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Fibromyalgia is a disease which is mostly unheard of, except by the people who suffer from it. The diagnosis of
Fibromyalgia is not easy, since it does not show up in blood tests, or any other tests normally carried out on patients presenting
with symptoms.
The symptoms vary greatly from one sufferer to another, and I was diagnosed with it a year ago, after four years of intensive
diagnostic procedures, all of which showed nothing.
It was only when I mentioned my symptoms, which had failed to bring about a diagnosis, to another fibro sufferer
(Fibromite) that I was finally referred to a Rheumatologist and the diagnosis was made.
I have researched the disease, in the hope of finding some ease for the chronic pain, tiredness and depression which
this disease brings, and I was fortunate to find an extremely informative and supportive site FIBROHUGS, which has made my
life as a fibromite so much easier to live.
Fibrohugs Fibromyalgia site
Below are two letters from the Fibrohugs site which explain a little about the disease which many
people suffer from, a disease which has no outward signs, which show the pain and suffering.
Many Fibromites feel like hypochondriacs, who are never away from the doctors surgery, yet no diagnosis
is made, due to the difficulty in detecting the disease.
Its symptoms mock symptoms of other diseases, for which most of us are tested, and it is only when
a rheumatology specialist sees the patient that the Fibromyalgia syndrome is diagnosed.
The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and
get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have
never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that
may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not
only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that
keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works
silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you
would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo
for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because
people can’t see it and do not understand....
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough
I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside
I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused
of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made
at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left
in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the
pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many
times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please
try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional
meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the
dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….
Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs
or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble
and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing
the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in
the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock
up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem
today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they
don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to
spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love
my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you
will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be
a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your
supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan
and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, goals… and this
demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes
you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I
can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in
such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….
Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please
understand that I am just like you… Please understand….
Copyright of www.fibrohugs.com Written by Ronald J. Waller
A Letter To "Fibromites"
I am a spouse of someone with fibro.........
by the (late) Donna Euteneier from Fibrohugs.com
A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone
who has an illness..... and I agree with this statement, but only when we are given information, understanding and support
ourselves.
Fibro does not just affect the person who has it.... fibro affects the whole family..... it steals away all of our lives.
I have watched, broken hearted, as Ken has packed away his dreams and hopes for the future.... but along with those dreams
and hopes were mine also. Just as you have come to realize that your life has changed forever so must we....... and we have
to be allowed to morn that loss also.
We become angry and depressed just as you do...... we struggle with KNOWING that you are sick, to being angry that you
are sick....... not at you but at the illness. Then we become angry at ourselves for feeling selfish and thinking of ourselves....
thinking of the added stress on our lives... the added responsibility.... the added guilt.
We have gone from a 50% partnership in this marriage, this family, this life, to sometimes feeling like I'm carrying the
whole weight of it alone. I have to remember that my spouse is sick..... that the illness has taken that away and sometimes
I'm lonely, scared, and extremely sad at the loss of what was....... but I also know in my heart that I love my husband more
than life itself and TOGETHER we will find our way.
You have to talk to us.... you have to let us know how you're feeling, what you're feeling, and how it's affecting your
day........ your life. If you don't talk to us we will never understand how you are feeling and we will assume that everything
is as it should be.... thus expect from you what we have always expected.
I need to be able to say it's "okay" when your angry and hurting........ but it has to be "okay" when I am also. We both
have to stop and look at what's going on in our lives at the time....... just as you get angry and lash out sometimes......
so do we.
So will we really ever understand what you're going through? ......No! Will you ever really understand what we are going
through? ......No! But if each of us gives each other the time, love, and patience to find our own way in dealing with and
accepting what fibro has taken from us, I think our relationships may be a lot better.
I hope with your challenge that you wanted to hear the truth...... and that is what I offer in this.... how we feel as
Spouses.
Donna Euteneier
Copyright 2003 http://www.fibrohugs.com
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