Renee,

I am always amazed (although I shouldn't be anymore)
that people would have to suffer without any help for
this illness for so many years. I still remember how
awful my son's episodes were without any medication. I
simply can not imagine that you and others have gone
so long without any relief.

I just wanted to thank you for sharing your story with
us. Sounds like some help will be coming your way
soon.
Good luck to you.

Susan
Mom to Remy 5 ASD and CVS
& Miranda 7 typical kid



--- wildstarr2004 <wildstarr2004@...> wrote:

>
> Hi, my name is Renee & I am 43 yrs. old. I am a new
> member & new @
> this but I would like to share my life's story so
> that others can see
> that they aren't crazy & there are others that are
> going through the
> same thing that they are.I have been made to think
> that I am crazy &
> my illness is mostly in my head.I have just this
> week found this site
> & learned about cvs.I have been suffering with this
> illness for 31
> yrs.I have read numerous stories this week that are
> like my own & I
> am so glad to know that I am not the only person
> that has this
> illness because there is no doctor that knows what
> exactly is wrong
> with me.This is my story & it is a long one. The
> first time that I
> got sick was @ the age of 12. I became very
> nauseated & immediatly
> began vomiting. For the next yr. this would happen
> off & on when I
> got worried about something. I had no other systoms.
> Between the age
> of 13 to 14 it became much worse with unbearable
> abdominal pain,
> severe nausea, vomiting, diarrhea, sweaty then the
> severe chills. I
> would be taken to the ER where they would run every
> test they could
> come up with, all with negetive results. Sometimes I
> would be
> hospitalized for 2 to 5 days. I would be given IV
> drips, pain &
> nausea meds, gastric tube down my nose & throat with
> no relief. It
> always has to run it's course. I would have nothing
> to vomit but
> green & yellow bile. The retching is unbearable.At
> 16 I was sent to
> UAB Hospital in Birmingham,Alabama to a specalist &
> of course more
> tests were done all with negative results. After
> about a wk. or
> longer I was diagnosed with Irritable Bowel
> Syndrome. I was
> hospilized so many times throughtout my teenage yrs.
> to early
> twenties that it seemed like a normal part of life
> for me but was
> always told that it was a &#65007;virus&#65007;, flu
> or that they just didn't know.
> My bouts come mostly during my periods but not
> always. It almost
> always starts in the early morning hrs. I wake up
> very nauseated,
> severe abdominal pain, diarrhea & then the vomiting
> starts. About
> every 3 to 5 min.I am vomiting, after about 1 hr.
> the retching
> begins. After 3 to 5 hrs. of this I have to start
> sticking my finger
> down my throat to try & get relief. I try to hide
> this fact from
> family & nurses because they get very upset with me
> saying that I am
> only making it worse. I have to do this trying to
> get whatever I can
> up. I have smoked pot off & on over the yrs. as this
> seems to relax
> me & helps with the mild nausea but once the severe
> part takes over
> even pot doesn't help. I lay in a fetal postion most
> of the time when
> it gets full blown as I can't stand to move. I
> become very dis-
> oriented & weak. The last 2 yrs. have been very bad
> for me, I had to
> give up my job & move in with my mother because I
> was was so sick
> daily that I couldn't function. My ER & hopital
> stays bacame so
> numerous that I could go to the ER & have to return
> the next day.
> Hospital stays could be 2 to 3 times in a month.
> Since nausea &
> vomiting aren't a systom of IBS the doctors never
> know what to do for
> me. My family has become fed up with my illness &
> keep saying that I
> can over come this. When I am having a full blown
> bout I aways think
> that it would be better to be dead. I live in daily
> fear of when the
> next attack will happen because I know that the
> doctors & their meds
> won't help me. I have read that very young children
> have this illness
> & I can't stand the thought of them suffering the
> way that I have.
> It's sad to know that there are others like myself
> but it is
> comforting for me because I now know that there is a
> name for what
> is happening to me.I am gathering as much in-fo as I
> can for my
> doctor in hope that he will see that I do an illness
> called cvs &
> prescribe the correct meds for me including marinol.
> I hope that one
> day there is a cure & we can all get our lives &
> sanity back.I live
> in daily fear of this illness. Good luck to us all.
>
>
>
>
>




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