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Cindy
Cindy's Story
pinkyscrossed@webtv.net
As a child and teenager I had a
lot of "growing pains". I was always
tired and my "bones" ached. I remember using Ben Gay at the
early age
of 11. Of course back then the word fibromyalgia was unheard of (at
least in "my world"). Everyone thought I was imagining the
pain, over
exaggerating the pain, a hypochondriac, etc.
Things just got worse as time went on. I developed a sleeping problem
when I was a Junior in High School after a man tried to break in my
bedroom window. From that point on I hardly slept and when I did it was
a light sleep and I tossed and turned. I am currently 37 by the way.
Anyway in May of 1997 I was involved in a hit and run accident (on
Mother's Day). There was damage done to the driver's side of the car.
I felt some pain in my hands, arms and back but nothing that required
going to the ER. Two weeks later the pain was becoming more severe. I
called my doctor and was unable to see her but was able to see her
Associate. He poked and prodded (later found out he was doing the
tender point exam) and said I had fibromyalgia. He gave me a pamphlet
from the Arthritis Foundation to read. I remember we were giving a
friend of my mom's a ride somewhere and I was sitting in the backseat
reading the pamphlet. The whole time I'm thinking "this is
me".
I was excited to know that I now had a name for my illness. That
excitement didn't last long. After a lot of research I discovered that
there was no known cause, thus no known cure. In addition I found out
that a lot of doctors either don't understand the disease or don't
believe in it. I began various anti-depressants as I also was diagnosed
years earlier with severe clinical depression. I had blood tests done
to rule out Lupus, Rheumatoid Arthritis and a rare blood disease. All
of these tests came back negative.
Within 3 months of my diagnosis I experienced what I thought was a heart
attack. I later learned I suffered from panic attacks and anxiety. I
was put on Buspar for this and it helped some. I eventually had to wear
a 30 day event monitor (twice) to make sure I didn't have a heart
condition. I also had an ultrasound with doppler performed on my heart.
Everything came back normal.
I was still having difficulties sleeping and was in a lot of pain. As
much as I liked my doctor I decided I needed to find someone who
understood FMS a little better. The next doctor turned out to be a jerk
so I moved on.
During all of this I noticed that I was having problems concentrating
and coping with even small details. This was very difficult for me for
two reasons: 1) I'm a perfectionist and 2) I was a Secretary for the
Director of Human Resources at a Medical School. This job required me
to be able to work pretty much without a lot of supervision; it required
extreme attention to details; confidentiality; to be able to work under
a lot of stress, etc.
My new doctor sent me to see a pain management doctor. He said he
treated his FMS patients with opiates. I tried Oxycontin (caused severe
migraines), Morphine, MS Contin, Duragesic Patch, Darvocet, Percocet and
some others I can't remember right now. I went through so many as I
either had bad side effects or they quit giving me relief. I quit
seeing the pain management doctor when he refused to treat my knee pain.
An MRI was done on it and since it showed nothing so he refused to
believe anything was wrong. I saw a Rheumatologist for the knee pain
and was given a cortizone injection which helped for about 2 weeks.
My doctor and psychiatrist tried me on several medicines some of which
were: Prozac, Immiprimin, Desaprimin, Paxil, Effexor XR, Zoloft
(currently taking), Seroquel (currently taking), Clonazepam (currently
taking), Trazadone, Soma, Sonata, Zyprexa, Celexa, Celebrex, Flexiril,
Fioricet, Vioxx, etc. I also take Prevacid (just had a test done and
found out I have gastritis) and Glucosamine (another doctor found out I
had arthritis in my knees).
I have tried taking Melatonin for sleep but it was causing me headaches.
I didn't realize this until I read somewhere it can cause headaches. I
had been having them daily and when I looked back to see what I had
started taking around the time the headaches started I came up with
Melatonin. I didn't take any last night and today my headache was at a
"1" on a scale of 1-10 (normally ranges from a 7-10).
I quit working in March of 1998 as I could no longer handle the stress
of the work environment. It wasn't until June of 1999 that my doctor
told me he felt I should apply for disability. I applied and in August
of 1999 I was approved (it was retro to September 1998). I was very
blessed as I never had to see any of their doctors or anything. It was
approved on the first try without any lawyers involved.
I'm sorry this is so scattered but I'm writing as my mind remembers
things.
My doctor decided he was going to stop his practice in order to write a
book so I ended up with a new doctor. She is okay but she doesn't like
me taking any pain pills although she has finally agreed to let me see
another pain management doctor. I feel as if she doesn't believe me
when I say I hurt or I can't sleep. She is doing nothing to help me in
my fight with FMS. I practically begged her to test me for celiac
disease (gluten intolerance) and she refused. Her answer was for me to
see the dietitian and start a gluten free diet, without even knowing if
I have this disease.
So now all I am taking are my anti-depressants, anti-anxiety medicine
and Glucosamine for the arthritis. I have no pain pills (well I still
have some Darvocet but it's like taking a sugar pill as it does nothing
for me). I cry because the pain feels like it is in my bones. I have
gained over 100 pounds (after having lost 75 pounds 5 years ago) in the
last 2 years. I feel this is partly due to the anti-depressants and
also from lack of exercise. I have tried chair exercises and warm water
aerobics. Both of these leave me in such severe pain I can barely walk
for a week.
I also have had three sleep studies performed. After the second one I
was told I had mild sleep apnea and was placed on a CPAP machine. After
2 months there was no improvement so the doctor told me to stop using
the machine (that was in 1997). Last year I had another study done as
my partner and I felt it was getting worse. The results came back that
it was still mild and that I didn't need the machine. However it did
show that I stayed mainly in Stage 1 of sleep. I do go to Stage 2 for a
while and there was a very small percentage of me in Stage 3. I never
made it to Stage 4, which is where you need to get to in order for your
body to heal itself. I've tried many medicines to help induce sleep but
nothing helps. It is not unusual for me to still be up at 4:00 a.m.
I am in so much pain and now I am having problems with my teeth (already
had two pulled). Last night the dentist said he thought part of my
problem was coming from my FMS. I just don't know how much more of this
I can handle. I need a doctor who can help me, who understands FMS and
believes in me. I feel like I am at the end of my rope. I just can't
take this pain anymore.
Thanks for letting me tell my story!
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