I receive many letters from
men and women who are trying to research their health issues,
most of them wondering if they have Fibromyalgia or Chronic
Fatigue Syndrome. They are scared, watching their hectic lives
unravel as they realize something is wrong, that they can't
keep up, are getting depressed, and see no end in sight. Here
is a sample letter, and my response. I continue to invite you
to write to me, but start here as you may find what you need
to know. But I know how we all need that human contact, so please
feel free to write.
"...I have not been
feeling well and tonight I saw a television commercial for a
Fibromyalgia program....I need to know what testing is done
to determine the diagnosis....I am constantly tired, sometimes
tiring out just taking a shower. I need to "rest"
frequently. I push myself very hard both at work & home.
I often work 10 hour days & taxi the kids constantly....I
have unexplained pain-- mostly hip and upper leg. I am experiencing
burning across my abdomen and groin area. Last night I rocked
myself to sleep while crying because I was so uncomfortable.
Stress & mild depression seem to be a constant. Sometimes
I just want to cry....I'm only 39 and I'm scared. I don't know
how to make my physician take my "vague" complaints
seriously...Can you offer any insite?..."
...
Take heart, you aren't alone. There are a lot of men and women
out there going through the same thing. Did you know the woman
who wrote "Seabiscuit" has Fibromyalgia and Chronic
fatigue too? I heard that she worked in bed, laying down, because
she found her brain fog was less of an issue and she could concentrate
better laying down.
First of all, if you haven't already, see a doctor to rule
out any other conditions. Sometimes Fibromyalgia (FM) or Chronic
Fatigue Syndrome (CFS) are mistaken for other conditions, like
mono or shingles for instance. I suffered needlessly for a week
with shingles before I realized I had a small rash. So you need
to find a doctor you trust and start seeing that doctor regularly
to document what is happening to you.
You need to help your doctors by keeping track of where
you hurt, how often, and what your life was like on that day.
Here are some web pages I have online, and they include a sheet
you can download and use to keep track of where and how you
hurt, and how your fatigue, intestinal trouble or other symptoms
come and go. I kept this sheet for three months and then went
to my doctor armed with it and information I had downloaded
on FM/CFS. From this, and subsequent tests, they determined
it was Fibromyalgia, depression, Chronic Fatigue Syndrome and
Ulcerative Colitus.
There is a test they can do where they
push on 18 points of the body to see if it hurts. If you have
11 out of the 18 you have FM. They do other tests for CFS, like
seeing if your blood pressure drops when you go from a laying
to a standing position. But there are no real conclusive tests.
Sometimes it is a matter of eliminating the other things that
it could be. If it is none of the other things, then its FM/CFS.
I personally thought I just had bad arthritis and a bad case
of "nerves" so be open to what your doctors are testing
your for and what they conclude. But if you don't agree with
them, move on!
I went through
quite a few doctors in the Washington, D.C. area before I found
Dr. Samuel Shor in Reston, Virginia. He spent hours with me,
documenting my history, and has been working diligently with
me, trying to find which avenues of treatment work best. He
has 10 years of experience behind him. If you don't have a doctor
like him available, find one in a nearby town, or for goodness
sake, hop on a plane and get to one!! If you had cancer and
it was eating away at your life, would you settle for a doctor
who didn't really believe cancer exists? Don't let an uninformed
doctor take away your ability to love and live life. Find one
who keeps up with the latest journals, and can work with you
to get back your life! Call around to the hospitals, the local
doctor associations, local support groups for people with FM/CFS
or other auto-immune deficiencies.
I hope you are as lucky as I am in having friends and a
spouse who understand your condition. If not, you must educate
them. But first you must educate yourself. Join online discussion
groups. Talk to your local hospital about any local support
groups. Don't go through this alone. I'd be happy to talk to
you about how you feel if you can't find someone else who understands.
Take advantage of therapy - a good therapist can be a Godsend!
Type A personalities are the most likely to come down with
FM/CFS. If you do have it, those 18 hour days have to stop.
You are going to have to accept you can't do what you used to
do, any more than a cancer victim can. It is nothing to be ashamed
of, and if the people around you don't understand, MAKE them
understand by helping them to know what being you is like.
This is imperative. You must get help with
your sleep. People with Fibromyalgia do not get retorative sleep
even when they ARE asleep. When you are awake, your brain should
be in Alpha Waves. When you are asleep, it should be Delta Waves.
People with FM spike into the Alpha when they are asleep (IF
they can sleep), so their sleep is not fully restorative....
Your doctor may
prescribe you anti-depressives too, even if you don't feel depressed.
Apparently they help the brain make certain connections. One
of my doctors even has me on Trilepl, a drug used for seizures
because it seems to help people with FM. Each person is different,
one treatment works for one person, another is doing something
quite different. But don't be discouraged, there are a lot of
doctors working the problem now.
Your life is going to change. There is nothing
you can do about that, except roll with it and try to adjust.
I could no longer make jewelry. So, I learned to paint instead.
The key is to be open to possibilities, to keep the people around
you informed, and to have faith that doctors like Dr. Shor are
working hard to find why this happens, how to cure it, or at
the very least, to find a way to help people like you and me
take back as much of our lives as possible. The days of doctors
arguing about whether this condition actually exists are over.
They KNOW it exists, and it is spreading. I personally think
its always been there, unacknowledged for what it is, misdiagnosed
as a million other things.
Like the cover of book in the "Hitchhiker's
Guide to the Galaxy" says, "Don't Panic!" You
aren't lazy or crazy, but as we all know, the "brain fog"
that comes along with FM/CFS DOES make us hazy! But you are
not alone.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I invite anyone who needs more information on Fibromyalgia
and Chronic Fatigue Syndrome or my battle to pursue a career
in spite of them to contact me at bcsales@comcast.net.
Please put "Fibromyalgia Comment" in your subject
line so I don't mistake your Email for spam. If you do not want
excerpts from your letter posted anonymously here, please say
so in your Email.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My
Personal Fibromyalgia Home Page
Click
Here to Send a Blank Email to Join a Fibromyalgia Yahoo Support
Group
You can check it out first by going to Yahoo Group: Fibromyalgia_Support_Group.
Once you have joined, go to the Yahoo
Health Group Webpage, sign in, and Edit Your Membership
to the daily digest, or you will get a LOT of emails each day.
If you don't know how to do this, contact the group owner by
sending an Email to: Fibromyalgia_Support_Group-owner@yahoogroups.com
Example
of How I Kept Track of My Pain and Fatigue
Printable
Pain Diary You Can Use
