The Story of a Fibromite

The Dormant Dragon

I suppose that often we hear that through heredity or destiny we are predisposed to certain traits or outcomes in our lives that we may not want or enjoy.  I am one of those people, and my tale of woe began early in my child-hood.  It was later that the "Dragon" reared his head and set before me Fibromyalgia (FMS).

When I was a child, I suffered with what the doctors called, “growing pains.”  I still hear people using this term, and I believe that it is an early sign of a health issue that will appear later in life.  To this day, when I hear a parent or grandparent mention how a child is suffering with “growing pains,” I immediately suggest that they see a doctor. 

I recall the excruciating pain that would sear through my limbs as my mother lathered my legs with topical pain creams and wrapped them in hot, wet towels, pinning over them a dry towel to keep in the warmth.  Countless nights I would toss and turn with tears until the pain would disappear as mysteriously as it appeared.  

As I grew older, these pains were replaced by new ones when severe menstrual cramping caused me to miss at least one day of school each month while I tossed and turned in my bed, tears streaming down my face.

Many articles and web sites will state that one of the characteristics of a "Fibromite" (my name for a sufferer of FMS) is a "type A" personality.  They are "movers" and "shakers" who have a penchant for perfection, and I guess that's also a description of me.

As I became an adult, it was out of necessity that I worked two jobs - one full-time and one part-time - in order to support my three daughters, my mother, and to maintain the house I bought.  I found that I really enjoyed maintaining my house, and I did it like a "man."  On hot summer days, you could find me putting on a new roof, laying bricks, or even creating a flag stone walkway from the driveway.  Painting the entire inside or outside of the house was actually fun, and on Sundays, the entire day was spent outdoors mowing, trimming, and edging until either dinner or darkness would send me indoors.

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During those years, I made as much time as possible for my girls, taking them and mom on vacations and driving all over the countryside.  This was our time together.

The Dragon Awakes

The years passed, and as I neared retirement I was forced to apply for a disability due to numerous surgeries (eleven to be exact) on my left foot.  Whether or not this was the beginning of what I now call “the end,” I can never be really sure.  Many Fibromites can pin-point the beginning of their suffering and attribute it to causes such as a car accident, a serious surgery, or a severe stressful time in their lives; however, I have a difficult time determining the exact reason why the Dragon appeared and decided to never leave my side. Perhaps it was a combination of that final foot surgery and two other serious surgeries, one that kept me in the hospital for twenty-one days.

It was 1988 when severe aches and pains became part of my normal day.  I was suffering, but I didn't stop doing the things I wanted and needed to accomplish.  I was planning a vacation with my husband and his sister that involved a long driving trip, and because I knew that I would be doing the majority of the driving, I was beginning to wonder if I could handle it.  I worried that the aches and pains I was suffering with would make this trip one that I would never forget.  I wasn't far from wrong.  I had never been in such misery as I was during that trip, and when I think back I wonder why I believed that I could do it.  This trip will forever be in my memory, and the most vivid recollections that I have are the times that I wanted to drive myself to the nearest airport to fly home and let my husband and sister-in-law fend for themselves.  Looking back, I should have done just that.

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Several years passed before I even thought about seeking information about why I was hurting so badly.  At times the pain was unbearable, yet sometimes it would leave me for a day, or even a week.  At that time, I attributed it to the fact that I was so much "on the move," doing plenty of things, so I figured, "why not the aches and pains?"  Waking in the mornings, I felt as if I had never slept at all, and the aches were usually the worst at that time.  Soon, I began to wonder and ask myself, "what in the world is wrong with me?"

The Dragon Has a Name

I began to feel as though I could no longer function, and that I needed more rest, or sleep, or to clear my head.  I needed something.  Anything.  So, I finally decided to see a doctor.  When I explained my many symptoms, he immediately referred me to a  Rheumatologist.  He first did a series of blood tests in order to rule out the diseases Lupus and Rheumatoid Arthritis (which happen to be two of many diseases which produce symptoms that can mimic those of Fibromyalgia.)  When those tests cam back as normal, he performed a testing of the "tender points."  If I had wanted to clobber a doctor right in the "chops," that was the time.  The pain was excruciating, and I felt as though I was in the hands of a torturer.  After this test was complete, the doctor sat down and gave me his final diagnosis -  Fibromyalgia.  I was silent for a moment, with my mouth half open before I heard the words come from my mouth.  "What in heaven’s name is that?”  

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The Battle Begins

For six years I suffered as doctors tried different medications to help diffuse the pain.  The majority of doctors will treat a Fibromyalgia patient with antidepressants (Elavil and Zoloft are just two of many) with the hope that this will reduce the pain and help the patient to sleep.  I, too, was treated with this type of drug, but within two weeks my daughter was rushing me to the emergency room.  I was suffering with symptoms of what seemed to be a stroke.  Fortunately, the symptoms were not caused by a stroke, but rather from a severe reaction to the two antidepressants that I had been taking to reduce the symptoms of my disease.  The 5 mg. dosage that I took nightly never reduced my pain and never helped me to sleep.  The only thing the drugs did was to land me in an emergency room, scared and helpless and feeling more depressed than I had ever felt before.

It wasn't long after that day that I was speaking on the telephone with a cousin, and I mentioned to her that I was diagnosed with Fibromyalgia.  She told me that she remembered seeing a book in her local bookstore that had the word, "Fibromyalgia" in the title.  The following week she purchased the book and mailed it to me.  Fibromyalgia & Chronic Myofascial Pain Syndrome by Devin Starlanyl, M.D. and Mary Ellen Copeland, M.S., M.A..  was the first book on my disease that I owned.  As I read, I learned that the co-author, Dr. Starlanyl, suffers with Fibromyalgia.  I wasn't even two chapter into the book when I felt that my socks were "knocked off."  Everything I was reading was written about me.  

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My learning didn’t end there.  In 1997 I received as a Christmas present a personal computer.  I didn't even know how to turn the thing on, but in record time was able to maneuver around this new "toy," and in a matter of only two months, I was hooked up to the Internet where I found my very first Fibromyalgia Internet support forum.  Talk about learning!  I quickly realized that there was so much more for me to know about this syndrome.

One support forum lead to a second, and in a short time I realized that many people did not understand or even know about Fibromyalgia.  I decided that recognition was what we needed - something that could help to bring this syndrome out into the "open."  I almost felt as though I wanted to become a teacher, and it was then that I decided that NationaliTees Co., Inc. would create the first tee shirt that would bring attention to Fibromyalgia.

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Life Goes On

I have had a lot of fun corresponding with the many people who have contacted me in order to purchase a tee shirt and tell me about how they are now teaching others about this syndrome.  And with each E-mail I receive, I think about the hope that I have that there is a spreading awareness of Fibromyalgia and of the many people who suffer with the daily pain.  I hope for more public television coverage on this topic.  I hope that more doctors will recognize this syndrome as one that is real and that needs treatment and attention.  And I hope for more research money to be granted to those who are now seeking a cause in order to find a cure. If not for me, then at least for the many children and teenagers who suffer with this awful syndrome.  If not for me, then at least for the young mothers who try to tend to the needs of their children while they struggle to mask their own physical and emotional pain.  If not for me, then for all of the wonderful people who deserve to live normal and pain-free lives.

If not for me – for YOU !!!!!