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This is the
personal story of one of our members. It
is by no means a diagnosis aid and contains opinions about the writer’s
conditions, not necessarily facts about the disorder.
Drugs and treatments listed are not necessarily the best course of action
for all patients. Please see a
medical professional for proper treatment.
These stories are for an overall understanding of how the condition
effects the writer’s life and is designed as a means of support and
understanding. This is written in the hope it will get other people to tell
their own story of living with Fibromyalgia and related disorders. Tell us what
worked for you and what didn’t. Just remember that every person is different
and what works for one person may not work for you.
Hello
Friends,
I am 46. My CFS problem started after I had my eye removed in 1995 due to
a large retinal (choroid) melanoma. I
had gone blind in my right eye so gradually I didn’t notice it. It’s a rare
cancer to get, and even more rare to survive it. The doctors told me at the time
it was caused by a virus.
For the first year or so after the surgery, I felt fine. Then I began to
get more fatigued and it came on so gradually, I didn’t realize anything was
wrong. I would get so tired getting ready to go on a vacation that by the time
we got there, all I wanted to do was sleep.
My family showed chickens in competitions and I used to get them ready to
go to the shows. They have to be bathed and blow-dried like dogs.
Slowly I got so that I would only get them ready to go and skip the show.
Eventually I didn’t even feel like getting them ready. It took years
for me to realize I was sick.
My family doctor referred me to a neurologist because of my mental fog,
fatigue and memory problems. I would lose my balance very easily and never knew
what day it was. She has been a blessing for me. I don’t know what I would
have done without her and her patience with a very frustrating disease.
I was very displeased with the infectious disease specialist I saw. He
never tested for any infection other than AIDS. He claimed "viruses don’t
jump species" when I brought up that I spent a lot of time around animals.
He was a waste of time.
I had been having problems with my molars abscessing one by one. I also
had a mouth full of metal fillings. So I had 27 teeth pulled. One day I dropped
the pulled teeth in hydrogen peroxide to clean them and noticed foaming around
all the fillings, every last one was leaking. I cracked them open and there was
decay under the fillings.
I wonder if this leaking under the filling decay is common and could be
causing chronic infections. It probably was causing the abscesses. It might
explain why people feel better after having fillings replaced. It may not be
mercury poisoning like some people think. After the teeth were gone, I quit
having all the bad headaches and earaches I used to have.
Right now, I take Adderal in the mornings, and it gives me energy to get
some things done. It also helps relieve the brain fog. I tried Provigil, but it
didn’t help much. Provigil is also much more expensive than Adderal. A lot of
people like it, though. I am still not like a normal person, but I get some work
accomplished. I have no pain in the mornings and no morning stiffness.
About mid-morning I take some Aleve that will buy me some extra time
before I hit the wall of pain. I can go till about 2 or 3 in the afternoon, but
then, wham! I moved some shrubs on
a couple of days and I was just frozen with severe back pain. I keep telling
myself, I will just do this one more little thing and I will quit, but by doing
it, I push myself too far. Exercise
and being outside is good for me, so I do as much as I can.
I found though trial and error that the only meds that work for me are ones that sedate the brain and/or muscles in some way. I have used Neurotin, Klonopin, Flexall, and Benadryl. A electric blanket to lie on helps a lot, too.
At night, I take Zyprexa and Topamax which are more specific bio-transmitter
drugs to reduce pain and help me sleep. They are also more expensive so once a
day keeps cost down. I have felt a little better since I have been on birth
control pills the last 4 months. Somewhere I heard that CFS supposedly goes away
when you’re pregnant, so that may be the reason. The Adderal does make it
harder to sleep, but without it, I just lie on my daybed and never wake up and
never go to sleep. Every day I was getting more out of shape, and one day seemed
to last 3 days. I had a good friend
who was bedridden with arthritis, and this past Thanksgiving, she formed a blood
clot that went to her lungs and killed her. So no soaps all day for me, I need
to get some activity.
I have a husband and son that need me. My mother has COPD and I have to
clean her house as well as my own, but I realize there are still many things I
can’t do.
--Lisa