Monday, May 23, 2005

Friends rally to help a friend in need


News 10 Now Web
Originally uploaded by rsdscrpsnews.

TOP STORIES
Monday May 23 2005

Friends rally to help a friend in need
5/21/2005 4:14 PM
By: Sarah Buynovsky, News 10 Now Web Staff

A Cortland man living with an incurable disease getting a little help from his friends this weekend.

Jimmy Lawler lives each day in constant pain. At times, his leg hurts so badly he can barely breathe.

"My leg feels like a bag of hot molten broken glass all the time," says Jimmy Lawler.

The Cortland man has a progressive nerve disease that affects his left leg. The disease is called reflex sympathetic dystrophy and there is no cure.

"You can either be destroyed by something or decide to live with it and I decided to live," he explains.

The 42-year old can't work because of his condition so paying for pain medication is next to impossible. So, a group of friends has decided to help by organizing a benefit.

"Jimmy has been suffering from this disease for a very long time without many, many people knowing about it and it's time the community knows about the disease," explains Jimmy's friend Amy Buggs. She is the benefit organizer.

The fundraiser has been dubbed "Lawlerpalooza." It's a name and gesture that puts a smile on a face normally grimacing with pain.

"It's just an amazing feeling to know that there's people out there that care that much," says Jimmy. "It's hard to put into words how much it touches me."

Lawlerpalooza is being held tonight at Lucky's on Main Street from 5:00pm to Midnight.

Tickets are available at the door.

Donations can be made out to either:

Jimmy Lawler or Lawlerpalooza 2005
C/O R.D. Riese
PO Box 605
Cortland, NY 13045

Click Here for the Video on this Story

For the Original Story Online Click Here

Sunday, May 22, 2005

Cutting caffeine helps to ease some pain


Cleveland
Originally uploaded by rsdscrpsnews.

WOMEN'S HEALTH

Cutting caffeine helps to ease some pain
Saturday, May 21, 2005

Dear Dr. Tucker:

Thank you for the April 30 article on complex regional pain syndrome. I was diagnosed with it nearly 11 years ago. Fortunately, the diagnosis came quickly and correctly after my minor wrist injury.

I merely pulled my long raincoat out from under me when I was sitting down. I pulled too hard and my wrist flicked backward. I knew immediately I had done something bad because of the strange tingling sensation.

Within a week, I was seeing a neurologist and began a long journey of rehabilitation, medication and pain treatments. I am happy to say I am much better now, but I know it is not gone. I still experience the pain, tingling, burning, swelling and color changes, but infrequently and much more mildly.

I wanted to share with you some information that might help other readers who have this condition: I noticed that caffeine worsened the pain. After removing it from my diet, the pain became much more tolerable. I think it stands to reason that a stimulant could have such an effect. I have also noticed that stress has a similar effect, but that is a bit harder to remove from your life. - Susan

Dear Susan:

Thank you for your valuable insight. As health professionals, we tend to focus pri marily on medications or therapies to treat a condition, and not so much on taking sim ple but effective mea sures, such as cutting out caffeine, to pre vent the condition.


Click here for the original article.

Saturday, May 21, 2005

Overcoming the pain


Anna & Michelle Kennedy
Originally uploaded by rsdscrpsnews.

Posted May 21, 2005

Overcoming the pain

Oshkosh teen in recovery from chronic pain illness

By Krista B. Ledbetter of The Northwestern

Anna Kennedy cried almost every day of physical therapy. You’re not supposed to relearn how to walk as a sixth-grader, she said.

But physical therapy wasn’t the hardest part. Most people didn’t believe anything was wrong with her.

“Everyone thought I was lying,” Kennedy said.

She learned who her friends were, said her mother, Michelle Kennedy.

And the staff at Fox Valley Physical Therapy became her social life.

Anna Kennedy, 15, of Oshkosh broke her ankle five years ago, but a sprain of the same ankle one year later triggered a neurological syndrome called chronic regional pain syndrome that she’s still affected by now as a freshman at Oshkosh North High School.

CRPS is a chronic pain disorder involving a dysfunctional response of the nervous system that may develop from a traumatic injury or a period of immobilization.

Steven J. Weisman, medical director of the pain management program at Children's Hospital of Wisconsin, said CRPS develops in both children and adults and tends to occur in one of the extremities.

“In kids it’s most common in the lower extremities probably because those areas get injured more, said Weisman, who treated Anna Kennedy.

€œThe hallmarks are that you might have an injury, such as an ankle sprain, and when you’re healing up from the original injury your pain gets worse and changes in quality.”

In Anna Kennedy's case, her right ankle up to almost her knee became engulfed in what she described as a burning pain.

The slightest touch, even the faint rub of a Q-tip, seared, she said. She endured the pain, which left her on crutches, for a year and a half before entering remission three years ago.

But Michelle Kennedy said the battle to reach a diagnosis, an understanding and a treatment, nearly matched the battle to reach remission.

Her daughter suffered unbearable pain following the sprain, and as the two watched the affected ankle turn from purple to bright pink to ash within minutes one day, Michelle Kennedy became a “mom on a mission” to discover what was happening.

Anna Kennedy'€™s doctor told them it looked like reflex sympathetic dystrophy, another name for CRPS, but it would take a neurologist to determine this diagnosis for sure.

“I was scared to death. I read about (CRPS) online, and I thought my daughter would be dead from pain and all the medication it required, Michelle Kennedy said.

It took weeks to deal with doctors and finally see professionals at Children'€™s Hospital, and in the meantime, people in Anna Kennedy'€™s elementary school began thinking she faked the pain and teachers often took her crutches away.

Her grades plummeted from A'™s to C'€™s, and in time she became depressed. She took any over-the-counter medicine she could to lessen the pain so she could sleep at night.

Once a neurologist at Children'€™s Hospital confirmed her diagnosis, Anna Kennedy began physical therapy to retrain her muscles, and essentially relearn to walk.

The months of immobilization began to atrophy the muscles in her leg.

€œIf the illness is not treated, the person will lose function of the extremity, Weisman said.

I teach people different cognitive behavioral management techniques, like breathing, meditation, self-hypnosis, all of which work together to get the mind off of the pain and to get the brain to perceive the pain as less intense.

According to the Reflex Sympathetic Dystrophy Syndrome Association, people between ages 25 and 55 most commonly suffer from CRPS and it is more frequently seen in women.

There is no cure for the physical disease, but advances in research have found more effective treatments, such as medications, nerve blocks, physical therapy and psychological support.

I think CRPS is more common than we would normally guess,€ Weisman said of the disease, which affects as many as six million Americans.

€œIt'€™s one of the most common diagnoses in the pain center.

Anna Kennedy has suffered little-to-no flare-ups of the pain, she said.

In eighth-grade she played on the basketball team and last fall, she wore high heels to a formal dance€” both things she thought she might never do.

Anna Kennedy will pass another milestone this year when she turns 16 years old and gets her driver's license.

€œMy anger turned to tears of joy and relief, said Michelle Kennedy, who has since started a Web site for family and friends of people with CRPS.

€œBut I feel such sorrow for other people going through this.€

About 200 members have joined the support group on the Web site, she said.

Orange bracelets also are being sold to promote awareness and to benefit RSDSA.

œPeople don'€™t understand the pain, the sleepless nights, the worry; but we got through this,€ Michelle Kennedy said.

€œI keep saying €˜we,€™ but really, Anna got through this.

Krista B. Ledbetter: (920) 426-6656 or kledbetter@thenorthwestern.com.


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Free support group to meet in Pasadena


Pasadena Star News
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Free support group to meet in Pasadena

PASADENA -- A free support group for people affected by reflex sympathetic dystrophy/chronic regional pain syndrome meets at the Pike Center in Pasadena from 4 to 5:30 p.m. on the third Saturday of every month.

The Pike Center is at 160 N. El Molino Ave., behind the front house. For more information, call (626) 791-1764.

-- From staff reports

Thursday, May 19, 2005

Health calendar


Gazette.Net
Originally uploaded by rsdscrpsnews.

May 19, 2005

Upcoming events

Patients with reflex sympathetic dystrophy (RSD) will meet in Southern Maryland Hospital Center's Solarium (first floor) from 7 p.m. to 9 p.m. May 26 to discuss experiences with RSD, as well a how to deal with pain. The event is free. Call the hospital's community relations line at 301-877-5700.

For original story online click here.

Tuesday, May 17, 2005

Advances in Medicine: Abdul puts obscure pain syndrome in the spotlight


News-Leader.com (Abdul)
Originally uploaded by rsdscrpsnews.

Advances in Medicine: Abdul puts obscure pain syndrome in the spotlight

It can take months or years to diagnose complex regional pain syndrome; early treatment is key.

By Elizabeth Weise
Gannett News Service

"American Idol" judge Paula Abdul has come forward to say she has been battling an obscure, difficult-to-diagnose pain syndrome for the past 25 years. The publicity has raised hopes that the condition, called complex regional pain syndrome, may finally get the medical recognition it deserves.

Abdul, the focus of controversy this season because of allegations of an inappropriate relationship with former contestant Corey Clark, made the announcement last month. She said her occasionally hyper-animated behavior on the show was caused by her joy at finally being pain-free.

But no matter the questions surrounding Abdul, the condition is very real.

First described by a doctor treating soldiers with cannonball injuries in the Civil War, the syndrome has gone by many names over the past 150 years: Causalgia in soldiers, reflex sympathetic dystrophy syndrome in civilians, and today, complex regional pain syndrome (CRPS) types I and II.

CRPS happens when an injury to a nerve, often on the hands, feet or legs, causes the nervous system to begin behaving erratically. It frequently spreads from a single injured digit to the entire arm or leg or throughout the body.

The sympathetic nervous system — the fight-or-flight nerves — is "trying to heal itself and it gets confused," says Pamela Palmer, who directs the pain management center at the University of California-San Francisco. "It starts sending out chemicals that hyperactivate the regular nervous system."

Symptoms typically show up about a month after the initial injury. Instead of getting better and being in less pain, the patient feels more pain.

For many patients, it takes months, if not years, to get an accurate diagnosis. During that time, they're frequently told that "it's all in your head," says Tom Looker of Winchester, Va. A former immigration agent, he fell down an embankment 20 years ago and has been in pain ever since.

The syndrome's hallmark is agonizing, burning pain. In the worst cases it can attack the bone, skin and muscle, leaving patients with useless, withered and extremely painful limbs.

For reasons that are unclear, the syndrome affects women twice as often as it does men, says Joshua Prager of the Center for Rehabilitation of Pain Syndromes at UCLA.

Doctors don't yet know why it happens, and they don't know why it happens to some people and not others. What they do know is that early and aggressive treatment — within the first three months — is the key to stopping it.

Treatments include anesthesia injections to block the sympathetic nervous system and, in extreme cases, insertion of a catheter so continuous doses of anesthesia can be administered. For some patients, electrical stimulators are implanted in their spines to block the pain.

But the end goal is not pain relief but to get patients comfortable so they can start moving again.

"The core of treating these patients is 'use it or lose it,'" says James Rathmell, a professor of anesthesiology at the University of Vermont. "You need to use the limb no matter how painful” because otherwise you'll lose function."

For the original story online click here.

Abdul brings spotlight to pain syndrome


Asbury Park Press
Originally uploaded by rsdscrpsnews.

Abdul brings spotlight to pain syndrome

Published in the Asbury Park Press

05/17/05

BY ELIZABETH WEISE - USA TODAY

"American Idol' judge Paula Abdul has come forward to say she has been battling an obscure, difficult-to-diagnose pain syndrome for the past 25 years. That publicity has raised hopes that the condition, called complex regional pain syndrome, may finally get the medical recognition it deserves.

Abdul said her occasionally hyper-animated behavior on the show was caused by her joy at finally being pain-free.

First described by a doctor treating soldiers with cannonball injuries in the Civil War, the syndrome has gone by many names over the past 150 years: Causalgia in soldiers, reflex sympathetic dystrophy syndrome in civilians and, today, complex regional pain syndrome (CRPS) types I and II.

CRPS happens when an injury to a nerve, often on the hands, feet or legs, causes the nervous system to begin behaving erratically. It frequently spreads from a single injured digit to the entire arm, leg or throughout the body.

The sympathetic nervous system — the fight-or-flight nerves — is "trying to heal itself and it gets confused," says Pamela Palmer, who directs the pain management center at the University of California-San Francisco. "It starts sending out chemicals that hyperactivate the regular nervous system."

Symptoms typically show up about a month after the initial injury. Instead of getting better and being in less pain, the patient feels more pain.

For many patients, it takes months, if not years, to get an accurate diagnosis. During that time, they're frequently told that "it's all in your head," says Tom Looker of Winchester, Va. A former immigration agent, he fell down an embankment 20 years ago and has been in pain ever since.

The syndrome's hallmark is agonizing, burning pain. In the worst cases it can attack the bone, skin and muscle, leaving patients with useless, withered and extremely painful limbs.

For reasons that are unclear, the syndrome affects women twice as often as it does men, says Joshua Prager of the Center for Rehabilitation of Pain Syndromes at UCLA.

Doctors don't yet know why it happens, and they don't know why it happens to some people and not others. What they do know is that early and aggressive treatment — within the first three months — is the key to stopping it.

Treatments include anesthesia injections to block the sympathetic nervous system and, in extreme cases, insertion of a catheter so continuous doses of anesthesia can be administered. For some patients, electrical stimulators are implanted in their spines to block the pain.

But the end goal is not pain relief but to get patients comfortable so they can start moving again.

"The core of treating these patients is "Use it or lose it,' " says James Rathmell, a professor of anesthesiology at the University of Vermont. "You need to use the limb — no matter how painful — because otherwise you'll lose function."

Click here for the original story online.

Monday, May 16, 2005

PAIN: Fear of opioid abuse can lead to undertreating pain


MedicalPost.com
Originally uploaded by rsdscrpsnews.

Dilemma can cause 'opiophobia' in MDs, but don't miss window to prevent chronic pain

By Susannah Benady

MONTREAL – The treatment of pain has improved in the past decade and patients' pain, be it acute or chronic, is now taken more seriously than it ever was, say specialists.

But improvement in the treatment of pain is hampered, both by a lack of resources to build multi-disciplinary teams and by the fact that for many physicians, prescribing opioids—by some measures the most effective treatment with the fewest side-effects—is a medical no-go area.

The fear that patients might either abuse the drugs themselves or that the medications might end up on the black market are possibilities that physicians have to confront, or risk depriving patients of treatment they should receive.

Multidisciplinary approach

There is no question that the multidisciplinary approach to the treatment of pain is the ideal, said Dr. Gilbert Blaise, professor of anesthesiology at the Université de Montréal, who runs pain clinics at both the McGill University Health Centre and the Centre Hospitalier de l'Université de Montréal.

"Pain is a complex condition, frequently not well-understood by physicians, and has many dimensions to it.

"We are beginning to understand the neuroscience behind it, but its complexity requires input from physio- and occupational therapists and psychologists, as well as from physicians."

According to a 2001 Canadian survey, 29% of the adult population experiences chronic pain, lasting more than six months, from conditions such as spinal pain, low back pain, fibromyalgia, postoperative pain and complex regional pain syndrome.

"As patients age, the more pain they get. Spinal pain, for example, will eventually affect 100% of patients," said Dr. Blaise, who has set up a patient pain association in Montreal called ABC Douleur.

But even among children, at least 20% experience long-term pain, noted anesthesiologist Dr. Allen Finley, who treats children and adolescents at the IWK Health Centre in Halifax.

Problem of major proportions

Specialists who work in the field agree that pain, particularly chronic pain, constitutes an unsolved health problem of major proportions that undermines quality of life and imposes an enormous financial burden on society.

Four years ago the Canadian Pain Society launched a "patients' charter" informing the public that they were entitled to expect and receive appropriate pain killing medications and have their pain treated in a timely manner.

"Not treating pain adequately not only slows recovery, but if left untreated can become chronic, at which point it is no longer simply a symptom of disease but becomes a medical problem in its own right," said Dr. Roman Jovey, incoming president of the Canadian Pain Society.

"The trouble is that waiting lists for pain clinics are at least one year and there is a window of opportunity of two to three months for injured patients (for the best chance) to prevent them developing chronic pain."

But in addition to the lack of resources problem that dogs all chronic conditions in Canada, is the public relations minefield that physicians enter, whether they like it or not, as soon as they consider prescribing opioids.

The prospect is so nerve-wracking that it has led to its own pathology, dubbed "opiophobia."

'Worst way to administer'

"It is because of institutional opiophobia that doctors and nurses are trained to give the lowest dose of opioid for the longest time interval—just about the worst way to administer it," said Dr. Jovey a GP whose practice is now 60% to 70% pain management and 30% to 40% addiction medicine.

"A common fallacy is that you should 'only take it when you absolutely have to because it is addictive.'

"This results in a situation where people under-dose themselves because they are scared, or have to take too much to deal with the acute pain.

"There is a rule of thumb in pain management that it takes less medication to prevent the return of pain than it takes to treat it once it is out of control."

The principles of trying to minimize the addictive potential of opioids are first to use long-acting opioids, and second to keep to a strict time schedule, he advises.

"The amount of opioids you take today should not necessarily depend on how much pain you are experiencing today. This helps avoid the psychological mindset that can occur if you only take the painkiller when you have pain.

"If a person waits for the pain to become severe they will overshoot the amount ideally required, leading to excessive side-effects. This is then followed by a 'trough' effect on blood levels, leading to a yo-yo cycle that can exacerbate the risk of addiction in a susceptible person."

It can even lead to an iatrogenic condition known as "pseudo-addiction," which can be misinterpreted by the physician as drug-seeking behaviour but is in fact caused by under-treatment of pain that resolves when the appropriate level of pain relief is provided.

Click here for the original story online.

Friday, May 13, 2005

The pinnacle of pain


The Craig Daily Press
Originally uploaded by rsdscrpsnews.

The pinnacle of pain

By David Pressgrove, Sports Writer

Friday, May 13, 2005

Zach Haddan can walk.

Generally that's not a profound statement about an athlete competing at the regional track meet in Grand Junction today. But less than a year ago, the Moffat County High School junior didn't know whether he would ever live up to that statement again.

Actually, a year ago, he didn't know much of anything that was going on around him.

"I was so drugged up, I'd be out for a week at a time," he said. "I was out of my mind on pain killers and brain-numbing medication."

May and June of 2004 was the bottom of the bottom for Haddan, who spent 19 months attempting to recover from what was initially a broken ankle suffered his freshman year in basketball practice.

That broken ankle didn't heal like it was supposed to because of a syndrome that Haddan was diagnosed with two months after his injury.

Doctors told him he had Reflex Sympathetic Dystrophy Syndrome (RSD or RSDS), also known as Complex Regional Pain Syndrome (CRPS). RSD is a chronic neurological syndrome in which the nerves around the injury send messages to the brain that postpones healing and causes extreme amounts of pain.

Eighteen surgeries, several perplexed physicians and hundreds, if not thousands, of painkillers later, Haddan underwent a procedure that cured him in July of 2004.

"I'm just happy I can walk," he said, followed by a sigh of relief.

Zach Haddan can walk.

It sounds more profound now.

JUST 4-6 WEEKS

Haddan remembers the date without hesitation.

"January 15, 2003," he said.

That was when he landed wrong on his right leg in a scrimmage of the freshman boys basketball team against the girls varsity team. He broke the ankle all the way through the growth plate.

"They don't do that any more," he said about the scrimmage.

He was told it would take four to six weeks for his ankle to heal.

After eight weeks, there were no signs of healing.

Soon his foot started to turn purple, he started experiencing a burning sensation.

He went to a pain-management specialist and was diagnosed with RSD.

The normal feeling in his leg was gone, and it was replaced with pain. He missed all of the fourth quarter of school his freshman year because of the pain and the treatments he was undergoing.

Once a week, he would travel to Steamboat Springs for surgery. Doctors would stick 16-inch needles in his back to deaden the nerves to his leg. Then they would stimulate the leg to try to get it to respond again.

He underwent that procedure seven times in the spring and early summer of 2003.

"It was like I was paralyzed," he said. "I knew my leg was there, but I couldn't do anything with it."

The surgeries, along with two hours of rehabilitation a day eventually brought feeling back to his leg during the summer.

Haddan played golf in the fall and basketball in the winter. But toward the end of the basketball season, his ankle started to bother him again.

The ankle still hadn't fully healed and he needed reconstructive surgery.

Doctors prefaced the surgery by assuring the RSD wouldn't be back.

"They said there was a one-in-one-billion chance it would come back," he said.

If Haddan were 18, he should have bought a lottery ticket.

Within 24 hours of the surgery, the RSD had returned.

His pain-management specialist was perplexed.

"He was at a loss," Haddan said.

To make things worse, physicians had to wait for the scars from the surgery to heal before any rehabilitation could start.

‘DOUBLE, TRIPLE,

FOUR TIMES KILLER'

Not only had the RSD come back, but the pain also had intensified.

"It just kept getting worse," Haddan said. "I thought the first time was bad, but this time, it was double, triple four times killer."

To put the pain of RSD sufferers in perspective, the Web site www.rsdhope.org cites the McGill Pain Index register. The pain of childbirth registers at a 33, and having a digit amputated is a 39. RSD registers at a 41.

"I felt like I had my foot in a stove constantly," he said. "My leg was so hypersensitive that when my mom would open the door the wind from it would kill my leg."

That kind of pain was why Haddan was "out of my mind on pain killers." He was prescribed Vicodin and another medication used to numb the brain and keep it from communicating with the leg.

"There were weeks on end that I didn't know what was going on," he said.

After his ankle was healed enough, he continued to go to Steamboat for the weekly treatments, but things weren't getting better. His treatments and constant pain caused him to miss all of the fourth quarter of school again.

In the spring of 2004, the Haddans started to seek out other doctors who might help.

"After about the fifth doctor said I wouldn't walk again, I started to worry," Haddan said. "I was scared to death I'd be in bed forever."

WATCHING HIM SUFFER

Throughout the ordeal, Haddan's family -- his dad, John; mom, Vicki; and brothers, J.T. and Colby -- were there for Zach. And, just like for Zach, their hardest time was in May and June of 2004.

"We were the ones who had to watch him drool and stutter," Vicki said. "Once they explained to me that his pain was worse than childbirth, I couldn't comprehend. I only had to go through that for three hours, and he was constantly in worse pain."

There wasn't much they could do but encourage and keep searching for a way to stop the pain.

"There were times when he wanted to give up, but they were short," Vicki said. "He kept fighting."

While Zach got temporary relief when he passed out, the family always was there waiting and watching.

"We took turns being strong," his mom said. "When things seemed bleak for me, John would be there."

Vicki said that the school district (she and John work in the district) and the church the family attends were important to helping the family.

"They were so supportive," she said. "Members of the church would come and pray with us ... the school district collected money to help, and we were allowed to be flexible in our schedules."

Jeff Pleasant, a physical therapist at Rehabilitation Services of Craig, oversaw Zach's rehabilitation during the entire process.

He said there were times when he could barely handle seeing Haddan suffer.

"It became very personal," he said. "It hurt to watch him. When he put his foot on the floor, it was like he was stepping on a bed on needles."

Haddan's file is thicker than the entire letter sections in Pleasant's files.

"The thing reads like a dictionary," Pleasant said.

THE CURE

After trying seemingly every doctor in the region, the Haddans found Dr. Doru Ion-Emil Georgescu, a surgeon in Denver. Georgescu informed them that a last-resort procedure might help Zach. But he cautioned them that it also could permanently paralyze Zach because the surgery involved making cuts along the spinal cord.

"If he made a mistake by millimeters, he said I would lose the use of my legs," Zach said. "It wasn't a concern to me at the time because I couldn't feel one of my legs anyway."

His family considered the consequences in more detail.

"I originally didn't want to because it was the odds were 50/50 ," Vicki said. "But John said, ‘if the door is there, we have to walk through it.'"

In the second week of July 2004, Dr. Georgescu performed a lumbar sympathectomy, in which he went in through the stomach and cut the sympathetic nerves that go to Zach's legs.

"It was a high-risk, high-payoff surgery," Zach said. "But I woke up four hours later, and my foot was fine."

‘USE YOUR MIND'

After the surgery was over, Haddan started rehabilitation again.

"I had no calf muscle," he said. "I wanted to get back to sports."

He told basketball coach Mike LeWarne that he would be back for his junior year.

Dr. Georgescu didn't think it would be a good idea.

"(Georgescu) kept saying ‘Use your mind,'" Vicki said. "He didn't want Zach to play sports, but once Zach walked, I could see there would be no holding back."

Dr. Georgescu was cautious because the procedure he performed was a last-resort. With the nerves cut, there would be no chance for Zach to heal ever again.

"He made a huge life decision for somebody so young," Pleasant said. "He knows that one little thing could keep him from walking the rest of his life. It's something he'll battle forever."

Still, Pleasant was there for Zach's first running steps.

"The happiest day was when he was back on the treadmill for the first time," Pleasant said. "The entire clinic stopped."

Vicki, Zach's track coach, has her heart stop every time Zach jumps.

"As a coach, you want to push kids hard, but it's hard for me to do that for him," she said. "Most parents and coaches usually enjoy watching. But I constantly worry about him."

Zach isn't devoid of worries either.

"It's always there," he said. "Every time I do something active, whenever I stop, I think ‘whew, I didn't break anything.'"

Fears don't stop him though.

"I love sports, and I can't see myself not playing," he said. "I was off-the-wall happy once I could play again. Maybe the happiest person ever."

He golfed in the fall, started on varsity in basketball and is a field-event specialist in track. He is also two weeks from finishing his first fourth quarter of school in three years.

"I was only about 70 to 80 percent in basketball, but I was playing," he said. "I didn't have extremely high expectations, but I wanted to do better."

There have been three scares during this school year.

During the second week of basketball, he went down in a game against Summit.

"I'd never seen him go down because it was always in practice before," Vicki said.

Pleasant received a call he hoped he never would.

"Coach LeWarne called and just said, Zach,'" he said. "We shared some tears during that visit."

Haddan had some discoloration but he recovered after two weeks. He had one more injury in basketball and in track. Each time, the recovery has been faster.

"There's no way of telling, but I just hope that trend continues," Pleasant said.

Financially, the whole process has drained the Haddans because so many of the procedures were experimental.

"It will take a long time to catch up," Vicki said. "We had to use the money we had saved for Zach's college, but that's OK, it was there for him."

When Vicki is asked about how they found Dr. Georgescu and about Zach's recovery, she can find only one way to explain.

"It was the grace of God," she said. "There's no other reason."

The family didn't keep any photos from the two years.

"I don't want to remember," Zach said. "I'm just glad it's over, and I don't want to mope about it. It was terrible"

Zach Haddan can walk ... and run and jump.

That's about all he wants to think about now.

David Pressgrove can be reached at 824-7031 or dpressgrove@craigdailypress.com.

For the original story online Click Here.

Thursday, May 12, 2005

Glendale, California Proclaims May as Reflex Sympathetic Dystrophy Month


California State Flag
Originally uploaded by rsdscrpsnews.

Glendale, California Proclaims May as Reflex Sympathetic Dystrophy Awareness Month

May is Reflex Sympathetic Dystrophy Awareness Month in California.

Please note that May is Reflex Sympathetic Dystrophy Awareness Month in California. Dana Wilson, RSD survivor for five years and Co-Facilitator of the only Los Angeles County RSD support group, will be accepting a proclamation at the Glendale City Council meeting on May 24, 2005.

Other cities we have recently had proclaimed in California are Del Mar, Burbank, Sunland-Tujunga, and Los Angeles. We're going to keep going until we have all the cities in California and grow the circle of awareness.

Pain can linger long after a broken bone heals


logo_swoosh
Originally uploaded by rsdscrpsnews.

Ask the Doctor

Pain can linger long after a broken bone heals

BY PAUL G. DONOHUE, M.D.
May 12, 2005


DEAR DR. DONOHUE: I fractured my wrist in 2003, and I still have pain to this day. The problem is said to be reflex sympathetic dystrophy. I have never heard of it, and I am told there is nothing to be done for it. Now my fingers do not bend. Can something be done for this? -- B.H.


ANSWER: Reflex sympathetic dystrophy is now called complex regional pain syndrome. It happens after an injury, sometimes one as insignificant as a minor sprain.

The sequence of events goes something like this. Even though the injury heals, the injured site becomes swollen and develops burning, throbbing or aching pain weeks to three months after the injury originally occurred. The skin is warm and tender to the touch.

In another three months, the skin cools, but pain remains.

After three more months pass, the skin and tissues in the injured area shrink, and the adjacent joints can become stiff.

The situation is not without treatment. Pain medicines can generally control that aspect of this condition. Capsaicin cream or a lidocaine skin patch applied to the involved site can ease discomfort. Nerve blocks are another approach to pain control. In resistant cases, a device called a spinal-cord stimulator delivers a mild electric current to the spinal cord and blocks the transmission of painful signals to the brain.

Most important is physical therapy. You need a supervised program to improve the flexibility of your wrist, hand and fingers. A physical therapist can devise such a program for you, and you should see about one quickly.

You might also want to visit the Reflex Sympathetic Dystrophy Syndrome Association's Web site, at www.rsds.org. It has a good deal of useful information.

ABC News Pain Quiz


ABC News
Originally uploaded by rsdscrpsnews.

Click Here to take the Quiz Currently running on ABC's website.

ABC News Pain Series


ABC News
Originally uploaded by rsdscrpsnews.

Several Articles Currently running on ABC's Website to coincide with their series on Chronic Pain.

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Click Here

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Chronic Pain Series in USA Today


USA Today
Originally uploaded by rsdscrpsnews.

This is a link to the main page for information on the series of reports USA Today is doing currently about Chronic Pain.

Click Here

Pain Management Resources for Nurses


Health Sciences Library
Originally uploaded by rsdscrpsnews.

To coincide with Nurses Week (May 9th to May 13th) the Health Sciences Library is featuring a section of Internet resources devoted to pain management, both for professionals and patients. These sites are useful, user-friendly, and many contain links to other resources.

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Click Here for more info

Wednesday, May 11, 2005

Abdul puts syndrome in spotlight


USA Today
Originally uploaded by rsdscrpsnews.

Abdul puts syndrome in spotlight
By Elizabeth Weise, USA TODAY
American Idol judge Paula Abdul has come forward to say she has been battling an obscure, difficult-to-diagnose pain syndrome for the past 25 years. That publicity has raised hopes that the condition, called complex regional pain syndrome, may finally get the medical recognition it deserves.

Abdul, the focus of controversy this season because of allegations of an inappropriate relationship with former contestant Corey Clark, made the announcement last month. She said her occasionally hyper-animated behavior on the show was caused by her joy at finally being pain-free.

But no matter the questions surrounding Abdul, the condition is very real.

First described by a doctor treating soldiers with cannonball injuries in the Civil War, the syndrome has gone by many names over the past 150 years: Causalgia in soldiers, reflex sympathetic dystrophy syndrome in civilians, and today, complex regional pain syndrome (CRPS) types I and II.

CRPS happens when an injury to a nerve, often on the hands, feet or legs, causes the nervous system to begin behaving erratically. It frequently spreads from a single injured digit to the entire arm, leg or throughout the body.

The sympathetic nervous system — the fight-or-flight nerves — is "trying to heal itself and it gets confused," says Pamela Palmer, who directs the pain management center at the University of California-San Francisco. "It starts sending out chemicals that hyperactivate the regular nervous system."

Symptoms typically show up about a month after the initial injury. Instead of getting better and being in less pain, the patient feels more pain.

For many patients, it takes months, if not years, to get an accurate diagnosis. During that time, they're frequently told that "it's all in your head," says Tom Looker of Winchester, Va. A former immigration agent, he fell down an embankment 20 years ago and has been in pain ever since.

The syndrome's hallmark is agonizing, burning pain. In the worst cases it can attack the bone, skin and muscle, leaving patients with useless, withered and extremely painful limbs.

For reasons that are unclear, the syndrome affects women twice as often as it does men, says Joshua Prager of the Center for Rehabilitation of Pain Syndromes at UCLA.

Doctors don't yet know why it happens, and they don't know why it happens to some people and not others. What they do know is that early and aggressive treatment — within the first three months — is the key to stopping it.

Treatments include anesthesia injections to block the sympathetic nervous system and, in extreme cases, insertion of a catheter so continuous doses of anesthesia can be administered. For some patients, electrical stimulators are implanted in their spines to block the pain.

But the end goal is not pain relief but to get patients comfortable so they can start moving again.

"The core of treating these patients is 'Use it or lose it,' " says James Rathmell, a professor of anesthesiology at the University of Vermont. "You need to use the limb — no matter how painful — because otherwise you'll lose function."

Original Story Appeared on the Web Here

Tuesday, May 10, 2005

Can Anxious Moms Influence Kids' Pain?


ABC News
Originally uploaded by rsdscrpsnews.

ABC News Original Report

Can Anxious Moms Influence Kid's Pain?

Pain Specialist Says Kid's Chronic Pain is Real and Looks for New Ways To Treat It.

May 10, 2005 — Twelve-year-old Jenna Gale was always on the go — skateboarding, bike riding and playing with her fraternal twin sister, Caila. But one day, Jenna was mysteriously wracked with pain.

Caila remembers her sister's pain. "She'd be like, 'Ow! My knee hurts! When the air touches it, it really hurts.' And I'd just be like, 'Are you exaggerating, Jenna?'"

But Jenna wasn't exaggerating. She could barely stand — she used crutches and then a wheelchair — and missed school for months.

And the pain spread. "First it was in my knee, then it was it my shoulder and then it went to my head," Jenna said.

Children's Pain Poorly Understood

When it comes to chronic pain, the issues and questions are different for children. Because children may have a harder time communicating, determining the cause of a child's pain can be difficult for doctors.

Dr. Lonnie Zeltzer founded the Pediatric Pain Program at UCLA's Mattel Children's Hospital where Jenna and hundreds of other young patients are being tested for reactions to pain as part of a federally funded study.

Zeltzer's researchers are finding that, after the age of 13, tolerance for pain tends to increase for boys, while it decreases for girls. They believe this difference may be because boys' and girls' brains are wired differently.

The study also concludes that a mother's anxiety about her own pain and her child's pain may contribute to an adolescent girl developing chronic pain. But the researchers say that is less likely to happen with mothers and their adolescent sons.

Do Anxious Moms Contribute to Pain?

Jenna's diagnosis was "complex regional pain syndrome." But what triggered it is still a mystery.

Jenna Gale's mother, Debra, is recovering from 10 years of chronic fatigue syndrome and wonders whether Jenna's long exposure to her mom's condition could have played a role in the development of her chronic pain.

Zeltzer has seen the phenomenon before. Kellee Meyers, the mother of another of her young patients, admits she's anxious about her own pain from numerous surgeries and worries that her daughter, Haley, will develop the same "cycle of pain."

Haley, 7, is already being treated by Zeltzer for sleep problems.

While chronic pain in kids is mysterious, Zeltzer says it is real and it's treatable.

"In children, the body, the nervous system is still developing, so there's a lot of room for change and flexibility," she said.

Treating pain, she says, may involve several different types of therapies, including psychiatric treatment, hypnosis, acupuncture, yoga, craniosacral massage and other relaxation techniques.

Sometimes, Zeltzer and her team use art therapy to gauge a quiet child's pain, or she will use a technique called "energy work," which senses the body's energy.

Jenna has had energy work done, and while she admits it might be a little odd, "it really works."

Her mother is willing to do whatever it takes to help alleviate her daughter's pain. "I always said if I had to wave a dead chicken and do incantations, I would do it, if that's what was gonna get Jenna out of pain," she said.

And Zeltzer's combination therapies seem to be working. After two years of therapy, Jenna is getting better and out playing with her sister again.

"I have to keep working at it but I'm pretty much, like, it's getting a lot better and I don't have that much pain anymore," Jenna said.

Original Story On The Web (Click Here)

Monday, May 09, 2005

Complex Regional Pain Syndrome (CRPS) Affects More Than Twice as Many Women as Men


Medical News Today
Originally uploaded by rsdscrpsnews.

Complex Regional Pain Syndrome (CRPS) Affects More Than Twice as Many Women as Men

09 May 2005

Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy Syndrome (RSD), is a complex and poorly understood neurological syndrome characterized by severe pain. CRPS/RSD affects from 2.3 to 3 times more women than men and is a major cause of disability -- only one in five patients is able fully to resume prior activities. Equally frightening is the increasing diagnosis of CRPS/RSD in children and adolescents.

CRPS/RSD is a common complication after surgery or a minor injury, but the resulting pain is disproportionate. A recent web-based epidemiological survey of 1,610 people with CRPS, sponsored by the Reflex Sympathetic Dystrophy Association of America (RSDSA) and conducted by Johns Hopkins University, showed that common events leading to the syndrome were surgery (29.9%) fracture (15%), sprain (11%) and crush injuries (10%).

Telltale signs and symptoms of CRPS/RSD include: moderate-to-severe pain, often caused by stimuli that would not normally provoke pain (the water in a shower, light breezes, the touch of clothing, etc.); abnormal skin color or temperature changes; and sweating. The continuing tragedy is that many physicians are not familiar with its telltale symptoms and do not consider the diagnosis in their examination. Experience has shown that early diagnosis promotes more successful outcomes for people with the syndrome.

Linda Lang, co-author of Living With RSDS, suffered for many years before her syndrome was appropriately diagnosed. Although people with CRPS/RSD often talk about pain, "There is an awful lot we leave out -- how a productive member of society can become too disabled to work or to take care of her children. We don't discuss the tremendous personal losses-families, friends, jobs-that CRPS/RSD wreaks, nor do we discuss the outrageously difficult time we have negotiating the red tape that binds insurance, medical, and social security benefits. Evaluating pain is subjective, but the losses are measurable, and often, substantial."

The RSDSA suggests that anyone who thinks that they or a family member might have CRPS/RSD visit http://www.rsds.org or contact the association call toll-free (877)662-7737 for an information packet.

RSDSA is a national not-for-profit organization, headquartered in Milford, Connecticut, that promotes greater public and professional awareness of CRPS/RSD and educates those afflicted with the syndrome, their families, friends, insurance and healthcare providers on the disabling pain it causes.

Reflex Sympathetic Dystrophy Association of America
http://www.rsds.org

Sunday, May 08, 2005

Banding Together To Fight Disease


Whittier Daily News
Originally uploaded by rsdscrpsnews.

Banding together to fight disease

Group sheds light on rare ailment

By Kimm Groshong Staff Writer

PASADENA -- It's been four years since Dana Gambill accidentally struck her right ankle on the metal seat track of her car.

What at first seemed like a smarting sprain, a fluke incident, led to years of excruciating pain, a months-long search for a diagnosis, loss of Gambill's lifestyle and, most recently, a new sense of purpose.

Today, Gambill is coordinator of the National Awareness Campaign for the disease that took over her life, a chronic pain disease called reflex sympathetic dystrophy, or RSD. She also heads up the only RSD support group in Los Angeles, which meets once a month in Pasadena.

Gambill says her work with RSD advocacy "helps me get out of my pain... for any of us, being of service helps us get out of ourselves."

Pop star Paula Abdul has recently begun discussing her 25-year experience with RSD. Now, other patients and pain management doctors hope the celebrity's activities will shed some light on the still largely unheard of disease.

Despite the relative obscurity of the debilitating nervous system disease, the Reflex Sympathetic Dystrophy Syndrome Association estimates between 1.5 and 6 million Americans currently live with RSD's pain.

Edward Carden, director of Southern California Academic Pain Management in Santa Monica, said he sees three or four new RSD patients a week. The reason more physicians don't know about the disease is "medical schools never taught the disease," he said. "The simplest thing for them to do is for the physician to say the patient is crazy and send them to a psychiatrist."

RSD, also known as complex regional pain syndrome (CRPS), type 1, normally sets in following an injury or surgery. It often goes undiagnosed or misdiagnosed for months or years. Symptoms vary from patient to patient, but it is characterized by pain out of proportion with the injury that triggered it.

The bodies of RSD sufferers are basically continuously responding to pain signals, which become imprinted in the nervous system over time. "You learn how to feel a pain the more you feel it," said Joshua Prager, director of the California Pain Medicine Centers at UCLA and an RSD specialist. "The more chronic it is, the more autonomous and spontaneous it becomes. It almost takes on a life of its own."

RSD patients describe the continual pain of the disease as a deep ache and cold or hot burning in the injured area. The skin there often becomes extremely sensitive to touch, discolored and puffy.

Within weeks of Gambill's injury, she had many classic symptoms of the disease but lacked the doctors to properly diagnose RSD. Some of the physicians she saw diagnosed fracture, others tendinitis, prescribing Advil and Aleve, which did little for the pain.

"I was in so much pain, it was just unbelievable," Gambill said. "I, in my gut, knew it was something else. Something else was going on and this doctor wasn't listening to me."

For five months, she lived with the deep achiness, weakness, extreme temperature changes and bluish color in her foot before a foot and ankle specialist diagnosed her with RSD and began treating her for the debilitating disease.

Time is of the essence for RSD sufferers. There is a three- to six-month window of opportunity following onset of the disease during which treatments are much more successful than they are likely to be later, experts say.

"With early diagnosis and aggressive, multidisciplinary treatment, it can go into remission," Prager said. He said many of his patients get rehabilitated and can even return to work. "It's something that we can treat, but we cannot treat it if it is not properly diagnosed and sent to the appropriate specialists."

The treatment plan for RSD patients involves pain management, psychological treatment and rehabilitation, largely through physical therapy. Prager, whose RSD patients go through a four-week "RSD Camp," said physical therapy is the mainstay of the treatment, but "the patient has to be reasonably pain free at the time of physical therapy," and that's where medication and treatments like nerve blocks come in.

Since her diagnosis, Gambill has had about 45 nerve blocks, which were once very helpful in her fight against pain and have become less effective with time. The disease has spread to her right arm and hand and she has a spinal cord stimulator implant that helps ease that pain.

Prager said in many RSD cases, patients' brains change with the disease. Functional MRI studies have shown that an area of the brain associated with emotion, including depression and anxiety, often becomes activated in longer-term RSD patients.

Cynthia Toussaint, a former ballerina who developed RSD when she was 21 years old, now runs an organization called For Grace. She was misdiagnosed for 13 years and today uses a wheelchair and has a morphine pump implant. She and her partner, John Garrett, created For Grace named for the daughter Toussant will never have now, recognizing the need for quality information about RSD and advocacy.

Toussaint said RSD is known as "the suicide disease" because of the depression it's associated with and the fact that it has caused so many patients to take their own lives, having lost hope that the pain will ever subside.

Often adding to that depression is the fact that many RSD patients are abandoned or disowned by friends and family members who cannot cope with a loved one living with the sometimes mysterious pain RSD inflicts. Also, many patients like Toussaint are told by their doctors that the pain is all in their heads.

Gambill's National Awareness Campaign is an outgrowth of For Grace and is a messaging support and encouragement board for RSD sufferers and their family and friends. It's also a place to share ideas for awareness projects. Gambill encourages those who want to start RSD support groups like hers.

In February, 17-year-old Lucia Jimenez and her parents attended their first meeting of Gambill's support group. Lucia had been dealing with RSD pain since August when she was hit by a bicyclist and developed the burning pain, coldness, discoloration and sensitivity of RSD in her right leg.

She relied on crutches for a while but when the disease spread to her left leg, she had to begin using a wheelchair. Eventually, Lucia had to begin homeschool. Her father, Byron, had to take off work most days of the week as Lucia's pain worsened.

Her mother, Esther, said after months of doctors bouncing Lucia around, without a proper diagnosis or effective treatment, she would cry to herself in the shower, not wanting to worry her daughter and other children. Finally, one night, researching on the Internet, she found what she called a "Godsend" -- information about RSD symptoms and a notice for Gambill's support group.

The support group immediately recognized Lucia's RSD symptoms and suggested some pain specialists.

Just two months later, Lucia walked into the April support group meeting. Wearing jeans and a T-shirt, with iPod in hand, she looked as healthy as an average high school junior. A specialist had diagnosed her and given her two nerve blocks.

"As you guys can see, I'm walking," she told the group as they went around the circle sharing positive notes from the week. For the Jimenezes and the group, that was reason enough to smile.

Dana Gambill's RSD support group meets on the fourth Saturday of every month from 4 to 5:30 p.m. at the Lake Avenue Church, 393 N. Lake Ave., Room 202. For more information, call (626) 755-0105 or e-mail designforliving@earthlink.net.

For more information about RSD, For Grace or the National Awareness Campaign, see http://www.forgrace.org.

-- Kimm Groshong can be reached at (626) 578-6300, Ext. 4451, or by e-mail at kimm.groshong@sgvn.com.

Kids' distress is no small thing


USA Today
Originally uploaded by rsdscrpsnews.

Kids' Distress Is No Small Thing
By Rita Rubin, USA TODAY
Pain moved into the Gale family's Southern California home almost two years ago to the day.

On May 13, 2003, Jenna Gale, then 10, came home from school and said her knee hurt. Two days later, she couldn't stand. The next six weeks were a blur of medical tests and visits to the doctor. Jenna, a star soccer and basketball player, went to school in a wheelchair.

As Jenna, her parents and her twin sister learned, pain plays no favorites when it comes to age. And yet, as recently as the 1980s, the medical community thought only adults truly suffered from pain. Grown-ups didn't realize that, instead of crying and complaining, children often withdraw and suffer pain in silence. Even when children's pain was obvious, adults were nervous about giving powerful drugs to combat it.

As a result, children's pain, whether chronic, like Jenna's, or acute, such as that from an injury or an operation, was treated inadequately — if at all.

"There were a lot of myths floating around about pain: Kids didn't have pain, or they bounced right back from it, or they didn't remember it," says Judy Beyer, a pediatric nurse researcher at the University of Missouri-Kansas City, who more than 20 years ago developed the "Oucher" picture scale to help children convey how much pain they're feeling. "We've moved a heckuva long way in the past 25 years with pediatric pain, but we still have far to go."

Recognizing that children feel pain at least as much as adults, a small but growing number of children's hospitals have established pain-management programs. They offer a range of treatments, including psychotherapy and physical therapy as well as alternative treatments such as acupuncture. Patients are relieved to find health care providers who believe their pain is real, even though medical tests have been unable to detect its cause.

"We're almost like the last ray of hope," says anesthesiologist Kenneth Goldschneider, head of pain management at Cincinnati Children's Hospital Medical Center. "If it hurts you and you say it hurts, then we believe that."

Before seeing Goldschneider and his counterparts, families often bounce from specialist to specialist in search of a cure.

Initially, Margie Abplanalp took daughter Mandy, now 10, to gastroenterologists for the abdominal pain that has plagued her since kindergarten. They diagnosed irritable bowel syndrome. In the spring of 2003, when Mandy was 8, the pain got so bad that she couldn't sit up in bed, and she began missing school.

Tests showed that her gallbladder needed to be removed, but removing it didn't eliminate her pain. The gastroenterologist sent her to Goldschneider's team. In a few sessions with a psychologist, biofeedback helped her learn to control her pain.

"If I eat spicy foods or ice cream, it hurts sometimes," says Mandy, who also takes an anti-seizure medication that Goldschneider prescribes "off label" for pain. "I have to take deep breaths and hold it."

Although certain foods and missed doses of medicine can still punch Mandy in the gut, "I feel really fortunate," says her mother, a Lawrenceburg, Ind., resident and Cincinnati Children's nurse. "She does well in school, likes to do basketball — a normal 10-year-old."

Jenna's path back to normalcy has been far more circuitous. Her father, Randy Gale, calls her pain "The Terminator." Says Gale: "It has no discriminating thoughts. It just comes in and wreaks havoc on your child and every member of your family. It doesn't care."

Stumped, her pediatrician referred her to an orthopedics clinic, where doctors immobilized her leg in a brace. Bone scans, blood tests and X-rays turned up nothing. Yet, says her father, "you just lightly touched her knee, and she was screaming."

Her desperate parents, thinking she might have Lyme disease, took her to a UCLA rheumatologist who admitted her to the hospital for tests. On the third day of her stay, Jenna's pain finally had a name: complex regional pain syndrome. Her parents had never heard of it. They jotted the name on their hands to remember it.

With this pain syndrome, Jenna's mother, Debra, explains, "you're in pain long after your injury should have healed." In Jenna's case, no one could pinpoint the injury that locked her pain-signaling switch in the "on" position.

Doctors used to think that only adults developed complex regional pain syndrome, says Richard Howard, a specialist in pediatric pain management at London's Great Ormond Street Hospital for Children. Doctors aren't sure how common it is in children, but it seems to affect twice as many girls as boys. Physical therapy of the affected area is the main treatment, Howard says. "It's not intuitively the thing you would do, because it hurts, and they don't want to move it."

Jenna had to wait three weeks for an appointment to see Lonnie Zeltzer, founder and head of the UCLA Pediatric Pain Program. Zeltzer, co-author of Conquering Your Child's Chronic Pain: A Pediatrician's Guide for Reclaiming a Normal Childhood, prescribed two or three physical therapy sessions weekly.

In a month, Jenna was out of the wheelchair and on crutches. By August, she was on a cane, and the family went to Disney World. But on that trip, a bus door accidentally closed on her left shoulder, and the pain in her knee inexplicably moved there. She no longer needed a cane, but she returned to school with her arm in a sling. A physical therapist came to her house to encourage her to use the arm.

And then the pain packed up and moved again. After a bout with the flu in November 2003, Jenna's pain took up residence in her forehead. For the next year, Jenna had daily home sessions of alternative medicine treatments — hypnotherapy, acupuncture, massage therapy and Reiki energy healing — and weekly visits to Zeltzer's clinic.

"I've always believed in sort of a mind-body approach to pain," says Zeltzer, who also suggested that Jenna reduce her stress by transferring to a less competitive private school this past fall.

"Is the pain physical or is it psychological? Is it in the mind or is it in the body?" Zeltzer says. "I think we now know that if you feel pain, there's sensory signaling going on."

Zeltzer's program also offers patients art therapy, meditation, Iyengar yoga and guided imagery. She has done MRI studies that show imagery affects metabolism in brain areas related to pain perception. Her published findings and grants from the National Institutes of Health "make me seem less fringy to the administration here," Zeltzer says.

Still, insurers are not as convinced about the value of alternative therapies for children's pain. Jenna's father says he had to pay out-of-pocket for them.

"We're fortunate that we did have the resources to do this," says Gale, an investor who works at home.

Cost is an issue at the Children's Hospital at Montefiore in the Bronx, where about 85% of patients are indigent, says pediatrician Catherine Skae, head of the hospital's recently established pain service. The Montefiore program is funded by a private foundation's grant, and Skae says she has earmarked thousands of dollars for alternative therapies, but the logistics are tricky: "Even if I send a patient to the acupuncturist, her office is in Manhattan."

Meanwhile, on the West Coast, Jenna says she still has headaches, "but they're not as bad. They're always there, but sometimes they're worse than others." She's in psychotherapy to deal with issues that surfaced during the past two years.

Jenna's dad says he's optimistic that her pain might finally be moving out for good.

"This is the best she's been since we've been through this horrible, horrible nightmare."

Friday, May 06, 2005

RSD UK


RSD UK
Originally uploaded by rsdscrpsnews.

RSD UK

RSD UK is a voluntary non-profit making charity which was set up to give support to those concerned with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome, often abbrevieated to RSD, CRPS type I or CRPS type II. You may also have been given the diagnosis of Sudecks Atrophy, Causalgia, Allodynia, Hand Shoulder Syndrome and many more.

There are three working groups within RSD UK and these are

* a support group where members can share experiences, fears and good/bad days and ask questions; this is free to join

* an education & information service to share knowledge with medical professionals or lay people who haven't yet had experience of or knowledge about RSD/CRPS

* an awareness group that campaigns peacefully, working with medical professionals and other organisations to raise awareness of RSD/CRPS and related pain issues


For more information on RSD and the RSD UK orgainzation please go to:

www.rsd-crps.co.uk

The Fight Against Pain: Complete Coverage List


ABC News
Originally uploaded by rsdscrpsnews.

The following is a list of ABC News programming on "The Fight Against Pain." Check your local listings.

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Click Here for ABC's Web Page

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Monday, May 02, 2005

Battling the 'monster'


Mlive.com - Everything Michigan
Originally uploaded by rsdscrpsnews.

Battling the 'monster'
MONTROSE TOWNSHIP
THE FLINT JOURNAL FIRST EDITION
Monday, May 02, 2005
By Rose Mary Reiz
rreiz@flintjournal.com • 810.766.6353

Doctors call it Reflex Sympathetic Dystrophy. Or RSD. Or Complex Regional Pain Syndrome.

Patients have a better name for it: The Monster.

"We all end up calling it that," said Dorthy Switalski, whose 12-year-old daughter, Allison, has battled RSD for two years. (See story at left).

"It is a monster. It inflicts so much pain, and it's so hard to stop. It just keeps coming and coming."

RSD is a little-known neurological disease in which nerves misfire and send constant pain signals to the brain.

The pain of RSD is considered the most severe of any chronic pain condition. Even the breeze from a ceiling fan or the light touch of clothing can cause excruciating pain.

The monster is almost as hard to explain as it is to endure.

"You get so tired of trying to explain it to people," Dorthy said. "Most of our friends know that there's something wrong with Alli, but they don't really understand what it is. And I don't expect them to; It's a hard disease to figure out."

There are a few people who require no explanation: other RSD parents.

"I couldn't have survived the past two years if I didn't have the support of other people going through this," Dorthy said. "They have saved my sanity."

Almost every day, in between family activities, appointments and assignments as a professional photographer, Dorthy sits at her computer to participate in a nation-wide, online support group. There, parents of children with RSD join forces to battle the monster and its companions: anger, frustration, worry, grief and guilt.

"Thinking back now, it makes us very angry that doctors didn't know the signs of RSD," wrote one mother whose daughter suffered classic symptoms for more than a year without being diagnosed, only to be told later that "it could have been treated if it had been caught early."

Another mother was angry with a doctor who insisted that "children don't get RSD," and that her son "was malingering to get attention."

Another expressed the common frustration of being patronized by doctors unfamiliar with the disorder.

"I was looked at as the mother who was trying to make my little girl into an invalid because I insisted on pain relief for my child."

One woman described an incident in which the assistant principal of her daughter's middle school took the girl's crutches away from her, saying that she was "faking" her sprained ankle.

Others expressed frustration with themselves for not being smarter, braver or having superhuman powers.

"(Before RSD), I lived under the impression that as a mother, I had the power to fix everything," one parent wrote. "I have had to come to terms with not being able to take care of every problem."

Another described the guilt of paying more attention to her ill child than her healthy ones. Still another admitted that she allowed an insistent doctor to inject her daughter's ankle with steroids in spite of her fear that the injection would cause an RSD flare-up.

"I let them do it," she wrote. "Sometimes as parents, we just feel that we should be fired from our jobs."

Along with frustrations and failures, parents share the relief of finally finding a doctor who understands, a program that helps, a medication that works, a procedure that brings relief.

One mother shared her experience with an emergency room physician's assistant, a compassionate, humorous man who was the first to suggest her daughter might have RSD. Instead of sending the girl home as his boss had ordered, he called several specialists and "sent us off with a referral and kind words, which I feel saved my daughter's life," the mother wrote.

Another mom shared the wonderful treatment her daughter received at a children's hospital, calling the staff "a Godsend. The disease is treated as a family disease and with a ton of humor. In fact, they say RSD stands for Really Stupid Disease. They have offered us unending support and guidance."

For some, there has been the relief of remission and recovery. But those familiar with the RSD monster know its habit to retreat and return.

"For some time to come, if not forever, you must be ever mindful that RSD is just hiding around the corner," a grandparent cautioned. "It is a sad fact of life that this is a condition there is no cure for."

A mother whose adult daughter has the disease wrote, "My daughter, Julia, though in 'remission' since 1991, has just in the past year or so admitted to me that there are times when she thinks the monster has returned."

Because RSD can be re-triggered by injuries, parents often describe, as one father did, "the tight knot in our stomachs whenever they so much as bump themselves."

Still, they rejoice with each other over each improvement and remission, Dorthy said.

"You'd think it would make you feel bad to hear someone else's good news when you're still suffering. But we don't feel that way. Hearing that someone else is getting better gives us hope."

When Dorthy shared that Allison had begun walking again, another mother responded, "I have tears in my eyes for you. I know the feeling well. I had that experience just last year when my daughter walked for the first time in 17 weeks. May your good news continue to grow."

"What fantastic news!" another mom wrote of Allison's remission.

"This gives us hope that RSD can disappear for other children, too."

One parent in particular has shared the joy of Allison's recovery. Peggy Sivik of Cleveland has a 15-year-old daughter, Mandy, with RSD.

Peggy and Mandy have been an online source of advice, support, prayer and encouragement to Dorthy and Allison. The friendships were deepened when two families met last year in Cleveland.

It was the first time Mandy and Allison met someone near their own ages with RSD, Dorthy said.

"We understood so well what we'd been through, we could finish each other's sentences."

Mandy is in almost constant pain, misses most activities with friends and uses a wheelchair. Still, she "gave a whistle and a hoot" when she recently heard good news about Allison.

With support like that, even the fiercest monster begins to seem smaller.

For more information about RSD help and support groups, call the Reflex Sympathetic Dystrophy Syndrome Association at (877) 662-7737 or visit the group's Web site, www.rsds.org.



Click here for link to the original story online.