- I have read and support the
Fibromyalgia syndrome/myofascial pain syndrome
petition. I have been with fibromyalgia for about
twelve years now, and have been in constant
severe pain. I spent several years and several
thousand dollars searching for the cause of my
pain. I am now living with my parents, unable to
work, and have a daily routine that consists of
stretching exercise, ice packs, and pain
medication. Even walking, standing and sitting
are painful. Florida
- I was diagnosed with FMS in July
of 1977. The disease has changed my life. I have
had to relinquish careers as a chef, an academic
librarian, and an attorney, even though I fought
far beyond what my body could endure to hang on
to my financial independence. Each time my body
was unable to do the job I had, I retrained so I
wouldn't be a burden on anyone. But when the
overwhelming fatigue and the fibro-fog hit and
hang on sometimes you just have to give in - at
least for a while. Please add my name to the
petition for recognition and funding of research
on FMS and MFS. There also needs to be an
awareness of the devistating financial burden of
the disease. If you are aware of anyone who is
working specifically on that aspect of the
disease, or studying the special difficulties of
FMS suffers who live alone, I would be interested
in assisting them in any way I could. Thank you.
- I agree with this
petition. every sweet memory and events i have
had for many years, is tainted with the agonizing
pain of fm and mps (mps- the drs will not
document!) i do not wish to live a long life in
spite of all the little things i'm still able to
enjoy. can't imagine it. i've had fms/mps for
nearly 8 yrs after a back injury about 2 yrs
before that was never treated. Washington
- Louise, I was able to get 4 signed
right here in my household last night. I forward
it to at least a dozen of family and friends who
have computers and can sign by email. I sure hope
this will get some attention. We need it!
Virginia
- I too am suffering
with fibromyalgia. There is a great need for
people to be educated about this disease. I hear
constantly about how everyone aches and it is
about growing older. No, it is not. When you are
only 37 and have always taken good care of
yourself except for a large dose of stress at
work it is a constant struggle. The struggle
being that you are not the same person that you
used to be, despite always hearing you look so
good. There is just something about people
doubting you and that you are making this disease
up or that it is the disease of the 90's There
truly needs to be more researched on this.
- Thanks for the reply. I checked
out your website. You have done a fantastic job!
I also signed your guest book (and read some of
the previous comments). MD
- I gave your
petition to some Chiropractors yesterday who will
spread it around. This Dr. is wonderful and on
every board of everything, even the city chamber
of commerce. I have an appointment with another
doctor tomorrow and I will pass it on to him. He
is also wonderful. I will e-mail the petition to
family and friends as well. I will get back to
you with some more names and addresses of people
who have asked me to include their names. I'm a
big mouth, or shall I say, activist and I will do
all I can. I hate this disease and people don't
want to employ you if you have it and we still
need to work or be able to collect disabilty, do
research and live a better life. I have my first
grandaughter on the way in May and I don't want
her to ever get this. My pregnant daughter stands
a good chance of getting it, so I fight for them
as well. I have a web site as well if you would
like to take a look at it.
- I would like to
make more people understand about this disease.
My supervisor does not believe there is anything
wrong with me and treats me awful. We need to
make people understand about this terrible thing.
I would be willing to take this to Washington
myself if we had enough support. Thank
you for writing and telling me about this. Indiana.
- I have suffered with FMS for 20
years now and it has been a nightmare almost
leading me to suicide for the lack of knowledge
of doctors. The lack of sympathy from family
because of the unawareness of the problem
(publicity, etc.). BC
- La présente
a pour but de signer la pétition en qualité de
membre du C.A de l'Association internationale
«Ensemble contre la douleur» à l'entrée de
votre page WEB Bravo!
- Grand merci pour votre article sur
la fibromyalgie, cela m'a permis de comprendre
beaucoup de choses et entre autre pourquoi j'ai
ete mal soignee et mal comprise depuis presque 10
ans ...le syndrome a ete diagnostiquer
aujourd'hui, mais n'ayant pas eu beaucoup
d'explications je voulais en savoir un peu
plus...
- I was diagnosed just 4 years ago
but it took 2.5 years to reach a diagnosis. It is
torture. Please don't allow another valuable
being to take their own life because of stupidity
and hopelessness on the part of those who stand
in the way of true, valid reseach and care
(therapy). NM
- I did send it on to several people
around the U.S. They all either have FMS or know
how much I have suffered with this. Thank you for
being a leader in getting more funding for us. MO
- Thank you Louise for letting me
know about your web site. I was planning on
having my family sign the petition also, but they
aren't here right now. Do you have FM/CFS too? If
so, how do you find the energy to be so involved
in the FM problem? It seems like all my energy is
sucked right out of me if I do the lest little
thing. You, and the rest of the people involved
in the petition drive, have my admiration and
heartfelt thanks!!
- I would like to add my name to
your petition. I currently have been asigned to a
doctor who doesnt even believe in this diagnosis.
I am not being given any pain meds -
- Thanks Louise, I think I received
them in the mail today. I will do what I can at
this end. I have many children, so maybe I can
send them each a copy and ask them to get
signatures too. Nothing ventured, nothing gained.
Good luck to us all!
- Isn't it amazing how many of us
have this all over the world? I never evenheard
of it until 3 years ago when I was diagnosed.
Thanks again for giving me the chance to
participate.
- I have been suffering from this
syndrome since Dec. 1995. It is the most horrible
pain I have ever experienced..I am in pain every
day 24 hours a day..because of this I have lost
my vintage clothing business of 15 years, the
last 3 years has seen my business fail because I
have been too disabled to run it.. Whatever can
be done to erradicate this horrible syndrome I am
for. I am in a chat room at aol and 12 people
that I know of have this, their lives have
changed from useful people to disabled and
depressed people in the prime of their lives.
- This e-mail hereby acknowledges
that I have read the attached Petition for
Fibromyalgia to petition for more research and
heightened awareness and education on this
currently understudied and widely misunderstood
subject so that the millions of people who suffer
from it around the world can go on to lead
quality lives and so that the medical profession
will be able to treat patients in the most
effective manner and so that patients will be
treated with integrity rather than skepticism,
and with compassion rather than skepticism. The
pain is a killer and is definitely not in
anyone's head. The pain is atypical and moves
around the body in varying degrees of pain,
unexplainably. It causes great stress and
interferes with daily activities. It is a
debilitator and can be compared to the chinese
torture treatment, like one small drop of water
on the head at a time, every second of the day,
for years. One drop itself won't kill you, but
over time, the pain causes burn-out and
deterioration of the mind, spirit, and body. CA
- I have been suffering from
Fibromyalgia for four years. It's the worst thing
that's ever happened to me. NC
- I checked out your web site and
you have a lot of good links on the subject of
Fibromyalgia. It's good to see that this disease
is being brought to the attention of people who
may be able to do something to help. I was in
constant pain for years until I was able to get
Disability based on my Arthritis. People
shouldn't have to go through that. It was so bad
that I considered suicide on almost a daily basis
when I was sitting at my desk and really hurting
so I couldn't think of anything else.
- Count me IN!! My sister suffers
from this debilitating disorder and we are
constantly frustrated by the medical community
and SSI disability. It just ISN'T recognized.
More needs to be done to help the people with
this disease by insurance companies and doctors.
It SHOULD be recognized as a disability. This
disease is NOT "in the hypochondriac
minds" of those who suffer. Those who do not
think that it is should live with a FMS person
for a few months. That MIGHT give them an idea!!
My sister and her family now live with me and my
family. Because of FMS she cannot work. Because
she cannot work, she and her family do not have
an income that will allow them to support
themselves. Would you be willing to give up YOUR
freedom due to a physical problem that everyone
thinks is "only in your head"? Could
you live with family? How about not being able to
make plans for the future (even the next day)
because you don't know how you're going to feel??
Hopefully this symposium will be an eye opener
for many professionals that will be dealing with
FMS in the future and give them a greater
understanding of the issues before the people
with FMS. Sincerely NH
- I have had symptoms of FM/MPS
since 1967 or before. I was finally diagnosed in
April 1998. PA
- I would like to
sign the petition. This horrific disease has
stolen my life and everything and everyone I
cared about. My entire family thinks I'm insane
because I look fine. I guess they think I like
spending my life in the house, losing a great
career, and living on pain medication. My friends? are
all gone because they can't be tied into visiting
a shut in who used to do everything for
everybody. I'm not usefeul enough for anybody to
want to associate with me. If your friends and
family have stood by you then you are blessed. NJ
- Fibromyalgia is real. Please hear
our pain. FL
- I have suffered with FM for 10
years now..... it has impaired
me to the point that on some days I can hardly
get up.I hurt so bad .I can not sleep at night
witout medication..I miss so much work time I can
not keep a job. I went from
management to clerical work and still the effort
was to much My quality of life has
diminished so much that I feel at time s it is
not even worth living..I get extremly depressed.
Thank You for making a difference! FL
- Hi girl, my dad had this thing
when he was in his mid sixties, admittedly he
tought of jumping off a bridge. The suggested
cure was to open up the back of his head and
sever the facial muscles, trigeminal or trifacial
if I have the terms right. He went for it,
rightly or wrongly, was his choice, that or the
bridge. Awful. Result was that the whole side of
his face became paralyzed, became deaf and blind
on that side, mouth pulled down and insensitive.
Terrible, and aesthetic surgery later came,
failed, and worsened the situation. It could be
in my genetics so I signed, all my sympathy to
all sufferers. R&D is indeed required.
- I hope that those fortunate enough
to not have endured FMS symptoms are able to
accept that the symptoms do exist, and support
research to treat the disease. I suspect that a
complete cure is possible but one must believe
there is a problem in order to solve it. CA
- I am especially concerned about
the undue pain and suffering imposed upon persons
with this disorder by physicians and government
harassment regarding the underuse of appropriate
painkillers.
- Both myself and my father have
Fibromayalgia & Myofascial Pain Syndrom. I
feel that there is enough evidence to suggest
that this disease process is directly related to
the assimalation of food into our bodies. I feel
more research needs to be done to determine if it
is a malabsorption by the body or if it stems
from our modern food supply being tainted with
additives and pesticide use. Please know that
this and other autoimmune diseases are on the
rise. I suggest that this, like other
"new" diseases of the 90(s) (ie. ADD in
children) is due to our food consumption. Let's
not ignore the relationship between nutrition and
disease any longer.
- I would like to add three names to
the petition for Fibromyalgia and Myofacial Pain
Syndrome. I have been diagnosed with Fibromyalgia
and my mom and sister also suffer as well as all
three of us having the Myofacial Pain Syndrome
(undiagnosed because medical profession is not
knowledgeable). Florida
- I've suffered from fibromyalgia
for 5 years since an auto accident. I also have 3
herniated disks 4-5c 5-6c has been fused and 4-5L
and degenerate disk in 3 areas the dr. says was
caused by the auto accident He also says so is
the fibromyalgia words can't explain what my life
is like. I have been fighting disability they say
im not disabled for the first 3 years i never got
over 2 hours of sleep at one time .we all need
help PLEASE. my life isnt worth living NE
- Nous sommes favorables
entièrement avec le contenu et la démarche
entreprise pour la reconnaissance du handicap que
subisse les gens affligés de Fibromyalgie. Cette
reconnaissance devrait aussi s'appliquer pour les
gens atteints du Diabète de Type I communément
appelé, Diabète Juvénile. Cette mention vaut
d'autant plus pour les diabétiques
insulino-dépendants affectés par cette maladie
ici en cause, la Fibromyalgie. Faisons tout pour
avoir légitimement gain de cause dans ces
dossiers !
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