I have suffered
from FMS/TMJ for over four years. I had to quit
my job as I could no longer keep up with my work,
not knowing at the time what was wrong with me. I
am a classic example of one who spent several
thousand dollars on medical expenses and the end
result was FMS. I have not even tried for disibility. I
have not had the energy to put up with the long
term "fight" one must go through. I
managed a business and made good money, so it has
been hard living on one income. I think something
has to be done to help people with FMS/MPS to be
able to file for disibility and have a valid
claim. It is sad that FMS patients have to go
through so much in order to receive disibility,
if they are lucky enough to get it. The
depression one goes through not being to work
when they are willing but unable to do so, as
their body just can't keep up,is only compounded
by the lack of some not understanding nor willing
to realize this is a valid and recognized illness
and should not be limited when disibility claims
are filed. Can you imagine living with a constant
ear ache and jaw/facial pain for over a year? I
go to the dentist. He refers me to a specialist,
they in turn do a root canal, no help, then they
do another....several thousand dollars to these
Dr's....also my family Dr. has sent me to a
specialist for ear and throat. Yes, many more
tests done. One begins to think "one"
may be crazy, as all these tests and no relief!
Finally a year and a half later my family Dr.
refers me to the Rhemutologist. I was fortunate
that he finally put a name to ALL my problems! I
was "not" crazy!!!
It is what they call a
syndrome and yet there are so many people who
suffer from this. We all have the "trigger
points" and when one sets off, it's like a
chain reaction. Try living with the worst case of
flu you have ever had, except for the actual
cold, imagine living with this on and on. It is
easy to see how this us up for depression. I
think FMS people have a high tolerance for pain,
you have to, there is no way out of it, except to
accept it and learn to live with it. However,
living with the pain from day to day wears you
down, it is no wonder why depression sets in. You read of so
many trying for SSI and the rejection is almost
100% for these claims. I just don't have the
energy to try. Do I deserve it, yes! There are
many more out there most likely worse off than I
am and they have been turned down. Why? I still
haven't figured out why FMS isn't acknowledged as
"valid." It is time something is done
about this! There are too many people that have
these symptoms for it not to be
"valid." I have lived my life the best I could. I
have givien to the community. I have worked and
paid taxes. I have never asked for anything. I
still haven't put in for disibility. I know I
would be turned down. It's a shame that one lives
their life working hard and is just a
"common" everyday person, no one
special, just an average person and yet feels
they would be rejected if they filed a disibility
claim. Lets work at funding more research on
this "syndrome." There has to be more
to it if so many people suffer, I just can't
image that it is "all in our head" when
there is so many suffering from the same
symptoms. There is so much I could go on and on,
but then it has all been heard before by many
others......you see, we all suffer and each to a
different degree. There is so much more to this
and it is time that it is recognized and more
done to help.
- I am 43 years old. I have lived
with pain (growing in intensity) for over 20
years now. I was diagnosed with fibromyalgia
approx. 3 years ago. Since that time, I have been
on every anti-inflammatory med there is. Aside
from tearing up my stomach,,,they have done
nothing for pain. I finally found a Dr. that
treated my fibromyalgia for what it was. A VERY
PAINFUL DISEASE!!!! I have been given proper pain
med to help live with the pain. I now go to a
pain management clinic. The meds.that help me are
narcotics. This of course,,,raises red flags to
the government. Why? It is available and is the
only thing that alleviates some of the pain. (I
will never be pain free) I also have a twin
sister that has this disease. It is time the
government took this disease seriously! If you
spent half as much time researching and
acknowledging this disease, as you do researching
who and what drs. are associated with narcotic
pain meds, we just may have some answers. As of
today's date,,,,,we know this to be untrue. We
have no answers. We have only a government
responsible for thousands of victims of
fibromyalgia suffering needlessly. Some of these
victims have committed suicide. What is it going
to take people???? Help we that suffer from this
disabling disease. Find us some answers to our
questions. STOP making us suffer needlessly.
- As I sign, I am barely able to sit
up in a chair. I was just diagnosed two weeks
ago, though I have suffered for years. The pain
continues to increase, only temporarirly relieved
by streching and exercise (when I am able to do
so). I use pyhsical therapy and anti depressants.
It began years ago for me as fatigue, and
attention deficit problems. Then increased to
specific pain areas. The intensity varies, but
never ends. I have 5 children. A few of them also
have pain. One is Autistic. All have attention
deficit.
- I too suffer from fibro and was
diagnosed in oct of 97. it has totally changed my
life. i pray that people, esp., those with the
power to make laws and change the outlook on this
condition will begin to recognize the validity of
our pain and suffering
- Nous sommes
parents d'une fille de 7 ans souffrant tous les
jours de troubles à rapprocher de la
fibromyalgie ( et trouble neuro-végétatif:
spasmes vésicaux douloureux). Un médecin a
examiné les points gâchettes et à déclaré
que si Anne-Sophie était adulte, il pourrait
confirmer le diagnostic de fibro. Nous souhaitons
communiquer avec des parents qui ont des enfants
touchés par ce syndrome. Merci beaucoup. Nous voulons entrer en contact avec des
parents qui ont ou pensent avoir des enfants
fibromyalgiques. Est-ce possible. merci de réponse même si c'est
négatif. Avons besoin d'établir des contacts. MEILLEURES
SALUTATIONS marc.waltriny@wanadoo.fr
- Hello. Thank you for sharing your
story with me. I have found I am not alone. I can
not beleive their are so many people effected
with this disease. I got up some courage to write
how I feel for the first time. please read my
letter. Do I sound pathetic?? I have always felt
embarresed to feel so sick. Did you ever feel
that way?/I am on 100mg of Amitriptyline at
bedtime( I find I have several bedtimes because I
can only sleep a few hours at a time) I also take
Naproxen(375mg) 3 times a day and alot of advil..
I have been on many medications for the last 12
years. So many I can not remember them. 2 years
ago I had a feeding tube put in because I could
no longer keep any thing down. I was being
followed be the private investagators for the
state of mass. I feel like I have to always fight
to make people understand that even when I am
smiling I hurt.
- Well thank you again for talking
with me. I am very scared. I am suppose to sign
my name on the document to settle my case soon.
If I sign I will get $70,000. if I dont I have to
start the trial all over and prove that I am
really disabled. How can you prove this
"invisable disease" is real and not in
your head to people who only concerned in getting
rid of you as fast as they can.
- I am writing to you to ask for
your support on the issue of Fibromyalgia and
CFS. I do not want your pity. I do not blame the
world for what I suffer. Please do not feel sorry
for me. Just let me tell you my story. My
families story. My life. On February 1987, while
working at Wrenthem State School for the mentally
challenged I was struck in the face with a chair
by a Mentally challenged person. I feel no
illwill towards this individual. I enjoyed my
job. I loved the people there. They were like
family. I met my husband there. For last 12 years
I have seen doctor after doctor. I was diagnosed
with TMJ. I have gone through these years not
understanding what was going on with my body. I
have been told "it is all in your head"
and sent for pyhcactric help. I have had physical
therapy, a Tens unit, had mouth guards made,
injections into my joints and have been on MANY
medications. Last year I had to have a feeding
tube put in due to the fact that I could no
longer keep any thing down. I was upset that I
was being followed by private investigators hired
by the state to check to see if I was disabled or
not. I understand that is a common procedure. (I
since have had the tube removed and am on a
liquid and eat soft foods). You can't see my
pain. I know it is here and it is not in my head.
It is in my body. It takes hold of your soul. The
pain does not know your limits. The only way to
"see" my pain is to have Fibromyalgia.
Then and only then can you fully understand
Imagine if you can what it is like to feel as
though you are never going to be that person you
were 12 years ago. I look in the mirror and see
the reflection of some one else. I am to turn 40
years old this July and I feel much older. Each
year that passes I see the changes. I feel the
changes. I am not the person I was last year or
the year before that or the year before that.
That most everyday you feel like you have the
flu. Your hands ache and burn when you are trying
to tie your children's shoes or button their
dress or shirt. That when you wake up (not that
you really sleep much) you know that once you put
your feet down to stand up you will feel this
razor sharp pain in your feet and up your legs.
Your hips burn and ache. You have to hold on to
the wall and banister to come down the stairs.
Then a whole new day begins. A day of stiffness,
muscle twitches, burning feeling in your
shoulders, headaches, dizzy spells and memory
loss. It feels like having a paper cut all over.
Your skin stings. Your chest aches. Your husband
loses days at work because you can no longer take
care of yourself. You need help with the
beautiful children you brought into your life.
The children we adopted, (Two are drug exposed
babies and one is a child born to a mildly
retarded 16 year old mother) eight years ago are
the light of my life. Without the support from
family and friends and our 21-year-old daughter
and 19 year old son I don't know how we would
have made it through these past few years. This
illness didn't just happen. The trauma I suffered
that day in February caused the domino effect. It
has slowly taken over my life. I did not ask for
this disease. I had dreams. On April 16th, 1999
at the Fall River office of Workmen compensation
I stopped fighting. My lawyer, William Murray
represented me. We went before Judge Daniel
O'Shea. The State was represented be Terreance
Buckley. The Judge began saying how the state
does not compensate for "pain and
suffering" but what if it is the pain that
is keeping you from being that person that you
were before. I can not work again. I have my days
where I am feeling "normal" if you call
not feeling up to par normal. That day in
February changed my life. It didn't happen all at
once. It took the last 12 years to fall in place.
This isn't about winning there are no winners. Or
about how much money I was offered to walk away
from the States responsibility. To give up the
fight because you are told that you have to start
the case all over again because this was the 4th
Judge to hear the case. You would have to prove
you were Totally disabled. If not, you will have
to pay the money back. The judge told us a tale
of a man that had that happen. So my husband and
myself decided to give up. He didn't want me to
go through the IMEs again and to have to prove I
was disabled because of the accident. We know I
am. This is not about how much the state offered
so that I would go away. It isn't about money.
Money can not bring back the person I was before
I was hit in the head with the chair 12 years
ago. It is about the disease. FIBROMYALGIA. The
"invisible illness". You don't get
better. You can have good days or good hours or
minutes or seconds but it does not go away. You
can be happy and depressed at the same time. You
smile and try to hide it. If you get a chance
look to look at the "lump sum settlement
information pamphlet. Read the section on
"What should I consider when determining if
I should lump sum my case? You will find
questions to ask your self. One is "are you
ready to return to work?" NO Do you still
have unresolved medical problems resulting from
your injury? YES And the one you must consider
with all we have gone through is "Will you
be able to prove your injury is work-related? Can
I? We feel we can but what if the impartial
Doctor I go to dose not feel Fibromyalgia is a
real illness?? A real disease. Should fight the
state of Massachusetts or give up. Hopefully
other people that go through what I have will
have the support they need The person in my life
who has been my soul mate is my husband. He gives
me the strength when I do not think I have any.
He walks beside me and helps me to stand. He
supports me and is my best friend. I love him
with all my heart. Without him I would have given
up on life years ago.I Thank you for taking the
time to read this. I hope that I have given you a
better understanding of Fibromayalgia and what it
can do to a person and their family. I have my
family and friends help me make it through each
day. I hope you will support me on May 18th.
Remember I am not alone. Fibromalgia and CFS are
painful diseases and an unresolved issue. There
is no cure. I am new at learning about FMS. I
learn more and more and I find more hope by
listening to others who have this disease. I
understand that there is an estimated 3 million
people effected in the USASincerely yours.
- My wife has been strictened with
this terrible disorder they call fibromyalgia.
I've watched in a period of less than 2 years rob
her of her energy and enthusiasim of life. It's
like she has the flu all the time, and she's so
fatigued that she can't do the simplest of things
that was never even given her a single thought
before. It has taken over her entire body. She
might have a couple days of the week where she
can at least function mimamally. She use to take
such care of her looks, such as putting on her
make-up, and getting dressed. But now that seems
to be such an effort for her. I love her with all
my heart but it breaks my heart to see her in
such pain. OK we have a diagnosis but what good
is it when there seems to be such a lack of
doctors that don't understand it,...or treat you
like you've lost your marbles and don't want to
hear about this disorder that has no evidence to
substanciate a treatment with someone who
actually cares and doesn't believe you've gone
mad. We need help!!! My wife is not the type of
person who would be like this if nothing were
actually wrong. I'm demanding that something be
done about this disorder. We need research and
understanding. We need to know why. We need
respect and proper treatment. We're going into
the 21st century with so much already, so how
about if we add a dedication to those who suffer
from this little known disease? Sincerely.
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