Sunday, June 25, 2006

Woman chases 'miracle' recovery with 741-mile bike ride

Becky and Gary Murphy, originally uploaded by rsdscrpsnews.

Woman chases 'miracle' recovery with 741-mile bike ride

Colorado pair travel on tricycles for family visit


June 19, 2006

The journey from Greeley, Colo., to Johnston on a three-wheeled bike has been more than the sheer effort of pedaling 741 miles for Becky Murphy. The trek for Becky and husband, Gary, has been a celebration.

"There were a few times in Iowa I questioned whether I could finish this trip," said Becky, as she sat in her cousin's Johnston home. "I'm very proud of us."

The home of Adele and Ken Mikesell was the journey's destination for Becky, 53, and Gary, 54. Becky is a first cousin to Adele.

The experience is especially sweet for the Colorado couple because just four years ago Becky was in a wheelchair, the results of reflex sympathetic dystrophy, a neurological disease that affects the sympathetic nervous system.

After being in a wheelchair for nearly seven years — and completely bedridden for part of that time with the disease — Becky's condition began to spontaneously go into remission. As part of her therapy, her husband bought recumbent tricycles, which have two wheels in the front, one in the back, and which place the rider in a near-reclining position.

What began as the couple riding for rehabilitation near their home area of Lakewood, Colo., ended up a passion. Then, after Gary retired from his job with the U.S. Department of Housing and Urban Development a few months ago, they decided they wanted to combine bike riding with traveling.

They chose Johnston as a destination because there were relatives they wanted to visit.

"We wanted an adventure," Becky said. "We had never done anything really adventurous. After being in a wheelchair for so long, it felt good to do something so challenging and be able to say, 'I did this.' So for us, this is a kind of celebration."

Gary and Becky both said they figure their three adult children thought they would never actually begin the trip. Then, when the couple did leave on the bike trip, their kids figured they would call from somewhere on the road for a rescue.

Other than losing a tent in a storm, one driver annoyed with them for riding on the pavement and one mean dog that decided to bite Becky at the beginning of the trip, the ride was quite smooth and enjoyable, the couple said.

"People were so nice and friendly," Becky said.

The couple met restaurant owners who paid for some meals, people who helped them get a cycle spoke fixed and hotels that only charged them half-price for a room.

"I think the tricycles have something to do with that," Gary said. "They are subjects of conversations and questions."

Becky said riding a recumbent cycle is like taking a reclining chair on a bike ride. "Other than having tired muscles at the end of the ride, you really don't notice you've been riding," she said.

Her muscles were particularly tired after riding three days up and down the hills along Iowa Highway 44.

"We had no idea Iowa was as hilly as it is," Becky said. "When you visit the state and drive the interstates you don't see that."

Another surprise in Iowa was how many miles they had to cover between towns.

"In Nebraska that would be only 10 or 12 miles, but in Iowa we would go as far as 29 to 30 miles between towns," Gary said.

But, Becky persevered and the couple pulled into Adele's driveway on June 13.

"We went 741.8 miles exactly," said Becky, as she rolled her eyes and smiled. Although they didn't take many photos along the way, Becky took notes each day of the trip and plans to write an account of their journey.

Their plan is to return to Colorado by car.

Adele has been especially pleased to see her cousin active again. "Before, when she visited she brought her motorized wheelchair and all kinds of equipment she needed," Adele said. "Now it's completely different. It's a complete miracle."

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Shocked residents get 'feelings out' about slashings

Franklyn Duzant, originally uploaded by rsdscrpsnews.

Shocked residents get 'feelings out' about slashings

Shocked residents get 'feelings out' about slashings
About 75 seek grief counseling after the gruesome deaths of a mother and son in Seminole.

Sandra Pedicini | Sentinel Staff Writer
Posted June 19, 2006

Residents still reeling after a neighbor beheaded his wife inside their home and slashed their son to death in a neighbor's yard met with grief counselors Sunday night to deal with their anguish.

"It sort of let me get my feelings out about how he died," said Sally Zouain, 10, a friend of Nico Duzant, who was slain the day he turned 11.

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Father's Day was a somber occasion for residents of the Greenwood Lakes subdivision. About 75 people sought counseling at Greenwood Lakes Middle School, two days after Franklyn Duzant went on a rampage wielding a samurai sword.

Counselors helped parents who were feeling emotions including anger, shock, grief, helplessness and worry about how Nico's violent death could affect their children, Seminole County Sheriff's Office spokeswoman Carrie Hoeppner said.

Meanwhile, new details about the 40-year-old suspect emerged Sunday, including that Nico was his adopted son and that he served in the Army during the Persian Gulf War, according to a longtime family friend.

Karen Arsenault, 51, of Sanford painted a picture of a loving family but one in which both spouses had medical problems. Franklyn Duzant suffered from arthritis and back problems, which he attributed to the war, she said.

"He said all his health problems were from Desert Storm," said Arsenault, who brought flowers to the Duzant home. "He felt like he may have got exposed to some chemicals somehow."

More recently, she said, he had had a tumor removed from his neck.

Evangeline "Gigi" Duzant, his wife, suffered from carpal tunnel syndrome and reflex sympathetic dystrophy syndrome and was in "excruciating" pain, Arsenault said.

Evangeline Duzant, 52, had adopted Nico from "a very poor family in Alaska . . . a mother who gave up her children," Arsenault said. Franklyn Duzant later adopted the boy as well.

Arsenault said she didn't know whether the family had financial troubles. Franklyn wasn't working, she said, and she didn't think Evangeline was either.

"Frankie was not the type of person who would talk about his personal problems," Arsenault said.

Instead, she said, he was a "social butterfly" who once brought her Kentucky Fried Chicken after her foot surgery in 2002 so she wouldn't have to cook. Arsenault said he adored his son, calling the boy "my man" and taking him fishing and skating.

"I just want everyone to know he wasn't a monster," Arsenault said.

Duzant came from a "very upscale" family, Arsenault said, and many family members live in New England and along the East Coast.

On Sunday afternoon, Arsenault picked up a baseball left at a makeshift memorial outside the Duzant house.

"Nico loved sports, I'll tell you," she said, before making the sign of the cross.

Christine Detuccio, a neighbor who was next door with her children and saw Nico's body after he was killed, said she has trouble sleeping.

That's not unusual, said Dr. Alan Keck, an Altamonte Springs psychologist.

The neighborhood is likely to be suffering for quite some time -- especially the adults who witnessed Nico's death, and children, Keck said.

"It really does affect the whole community," he said. "It makes everybody feel vulnerable and on edge."

Elementary-school teacher Julie Smith, who visited the memorial containing stuffed animals, flowers and a "happy birthday" balloon for Nico, said: "You see your neighbors, and it's just blank looks."

Adults who witnessed the vicious attack could suffer from flashbacks and feel heightened senses of fear, anxiety, irritability and sleep problems, Keck said.

They may even feel some guilt, wondering whether they could have done something to stop the killing or pick up on any cues that something was wrong, he said.

Children are especially vulnerable to problems such as nightmares and anxiety -- particularly the fear that something bad could happen to them, too.

"I expect the schools will be dealing with the fallout for months to come," Keck said.

Hoeppner said she became tearful at the counseling session as she listened to some of the parents' stories.

"They're dealing with their own loss," she said. "Now they have to explain to the children."

But, she said, "there is a sense of peace he [Nico] is with his mother and he is in a safe place. If you can take away that from an experience like this, they're going to do just fine."

Duzant, facing charges of premeditated murder, remained hospitalized Sunday at Orlando Regional Medical Center with injuries he sustained.

"He's been sedated for the most part," Sheriff's Office spokesman Lt. Dennis Lemma said. "There has not been a great opportunity to talk to him."

Jeannette Rivera-Lyles and Amy C. Rippel of the Sentinel staff contributed to this report. Sandra Pedicini can be reached at or 407-322-7669.

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Thursday, June 22, 2006

Complex Regional Pain Syndrome

Psychiatric Times, originally uploaded by rsdscrpsnews.

Complex Regional Pain Syndrome
By Steven A. King, MD, MS
June 2006, Vol. XXIII, No. 7

Of all the common pain syndromes, perhaps none is so misunderstood by both physicians and patients as complex regional pain syndrome (CRPS). Types I and II of CRPS are the current names for what were previously called reflex sympathetic dystrophy (RSD) and causalgia, respectively. Because of limited knowledge about these disorders, patients who suffer what is frequently very severe pain often have their condition misdiagnosed and do not receive appropriate treatment.

Although many physicians are still relatively unfamiliar with these disorders, the first in-depth description was made over 140 years ago by the physician often considered the father of American neurology, S. Weir Mitchell, and his colleagues, based on their observations of soldiers wounded in the Civil War. They noted that some soldiers who were wounded in the hand or foot developed a burning pain that was exacerbated by touching the affected body part. This syndrome was named causalgia, Greek for “burning pain.”

Multiple similar conditions were described over the years and received a variety of names, including post-traumatic injuries, algodystrophy, and Sudeck atrophy. In 1953, John Bonica, one of the pioneers in the study of pain, suggested that these disorders be subsumed under “reflex sympathetic dystrophy.” However, the validity of this term has been questioned frequently. One of the major problems encountered in its use is the uncertainty of the role of the sympathetic nervous system (SNS) in this disorder. The fact that there is a great deal of variability in response to sympathetic blocks suggests that in many patients, the pain is not due to a disorder of the SNS.

Because of this and the general confusion over RSD and causalgia, the International Association for the Study of Pain renamed these syndromes in its classification of chronic pain.1 RSD became CRPS type I and causalgia became CRPS type II. The diagnostic criteria for CRPS are shown in the Table (see June 2006 Psychiatric Times, page 9). The difference between types I and II is that in the latter, there is evidence of a definable nerve lesion.

Two terms used to describe the pain, allodynia and hyperalgesia, are notable in the criteria for both types of CRPS. Allodynia is pain due to a stimulus that is not usually painful and is commonly the most dramatic presenting symptom of these disorders. Patients with this problem may wear loose-fitting clothing to limit the amount of contact between it and the skin in the affected area. In more severe cases, patients may complain that even having bedsheets touching the body part can cause severe pain. In hyperalgesia, a normally painful stimulus causes more discomfort than expected. Both allodynia and hyperalgesia are covered by the more general term “hyperesthesia,” an increased sensitivity to stimulation.

The frequency of occurrence of CRPS is unclear. A recent study of patients with fractures of the distal radius reported that CRPS type I developed in 18%.2 Another study of 162 soldiers wounded in the Iraqi war who were seen in pain clinics reported that 4.3% suffered CRPS type II and 1.9%, CRPS type I.3 Based on reports that patients with CRPS often see a number of physicians before their condition is diagnosed correctly, it appears that many cases are never diagnosed. Type I may especially go unrecognized because of the absence of an identifiable peripheral nerve injury and the usual relationship of the disorder to some form of trauma, ranging from an accident-induced injury to surgery or diseases that can cause pain, including myocardial infarction and post-herpetic neuralgia. Since pain is an expected sequela of these events, the possibility of CRPS may not be considered by health care providers for lengthy periods.

Unfortunately, because many patients with CRPS appear “normal” and because pain such as allodynia seems so bizarre and so foreign to most laypeople and even some health care professionals, patients may be mistakenly thought to be either exaggerating their pain for secondary gain or even malingering. One of the saddest things is that these patients may find their pain discounted by so many others and may be stigmatized as falsifying their discomfort.

The cause of CRPS remains a mystery. A variety of physiologic mechanisms have been proposed. The classic view that the pain is due to hyperactivity of the SNS has been discounted, although the SNS appears to be involved in some of the symptoms, most notably the edema, blood flow, and sudomotor changes. Currently, CRPS is believed to be due to a combination of peripheral and central factors.4 Among the peripheral mechanisms that have been proposed are an inflammatory process, peripheral sensitization, and changes in sodium channels. These processes may result in central changes, including an exaggerated response to the peripheral input and a reduction of descending inhibitory pathways.

Because the severity of the original trauma does not appear to be correlated with these disorders, the significance of psychological factors and the possibility that they may play an important role—if not the major role—in the development of the pain have often been the focus of attention. Despite this speculation, there have never been consistent findings of a correlation between preexisting mental disorders and the development of CRPS. However, it has been proposed that there may be changes in the brain, most notably in the primary sensory cortex, secondary to CRPS, and that these can lead to a distorted body image.5,6 What role these changes may play in the pain and other symptoms of CRPS is still the subject of speculation.

In my next column, I will address the diagnostic workup and treatment of CRPS.

Dr King is clinical professor of psychiatry at the New York University School of Medicine.

1. Merskey H, Bogduk N, eds.Classification of Chronic Pain: Descriptions of Chronic Pain Syndromes and Definitions of Pain Terms. 2nd ed. Seattle: IASP Press; 1994.
2. Puchalski P, Zyluk A. Complex regional pain syndrome type 1 after fractures of the distal radius: a prospective study of the role of psychological factors. J Hand Surg (Br). 2005;30:574-580.
3. Cohen SP, Griffith S, Larkin TM, et al. Presentation, diagnoses, mechanisms of injury, and treatment of soldiers injured in Operation Iraqi Freedom: an epidemiological study conducted At two military pain management centers. Anesth Analg. 2005; 101:1098-1103.
4. McBride A, Atkins R. Complex regional pain syndrome. Curr Orthop. 2005;19:155-165.
5. Moseley GL. Distorted body image in complex regional pain syndrome. Neurology. 2005;65:773.
6. Birklein F, Rowbotham MC. Does pain change the brain? Neurology. 2005;65:666-667.

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Wednesday, June 21, 2006

Injury at casino may net $1 million, originally uploaded by rsdscrpsnews.

Injury at casino may net $1 million

By Jeremy Kohler

A quarter plunked into a video poker machine in May 2002 could turn into $1 million for an Alton woman, her lawyer said Friday.

It wasn't because she hit the jackpot but because, in a sense, the jackpot hit her.

Ameristar Casino in St. Charles agreed this week to pay that amount to settle Robyn Smith's personal injury suit, according to her lawyer, Jody Pravecek of Chicago. The settlement of the suit, in U.S. District Court at East St. Louis, is not yet official, she said.

Smith's husband, Robert Wilson, inserted the coin that night, but it fell through to the coin return. When he reached to get it, the front panel of the machine, roughly 20 pounds of metal, fell off and landed on Smith's foot, Pravecek said. The casino had failed to properly latch the panel, the lawyer said.

V. Scott Williams, a St. Charles-based lawyer for Ameristar, confirmed there was an agreement to pay Smith but would not discuss damages because he believed the terms were confidential.

Smith, through Pravecek, declined to comment. She and Wilson have divorced, Pravecek said.

Smith's foot swelled after the accident, and she was diagnosed with "complex regional pain syndrome," described in a medical dictionary as a nerve disorder that causes extreme pain at the site of an injury. Smith remains in intermittent pain, Pravecek said. She would not provide the newspaper documentation of Smith's injuries, citing confidentiality of medical records.

Pravecek said Smith has undergone a series of injections and also had an electronic implant to stimulate her spinal cord.

But her award far dwarfs the payouts typically paid by video poker machines in Missouri, said Clarence Greeno, a state gaming enforcement manager.

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Tuesday, June 20, 2006

Pain transforms nurse into activist, originally uploaded by rsdscrpsnews.

Pain transforms nurse into activist

Rare ailment, consequences derail her life

Corinne Purtill
The Arizona Republic
Jun. 16, 2006 12:00 AM

It started with nausea, then sweating. Before long, Vicky Jerdee had passed out in her nursing scrubs on the bathroom floor of the Mesa hospital where she worked, unable to speak or move.

From that terrifying day in July 2003, Jerdee's life began to crumble under the weight of a chronic pain condition later diagnosed as Reflex Sympathetic Dystrophy Syndrome.

She lost her job, her house, her health insurance and many friends. A pain she described "like someone's pulling your bones out" stole her energy and freedom, keeping her confined to a rented Ahwatukee Foothills home, where she lives with her teenage son and daughter and her mother.

If she knows she has to go to the grocery store on a Wednesday, she'll start mentally preparing herself for the exhausting trip on Monday.

But Jerdee is fighting back.

In recent months, the 46-year-old has become an outspoken advocate for chronic pain sufferers.

Jerdee is attending a conference today on pain and public policy at the Hyatt Regency Phoenix.

She's been tapped to serve on the board of the non-profit Arizona Pain Initiative, and has been asked to testify before a state Senate committee on the issue.

The work has helped her reclaim the life that chronic pain tried to steal.

"It makes me feel like I'm someone again. I have a purpose," she said.

Jerdee had been working as an endoscopy nurse when her symptoms started. Her condition soon deteriorated to include blurred vision, garbled speech, a foggy memory and peripheral neuropathy, a painful form of nerve damage.

She was diagnosed with RSD, a disorder that causes nerves to send constant pain signals to the brain. It can be brought on by an injury or accident, though Jerdee said she had neither. The Reflex Sympathetic Dystrophy Syndrome Association estimates that between 200,000 and 1.2 million Americans suffer from it.

Jerdee stopped working in November 2003, lost her Ahwatukee Foothills home not long after and moved in with a friend in Mesa. Her two teenage children went to live with their father.

Jerdee had worked as an emergency room nurse and remembered the patients who came in complaining of vague pains in an attempt to score drugs. She remembered the scorn she had sometimes felt for them, and feared that she saw the same look of disbelief in the eyes of doctors and nurses now caring for her.

"You hesitate to go because you don't want people feeling that way about you," she said. "It's degrading."

Without health insurance, Jerdee says she spends about $250 to $300 per month out of pocket for medications, including methadone for the pain.

She started attending a support group for people with RSD. The facilitator told her about the Arizona Pain Initiative, a Phoenix-based non-profit that focuses on pain education and advocacy.

After contacting the group, Jerdee was asked to serve on the board.

With her medical experience and ability to translate medical jargon into layman's terms, "we thought that she was a perfect person to do this," board secretary Anne White said.

Jerdee said she's also been asked to testify before a state Senate task force.

Jerdee's activism has energized her, though pain still shapes her days. She is hoping to qualify for Social Security and Medicare benefits and resume an injection treatment that eases her pain.

She also hopes to get a spinal stimulator, an internal device that blocks the pain response to the brain.

Her goal is to return to nursing within a year. In the meantime, knowing that she can help others who are in her situation keeps her going.

"They're dependent on me and I'm not going to let them down," she said.

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Monday, June 19, 2006

ACLU sues Alaska over state's new marijuana law

The Seattle Times, originally uploaded by rsdscrpsnews.

ACLU sues Alaska over state's new marijuana law


The Associated Press

JUNEAU, Alaska — The American Civil Liberties Union sued the state of Alaska today over a new law penalizing marijuana possession for personal use in the home.

The civil liberties group alleges the new law is an unconstitutional invasion of privacy.

"Is marijuana so dangerous that it justifies restricting a fundamental right? The state thinks it's yes, we think it's no," said Michael Macleod-Ball, executive director of the ACLU of Alaska.

The lawsuit also claims the law allows prosecution of people who use marijuana for medical purposes, which the Alaska Department of Law disputes.

Along with the lawsuit, the ACLU is asking a Juneau Superior Court judge to block the law. Macleod-Ball said a hearing was not immediately set.

The law, which was signed by Gov. Frank Murkowski on Friday, is an attempt to reverse a 30-year-old Alaska Supreme Court decision called Ravin vs. Alaska in which the court ruled the privacy rights of Alaskans trumped the harm the drug could cause.

Later court decisions set a legal limit of 4 ounces that an individual can keep in the home.

Murkowski for the past two years has been pushing through a bill to counter that ruling, understanding that the final decision would be up to the courts.

Under the new law, pot possession of 4 ounces or more is a felony. Possession of 1-4 ounces is a misdemeanor punishable by up to a year in jail; less than 1 ounce is a misdemeanor punishable by up to 90 days in jail.

"The issue of marijuana appears destined to be resolved by the courts," said Department of Law spokesman Mark Morones. "Now that there's some science behind it, we know a lot more about it now and its potency now than when the Ravin decision was decided."

Gearing up for the court fight, Murkowski and the Legislature included in the bill a set of findings meant to prove that marijuana has increased in potency since the original Supreme Court decision, and therefore has become more dangerous.

Opponents submitted material supporting their position, but the material was never considered by the Legislature, nor did any of it end up in the findings, according to the lawsuit.

"There was all this sort of reefer madness stuff coming from the government, saying this is crazy and we've got to restrict this," Macleod-Ball said. "There was misinformation and disinformation because the state was trying to make a point that it's more dangerous."

Joining the ACLU as a plaintiff is an anonymous 54-year-old woman referred to as Jane Doe who uses marijuana to treat pain caused by a neurological illness called reflex sympathetic dystrophy, according to the lawsuit.

She and another plaintiff, a 42-year-old woman referred to as Jane Roe, won't list their real names because they fear criminal prosecution under the new law, the lawsuit says.

Jane Doe and the ACLU claim there is no exception under the new law for medical marijuana patients. Morones said medical marijuana users are protected under the new law and will not be affected.

Copyright © 2006 The Seattle Times Company

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Saturday, June 17, 2006

Can looking in a mirror cure agonising pain?

Suzie Knight, originally uploaded by rsdscrpsnews.

Can looking in a mirror cure agonising pain?

Daily Mail 09:33am 6th June 2006

The pain in her left leg was so terrible that Suzie Knight begged her doctors to amputate it.

Two years previously she'd fallen and sprained ankle - but gradually the pain worsened until, by January 2003, it was so agonising it felt 'as though my leg was permanently stuck in a burning flame'.

The "gutsy, fit lass" from Yorkshire, a hard-working nurse practitioner who loved dancing and going to the gym, became wheelchair-bound.

The pain was so bad she couldn't eat, sleep or move; she lost two-and-a-half stone and was under constant medication, but this barely touched the pain. She couldn't bear the feel of a breeze on her ankle, let alone socks and shoes.

Yet an MRI scan had found nothing wrong with her. Doctor after doctor told her she was imagining the pain.

Suzie, 41, a mother of two, suffered depression - and it was this that finally led to her getting a diagnosis. A trainee GP treating her for the depression recognised her symptoms as reflex sympathetic dystrophy (RSD), which is also known as complex regional pain syndrome (CRPS).

Around 11,500 people in Britain are affected by RSD - it is the most severe of a group of disorders characterised by severe pain that has no detectable cause, seems out of proportion to the original injury and does not respond to painkillers.

Other conditions in this group include repetitive strain injury, fibromyalgia and chronic fatigue syndrome.

They are triggered by stress, injury or a virus, and result in symptoms, including tremors and extreme sensitivity, that can persist for years, even a lifetime.

As many as one in seven of the population is thought to be affected, but it's only recently that the medical profession has recognised these disorders - even now, patients must deal with some doctors' refusal to treat their case seriously.

A new book, Insight Into Pain And Suffering, published next week, has an introduction by Carol Black, President Royal College of Physicians, in which she criticises fellow doctors for disbelieving sufferers, saying: "This cruel, isolating and often intractable suffering has too often been the object of hasty and sometimes heartless judgments."

It was actually amputees, or rather the pain that seven out of ten of them suffer in the limb or digit that they have lost, that first helped neuroscientists in the early Nineties to begin to understand how medically unexplained pain might be understood and treated.

"Even today, many doctors will not take phantom limb pain seriously. But it's actually very logical," says Peter Halligan, Professor of Psychology at Cardiff University. "We may feel pain in the leg or ankle - but we actually experience it in the brain.

"So it should be no surprise that when you lose a leg, the pain continues."

Early studies at the University of California found that a carefully angled mirror, allowing the amputee to watch the remaining leg moving up and down while imagining that both legs were making the same movements, was able to reduce or even eradicate the phantom pain.

Five years ago, researchers at the Royal National Hospital for Rheumatic Diseases in began a series of studies at whether visual feedback from mirrors could also be used to treat medically unexplained pain.

The research showed that it worked, and now the treatment is available at the hospital as well as a growing number of physiotherapists nationwide.

So far, the therapy works only when one half of the body is affected by pain, as is the case with RSD. And it's not always successful then, especially for people who have had the symptoms for several years.

Suzie recalls arriving at the hospital and being asked by the doctor how she felt about her leg. "I told him I hated it and everything it had done to me, and that I wanted to have it amputated. He told me that I wasn't to worry, that I almost certainly had RSD and I could be helped."

She was taught to try to move both ankles together while watching her right leg in a mirror so that it appeared to be her left leg. "Early on, it was very difficult to focus. I'd pretend to play the piano with my toes while thinking hard about how well both my legs were performing."

Gradually, by repeating the exercise several times a day, the stiffness began to be released, her foot became more flexible and she was able to rotate her ankles.

"It's all about retraining the brain," says Dr Candy McCabe, one of the authors of Insight Into Pain And Suffering. "The truth is that this technique has been used for generations. Every mother knows that distracting a baby before an injection lessens the pain."

This first step allowed Suzie to tolerate a programme of physio and hydrotherapy. She got "wonderful" support from RSD-UK, a charity set up by fellow sufferer Catherine Taylor in 2000 to provide telephone counselling, information, an annual conference and, above all, mutual support from fellow members.

She was also given desensitisation training, learning to tolerate first the touch of feathers and silk, gradually building up to wearing a pair of slippers last December.

She wore her first pair of proper shoes in February - though they're flat and her much loved high-heeled boots have had to remain in the cupboard. "It's not a miracle cure," she says. "It's a long, slow haul: you start off doing everything for a couple of minutes and gradually build up.

"I've had to be persistent, positive and have had to pace myself. I used to be a whirlwind of activity, with a finger in every pie and always watching my weight.

"Now I'm a size 12, back at work but taking it much easier, and happier than ever."

Insight Into Pain And Suffering, by David Blake, Jenny Lewis, Candy McCabe and Catherine Taylor, is published by Amazon on June 14 at £19.99. To order a copy, call 0845 2266008.

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Thursday, June 15, 2006

Being a Baby Boomer is a Pain, Researcher Says

Pamela Palmer, MD, originally uploaded by rsdscrpsnews.

Being a Baby Boomer is a Pain, Researcher Says

Welcome to 'Golden Years' of chronic pain - seniors live with it

by Nancy Chan

A great deal of attention is being paid this year to Americans who are turning 60, the first of the baby boomers born between 1946 and 1964. Baby boomers already appear to be setting themselves apart from their parents and grandparents with more active and productive lifestyles in what formerly were termed “the golden years.”

Ironically, though, while people are living longer, thanks to the advances made by modern health care, boomers are also now finding truth in the axiom “The mind is willing, but the body is weak.” One of the most common reasons is chronic pain, where one out of every five individuals takes a pill daily to relieve acute aches and soreness.

Pamela Palmer, MD, PhD, is the director of University of California at San Francisco (UCSF) PainCARE — Center for Advanced Research and Education, which was launched in 2004 to build upon the UCSF Pain Management Center’s nearly 20 years of success in caring for patients with the worst of the worst types of pain.

Palmer believes that all physicians and nurses, particularly those on the front lines of patient care, need to be skilled at assessing pain and determining an appropriate course of action — whether by treating the patient’s pain if it’s a condition that is manageable at the local clinic setting, or by appropriately referring the patient to a pain specialist when a more advanced level of care is required.

Q: Pain is one of the “common denominators” of life. Back pain, arthritis, headaches — if we aren’t in pain ourselves, we all know someone who is. In fact, pain is the number one presenting symptom for most medical conditions. How would you describe pain?

A: For some patients, pain is straightforward. They have arthritis or other conditions that respond well to prescription anti-inflammatories or a combination of medication and physical therapy, and are back to being active relatively quickly after seeing their physicians.

But when pain results from a traumatic event like a car accident, how a patient’s body responds to that incident can be more important than the actual trauma. One person may be treated for the acute pain and never have a problem again. Another may develop chronic pain because of neurological processing that results in the central nervous system developing a “memory” of pain. This can also be true for seemingly minor injuries, such as an ankle injury, where a patient’s simple sprain turns into the much more difficult condition known as complex regional pain syndrome (also known as reflex sympathetic dystrophy).

Pain is complex and is a combination of anatomic and behavioral processes. When defining pain, one can think of nociception — the perception of pain — plus the level of suffering. The nervous system sends painful signals to the brain, and the patient’s brain interprets those signals based on his or her life experience, as well as the actual medical condition itself. It’s not just the physiological cause of the pain, but the degree of suffering and the events in the patient’s life experience that contribute to that patient’s sense of pain that we need to evaluate.

Q: How do you approach treatment of pain?

A: At the Pain Management Center, we see numerous types of pain, including back pain, cancer pain, post-herpetic neuralgia (pain from shingles), complex regional pain syndrome, myofascial pain, neuropathic pain, post-injury or surgical pain, and rheumatologic pain, among others. We perform diagnostic procedures, nerve blocks and other types of injections, implantable therapies and neuroablative procedures, and may also prescribe oral or other medications, or refer patients to our physical therapist, psychologist or biofeedback specialist, if needed.

We take a multidisciplinary approach by treating the whole person. We look at root physiological causes and also look at potential psychological factors because pain can lead to depression, anxiety and family hardship. And these same factors can also cause or worsen pain, or even lengthen the time course of the pain.

So, it’s really important to try to determine what pain means to each patient — and in this regard, patience is key. It can take up to six months in chronic pain conditions to fully evaluate what anatomical and behavioral factors play a role in any given patient.

Q: What do you think of the phenomenon of the wave of baby boomers turning 60?

A: It’s more than a little scary when you stop to think about it. By 2011, 20 percent of Americans will be over the age of 65. Compare that to the year 1900, when only 4 percent of Americans were over 65. That population has grown to a bigger percentage because we can now treat cancer, diabetes and many other diseases better. But from the musculoskeletal standpoint, we’re also now seeing a larger number of elderly patients with degenerative spine and joint disease. In some cases, it’s due to genetic predisposition for people who have spinal disease in their 30s and 40s. In others, we’re simply outliving our spines and joints — in essence, it’s a natural progression.

Fortunately, although we’re not yet able to reverse mechanical degeneration, orthopedic procedures such as joint replacement have advanced to such a degree that, with adequate pain management, patients are able to be active and vital well into their 80s and beyond.

But what concerns many of the leading pain management experts worldwide is the sheer volume of patients with pain who will be flooding the health care system in the next 10 to 20 years. Many major medical and nursing schools still don’t provide intensive pain management training for their students — particularly those who will become the first point of contact for those patients who say, “I have pain here.” And there simply won’t be enough pain management specialists to meet this demand if frontline providers refer patients who could be treated in local clinic settings.

We’re not ready for the wave, which means we have a potential health care crisis right in front of us.

Q: What are some other pain issues that you see with age?

A: We have published studies showing that there is a difference in tolerance between age groups when using opioids, such as morphine, to treat pain. When taking daily opioids for longstanding chronic pain conditions, older people actually report greater pain relief than younger patients, and yet require lower doses. Unfortunately, because the stigma of addiction remains, older people are still often reluctant to take opioids when they are the population most likely to benefit from their use in the chronic setting.

Educating patients and health care providers about these tolerance differences is one of the things we’re doing through UCSF PainCARE and the Pain Management Center. We have a patient education group that meets monthly, and we also provide training programs for health care professionals, including our Challenges of Managing Pain series and our online pain management certificate program.

Q: You’re training doctors online?

A: Yes, and nurses, physical therapists, psychologists and other health care providers, as well, through the UCSF Postgraduate Certificate in Pain Management/Online Program. We’re collaborating with the University of Sydney and University of Edinburgh to offer the first truly global system of postgraduate pain management education for all health care practitioners who are involved in assessing, diagnosing or treating patients with pain who realize they need more advanced training to improve their patient care.

The program is delivered entirely online, so it’s more convenient for health care providers — who are finding it difficult to leave their busy practices to travel to live conferences — and it’s more intensive than these traditional live programs. It’s based on the Core Curriculum for Professional Education in Pain developed by the International Association for the Study of Pain, and it takes three consecutive academic quarters to complete. So, participants really develop a solid foundation in the assessment and management of the various types of pain they’ll be seeing when the wave of baby boomers hits their front doors.

Q: How do you foresee the future for baby boomers?

A: When we dream of retirement, we think we’ll spend our days doing exactly as we please — whether it’s gardening or golfing. But as it stands now, growing old is not for the faint of heart. Too many people over the age of 60 have pain and related depression or anxiety that robs them of their quality of life.

Routine things, such as standing and sitting, may prevent them from playing with their grandchildren or even going out to the movies. Even my favorite sport, golf, can worsen low back problems by causing repetitive stress injuries just when retirees finally have enough time to truly enjoy the game. So, at the Pain Management Center, we often ask our older patients, “What is the one thing you can’t do anymore, but still wish you could?” We listen, and then we try to help them regain as much ability in that area as we can.

Q: Any last thoughts?

A: I once heard a prominent physician here at UCSF say, “Pain doesn’t kill anyone.” Many of us, when we hear a statement like that, are concerned — and rightly so — because there is so much more to delivering quality health care than just keeping a patient alive. On the flip side, though, I’ve heard other health care providers say that no one should ever be in pain. And I’m equally concerned because that statement can lead to unrealistic expectations for patients and their families, and can actually make it harder to help patients with pain.

It’s important to help patients understand that pain is a fact of life and that pain management is not a cure. Pain management is just that — managing the patient’s pain in a way that reduces suffering to the maximum extent possible, offers hope and ultimately leads to a better quality of life. These are worthy goals for all of us who see, or will be seeing, patients with pain.

More About Chronic Pain

The Two Faces of Pain: Acute and Chronic

What is pain? The International Association for the Study of Pain defines it as: An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.

It is useful to distinguish between two basic types of pain, acute and chronic, and they differ greatly.

● Acute pain, for the most part, results from disease, inflammation, or injury to tissues. This type of pain generally comes on suddenly, for example, after trauma or surgery, and may be accompanied by anxiety or emotional distress. The cause of acute pain can usually be diagnosed and treated, and the pain is self-limiting, that is, it is confined to a given period of time and severity. In some rare instances, it can become chronic.

● Chronic pain is widely believed to represent disease itself. It can be made much worse by environmental and psychological factors. Chronic pain persists over a longer period of time than acute pain and is resistant to most medical treatments. It can—and often does—cause severe problems for patients.

Pain is a silent epidemic in the United States. An estimated 50 million Americans live with chronic pain caused by disease, disorder or accident. An additional 25 million people suffer acute pain resulting from surgery or accident. Approximately two thirds of these individuals in pain have been living with this pain for more than five years.

The most common types of pain include arthritis, lower back, bone/joint pain, muscle pain and fibromyalgia. The loss of productivity and daily activity due to pain is substantial. In a study done in 2000 it was reported that 36 million Americans missed work in the previous year due to pain and that 83 million indicated that pain affected their participation in various activities.

Links to more information on chronic pain:

American Chronic Pain Association

American Pain Society -

American Pain Foundation -

National Institutes of Health Pain Consortium - Has information on major sources of pain.

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Wednesday, June 14, 2006

Doctors Struggle to Treat Mysterious and Unbearable Pain

Cynthia Toussaint, originally uploaded by rsdscrpsnews.

Doctors Struggle to Treat Mysterious and Unbearable Pain

Published: May 30, 2006

It was supposed to be a typical ballet class. Cynthia Toussaint, then a senior dance major at the University of California, Irvine, engaged in her usual stretching routine: she raised her left leg to the barre and slowly bent her upper body down to her right knee.

For a moment, she delighted in the long stretch. But as she returned to an upright position, she felt a sudden pop in her hamstring. "It felt like a guitar string had been plucked and it had broken," said Ms. Toussaint, who is now 45.

An intense burning sensation followed; it felt as if her leg had been doused in gasoline and set on fire, she said. The next day, the college athletics trainer determined that she had pulled her hamstring. But even years later, the pain would not subside. It migrated to her other leg, leaving her bedridden for nearly a decade, and overtook her vocal cords, leaving her temporarily mute.

All the while, doctors puzzled over and even doubted her mysterious condition.

Ms. Toussaint now knows that she is among an estimated one million Americans living with complex regional pain syndrome, a nerve disorder formerly known as reflex sympathetic dystrophy syndrome. For patients with the disorder, a trauma as mild as a fractured wrist or a twisted ankle can cause the nerves to misfire, so much so that intense pain messages are constantly sent to the brain.

For the past 150 years, so little was known about complex regional pain syndrome that it was often diagnosed as psychosomatic. But doctors now believe that the condition complicates 1 of every 1,200 traumatic injuries. And desperate patients are turning to new, often unproven, drugs and treatments. "It is still quite a mysterious condition," said Dr. Scott M. Fishman, a pain management specialist at the University of California, Davis, and the author of "The War on Pain."

"It raises doubts in the eyes of doctors and the people that are looking for hard lab evidence or good imaging confirmation," Dr. Fishman said. "With this condition, we simply don't have that."

Baffling as it may be, the syndrome is not new to the medical literature. It was first documented by Dr. S. Weir Mitchell, a Civil War surgeon. But few physicians are familiar with it; the average patient sees 8 to 10 doctors before a diagnosis is made, according to a recent survey by American RSDHope, a support organization.

Pain is the hallmark of the condition, which outranks cancer as the most painful disease on the McGill Pain Index. For some, the sensation remains in one place, most commonly one of the extremities. For others, it spreads throughout the body, making even a light touch or minor changes in temperature agonizing.

For Ms. Toussaint, as for many other patients, the pain was life altering. When she tore her hamstring, she was on the verge of completing her bachelor's degree. She was also being considered for a part on the television series "Fame." But the injury left her in debilitating pain. She could no longer stand on her own or leave her house; riding in a car on the bumpy California roads was torture.

Ms. Toussaint dropped out of school and fell into a deep depression, she said. It took 13 1/2 years for her disorder to be diagnosed. Dozens of doctors told her it was "all in her head"; one even suggested she suffered from stage fright.

Without clear clues as to what induces the syndrome or who is particularly susceptible, doctors say that treating it is a challenge. Sympathetic nerve blocks can reduce the pain, and doctors say the relief often lasts longer than the anesthetic.

More than two dozen drugs are also being used to treat the pain. But none of the medications, which range from acetaminophen and ibuprofen to morphine and methadone, have been approved by the Food and Drug Administration for this use.

"The myth is that this condition isn't treatable, but the truth is that it responds to the same kinds of treatments that have been found effective for other neuropathic pain," said Dr. Anne Louise Oaklander, director of the nerve injury unit at Massachusetts General Hospital and an associate professor of neurology at Harvard.

Dr. Russell K. Portenoy, chairman of the department of pain medicine and palliative care at Beth Israel Medical Center in New York, added that treatment was "a trial and error" process.

Doctors tend to use the drugs that are most commonly prescribed for other conditions before the drugs that are less commonly used," he said. "But in many cases, doctors need to perform sequential trials to find out which drug or combination of drugs helps the most."

Dr. Portenoy said he is a consultant for drug companies but not on work related to the syndrome or its treatment.

Another treatment is to implant an electrical stimulator near the base of the spinal cord or the injured limb. The device sends low-level electrical signals to the spinal cord or to specific nerves and blocks pain signals from reaching the brain.

Dr. Robert J. Schwartzman of the Drexel University College of Medicine in Philadelphia is skeptical of the electrical stimulators. Although he first began implanting them in patients in 1986, he no longer does. "Long term," he said, "stimulators don't work. From what I've seen, they wear out and then they stop working."

Dr. Schwartzman treats the condition with ketamine, an anesthetic that blocks one of the body's pain receptors. In most cases, this five-day inpatient therapy reduced the pain significantly for three to six months, he said.

In addition, a 10-day outpatient procedure — more than 1,200 people are on a waiting list for it — is being tested in a controlled experiment. Although the trial has been approved by the F.D.A., it is awaiting approval by Drexel's institutional review board.

Dr. Schwartzman has also sent the most extreme cases — the 30 patients who were found to be intractable to all other treatments — to Germany for five days of prolonged ketamine anesthesia, enough to put them into a coma.

Ten patients were completely relieved of their pain, Dr. Schwartzman said, noting that the treatment has not been approved in the United States.

Some doctors have strong concerns about the ketamine treatments. Dr. Oaklander, for one, believes there is not enough research to support its effectiveness, especially in light of the risks.

Either way, said Ms. Toussaint, who has not had the therapy herself, "It says a lot about this disease that we are willing to be put in comas." New research is also helping doctors understand the pain syndrome. In early 2006, a team at Massachusetts General was the first to identify organic nerve injuries in a large group of people with the disorder. The research, published in February in the journal Pain, confirmed that the syndrome was not psychosomatic, said Dr. Oaklander, who led the study.

This progress is promising for Ms. Toussaint. Since her illness was diagnosed in 1995, medications have reduced her pain, enabling her to stand and speak again. She and her partner, John Garrett, now manage For Grace, a nonprofit organization dedicated to increasing awareness of complex regional pain syndrome. Ms. Toussaint is also running for the California State Assembly on a health-based platform.

"People see me and they recognize me as the ballerina, but they don't remember the name of my disease," she said recently, "but that's all about to change."

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Friday, June 09, 2006

Author overcomes obstacles

Virginia Wallen, originally uploaded by rsdscrpsnews.

Author overcomes obstacles

By Jillian Daley
Staff writer

If she had just been the same volunteer reader she has been since 2001, Virginia Wallen would still have been loved by the children at Mineral King Elementary School.

"Wait!" called out second-grader Mariah Perkins, desperate to give Wallen one more hug Thursday before Wallen left Mariah's classroom to help out a teacher in a another room.

Wallen does more than read to the children at Mineral King. The 61-year-old Visalia resident writes books for them — books that, up until recently, she could barely hold.
"[The children] keep inspiring me," said Wallen, who has 12 grandchildren and five great-grandchildren but rarely sees them as most of them live in Tennessee. "What do they do? They love me, and I love them."

Her books, such as "Sonny and Sammy," focus on people who struggle with disabilities. In 1991, she was diagnosed with Reflex Sympathetic Dystrophy. She couldn't touch anything without pain and had to leave her job at the Tulare County Department of Social Services.

That doesn't stop her from volunteering three to four days a week at the school and regularly at three nursing homes. She brought in her books to read to them, and the children added their own illustrations.

"I told her to start publishing because [the books] were too good," Mineral King teacher Lisa Majarian said.

The first book Wallen published was "Sonny and Sammy" in 2005, and she also published "Boo Boo Bear" in 2005. "Amanda: Duck or Chicken?" is expected on shelves within six months. The inspirational stories explore the lives of those with disabilities, showing them as they are — just regular people.

In "Sonny," the horse is mistreated by his owner, ending up wandering the desert when he connects with a little boy, Sammy, and his family. The horse and boy bond, and one day Sammy, who is scared of horses, tries to ride Sonny. Sonny bucks upon seeing a deadly rattlesnake, knocking the child off of his back.

"[Sonny] had killed the snake and saved Sammy's life," she wrote.

Sammy ends up in a wheelchair. He still loves Sonny. His father buys him a special saddle made for someone with disabilities so the boy can ride again. As a young man, Sammy opens a ranch for people with disabilities. Everyone gets to ride.

It is a "very special place enjoyed by all," Wallen writes.

The story of Sonny and Sammy mirrors Wallen's own life.

Falls can spur RSD — just as a fall took the use of Sammy's legs.

After she lost the use of her hands, her second husband, 67-year-old Randy, helped dress and feed her, gently ministering to her.

But his wife is no one to pity.

"She has a strong will," he said.

In January 2003, she regained the use of her wrists and hands with a device Dr. James Billys installed in her arms, sending waves of electricity that soften the pain.

It gave her back the use of her hands, which are no longer swollen. She regained some of her independence, much like her character when his father gives him the saddle. Her husband still opens jars for her, as her grip isn't strong enough. He still drives everywhere. But she doesn't hurt the way she did.

"Life is better without the pain," she said. "Pain drags you down to where you want to give up."

# The reporter can be reached at

Originally published May 19, 2006

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