- Hi Louise, No doc yet but I did
receive a phone call from Senator Dukes office
her personal assistant Prudence has Fibromyalgia.
She said there is some major legistation
reguarding pain management that they are trying
to get passed. So please tell everyone can we do
have a friend. It would be nice for some others
to email them. To show support. I was told to let
them know if I can't get a good doc this week.
She gave me her doctors name and number to call.
I have written to every Senator as of last night.
Couldn't sleep as usual. Glad I didn't now. Take
care .
- I have suffered from Fibromyalgia
for over 20 years. Have just recently got some
pain relief through a neurologist in the form of
Oxycotin 2 x a day. Gentle hugs
- I have one of those very intense,
long-term cases and have been suffering GREATLY
for over 15 years (I am 39 now)....the usual
LONG, horrendous, story...and I was only finally
diagnosed a couple years ago. Suicidal thoughts
were part of the process but so far I have hung
on and survived. I am presently disabled after a
LONG STRUGGLE to try and maintain being employed;
being part of society; and leading some type of
normal life. I have almost none now. I have lost
most of my friends along the way and was forced
into UNWANTED isolation. I have been unable to
even CONSIDER having children though I'd like to
very much. The only positive point so far is I
was one of the LUCKY ones who found a husband who
is very sympathetic, supportive, and angelically
patient!! Dr. Starlanyl's book's have been the
most helpful, supportive, intelligent information
out there- and almost a lifesaver (I am still
working on getting through them)! Also, for me so
far, deep therapy body work (massage and tender
and trigger point therapies) has been one of the
MOST VITAL components of treatment....to get any
relief and improvement in my condition. The kinds
of therapies that are hardest to get covered by
insurance seems to be the only helpful things out
there!! And unfortunately, they NEED to be given
long term and of course this is one of the
biggest struggles with insurance as well (Again,
I am lucky....at least I have insurance!).
- it is a SIN...(NO
exaggeration)...that doctors- of all disciplines
- are not being taught the trigger point manuals
and the symptomology! It is an OUTRAGE that we
are told "it's all in our heads"- when
there IS information available that IS valid and
explains so many "weird" pain and
physiological symptoms. I didn't learn until
recently that I am NOT CRAZY! it is HORRENDOUS
that most physicians (and many therapists as
well) do not LISTEN to their patient's. It is
unbelievable how many doctors I had gone to that
bearly even touched me before they pronounced
some negative judgement. Some decided even as I
WALKED IN THE DOOR (also NO exaggeration)! How do
you feel abnormal knots and bands in the muscles;
skin and tissue (even breasts) as hard as rock;
see screwed up balance and gait, if you don't
even TOUCH the patient or understand basic
mechanics? My therapists are amazed because
they've now SEEN it. I AM the trigger point
manual!!! I am learning from them and they are
learning from me (thank God). I am now seeing the
charts in front of me and find the pains and
symptoms I experience are VALIDATED...and so far
they are in total concert with my condition! I am
now finally learning what a MESS I (and others)
have made FIGHTING this for so long in the wrong
way...and I am now learning HOW to get
improvement in my condition with the HELP of the
trigger point information. I hope to one day have
EVEN A DAY off from pain!! I hope one day I can
help someone else with what I am learning. I hope
I'll soon have enough energy to help more
directly in the political/advocacy/awareness
raising arena. THANKS SO MUCH for listening and
BLESS you all out there who are carrying on the
struggle of getting the support we need and
getting the information out here!! VERY SINCERELY
New Jersey
- Thank you so much for your
compassion,,,and information,,,you are
invaluable,,to all those who have this
disease,,,I also have a friend who has this but
does not have email,,,i will gladly get as many
signatures as i can,,, If i am not mistaken ,,,one of my
sisters also suffered greatly with this,,,and
committed suicide,,,' She died on Sept 19, 1998,,,I will do
what ever ican to help. I suffer from a work related
injury,,,due to my former employer,,who fired me
2 DAYS BEFORE CHRISTMAS 1998, due to the fact
that i am ermanently disabled,,i continue to have
severe to massive pain,, I was hurt at work on August 19, 1994,
My former employer sat on benefits and treatments
,,At first it was finally determined that I
suffered a tramatic tear in the right intercostal
area,,,as well as a tear in the ligament of my
spine that attatched my ribs to my spine,,, If this story
which i can write more about can help others,,i
will gladly send the entire story to you,,, update:
yesterday, February 23, 1999 , I was diagnosed
along with other injuries ,,,with Fibromyalgia, I agree with your
story,,,,,and your cause,,Maybe my sister would
not have killed herself,,if she had the help
also, but she too didnt get the help she
desparately needed. Keep fighting!!!!!!!! you
have my support 100 % !!! Let me know what else i
can do, and may God bless you forever for your
faithfulness in this cause,,,I was feeling so
upset until i found your site and another like
it, THANK YOU!!!
- I, am signing the petition to the
government to recognize fibromyalgia as a real
chronic illness with lifelong pain greater than
rheumatoid arthritis with all the disabilities
that resent themselves with the syndrome.
Sincerely, With no particular place to go!
- I have this
illness and want more doctors to learn about it
and have some research to find out the cause of
this illness. Please!!!!!!!
North Carolina
- This or these related illnesses
have become so political and have gotten away
from what in just plainly "humane" for
the people suffering from them. Each person needs
individual evaluation and treatment, which is not
being done due to restrictions by insurance
companies. Much more testing should be done on
these patients to stabalize their own paticular
version of the illness. Doctors can not do this
without the complete support of the gov't. and
gov't. agencies. Insurance companies DO NOT CARE
ABOUT HOW WE HAVE TO LIVE OUR LIVES---they only
care about saving money. The only reason we do
not get this individual evaluation which would be
more through is because of the cost. AS of
now---the treatment is a "hit or miss"
type of drug experimentation. WE are not
specimins for drug companies. Many of the drug we
are put on are not for long term use, even though
that is exactly what is being done---without the
patients knowledge. It is very easy for those of use
suffering from these illnesses to get up to date
information on research because of the many
organizations that have devoted their time to
sending it to us via eamil. It is scientific
research, not just some idea thought up at a
coffee table by people suffering from these
illnesses. But unless these finding are made more
readily available to doctors in general---they do
not go looking for them. The "wish" to
believe that this is all rooted in emotional
problems,,which make their jobs and
responsibility toward those of us as patients not
as meaningfull to them. Another big factor-----it is said
"we won't die of this". I beg to
differ. WE won't die in the way as a patient with
a clear proven terminal illness, but we will not
live a long or full life. It will be a slow
"invisible" death ,,, never
acknowledged as "cause of death lack of
treatment due to FMs, CFS, Gulf War Syndrome,
ect.". The problem, as I see it, is all about
money. Each person with these illnesses needs
individual testing to see what is going wrong in
"their" body. This is not cost
effective. Therfore, we are not important as a
group of bright, very insightfull people who just
happen to have an illness that is not fatal. THIS
IS WRONG AND INHUMANE. Those who have no idea,
first hand, of what it is like to live with
someone with these illnesses or even be a
co-worker ((that is if you are allowed to keep
your job---which isn't often)) have NO IDEA what
it truly does to the ill patient and their
family, friends, and co-workers. In my case, FMS
was actually brought on through the medical
treatment I have received in a HMO. This I can
prove. But there is nothing I can do about it. It would be my 15
minutes of fame to be able to sit in front of
politicians who really want information and tell
them how this happened. I moved to PA in the late
80's a healthy person and then entered a HMO.
After problems with allergies, bladder
infections, and TMJ problems--------I ended up
with FMS. EXcept for the multiple surgeries on
the TMJ ,,,the other medical problems were always
taken care of with a prescription because it was
cheaper then sending me to a specialist to get to
the root cause of my allergies. The many TMJ
surgeries pushed me over the edge---the follow-up
care was horrible. I lost a LOT of weight while
the primary care physicain watch and did and said
nothing. I was sent back to work one week after
having both sides of my face cut open to correct
the TMJ--which never should have been done. I
needed time to heal and time to be able to
"eat" again. After this major surgery
it is a good couple of months before you can eat
solid food again. Being sent back to work after
one week made it impossible for me to get the
intake of food that I needed and the rest to
recover---I believed in my doctors but I truly
made a mistake. Now I can not believe in any
doctors associated with HMO's because they have
their own agenda,,,,they expect to make X amount
of money since they spent eight years, at least,
of their lives studying to have "DR"
put in front of their name and they are not going
to let a HMO system interfer with their goal.
Occasionally, you will find a DR who will take
the time and try to do the right things, but that
doctor will get penalized by the HMO. Politicians--------tell
me how you can let this go on. HMO's came about
due to greed in the medical world. Now they are
the ones filled with greed. It's already a proven
fact that if you have a heart condition and you
have a HMO you are more likely to die. This is
the country of the finest medical facilities,
doctors, ect---but only a very small portion of
our society is allowed the priviledge of getting
truly fair and good treatment. Employers are
certainly going to shop around for what is
cheapest for them to offer their employees. Their
bottom line is their stock price. Twenty years
ago, this did not exist. In trying to improve the
medical system by making them accountable for
what they charged a total mess has been created.
Doctors are not going to take pay cuts, they will
cut the care they give and the same with
hospitals. Once gov't intervened whenever mothers
who just gave birth were being sent home the next
day because "little defenceless babies made
good headlines", plus it WAS the right thing
to do. But mostly it occurred because "it
made good headlines". Some very serious time and thought needs
to go into what is going on in this country with
healthcare. I don't know when it will happen.
Either the gov't will make improvements or
lawyers will finds ways to win cases against
HMO's, doctors, hospitals and this will bring
about change. It make since to take care of this
very serious problem through the gov't and not
through law suits. Wonder if nayone will ever read this. If
you do feel free to respond to: Elizabeth Shirk I have done my
homework for three years on all these illnesses
and now many of us with them know more about what
is going on then almost any doctors in the
country except a very kind handfull who really
care to do the investigation----but usually they
suffer from it themselves and have access to
research being done on themselves in depth. They
get better----why don't we, the public, deserve
the same
respect?????????????????????????????????????????????????????????????? Our we truly a
society where only the very rich can get the best
of healthcare?? I think so---healthcare if not
our right, like freedom of speach, but somebody
should start thinking it should be so that we can
be a more productive society. PLEASE LISTEN AND
HELP
US.................................................................... again PA
- J'appuie la pétition pour faire
reconnaître la fibromyalgie. C'est pas vrai que
c'est dans la tête.
- I'm writing to
sign your fibromyalgia petition. I am a victim of
fms and suffer pain daily. I've gotten to the
point now that I don't feel comfortable going to
the doctor any more to ask for a change in
medications. I feel like an inconvenience. Help
is needed and understanding is so very important.
Bless you for your
believing in your wife and being there for her.
My husband is there for me too, but I don't like
to let him know of the pain all the time either
as he has rhemitoid arthritis and is in pain a
lot too. Lucky for him, there is medication to
help him go through days occassionally with
feeling no pain. My prayer is that I along with
every other fibromyalgia patient will experience
more pain free days soon!
- I'm a person with fibromyalgia.
iIt's effecting my entire life. I need help &
support. someone to understand how hard it is.
- Thank you for contacting me. I
will go to your web site and check it out. FMS is
the silent illness that is not recognized by
physicians, family and the sufferer themselves.
So many of us live in a world of unrecognized
pain with no one to relate to. Finding a way to
become recognized and to relieve suffering should
be a priority for all of us. Unfortunately, the
medical profession is now taking the stand that
they have been too soft on us and we are to tough
it out. If they are too sympathetic, we do less
and suffer more. I do wish I could remember the
article where I found this information. I was
horrified as it was in a medical journal or from
a medical conference. Can you imagine...being too
sympathetic....even my physician is taking the
new stance. He does not discuss the FM any more
and the most that I can get for pain relief is a
NSAID which does absolutely nothing. I do not
like medication and basically refuse to take all
but the essentials.. but sometimes it would be
nice to just have something that would take care
of those days when the world is just agony.
- Received your e-mail and went to
your site. I am signing the petition and it is a
very good thing. Thank you for sending this to
me. Hope the rest of your weekend goes well,
- Je suis atteinte
de cette terrible maladie depuis l'âge de 26 ans
j'en ai maintenant 39, déjà 13 ans, j'ai des
rechutes régulières et ca empoisonne ma vie.
Je travaille à temps plein et je manque souvent
du travail à cause de ma fibromyalgie. Je prends
des elavils, morgesic, et ce matin mon médecin
m'a prescrit du zoloft en plus pour m'aider. Si
vous pouvez faire avancer la recherche, je serais
vraiment ravie car avoir mal partout ce n'est pas
une vie, mes douleurs et mes muscles endolories
sont du bassin au cou et me donnent mal aux
jambes Svp faites avancer
la recherche car je suis une femme qui est bien
fatiguée de souffrir dans un corps rempli de
douleur musculaire. Chicoutimi
- Please accept this as my signing
the petetion. I support this all the way. Doctors
are not educated enough about FMS. In fact the
doctor I work for said when he sees FMS on a new
patient's chart he just wants to though his hands
up and go in the room and tell them to get a
life. I asked him why. He seem to think that all
FMS people are lazy and do not want to take care
of themselves. I said does that include me?
"I am at work every day with a great deal of
pain, I guess I do not understand why you but
everyone in the same group." I felt like he
thought people made this up. I can assure you I
do not want to feel this way and it hurts
sooooooo bad when people and doctors take such a
ligth view of my disease. I just would like for
some of these people to live in my body for just
one week and then I bet they would sing a
different tune!! Sign Me Up!
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