Monthly Archives: May 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

Advertisements

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.

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.

Click here to see the original story.

Free support group to meet in Pasadena


Pasadena Star News
Originally uploaded by rsdscrpsnews.

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

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.

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.