Re: WHY PAIN IS GOOD

do folks here try to get 100% pain-free from meds??

i can't cuz i need to feel pain so i don't pop my spine out, nor the
hip/shoulder/neck/etc....my docs let me choose what i take and when, cuz
they know i'm responsible with pain meds. i'm gonna discuss this with the
rhuemy at my next appointment, i would like to get his opinion regarding
total vs. partial pain relief. i prefer to be able to function and on flare
days is about the only time you'll see me heavily sedated, and that's cuz i
do nothing when flaring, so i won't cause bodily damage cuz i couldn't feel
the pain of ripping muscles and shredding nerves and popping joints outta
place... JMHO on pain relief which works for me....

--
lynn
"Doug" <Nospamreat@xxxxxxxx> wrote in message
news:drfcu001l8a@xxxxxxxxxxxxxxxxxxxxx
> Makes you think,We would love not to feel pain 24/7.
> What a price to pay,not to feel pain!!!
>
>
>
> Doug
>
>
> "OldGoat" <oldgoatmail@xxxxxxxxxxxxxxxxxx> wrote in message
> news:_xxCf.5685$oo1.2854@xxxxxxxxxxx
> >
> > World without pain is hell, parent says
> >
> > Kids with rare disorder don't know they're hurting themselves
> >
> > By A. Chris Gajilan
> > CNN
> >
> > Friday, January 27, 2006; Posted: 1:52 p.m. EST (18:52 GMT)
> >
> > CNN) -- When you first meet 4-year-old Roberto Salazar, you can't help
but
> > notice his unwavering smile and constant laughter. By all accounts, he's
a
> > very happy boy.
> >
> > It is only when he rams his head violently into walls or plays a little
> > too roughly with a schoolmate, all the while smiling, that you are
> > reminded that he suffers from an incredibly rare genetic disorder.
> >
> > Roberto is one of 17 people in the United States with "congenital
> > insensitivity to pain with anhidrosis," referred to as CIPA by the few
> > people who know about it.
> >
> > Roberto was born in July 2001, becoming Luis' and Juan's little brother.
> > As a newborn, his parents thought he was the perfect baby.
> >
> > "Roberto was wonderful. He never cried. He would sleep 23 out of 24
hours
> > a day. He never cried to eat, never cried that his diaper is itching,"
> > said his mother, Susan Stingley-Salazar.
> >
> > At 3 months, things abruptly changed. Roberto refused to eat. He was
> > rapidly losing weight. His parents tried desperately to find ways to
> > "force a child to eat that doesn't want to eat," Stingley-Salazar said.
> >
> > First they tried to feed him with an eyedropper. Then a feeding tube was
> > attached to his stomach at 8 months.
> >
> > Other abnormalities quickly surfaced. Roberto was severely susceptible
to
> > heatstroke on hot summer days. His parents soon noticed he did not
sweat.
> >
> > "You can't carry Roberto because he sucks your heat from your body.
You're
> > hot, sweaty. His body can't sweat like yours so he's just absorbing all
of
> > your heat," Stingley-Salazar said.
> >
> > His family was shocked when Roberto started teething. He gnawed on his
own
> > tongue, lips and fingers to the point of mutilation.
> >
> > "If you could imagine when you bite your tongue how bad it hurts. At one
> > point, you couldn't even distinguish that his tongue was his tongue,"
> > Stingley-Salazar said.
> >
> > Stingley-Salazar, a registered nurse with a degree in molecular biology,
> > took Roberto to see more than 60 physicians in the boy's first few
years.
> > She researched his symptoms on the Internet every night. She e-mailed
any
> > specialist she could find.
> >
> > She came up with very few answers until she contacted Dr. Felicia
Axelrod
> > of the New York University Dysautonomia Treatment and Evaluation Center.
> >
> > Axelrod has studied this family of "no-pain" diseases for more than 35
> > years. These genetic disorders affect the autonomic nervous system --
> > which controls blood pressure, heart rate, sweating, the sensory nerve
> > system and the ability to feel pain and temperature.
> >
> > Stingley-Salazar's first reaction: "There is somebody out there who
> > actually knows what we've been going through, you know, the hell we've
> > been living for the last two-and-a-half years."
> >
> > CIPA is the most severe and fatal type of the seven types of hereditary
> > sensory and autonomic neuropathy, or HSAN. Overheating kills more than
> > half of all children with CIPA before age 3, Stingley-Salazar said.
> >
> > According to Axelrod, levels of pain vary.
> >
> > "For some children it's a mild degree such as breaking a leg, they'll
get
> > up and walk on the leg. They feel that something is uncomfortable but
they
> > keep on moving," she said. "For other children, the pain loss is so
severe
> > that they can injure themselves repetitively and actually mutilate
> > themselves because they don't know when to stop."
> >
> > All HSAN disorders are recessive genetic disorders -- both parents have
to
> > carry the genetic mutation in order to pass it on to a child. But there
is
> > less than a 1-in-4 chance that the child will develop it.
> >
> > Neither of Roberto's older brothers has the disorder.
> >
> > A more common HSAN condition is familial dysautonomia, or FD. There are
> > about 500 cases of FD in the United States, Axelrod said.
> >
> > The first sign of FD is a child's inability to suck properly followed by
> > delayed milestones -- these children walk and speak later.
> >
> > Often, FD patients endure severely dry eyes because they are unable to
> > produce tears.
> >
> > Also, part of this sensory disorder is difficulty "telling where they
are
> > in space," Axelrod said.
> >
> > The minor effect is constantly bumping into things. The major effect is
> > that 80 percent of these kids suffer curvature of the spine because they
> > have no concept of posture.
> >
> > "The hardest thing growing up with FD is that sometimes your balance can
> > be off. Also when you get busy, like when your blood pressure drops, I
> > faint. It's scary for people who don't know what to do," 15-year-old
Perry
> > Goldberger said.
> >
> > Perry was diagnosed when she was 2 weeks old. She, too, suffers from
> > common ailments of HSAN -- she gets liquids through a stomach tube; she
> > can't distinguish between hot and cold; she doesn't feel pain.
> >
> > Perry has learned to handle her daily medical regimen: During the day
she
> > takes nebulizer treatments for her lungs and seven tube feedings. At
night
> > she must use an oxygen machine to help her breathe and must place a
> > moisture chamber around her eyes while she sleeps.
> >
> > "This is my daily schedule that I take every single day. You get used to
> > it after awhile," she said.
> >
> > Her mother, Laurie Goldberger, said her family takes it one day at a
time
> > and is teaching Perry a certain level of independence.
> >
> > "Now at 15, she's gotten very responsible and understands it and she
knows
> > she has to take it. So at school she does her own medicine," Goldberger
> > said.
> >
> > Axelrod points to Perry as an example of the huge strides made in HSAN
> > disorders.
> >
> > "Forty years ago, a child with FD had a 50 percent probability of
reaching
> > the age of 5," she said. "Today, a child born with FD would have a 50
> > percent probability of reaching the age of 40."
> >
> >
>
>


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