FWD:RSD World News-an article about RSD well worth reading!!!

RSD In the News : FWD:RSD World News-an article about RSD well worth reading!!!
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From: byrd45 (Original Message) Sent: 7/15/2005 8:41 AM
For the moment by Rita Lussier: Their searing pain is compounded by
insufferable disbelief

01:00 AM EDT on Wednesday, June 22, 2005

Sitting in her kitchen in Johnston, Cheryl Zanni told me it all
started with numbness in her right shoulder. That was back in 1997
when she was waitressing at Mohegan Sun. No big deal, right? Bursitis,
perhaps. Nothing that a shot of cortisone wouldn't cure. That's what
Cheryl thought, too. Until the pain started growing and spreading,
slowly trying to take over her body, her mind, even her life.

Kathleen Burkinshaw, who lives 20 minutes or so away in Harrisville,
told me a similar story. Her case began four years ago with a blood
clot in her left leg. A few months later, she told me, the pain was
still there. In fact, it was worse.

It's difficult to imagine the life the two women described to me, even
though Cheryl is only 47 and Kathleen 36. Crawling out of bed every
morning and wondering what the pain will be like today. Will it be
numbness in your shoulder? Pins and needles in your leg? Or will it be
a particularly terrible day, when the pain flares up, burning red,
burning hot, stabbing you and stinging you until the tears start to flow?

After hearing their stories, I've tried to put myself in their place.
But it isn't easy. Everything is so hard. Little things. Simple
things. Can you go grocery shopping? Will the pain hold off long
enough for you to make it to the supermarket? Will you make it back?
And if you do, will you be able to get the bags out of the car, the
groceries out of the bags or will you collapse on the couch and just
leave them there, the pain having sucked every last ounce of energy
from your body? Not to speak of your soul.

And they went on to tell of nerve endings so sensitive that there's no
way you can endure air conditioning, that a sheet brushing up against
your leg or your child reaching for your hand will cause you to flinch
in agony. How could life be any harder?

It could. That's because the diagnosis for each of these women is a
neurological disorder called RSD that's both rare and controversial.

"The problem with pain in general is that it's subjective," says Dr.
James Gilchrist, a neurologist at Rhode Island Hospital and Professor
of Neurology at Brown University Medical School. "RSD is not a
particularly well-defined syndrome. Patients can present in a lot of
different ways, with a variety of symptoms, a variety of presumed
inciting incidents. In the medical and academic communities, anything
that can't be defined well becomes murky."

And murky is a good word to describe the controversy that seems to
swirl around RSD, despite the fact that it was discovered more than
150 years ago. Even the name, Reflex Sympathetic Dystrophy, Dr.
Gilchrist says, is not quite right. That's why the condition more
recently has been referred to as Complex Regional Pain Syndrome (CRPS).

No matter what you call it, the phantom nature of the pain makes it
difficult to pin down. What's more, in a tightly managed healthcare
environment in which doctors can be penalized for prescribing
unnecessary medications and painkiller addicts are relentless in their
pursuit of those prescriptions, patients with chronic and seemingly
inexplicable pain are often treated with suspicion.

According to Dr. Richard A. Rubenstein, a board-certified neurologist
in California, RSD is not a disease but a symptom complex that is
often diagnosed in error and frequently overused as a diagnosis.
"There's often a very prominent and untreated psychological component
to RSD," he says, which might explain why it's sometimes referred to
as The Crazies.

Of course, this is nothing new to Cheryl and Kathleen. They've heard
it all before. The pain isn't real. It's all in your head.

Kathleen's response? "If having RSD is a new definition for crazy,
then I choose to equate it to working like crazy to research various
treatments, pushing myself like crazy to do the physical therapy
exercises no matter how much pain it causes so the limb won't atrophy,
and advocating like crazy so people can recognize the symptoms."

Speaking of advocates, Dr. Pradeep Chopra, an assistant professor at
Brown University Medical School and Boston Medical Center, has a lot
of empathy for RSD patients. As the director of the Pain Management
Center in Pawtucket, he sees about one a week. It's important, he
says, to get the word out that if pain persists after an injury --
even a minor one -- it could be RSD. And the earlier it's diagnosed,
the better.

And as Cheryl and Kathleen would tell you, there's nothing crazy about
that.

Rita Lussier can be reached at ReetsAL [at] aol.com or by mail c/o
Features Department, The Providence Journal, 75 Fountain Street,
Providence, RI 02902.