be safe, such as DDT in crop sprays and mesquito fogs used in the US. And as unfortunate as it is, we are constantly being exposed to fumes from dryer sheets, hair sprays, dishwasher soaps, as well as auto emissions, and pesticides used on produce and lawns, etc.
The truly sad part is that we are slowly being poisoned by things that prevail in our daily lives and no one realizes it! However, Occupational Health doctors do recognize chemical toxidity is a contributing factor to many illnesses and they are fighting the battle of educating the public and getting laws passed to protect our children from being exposed to pesticides when schools are being sprayed.
Changing our lifestyles to avoid petrochemicals and Neuro-toxins is not always easy because we still have to clean, go out in public and be around people who wear perfumes, deoderants, hair sprays, and the bottom line is that we can't live in a glass bubble.
As for me, I've become much more aware of how these things are effecting my health. Based on the benefits I've personally experienced from avoiding petrochemical based products, I feel fairly confident that this is worth paying attention to. I've had CFS and FMS for several years now, and it's become very difficult for me to do things I used to do, like going shopping. When I do have to go to the stores anymore, I avoid the cleaning product and person hygiene isles.
I use non-toxic cleaning products and try to eat organic as much as possible. And, I have to say that since I changed some of these lifestyles, I don't feel quite as achy as I once did. I never considered the possibility that these things were contributing to how I was feeling!
Essentially, it's simply a matter of recognizing the possiblity that you may have developed an allergy to these things and trying to avoid the products that trigger the various side-ffects.
Personally, I think everyone should try to adopt a more 'Health Conscious Aareness' of the effects of Neuro-toxins in our day to day lives and try to eliminate them as much as possible.
I strongly urge you to research the information that is available regarding Chemical Sensitivity and the side effects of chemicals in our day to day lives.
Chronic Fatigue Sites
The Fibromyalgia Advocate:
Getting the Support You Need to Cope with
Fibromyalgia and Myofascial Pain Syndrome
by Devin J. Starlanyl
"Devin Starlanyl has done it again. She has compiled and distilled current research and theory about fibromyalgia into a readable book that will empower everyone who reads it. Reading the appropriate sections in The Fibromyalgia Advocate will enable those who endure chronic pain to go to their caregiver (whether physician, chiropractor, physical therapist, nutritionist, or pharmacist) armed with the knowledge to ask pertinent questions, to insist on consultation when necessary, and to participate productively in their own treatment. Such people will be much less likely to be dismissed by practitioners ignorant of the basic facts about fibromyalgia and musculoskeletal pain. For these reasons, this book is a 'must-read."'
Robert Gerwin, M.D., Department of Neurology, Johns Hopkins University, Pain and Rehabilitation Medicine Center
"The Fibromyalgia Advocate is an invaluable resource for self-help that includes information on where and how to locate appropriate medical, legal, and financial resources. Devin Starlanyl has produced a monumental labor of love with candor and meticulous attention to important details, Her book provides a timely beacon to guide most people with musculoskeletal pain problems through dark, confusing, and frequently antagonistic array of health care and disability insurance providers into the daylight of pain relief and respect."
David G. Simons, M.D., Clinical Professor of Medicine at Emory University
Fibromyalgia and Chronic Myofascial Pain Syndrome:
A Survival Manual
by Devin Starlanyl and Mary Ellen Copeland M.S., M.A.,
Multiple Chemical Sensitivity - A Survival Guide
by Pamela Reed Gibson, Ph.D
On Line ResourcesGreenMarket.com
Want to reduce toxins, pollution, waste, and cruelty? Start by shopping smarter and greener! Our market makes it easy for you to find truly healthy, earth-friendly alternatives that make a difference. Learn more about why green shopping is so vitally important. Welcome & enjoy!
Medical ID Jewelry
This site offers an alterntive to wearing stainless steel medical alert 'tags' that may leave a 'greenish' color on your skin. The gold is expensive, but the Sterling Silver Id Bracelets are priced from $53 . Their gold and silver lockets are sold seperately and are reasonably priced.
Social Security Disabilty
May 12th is FMS/CFS National Awareness Day
NFRA FMS Awareness Pin
available through the
National Fibromyalgia Research Association
PO Box 500, Salem, OR 97302
For MORE Information on FIBROMYALGIA
Try Barnes and Noble's Online Bookstore!!
Just type in Fibromyalgia in the search field below and click GO
OF MISCHIF'S MUSES PAGES
Click here for a complete list of the pages found on my website.
Thank you for stopping by!!
Please come back again soon.
P.S. If you find a link that no longer works,
please send me an email so I can remove it!!
© 1997, 1998, 1999, 2000, 2001 MisChif Design