April’s FMS & CFS Support Site
This site is intended to help those who suffer from Fibromyalgia and Chronic Fatigue Syndrome every day as well
as the ones who love them. It is not easy living with an illness that so little is known
about, nor is it easy to deal with the pain.
Just know that there are those who understand and want to help.
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FIBROMYALGIA AWARENESS DAY
MAY 12, 2005
BE AWARE! / BE ACTIVE!
What is Fibromyalgia?
Fibromyalgia “syndrome”
(FMS) is often called the “invisible disease,” because outwardly, we may look
perfectly healthy. Inside, however, we may have intense pain throughout
our bodies. We may be constantly fatigued and weak, or we may be dizzy,
confused, lacking sleep, suffering digestive disorders, and generally living a
poor quality of life. There is no
steadfast cause or cure for FMS, but there are ways to treat the symptoms and
improve the quality of life.
FMS is not progressive , but symptoms may become worse if the
perpetuating factors are not identified and dealt with promptly and
adequately. You have widespread pain and
wake up every morning feeling like you’ve been run over by a truck. You may have headaches and loss of balance,
dizziness as you look both ways when going into traffic. You can’t always find your car in a parking
lot, and even on your best days, you feel like you have the flu.
You may have
short-term memory loss, put on weight and can’t get it off, muscle twitches, an
irritable bowel, grinding of the teeth during the night, and experience sudden
and unexplained dizziness.
One of the
first things that makes us realize that there is
something wrong is the inability to perform as intellectually as we once
did. We seemingly accept the increasing
pain, the muscle spasms and the insomnia, but when we keep forgetting our own
phone number, red flags go up.
We laugh about it,
learn to “cover” the errors with laughter, and silently start questioning our own
sanity. We worry because we know the
problem is far more extensive than other people realize. If we tell our doctor about our problems, we
are often easily placated by the doctor’s words, such as, it’s “just” FMS, or
you’re depressed."
Symptoms can be severe, yet blood tests, X-rays and other common
diagnostic tests do not show FMS. This
means that we presently lack knowledge of how to test for FMS. If your medical care provider has been
trained to test for this syndrome, more than likely a series of blood work-ups
will be done to rule out other maladies that can and do mimic FMS.
NEW ADDITION TO SITE:
April’s Diary
I
hope that by adding this section to my site, whether you are fighting the
illness personally or if you are caring for a fighter, it will help you know
that YOU ARE NOT ALONE! This is not
intended to be a “poor me” or a cry fest, but rather a journal of
symptoms. Sometimes, if you can sit down
and really view what is going on around you, you can find things to change for
the better.
3/9/05
Today has been a pretty rough day
physically. Yesterday I had to take off
work (again). My husband woke me up
because I was crying and moaning in pain in my sleep. I tried to get out of bed to work out my
muscles – even just walk to the restroom, but I couldn’t. He had to lift me out of bed and help me down
the hall. I felt so embarrassed. I knew I shouldn’t have, I couldn’t help it,
but the feeling was still there. I
questioned whether I was still just dreaming and if I was really hurting as
badly as I felt I was. Needless to say,
I couldn’t stay up. Jack helped me back
to bed and I stayed there until late afternoon without even moving.
Unfortunately, today the pain level
was toned down enough that I could function, but the fatigue level is running
rampant. I am sitting here at work and
am longing for the clock to hurry up and turn to 4 so I can leave and head
straight to my bed. I am so cold, my
fingers are freezing, my nose is freezing and I am aching from head to
toe. If I were anyone else, I would say,
it is just the flu, I will be over it in a couple
days. But I know that this is no flu bug
and I won’t be better any time soon. I
want to cry but what good would that do?
I look over at my calendar and see that I only have around 12 hours left
on my leave time. 12 Hours!!! I can’t
use that now, although I would love to.
What if tomorrow is worse? Well
forget that, I can’t even take it then, I forgot I have another doctor
appointment on Monday. That will take
that time. Then what? I prepare time sheets for my area staff
members and envy them terribly. Most
have so much time that they can’t even take it all within the year. They end up loosing it because they can’t
carry it all over. I look at my piddly 12 hours and know that I will never be able to accrue
that much time or even come close. Then
the fear hits, what will personnel do when I get to the point I am off
payroll? Will I be dismissed?
It is funny, the doctors tell us to
avoid stress in our lives. But how can we when things like this bombard our every thought. I guess the best I can do is pray and know
that God has a plan for my life. He is
in control – not me.