- Nous sommes un (jeune) couple,
approchant la trentaine (lentement), et si c'est
moi qui tape, c'est parce que ma femme ne
pourrait taper un si long texte sans avoir à en
souffrir toute la nuit. La fibromyalgie fait
partie de notre vie, c'est notre principal combat
; un combat que je tente, dans la mesure de mes
moyens, de mener aux côtés de la femme que
j'aime, et qui souffre sans que je puisse apaiser
ses douleurs. Pendant des années, elle n'a rien
su. Il a fallu 10 ans pour arriver au diagnostic
final de fibromyalgie ; 10 ans au cours desquels
on lui a diagnostiqué un Sclerose en Plaque et
un foule d'autres choses toutes aussi
réjouissantes pour le moral. De 17 à 27 ans,
elle est passée par tous les services
hospitaliers, elle a été l'objet de toute
l'ignorance du monde médical quant à la
fibromyalgie... J'avoue que, comme vous, ça
n'est pas facile tous les jours. Elle prend
énormément sur elle (c'est son pire défaut),
ne dit rien de ses souffrances et oppose à
toutes les situations douloureuses une volonté
de fer (que j'aimerais avoir, parfois) qui la
laisse souvent épuisée... et me laisse tout
autant coupable de n'avoir pas su percevoir tel
ou tel signe auquel je devrais être habitué
pourtant. Le pire pour elle, durant ces années
d'incertitudes, a été de passer pour une
névrosée hystérique... être traitée
d'hystérique par un psy qui ne vous a pas vu
plus de 10 minutes n'est guère agréable, mais
quand en plus vous avez fait preuve, durant toute
votre vie, d'une intelligence rare, d'une
sensibilité et d'un jugement hors du commun,
c'est insupportable. Pour elle comme pour moi.
Aujourd'hui, elle fait partie de l'association
des fibromyalgiques (AFF) et est suivie par le
docteur Zakarian, qui fait partie du comité
scientifique de cette association, après un
examen dans le service du Dr Eisinger (je ne suis
pas certain de l'orthographe), à l'hôpital de
La Garde, dans le Var (83). Nous avons la chance
de vivre sur la Côte d'Azur, non loin de St
Raphaël, où officie le Dr Zakarian. Question
traitement, seul le Rivotril a quelque effet sur
son état général. C'est un médicament
habituellement prescrit dans les cas
d'épilépsie. Par ailleurs, nous nous sommes
rendus en Italie pour y acheter le Biochetasi,
dont certaines sources vantent les mérites et
qui n'est malheureusement pas commercialisé en
France (vendu en Italie et en Andorre, en Espagne
et au Portugal apparamment aussi). Les résultats
sur ma compagne, atteinte d'une forme lourde de
fibromyalgie, ne sont pas convaicants (voire
même inexistants), mais nous ne sommes pas
médeçins, loin s'en faut : d'autres malades
pourraient voir leur état s'améliorer grâce à
ce médicament. Il est en vente libre, dans
toutes les pharmacies. Pour information, une
boîte de 10 sachets (1 semaine environ) coûte
environ 30 francs. Avant le Rivotril, elle a
essayé le Xanax et l'Anafranil (ensemble). Les
résultats étaient maigres, pour des effets
secondaires importants. A l'heure actuelle, en
plus d'un traitement médicamenteux, ma femme se
rend 2 fois par semaine à des séances de
kinésithérapie en piscine qui, si elles la
fatiguent, ont au moins l'avantage de la faire se
sentir beaucoup mieux ; selon ses dires, c'est un
conseil à donner à toutes les personnes
atteintes de fibromyalgie. Couplée à des
séances de sophrologie, la kinésithérapie en
piscine, si elle ne guérit rien, offre un réel
soulagement. Enfin, d'un point de vue purement
administratif, nous nous battons actuellement
pour un classement à 80 % à la COTOREP. Un
docteur qui a vu ma femme 10 minutes a émis un
avis défavorable quant à ce classement, lui
conseillant " d'aller voir un psy".
Depuis, nous sommes en appel et attendons la
convoncation du tribunal du contentieux. A ce
propos, nous aimerions, si cela était possible,
avoir des témoignages de personnes, éngagées
comme nous dans ce combat ou l'ayant déjà
gagné.De plus, jusqu'à il y a peu, ma femme
bénéficiait du 100%, du fait que la
fibromyalgie était une pathologie classée sur
liste par la sécurité sociale. Or, aujourd'hui,
nous avons éssuyé un refus de renouvellement.
La raison invoquée étant que cette maladie
n'est plus (ou pas !!!!) sur liste (admirons la
cohérence de l'administration...). Apparemment,
il y a eu au mois de janvier 99 une rencontre
entre l'association des fibromyalgiques et les
pouvoirs publics (dont la sécurité sociale) ;
rencontre qui a vu la fibromyalgie reconnue par
la Sécurité sociale... qu'en est-il aujourd'hui
? Pourquoi cette disparition des listes ? Si
quelqu'un avait le moindre élément de réponse,
il serait le bienvenu : les standards
téléphoniques de la Sécu ne nous offrant pour
toute réponse que la mélodie du printemps...
- Interessante ton idee.... Mais moi
je souffre le martyre et je suis heureuse dans ma
vie. Alors ou est l'explication. Je me passionne
pour beaucoup de choses. Tu aimes l'Êcosse, moi
j'aime les pays du soleil et c'est vrai que
lorsque j'etais aux Iles Canaries la douleur
etait moins forte, mais de la a faire des
marches... Je ne marche plus qu'avec des cannes
anglaises (pour ne pas dire des bequilles...) et
parfois mes jambes se derobent et j'ai l'image de
la chaise roulante. On peut y vivre c'est certain
mais je voudrais quand meme conserver mon
independance. Pour la douleur, j'ai essaye
beaucoup de choses : acuponcture, reeducation
piscine, bains d'algues dans baignoire thalasso,
etc.. mais rien ne la fait diminuer et je vis
avec, non stop, jours et nuits depuis plus de
trois mois. Combien de mois faut il supporter
pour voir une amelioration et vivre seulement
avec des crises ? Qui peut me repondre ? Je sais
que chaque cas est particulier mais il est vrai
que cet echange est tres important. Il n'y a
qu'entre nous que nous pouvons nous comprendre.
Courage à tous et toutes. Meilleures
salutations.
- I heartily endorse
the fibromyalgia/mps petition. It is long past
the time that sufferers of these conditions
should have to wait until their minds and/or
bodies are so ovewhelmed by the pain and
accompanying barrage of symptoms associated with
these diseases that new disabilities emerge in
the shell of the body left to the sufferers. In
our present system, only after the mind and/or
body have completely collapsed does the
possibility of disability relief become a
reality, not because the disability caused by
fms/mps is finally recognized, but because of the
almost certain further debility that follows
years of unremitted pain and distress.
- It would be a great thing to find
a cure to end this misery. WA
- I am signing this petition because
something need to be done to help those of us
with FMS and CFS
- I beleive it is time to offer more
to the sufferers of Fibromyalgia/Myofascial Pain
Syndromes in way of medical, emotional and
societal help. Whatever it takes to relieve the
pain so that we can return to productive lives is
needed now! MI
- I am a patient which has been
diagnosed with Fibromyalgia -- with all
likelihood -- have had it for years without
proper treatment. Having suffered the ignorance
of family, friends, and doctors -- do wish to
continue a semi- normal life as free from pain --
free to continue being active -- strongly support
the petition to educate and get grants for study
on this illness.sick of being in pain all the
time some times you just want to end it all cant
do the things i used to do my famliy suffers
becuse of it too cant work
- I am on my way to recovery after
10 years of hell - I only wish MORE people with
this DD wanted to get better - the medical
community will never be able to do what each
person can do for himself/herself. It seems that
there are several kinds of CFS - and I have had
EVERY symptom and was bedridden - one happy day -
my husband bought me a computer - then I read
stories of individuals who were poisoned by the
mercury in their teeth - I got my holistic M.D.
to get the 50 dollar test kit - took it - tested
positive for 5 metals - started DMSA - orally -
and my poor immune system which was wracked since
high school is turning around so to speak - when
the immune system can not function and poisons
are in the glands - the body can not function - I
no linger get all the viruses which wrecked my
colon because the poisons are no longer
disrupting it - I only wish more people with CFS
would listen to reason and not depend on the
"authorities" - they will do next to
nothing - regular tests done by M.D.'s who are
not holistic will never show anything because
these allopathic doctors know nothing and refuse
to try the labs and other facilities which are
used by the holistic practitioners - their
patients loose - it is a shame!
- Thank you for starting your
petition. I have been going through HELL just
like a lot of other FMS patients. Sometimes I
think that we are pretty much on our own. The
Medical Community for the most part has little
compassion for us. I do think that they are
starting to come around since the number of us is
growing. I find that the depression is the
hardest thing to curb. When you don't look sick,
it is really hard for others to understand why
you say that you can't do the things that you
used to. All Chronic Pain illnesses really need
more attention. Just dealing with the constant
pain is enough to make a person want to end their
life, but to have those that you love not
recognize your illness really makes it almost
impossible to be brave and continue the struggle.
I didn't sign your guest book because I wanted to
reply to you in person. If you don't mind I'd
like to stay in touch with you. I have one other
friend that I met over the internet that has FMS.
You seem to be a mover. If I can be of any
assistance, please let me know. By the way I am
playing the waiting game with a LTD insurance
company. I also am getting ready to file for a
divorce after which I plan on applying for Social
Security Disability. This is another long waiting
game. Wish me luck!
- I am a 34 year old single mother.
Like you FMS and CFS has robbed me of my life,
marriage, and anything else that is considered
having a normal life. My life is not normal and
hasnt been for years...and I am still fighting
tooth and nail to get SS after two LONG years. I
am here and will do whatever is needed of me!!
ALABAMA
- I would like to sign your
petition!!! It would be great if we could get
some research done on the causes of Fibromyalgia
other than doctors telling us it is
psychomatic!!! I do agree anti-depressants help
keep me from drowning in despair, but if I didn't
have pain medication for the pain I would just go
insane. We suffer from a disease no one knows
about and no body cares about...until they get
it!!! Ohio
- I am attaching a
list of family and friends who are signing the
petition. I am going to write our Governor
tonight. Don't laugh! He actually is a friend of
ours and has worked with my husband on "Make
A Wish", which is a program that grants
dying children a wish. Governor Ventura was on
the board of directors and we have helped them
raise quite a bit of money in the last 11 years.
He will help!.
- I am a fibromyalgia sufferer and I
would like to sign the petition on the above
website supporting better education to new
students in the medical field for better
awareness of the debilitating effects of this
syndrome.
- This condition has stripped me of
the best years of my life by not allowing me to
enjoy the most simplest of tasks that I enjoy
most in life such as just smiling/laughing. This
way sound trivial to some and I only mention it
to show just how limited my activities are that
just a few laughs with family and friends can
trigger such severe pain in my face and head that
I sometimes must take pain medication and go to
bed. Just a simple walk, which I used to be able
to walk for miles, especially when I felt I was
putting on weight and wanted to drop a few
pounds, now I can no longer walk or stand for
long periods of time without the end result being
severe pain. These are just a few examples of how
this syndrome has taken over my life, and I
mention these because these are things most
people take for granted in their lives. Minor
physical activities that the normal person does
not realize they are tasks, but in the body of
one suffering with fibromyalgia, that is what a
smile, a few laughs, a short walk, standing up
for a short period of time, becomes. So just
imagine what housekeeping, e.g., mopping a floor,
doing laundry, cleaning a stove/refrigerator,
grocery shopping, etc., does to someone suffering
from fibromyalgia does to us! Performing any of
those tasks could mean a few days of complete
bedrest! And most times you don't get to complete
them before you are racked with pain all over.
For me it means not only severe body aches, but
severe migraines for days at a time. I have only
given a few of the reasons for better support
from the medical field and general public for
this syndrome, but there are many, many more
reasons and I am sure that the hundreds of
thousands of sufferers in this country alone
could increase this list twelve-fold or more.
Thank you for listening.
- Are you telling me that they don't
believe that your sufferers are real, if they
don't understand what you're going through, you
could print them this : That is exactly what I am
saying. My father dismisses the entire illness,
although he has said that I have a "tendency
to be ill". He does not believe in CFIDS.
Just today, my very understanding husband got
upset with me on the telephone (around 1:30 pm)
because I answered it in a very tired voice. He
said that I didn't have to be so nasty on the
phone, or sound so irritated. I reminded him that
I had NO SLEEP last night (despite taking
Vicodin). His response was "I had less sleep
than you did". I think that it is just too
tough for some folks to grasp. I cannot find
doctors to take me seriously, either. The doctor
who diagnosed me won't even see me, and his nurse
is absolutely mean when I try to schedule
appointments. She has actually said, "I
don't see what your problem is, I was diagnosed
with CEBV, and I don't have any problems. You
just want Social Security so you don't have to
work" I appreciate the info that you sent
me, and will consider passing it along.
- I just returned home from my
doctor and am practically in tears. I would like
to share this experience with you. To make a long
story short, my "new" doctor of less
than one year said something to me today that
makes me just want to give up. I was basically
told to "move on and get past it". If
that isn't the epitome of ignorance, I don't know
what is! (I felt like kicking him in the gonads
and telling HIM to "get past it"!) Now,
I have to go in search of yet another doctor. I
can't even remember how many doctors I have had
in the last 10 years. I also brought my Devin
Starlanyl FMS Survival Manual with me and tried
to explain to him how some of my GI problems may
be linked to my FMS. He said he "isn't
aware" of any such problems. I think it is
about time he educated himself about the link
between Gastrointestinal problems and
FMS...especially since he is a Primary Care
Physician who specializes in Gastrointerology! I
find this scary. There is NO excuse for this as
far as I am concerned. As we all know, finding a
good doctor who can deal with FMS efficiently and
compassionately is almost impossible to find.
This is search is narrowed by the fact that in
some cases, when we do find a competent
physician, the evil insurance companies won't let
you see them! In my case, my OB/GYN is very
knowledgeble about FMS and very understanding,
but she can ONLY see me for OB/GYN related issues
because of my insurance company! She is perfectly
willing to help me, but her hands are tied. I
think this is obscene! I think it is hideous that
insurance companies and HMO's are allowed to
stick their 2 cents into our healthcare,
especially when you have a problem that many
doctors are unable to deal with, like
Fibromyalgia! If you are fortunate enough to find
a doctor who can and will help you with your
illness, what difference should it make to the
insurance companies if it isn't necessarily their
specialty? Of course, one wouldn't go to an
Opthamologist to have a baby, but seeing my
OB/GYN for FMS doesn't seem unreasonable,
especially since FMS primarily affects women, I'd
say she is qualified. They are doctors, period.
It's about time insurance companies butt out of
our healthcare and do what they are supposed to
do...provide insurance! This is my opinion. I'd
like to know what you think. You'll be happy to
know, however, that for the first time I stood up
to a doctor and told him what I thought. You can
just take this crap for so long, you know?
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