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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 disease.
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 !!!!!
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