Thursday, March 30, 2006

Cowiche woman with painful disease hopes to spare others pain


Yakima Herald, originally uploaded by rsdscrpsnews.

Published on Sunday, March 26, 2006

Cowiche woman with painful disease hopes to spare others pain


Carol Rains clutched her husband's hand tightly as she waited nervously for her turn.
She looked anxious, and maybe a little tired as she smoothed a wrinkle in her jeans.

But not sick.

John Rains was the only person in the room who knew that the right hand he was squeezing is the only part of Carol's body that isn't tortured by a deep, burning pain at the slightest touch or breeze.

Most of the people in the audience turned their attention elsewhere as the Yakima City Council moved to the proclamation section of its March 7 agenda.

But Carol leaned forward in her chair, ready for her long-awaited chance to have a roomful of people acknowledge her eight-year war with chronic pain and the people who don't believe it exists.

John looked at her and smiled, grabbing for his camera as Mayor Dave Edler asked Carol to stand at the lectern while Councilman Ron Bonlender read a proclamation Carol co-authored about a scarcely known disease called reflex sympathetic dystrophy.

"Whereas RSD is a progressive neurological disease that has constant, severe burning pain as its main system," he read ...

"Whereas many health-care professionals mistakenly believe RSD is a psychological condition rather than a physical one ...

"Whereas early recognition and proper management of RSD may lead to the prevention and/or the reduction of the severity of this potentially catastrophic condition ..."

And as if it were the easiest thing in the world to do, it was officially Reflex Sympathetic Dystrophy Awareness Month in the city of Yakima.

To almost everyone, it means nothing.

But to Carol and the few people who have believed her since she was diagnosed with the controversial disease seven years ago, it means everything.

One Friday in July 1998, Carol was moving bundles of wood at Can Am Millwork (now Alexandria Millwork) in Moxee, when she felt a tear in her right knee.

After a doctor's appointment the following week, Carol began physical therapy. In November, she had surgery to repair her torn medial meniscus.

But even after the surgery, the constant ache and occasional tight pain in her leg continued to worsen, forcing her to quit her job within a month.

"I started wondering, 'What is this?' " she says.

Doctors in Yakima and Seattle told her it was impossible for her to be feeling pain. They told her it was all in her head and she should continue physical therapy, she says.

But the situation grew more strange. Driving her two teenage sons to school, she began to notice that when the keychain dangling from the ignition of her Ford Bronco would brush her thigh, it would set off intense pain. More and more, the skin on most of her right leg became sensitive to touch and temperature.

One year after her injury, she demanded that her doctor take a closer look.

An MRI at Orthopedics International in Seattle in November 1999 showed that her knee was completely normal. The tear had healed cleanly.



The same day, after examining Carol's leg and hearing about her symptoms, Dr. Edward Khalfayan diagnosed reflex sympathetic dystrophy, or complex regional pain syndrome, in her right knee.

Frustrated because she'd never heard of the disease, Carol asked her local doctor's nurse to collect some information for her about RSD.

A few days later, the thick manila envelope full of Internet printouts arrived.

She read only a few pages before her frustration turned to fear.

RSD, she learned, is triggered when the nervous system malfunctions following trauma to the body. Doctors aren't sure why, but when the injury heals, the local nerves don't stop sending pain signals to the brain. In many cases, especially without early treatment, the condition can spread, causing chronic burning pain all over the body.

The Reflex Sympathetic Dystrophy Syndrome Association estimates that between 200,000 and 1.2 million people in the United States have the disease. The numbers are difficult to track because most patients and many health-care providers are not familiar with the disease and symptoms vary from patient to patient.

The disease affects women three times more often than men. The average age of diagnosis is 42, but it has been found in children as young as 3.

Carol was 36 — and terrified by what she read.

"I started looking over it and I started crying," she says. "And I cried and I cried and I cried."

She was still in tears as she shared the information with John when he got home from work that night.

"I think we both knew from that moment on, our lives would never be the same," he says.

For as long as she can remember, Carol had gone camping or hiking nearly every weekend.
She grew up in the Yakima Valley and knows the trails in the surrounding hills as well as she knows her backyard.

But her days of walking several miles at a time or sledding with her children were over. With the eight medications she was on and the degenerative nature of RSD, the activities she had loved became nearly impossible.

Just before her injury, Carol, John and their sons had moved seven miles from the summit of White Pass to manage Camp Zarahemla, a resort owned by the Mormon church.

In the winter months, when she was in too much pain to drive, she watched her sons walk the 21/2-mile driveway to the bus stop in more than a foot of snow.

"You go through a lot of depression," she says. "A lot of life's not worth anything anymore."

After a few years, the family moved to Cowiche and had to give up two of their dogs because Carol could no longer take care of them while her sons were in school and John was at work.

She was terrified as the pain slowly spread from her right leg, to her left, and then to her left arm.

She could no longer play with her grandchildren without someone telling them to be careful not to hurt her, as if she were the child.

"I knew it was going to be harder on her, not being able to be active around her grandkids," recalls Carol's daughter, Sharon Horn. "There were plenty of days when she could do nothing but sit on the couch and cry because she hurt and there wasn't anything any of us could do to help her."

Among pain doctors and patients, RSD is known as the suicide disease because, for many, that's the only logical escape from the pain.

But Carol still had too much to live for.

Doctors will probably never know whether it was her initial knee injury or the surgery that triggered Carol's RSD.

Either way, because she was injured at work, her insurance claims were handled by the Washington Department of Labor and Industries. And by the time of her diagnosis, she and her Yakima attorney, Darrell Smart, were already fighting for the benefits they believed she deserved.

In the meantime, Medicare and John's work insurance were picking up the tab for most of her treatment.

When Carol was diagnosed, Khalfayan told her that if she received a series of sympathetic nerve blocks — injections of medicine onto or near nerves — there was an 80 percent chance that the pain would stop and she would go into remission.

But the department never approved the blocks.

"We try really hard not to pay for things that haven't been shown effective," says Robert Nelson of Labor and Industries' communication department. "We also only really treat pain when it hinders a worker's ability to recover."

Before accepting that Carol had RSD, the department paid a panel of Independent Medical Examiners — doctors the state hires and certifies to examine patients who have filed workers compensation claims — to evaluate her condition.

Though all six of the doctors Carol had seen on her own confirmed the original diagnosis, four of the five IMEs said she did not have RSD and that she didn't appear to have any physical limitations.

Despite the numbers and the working arrangement the doctors have with the department, Nelson says they are impartial experts.

"They really don't have a dog in the fight in terms of whether they want to side with the employer or the worker," he says.

But Smart doesn't buy that. Some doctors, he suspects, side with the department just to make easy money.

"I've had experts for the department who say they simply don't believe the condition exists," he says. "At any point in time, you're only a medical examination away from being turned away."

And Carol was. After years of going back and forth between doctors hired by the department and her own treating physician — pain specialist Dr. John Baumeister in Edmonds, Wash. — in March 2003 Carol heard Labor and Industries' final decision.

The department stopped her benefits and gave her about $10,000 to compensate her for a permanent 10 percent disability in her lower right leg.

"When I finally got $10,000, I was done with it. I was just so glad to know that they would be out of my life," she says.

But Smart encouraged her to stay in the ring.

"He told me, 'Carol, you have a good case here. This isn't right, you can do more.' "

So he filed an appeal with his own money, Carol says, taking a chance because he was certain he could win the case.

And in October 2004, Carol received a copy of the Board of Industrial Insurance Appeals' decision.

"I had no idea when I read it what it was going to say," she says.

It said that L&I was wrong. Carol's injury was worth more, she had RSD and the department must reinstate her benefits.

In September, Carol met Cynthia Toussaint, the only other person she's ever met face-to-face who has RSD.
Toussaint, a Californian who has had RSD for 23 years and has fought relentlessly and successfully for recognition of chronic pain diseases in her state, spoke in Yakima for Chronic Pain Awareness Month and met John and Carol afterward.

Now in a wheelchair, Toussaint, who is running for a seat in the California Assembly, got RSD following an injury she suffered when she was a 21-year-old ballerina.

It took more than a decade for someone to diagnose her correctly, and for years people who didn't understand the disease told her she was making up her pain.

"We can't imagine cancer, either, but we've been taught about cancer, so we believe it," Toussaint says.

When she met Carol and heard her story, she was impressed by her eagerness and encouraged her to promote RSD awareness locally.

"I always get very sad when I meet someone who's a nice person going about her lovely life and this disease came along and took so much," Toussaint says.

Sometimes it really gets to Carol, too. She and John celebrated their 20th wedding anniversary last week.

"I'm thinking about what our dreams were 20 years ago," she says. "We talked about when our kids were grown, buying a motorcycle and cruising around. We can't do that."

Instead, they talk about how they might have to get Carol a motorized scooter because there might come a day when she won't be able to walk anymore.

"Hopefully," she says playfully, "by then they have purple scooters with four-wheel-drive."

Smart is still working toward getting Carol a permanent disability pension from the state. L&I pays for her medications and her doctors visits to Seattle. They still haven't taken responsibility for the spinal cord stimulators she had implanted in 2003 and 2004 to make her pain more bearable.

Last year, when she had a routine root canal, the RSD spread to her face. Now it covers her whole body except the right arm.

"A lot of people talk about how it's nice to feel a cool breeze," she says. "I used to love that, too. Now it's the last thing I want to feel."

For all Carol has lost, there is one certain gain:
Persistence.
Because when you're sick in a way that no one can see, it is easy to be brushed aside. And over the years, Carol has learned that she cannot be silent because too many people in her condition are.

So although she had been shaking with her fear of public speaking as she waited in the Yakima City Council chamber, her voice was rock steady as she graciously accepted her signed proclamation.

"RSD is curable if caught and treated early," she told the council calmly. "If left unchecked, those afflicted will endure a lifetime of burning pain, disability, depression, and the list goes on."

Those are the things that Carol will feel her whole life.

But if she and John have their way and this tiny local effort grows into a statewide awareness campaign, maybe others won't.



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Friday, March 24, 2006

Prior Lake woman started support group to help other sufferers of Reflex Sympathetic Dystrophy Syndrome cope


This Week Online, originally uploaded by rsdscrpsnews.

Prior Lake woman started support group to help other sufferers of Reflex Sympathetic Dystrophy Syndrome cope

Posted: 3/17/06

by Andrew Miller
Thisweek Newspapers

Take all the blood out of your body, replace it with lighter fluid, and light a match.

That’s the description one sufferer gave of Reflex Sympathetic Dystrophy Syndrome (RSD).

A support group started by a Prior Lake woman is helping people cope with this painful and poorly understood disease.

Bonnie Ueland-Scherer has suffered from RSD since twisting her ankle in an icy parking lot eight years ago.

Little is known about the underlying cause of RSD, which was first described during the 1860s. It can strike at any age but is most common between ages 40 and 60.

There are about 300,000 people in Minnesota diagnosed with RSD, and many more who are either undiagnosed or misdiagnosed, Ueland-Scherer said.

Symptoms usually occur near the site of an injury, and they include swelling, abnormal skin coloration, and severe pain which limits range of movement.

The rare nature of the disease meant for Ueland-Scherer a long process of trying to obtain a diagnosis. It took 17 referrals before she learned what had gone wrong with her body.

“Even after diagnosis I continued to receive conflicting comments from medical professionals,” Ueland-Scherer said.

The lack of clarity among medical professionals, and the resulting confusion she felt, prompted her to start a support group and the Minnesota RSDS/CRPS Coalition.

The intent of the support group is to provide information on and strategies for coping with RSD.

The nature of the ailment makes life difficult in a number of ways — in addition to the constant pain that precludes holding down a job, there’s also the financial burden of never-ending medical expenses.

Loneliness is often a problem, Ueland-Scherer said, owing to RSD being so widely misunderstood. And while her family has been fully supportive of her battle against RSD, the financial burden and the way it limits activity puts a strain on family life for many sufferers.

The support group meets twice monthly — from 10 a.m. to noon on the second Saturday of the month in Brooklyn Center and on the fourth Saturday of the month at the Savage Public Library.

At group sessions participants discuss topics that range from coping techniques, ways of effectively communicating with physicians, and new medical information on RSD.

“The No. 1 thing is they don’t feel so alone, and that’s something we’ve heard from every single member,” Ueland-Scherer said.

“We always have boxes of Kleenex available because it’s so powerful for them to know they’re not alone. It’s a family.”

The problems Ueland-Scherer encountered in trying to get an accurate diagnosis are not uncommon, she said. Typically, people with RSD see an average of five physicians before being accurately diagnosed.

One goal of the Minnesota RSDS/CRPS Coalition is to educate medical professionals, as well as the public, on the disease.

The group’s Web site, www.rsdsmn.citymax.com, provides RSD information and hosts discussion groups for both sufferers and family and friends of sufferers.

To learn more about the Minnesota RSDS/CRPS Coalition and RSD support groups, visit www.rsdsmn.citymax.com.

For general information on RSD, visit www.rsdsa.org and www.rsdhope.org.

Andrew Miller is at savage.thisweek@ecm-inc.com.



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Longtime animal rescuer hit by rare disease


Eyewitness News 3, originally uploaded by rsdscrpsnews.

Longtime animal rescuer hit by rare disease

BETHANY, Conn. -- Animal Control Officer Judy Rettig is known throughout the state as a dynamo when it comes to saving dogs, cats and other critters.

She once rescued a 90-pound labrador retriever that she carried down a ladder on her tiny frame and on another occasion she scurried through a pipe filled with rats and rushing water to free a trapped dog.

In September, Rettig joined the animal rescue cause in New Orleans and made the 27-hour drive back with a van full of homeless animals, just in time to start her Thanksgiving toiletry and food drive for the homeless in Greater New Haven.

But in January, Rettig was stopped in her tracks by something more menacing than any vicious dog shes ever faced.

Rettig contracted Reflex Sympathetic Dystrophy (RSD), a little-known neurological disorder that was redefined by the medical community in the 1990s as Complex Regional Pain Syndrome.

The syndrome typically develops after a sprain, fracture, other injury or surgery, most often in a limb or the spine. It is characterized by a burning pain disproportionate to the injury, discoloration in the affected area and swelling. The infected area is sensitive to the touch of something as light as a sheet or pant leg. In Rettig's case, the vibration of loud music caused so much pain she had to leave a play.

Today, Rettig can't move from the easy chair in her living room without help. A venture outside means a wheelchair ride, which Rettig admits still makes her self-conscious.

"I think someday I will walk again _ I just don't know when," Rettig said.

Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, headquartered in Milford, said while the medical community classifies the syndrome as rare, meaning fewer than 200,000 cases exist, his organization believes more than a million people in the United States have it and have not been diagnosed.

"In adults, 80 percent of people who develop this dont return to normal activities," Broatch said.

Women are affected more often than men.

There is no curative treatment; it's mainly about managing crippling pain through physical and occupational therapy, pain medication or alternative treatments such as acupuncture. Spinal chord stimulation, an invasive procedure, is sometimes an option for advanced cases. Most RSD sufferers also receive medication for depression as a matter of routine.

Rettigs RSD likely stemmed from a broken leg in January 2005, when she slid on ice at the District Animal Control shelter in Woodbridge. After the break, a plate and pins were put in her leg, and she had to have a second surgery to remove the hardware and bury a nerve.

In spring 2005, Rettig returned to work on "light duty," a phrase that hadn't been in her vocabulary. But she never healed 100 percent and went downhill as the year came to an end and the RSD progressed.

"I'm capable of ignoring pain, but this is challenging to me," said Rettig.

RSD, first identified in soldiers during the Civil War, can affect young children too, presenting the problem of adults not believing the degree of pain being expressed by the child.

In Rettig's case, the pain is so extreme even the potent pain-killer Oxycontin doesn't help. Rettig's doctor had an oversized boot made for her lower right leg, where the disease resides, so nothing will brush against it. That area of her skin is discolored and her RSD is showing signs of spreading, having moved up and into her knee. Every once in a while, her face contorts as a grabbing pain strikes her knee. Not only can it spread in the same area, but RSD also can jump from limb to limb, a fear that lingers in the back of Rettig's mind.

It's been so tough, so painful, that Rettig, the eternal optimist and sunny person, said she has thought many times before going to bed that she would not mind if she did not wake up again.

But she presses on, deriving hope from her strong faith, prayer and her loved ones. Rettig attends functions at Christ Episcopal Church, where she is a member, about four times a week. Once a week, the churchs pastors visit her at home and form a prayer circle, laying hands on her leg in an attempt to heal it.

"When medicine fails, I do believe in prayer," she said. "Most people don't know that about me, but that's where I pick up my strength."

Rettig also is able to keep going, she said, because of her dedicated soulmate, Christine Santoro, who she said has been "the wind beneath my wings" for 30 years and keeps her from falling helplessly into depression.

Rettig wants to return to work at the shelter which is being covered by two assistants.

Maybe, Rettig said, God wants her to become a voice for RSD to raise awareness and funds for research about the life-altering syndrome she didnt know existed until it hit home.

Rettig said she can never quite get her mind off all the needy people she wants to help, such as families being assisted by AIDS Project New Haven.

She also doesn't forget all the four-legged, furry animals that, she said, make a person feel like they have Christmas lights strung around the heart.

Copyright 2006 Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.



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Wednesday, March 22, 2006

Woman gets 2 years in painkiller scheme


BaltimoreSun.com, originally uploaded by rsdscrpsnews.

Woman gets 2 years in painkiller scheme

Originally published March 9, 2006

A 28-year-old Anne Arundel County woman was sentenced to more than two years in prison yesterday for her role in a scheme to obtain prescription painkillers illegally.

Elizabeth Kiss of Glen Burnie pleaded guilty last month to health care fraud for accumulating more than 40 prescriptions under false pretenses and to possession with intent to distribute OxyContin.

Federal prosecutors said Kiss visited several physicians, each time requesting pain medication for reflex sympathetic dystrophy.

With the prescriptions, she bought large amounts of OxyContin, using more than $4,000 in Maryland Medicaid funds, authorities said.

Matthew Dolan



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Sunday, March 19, 2006

Raising money to make a difference


BayNews9.com, originally uploaded by rsdscrpsnews.

Raising money to make a difference

Saturday, March 18, 2006

A Hernando County high school student who suffers from a painful condition is trying to help others who are dealing with the same kind of pain.

Bethany Frazier was out to make some money this weekend by selling things at a yard sale. However, it's money she'll put toward researching a painful condition called Complex Regional Pain Syndrome or CRPS.

"I have a real hard time walking and standing for like 15 minutes and there is like a constant fire and burning in my foot and stabbing and it's all the time," Frazier said.

Frazier said very little is known about the condition and so far there is no cure. So, she has set out to help find one. She said something needs to be done.

So far, Frazier has raised about $1,400. She said her goal is to raise $10,000 that will go toward research before she graduates from high school.

Her mother Paula Frazier said she'll do whatever it takes to help her daughter because seeing her in constant pain is breaking her heart.

"It is, because I see her at night when she's in pain and she's on like seven different medicines," Frazier said.

The seven different medicines help Frazier get through the day, but she's hoping she can help fund the development of one more that could end up being a cure.

"If I think, if I can find or even help find one cure it could change everyone else who has it," Frazier said.



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Thursday, March 16, 2006

What’s Wrong With Paula Abdul?


Reality TV Magazine, originally uploaded by rsdscrpsnews.

What’s Wrong With Paula Abdul?

March 03, 2006

After some bizarre behavior from Paula Abdul on the most recent American Idol results show, fan reaction ranged from outrage to concern to support. On the American Idol message board, many viewers posed the question of if Paula Abdul might be drunk. Others viewers were concerned for Paula, fearing that her erratic behavior might be a result of her Reflex Sympathetic Dystrophy syndrome, which she revealed in People Magazine last year. Still others found Paula’s behavior amusing and voiced their support for her.

Comments by readers of Reality TV Magazine ranged from “Please get Paula Abdul off that show, after her DISGUSTING performance tonight! The look of shock and hurt on the poor contestant's faces, male and female, as well as Ryan Seacrest look of disbelief, said it all. This show has no room for a drunk judge!!!” to “I love Paula. She and Simon were hilarious tonight. Relax, its all in good fun.”

During much of the elimination show, Paula Abdul laughed, made jokes, and played around with Simon Cowell. Many viewers felt these actions showed a lack of concern for the contestants who were facing the very serious reality of being eliminated from the show. This type of behavior is especially uncharacteristic for Paula, who usually shows more concern for the contestants than the other judges.

When Kinnik Sky and Heather Cox stood on stage awaiting word on if they were going to be eliminated, Paula responded to Ryan’s question of why those two were there by saying “Simon says because one of them ate pizza and the other one ate salad.” When Kevin Covais and Sway Penala also stood on stage facing elimination, Paula said “Simon gave me advice and he said that on the X-factor he always refers to a fortune cookie and says the moth who finds the melon..” Then after Randy corrects her, Paula continues “finds the cornflake, always finds the melon, and one of you didn’t get the right fortune cookie.”

The bizarre comments to the contestants was just one example of Paula’s unusual behavior. Paula also got out of her chair and gave a big hug to Simon Cowell at one point. Simon denied making the comments in question, so viewers are unsure of where the comments originated. Even if they were originally spoken by Simon, many viewers felt it was inappropriate for Paula to repeat them out loud to the contestants.

Regardless of the reason for the behavior, it appears to have once again encircled Paula in controversy. Paula had been making somewhat of a comeback on Idol, and many viewers had praised Paula’s improved feedback to contestants. However, this most recent incident has some viewers once again calling for Paula to be removed from the American Idol judging panel.


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