‘I don’t feel like having skin today’ (News story on RSD patient)

[Guest guest]

'I don't feel like having skin today'

*By JO CIAVAGLIA

*Bucks County Courier Times

Carol-Ann Darnley hates all things soft, fluffy, silky, satiny, downy. She

can only wear sweat suits if they're fleece-side out. A dainty handshake

sends her skin screaming. Cat fur feels like flames licking at her legs.

" I can't stand it, " she said. " Sometimes I say, 'I don't feel like having

skin today.' "

This is how the 38-year-old Middletown woman has lived for 10 years, ever

since she injured her shoulder pulling a patient's hospital bed out of an

elevator.

She is lucky, though. She was diagnosed with reflex sympathetic dystrophy

about two months after her injury. Most people who suffer from the chronic

neurological disorder see an average of five doctors before they are

diagnosed, experts say.

The condition, also known as complex regional pain syndrome, typically

develops after an accident, injury or surgery where the bone or soft tissue

doesn't heal normally, allowing nerves to misfire, sending constant pain

signals to the brain.

An estimated 200,000 to 1.2 million Americans have RSD, but experts say the

numbers are likely higher because it's invisible, often hard to diagnose and

most doctors know little about it. RSD is also controversial because some in

medical circles consider it a psychiatric condition.

" It mostly gets blown off and people go off in the sunset, " said Dr. Philip

Getson, a family doctor recognized as an RSD expert. He treats Darnley and

has a waiting list of patients seeking help.

No cure exists for RSD, only pain management. The most successful treatment

— where patients are placed in a drug-induced coma — is experimental, not

covered by insurance and available only in Germany, RSD experts say.

It's the route that Darnley hopes to take.

The first suspected cases of RSD were reported among returning U.S. Civil

War soldiers, said Jim Broatch, executive director of the Reflex Sympathetic

Dystrophy Syndrome Association in Milford, Conn. Today, the National

Institute of Neurological Disorders and Stroke, a part of the National

Institutes of Health, supports and conducts research relevant to RSD.

The controversy surrounding the disorder lies in diagnosing it, which relies

chiefly on a detailed clinical patient history. But many of the symptoms

overlap other conditions. A seemingly minor injury can cause it. The only

diagnostic test available is thermal imaging, Getson said.

The lack of objective tests for RSD is problematic and leads to the

perception the disorder isn't real.

" Because we can't take a picture of it, it must not exist, " Getson said.

OBVIOUS FINDINGS

Complicating matters is that few doctors specialize in RSD, and fewer have a

working knowledge of it, said Dr. Schwartzman, chairman of the

neurology department at the Drexel University School of Medicine and a

longtime RSD researcher. His patient wait list is backlogged almost three

years.

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Schwartzman blames medical schools, which do little to teach students about

the subtleties and nuances of pain. " The findings are obvious, " he added.

" Anyone who doesn't accept it is an idiot. If you don't know what [RSD] is

now, it's pretty much like the world is flat. "

When Darnley suffered her shoulder injury, she thought she tore her rotator

cuff. Within minutes, her entire arm was swollen. In the hospital's

emergency room, the doctors took X-rays and put her arm in a sling. Later,

she saw an orthopedic surgeon who did an MRI scan. Again, her results were

normal.

Ten days after she was injured, Darnley said she was at work when her left

hand and arm turned colors. " Literally, my fingertips would go black, " she

said.

In the office of an orthopedic surgeon, her left arm and hand started

turning a mottled dark purple. Later tests confirmed the surgeon's suspicion

of RSD.

Since then, Darnley has endured 76 treatments to temporarily relieve the

pain. The pain has spread throughout her body, including her internal

organs, she said. She also spontaneously breaks out in " hot spots, " red

welts that feel like brush burns.

" That is why I need to go to Germany to put me in remission, " she said.

A CURE?

Over the last 18 months, severe RSD suffers have traveled to Munich for a

treatment in which the patient is placed in a five-day coma using massive

doses of ketamine, an anesthetic that prevents the brain from processing

sensory input. The drug is most commonly used on animals, but also has

select human use; in large doses, it has psychedelic effects.

" They all come back better, " added Getson. who said a half-dozen of his

patients had the treatment.

An estimated 30 percent to 40 percent of patients emerge from the coma pain

free and no longer need pain medication, said Drexel's Schwartzman.

Once back in the United States, some patients require ketamine booster

shots. Otherwise the pain could return, Getson said.

Modified versions of the experimental procedure involving far lower doses of

ketamine are available at University Hospital in Camden and Hahnemann

Hospital in Philadelphia. The experimental treatments cost the same here and

in Germany — about $25,000 — and commercial health insurance doesn't cover

either treatment.

About 70 percent of patients who undergo treatment in the United States also

see great improvement but typically for only three to six months,

Schwartzman said.

That is one reason why Darnley wants to take her chances in Germany,

hopefully sometime this summer. She describes the constant pain as

debilitating and unpredictable.

" I can't stand to have the hair grow [on] my legs, " she said.

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