Fibromyalgia

Fibromyalgia is an illness that is often misunderstood. Some informative resources are listed below.

Fibromyalgia & Chronic Fatigue Syndrome Resource
Dominie Bush's My Fibromyalgia & Chronic Fatigue Syndrome

An NFA Special Announcement
May 15, 2003
Newsweek Covers Fibromyalgia

The May 19, 2003 issue of Newsweek magazine feature's an article called "Fibromyalgia: Not All in Your Head." Newsweek reporter Anne Underwood gives an accurate, updated review of what it is like to live with the illness and how new research findings are helping us to understand this physiological condition. This article will help put to rest the myths and inaccurate information about fibromyalgia that has been published in the past. As the article states, "It's a new day in fibromyalgia!"

Click Here to read the May 19, 2003 Newsweek Article.

I Am The Tortoise!!!!!!
- Marilyn Sue

Even though I experience immeasurable pain and fatigue, I did manage to complete a special goal which I set for myself. This is my first attempt at writing a book and I am very happy to convey that it has been endorsed by The National Chronic Fatigue Immune Deficiency Syndrome (CFIDS) Foundation. This organization is to CFIDS the same as the Arthritis Foundation is to arthritis sufferers. The name of the book is Fibromyalgia Syndrome - Fighting the Devil with the Patience of Job (A Victim's Point of View & Survivor's Guide) by Marilyn Sue.

Over 25 million people have already been diagnosed with CFIDS. Fibromyalgia is usually a side affect of this disorder and/or can mimic CFIDS and vice versa. Fibromyalgia (without being coupled with CFIDS) affects over five million people in the United States alone and is one of the fastest growing diagnosis made by rheumatologists today.

I am a survivor of fibromyalgia and I understand the pain and agony associated with it and how it can cause havoc on other parts of our lives such as financial issues, disability issues, relationships, self-worth, etc. Personally, because of the devastations I experienced from having this painful and chronic disorder, I had to look deep within the darkness to find a flicker of what was left of my soul before the depression, pain and lack of self-love swallowed me up completely. Through the writing of this book I found myself again and have been able to help other people deal with their personal situations as well.

Negativity is not a creation of FMS, but is a by-product of having to deal with so much at one time and the many losses that comes from having a chronic painful illness. Many other illnesses create negativity as well ,and it is extremely difficult to find anything positive about having to live with them. They say that we grow stronger within the realm of hardships. I say "how strong do we need to be?" But nothing is without purpose. Through it all, I have learned to be more patient with others and myself and I have learned to be more sympathetic towards the issues of others. I see now that we are not infallible and if we never find the empathy within us to understand (but not pity) other people for their plights in life, then we will never learn the meaning of the words "unconditional love." It is this type of love that God wants and needs us to understand. In saying this, I do not mean that God gave me this illness in order to learn what unconditional love or strength is. What I am saying is that because I have experienced fibromyalgia first-hand, I was forced to learn patience, understanding, limitations and yes, unconditional love not only for myself, but for others simply because it is the only way one can survive when the physical body does not do what the mind wants it to do.

We must find any and all of the positives that we can from our own personal struggles in order to deal with each of our own personal situations. Through the midst of pain, torment and fatigue, each of us must find our own way out of the darkness into the light. The travel time is long. The road is rocky. Simply put, we can lay down and let the rest of our lives pass us by and learn nothing. Or, we can use what little strength we can muster to continue to find ways to make our own lives and the lives of others more tolerable. Sometimes it may look as though there is no choice. That there are walls up at every corner. That the pain is too painful or the fatigue is too tiring. But what I have learned is that if I don't try, then I will never accomplish. I may only be able to tear those walls down inch by inch whereas a healthy person may be able to knock it down brick by brick. It doesn't matter how long it takes to knock it down. What matters is that I at least TRY. Giving into something or giving up has never been the answer and never will be. People like me will always have to struggle more often and harder. But in the end, I am the tortoise. I will get there....it is just a matter of when.

Here is an article published in the 2003 Spring issue of the FORUM Newsletter written by The National CFIDS Foundation:

"Fibromyalgia is painful. It's incurable. And it's chronic. This book is by a sufferer of FMS and tells of her own personal journey not to lose herself to FMS. It's an enlightening book that is NOT full of the usual trivialities but one of substance that seeks to give the reader the benefit of her own gained knowledge over many years.........this one will be a well-thumbed treasure for your library.

It took a lot of knowledge and many experiences for Marilyn to realize that she is a person with FMS and not merely an FMS victim. A severe car accident led her to being injured but she recovered only to have other symptoms creep in and steal away her life bit by big. A decade and many ups and downs later, she was finally diagnosed. The rest of the book is when we glean her knowledge: what certain tests measure, what specific medications do and what they can do, self-help measures, the dos and don'ts of exercise, relationships, disability issues, resources, and her very own 12-step program. The 12-step programs spells out fibromyalgia with each letter standing for a step beginning with the letter 'F': which is 'Focus on the positives in my life and only attempt to control those things that I have the power to control.'

This is a book that every primary FMS patient will enjoy reading and may want to circulate it among their friends and relatives. They'll enjoy it, too!"

Fibromyalgia Syndrome - Fighting The Devil With The Patience Of Job (A Victim's Point of View & Survivor's Guide)
Reviewed by: Margaret McGonnigle
Author: Marilyn Sue
Publisher: Xlibris Corporation
ISBN: 1-4010-2380-0 hardcover
ISBN: 1-4010-2379-7 paperback
Price $18.69 (paper) $31.99 (hardcover)
(888-795-4274) or Order Here

The outside cover of this book is done in "fire" which not only signifies the pain that sufferers live with but goes along with the title of the book itself. A copy of the book and an excerpt of it can be seen and read here.

Hi. . .My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!

I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said it 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out. . . the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

This is Dominie again -- I think that Terri, the author of this article deserves a medal! They have stated the fibromyalgia problem in terms that anyone can understand. So often our families, friends, bosses and co-workers have no idea of what we are going through, because fibromyalgia is an "invisible" illness. I am thankful that after 14 years of suffering with FMS that I finally found ways to manage my condition. I have had 95% relief for over 5 years now! I invite you to check out my websites below and hope they are helpful to you also.
dom@fms-help.com