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This page has news from 2006 and 2007. To see what's new for 2008, please go to the WHAT'S NEW? page.

PARC POCKET CARD

EVIDENCE OF NERVE DAMAGE IN CRPS1 : A must read!

CURRENT PARC NEWS:

PARC POCKET CARD

PARC PEARL NEWSLETTER LATEST ISSUE

RSDCANADA SURVEY 2006

CRPS RESEARCH

PAIN NEWS: ARTICLES

CHRONIC PAIN LINKED TO PROTEIN

EVIDENCE OF NERVE DAMAGE IN CRPS1 : January 30, 2006

SUFFERING STOLE HER CHILDHOOD :Growing up with CRPS.

NEW CAUSE OF CHRONIC PAIN

THE DAY MY LIFE CHANGED FOREVER: Connie's story.

CLINICAL TRIALS

CRPS CLINICAL TRIAL IN NY TAKING CANADIANS

LENALIDOMIDE STUDY IN USA

PAST NEWS

IN THE NEWS 2005

NATIONAL PAIN AWARENESS WEEK (NPAW):

NOVEMBER 4-10, 2007

Many thanks to our great volunteers

without whom our Nov. 10th event would not have ben possible:

Ron and Mila

Cathy

Luke and Anne

Willy N.

Debbie K.

Bryan S.

Ashley K.

Al B.

====

WARMEST THANKS to speakers: Dr Shulman and Lisa Cardas.

OUR SPONSORS: CPM Clinics, Aquasonix Therapy and Gait Maxx Foot Clinic.

Thanks to Gerry Hruby of Aquasonix Therapy for donating items to the event.

"TREATING AND MANAGING CHRONIC PAIN"

Dr. D. L. Shulman

MD CCFP FCFP DAAPM

Rothbart Pain Clinic, Toronto

and

Lisa Cardas RN BScN

CPM Clinic, St. Catharines

DATE: Sat.Nov. 10

TIME: 1-4 PM

PLACE: CHRIST LUTHERAN CHURCH

140 Russell Ave, at Catherine St.

St. Catharines

Presented by PARC and CPAC Niagara support group.

Many heartfelt thanks to the following people for

making our June 2 CRPS SEMINAR a success!

SPEAKERS:

Dr. D.L. Shulman, Rothbart Pain Clinic, Toronto

Lisa Cardas, RN, CPM Health Centres (MEI)

Gerry Hruby, Aquasonix Therapy (Health Sonix Inc.)

SPONSORS:

CPM Health Centres

Aquasonix Therapy

VOLUNTEERS:

Jean P.

Willy N.

Debbie K.

Bryan S.

Deanna A.

Sharon S.

Bill S.

Aron S.

PARC presents:

"LIVING WITH RSD/CRPS"

"CLEARING THE HURDLES"

Dr. D. L. Shulman

MD CCFP FCFP DAAPM

Rothbart Pain Clinic, Toronto

"PAIN MANAGEMENT PROGRAM FOR PATIENTS"

Lisa Cardas RN BScN

CPM Centres, Mississauga

and

Gerry Hruby

Director of Patient Services,

Aquasonix Therapy

DATE/TIME: Saturday, June 2 at 1 PM

PLACE: Loblaws Store

"Upstairs at Loblaws"

5095 Yonge Street

Toronto, Ontario.

FREE PARC POCKET CARD with $10 admission.

NOTE: Doors will open at 12:45 PM.

Sponsored by CPM Health Centres Inc., Mississauga, Ont. Tel: 1 877 CPM PAIN

Sponsored by Health Sonix Inc., Aquasonix Therapy, Mississauga, Ont. Tel: 1 877 622 2121

The American organization FOR GRACE is dedicated to promoting awareness of CRPS and women in pain.

Founder Cynthia Touissant's remarkable story is in the March issue of Woman's Day Magazine.

To read the story go to FOR GRACE:

PARC PEARL WINTER ISSUE 2006

• REVIEW: November 8, St. Catharines with Dr Bieman-Copland, Clinical Psychologist : "Mangling Chronic Pain"
• PARC NEWS: Spring Event
• The POWER OF ONE: Dr Copland
• Chicago RSD/CRPS Conference
• Pain Practitioner Vol 16 No 1: CRPS Special Edition
• Physical Therapy
• Functional Restoration
• Thermography
• Personal Story: Life after DCS: by Bryant Frazer

To get your copy contact us at PARC.

PARC'S WISH LIST 2007

• volunteers
• newsletter/research assistant
• small new or used copier
• new or used DLP (digital) projector
• sponsors for our Spring Event

Please contact PARC for more details.

"Want Chronic Pain Relief? It Helps to be Rich" by Anne McIlroy

Globe and Mail Tuesday October 24, 2006 p A19.

Two tier health care already exists when it comes to easing crushing pain....

"....but many hospitals do not have pain clinics", says Dr Henry. "This is a disgrace", he says.

http://www.globeandmail.com

Read the article and share your story of chronic pain.

PROMOTING AWARENESS OF

NATIONAL PAIN AWARENESS WEEK NOV. 5-11,2006.

"MANAGING CHRONIC PAIN"

Wed. November 8 at 7:00 PM.

Dr. Sherry Bieman-Copland, Clinical Psychologist

Russell Ave. Community Center, Main Floor Russell Avenue at Catherine St., St. Catharines

H accessible. Free parking. Raffle. Display Tables.

Sponsors: Aquasonix, Alternative Healing Therapy, Dryan and Assoc.,

Pain Mgt. CANUSA (Laser Therapy), Holistic Therapies

Co-sponsored by CPAC and PARC.

Please contact PARC for more details.

UNSOLVED MYSTERY:

COMPLEX REGIONAL PAIN SYNDROME

Dr. G. Rhydderch, MD, FRCPC

Hamilton Pain Clinic,

Dr H. Pollett, MD FRCPC, Director,

Northside General Pain Clinic

Nova Scotia.

and

Dr T Kobrossi, DC, Toronto

DATE: June 18, 2006

PLACE: Holiday Inn,

3063 S. Service Rd.

Burlington, Ontario

TIME: 1 PM

OUR THANKS TO:

Dr and Mrs. G. Rhydderch, Hamilton Pain Clinic

Dr H. Pollett, Nova Scotia

Dr T Kobrossi, Toronto

Sharon, Bill and Aron Shore

Steve and Edna

Ken from Renew You Massage Therapy, Ancaster

Volunteers: Deanna, Bryan, Dee, Vickie, Margaret.

OUR SPONSORS:

Renew You Massage Therapy, Ancaster

Bartlett Natural Health, Grimsby

Jane Lauermeier, ND, St. Catharines

Dr T Kobrossi, Toronto

Joan Gooderham, Golden Quill Studio, Ft. Erie

Tudor Creek House B&B, St. Catharines

You Send Me, Gift Shop, St. Catharines

Staples, St. Catharines

Joanne Jodoin

=========================================================

PARC'S POCKET CARD

BRAND NEW! ONE OF A KIND! HOT OFF THE PRESS!

The PARC CARD

is the size of a credit card easily stored in a purse, wallet or pocket.

Text in part reads:

DO YOU HAVE BURNING PAIN?

HAS IT LASTED LONGER THAN THE EXPECTED HEALING TIME?

WHEN TO SUSPECT CRPS...(quote)

INSIDE TEXT: Signs and symptoms of RSD/CRPS.

Available now!

PATIENTS: Are you tired of explaining what RSD/CRPS is? Do your family and friends understand? Does your doctor know about it? Does the ER staff, specialist, local hospital, nurse, physiotherapist know? Now there is no need to explain--let the Pocket Card do it for you.

Why not keep one in your wallet and carry extras to educate your doctors?

PROFESSIONALS: Do you have patients recently diagnosed? Do you need cards for your patients, nurses, hospital or clinic staff?

This sleek designed 4"x 3 3/8"pocket card has current RSD/CRPS INFORMATION.

No other card like it exists in all of Canada.

HOW CAN I GET A FREE CARD?

Sign up as a new member or renew your membership with PARC. Please send your mailing address and membership fee ($35 CDN for deluxe or $25 CDN for newsletter only ) to the address below. (Please note: US and International rates available on request.)

HOW CAN I GET CARDS ONLY?

To receive a quantity of cards, please tell us how many you wish and include a donation inside a self-addressed envelope sent to our mailing address:

PARC POCKET CARD

PO BOX 21026

ST. CATHARINES, ONTARIO

CANADA L2M 7X2

Educating health care professionals and the public about CRPS is our mandate in 2006-7.

Please contact PARC for more details.

NOVA SCOTIA MAN REFUSED TREATMENTS BY VAC

Read about Glenn's struggle with Veteran's Affairs Canada (VAC) to receive proper treatments for CRPS. A twenty year plus veteran who served faithfully in the Canadian military is refused drugs and treatments recommended by a specialist in Nova Scotia for Complex Regional Pain Syndrome. Although the doctor has recommended several drugs which may help Glenn, the VAC has been uncooperative in approving the very drugs which can help his pain and suffering. Photon therapy, only $30 per session, has also been refused even though it has a 60% success rate for CRPS1.

If you can help Glenn, please contact us.

Read more about it in the Chronicle Herald: http://www.herald.ns.ca_NovaScotia_526325.html.

If you cannot get the article contact PARC(click here).

-----------------

THE RSD CANADA SURVEY

As of January 9, 2004, RSD CANADA officially launched its online CRPS/RSD survey! Please support the first RSD survey in Canada!

THE RSDCANADA SURVEY IS ONGOING THROUGHOUT 2006.

PLEASE CONTINUE TO PARTICIPATE.

Q: WHAT IF I DO NOT OWN A COMPUTER?

We prefer that you do our survey online. If you do not have computer access, please go to the library and ask the librarian to help you. You could also have a friend or relative help you complete it on his/her computer.It takes only a few minutes of your time..

We would appreciate it very much.

CRPS/RSD RESEARCH: 2004

McGill University, Montreal, Quebec.

Dr. Gary J. Bennett, well known American RSD researcher for many years, has come to McGill to conduct research on CRPS/RSD. PARC is wholeheartedly supporting this research and our team is cheering him on! If you live in the Ontario or Quebec area, this is your chance to help everyone with CRPS/RSD by being a research subject.

We invite you to read about it here!

Chronic pain linked to

spinal cord protein

Toronto Star Date: Thursday, December 15, 2005

Chronic pain linked to spinal cord protein

Wind blowing on skin or touch of a shirt is extremely painful

Discovery will help sufferers rebuffed for lack of physical signs

ELAINE CAREY HEALTH REPORTER

Canadian scientists have discovered a protein that plays a key role in causing debilitating, chronic pain that until now has never been understood. "Some people can't wear shirts or they're not able to go out because the touch of a breeze gives them lightning-like pain," said Dr. Michael Salter, who heads the University of Toronto Centre for the Study of Pain. "The worst part is that there's often no physical sign that something's wrong. They're suffering intensely, they get no relief from medications and their family and friends don't understand." The discovery paves the way for developing new ways of detecting and treating the chronic pain that affects thousands of Canadians, says a study published yesterday in the scientific journal Nature. Chronic or neuropathic pain is caused by nerve damage brought on by an injury or illnesses such as cancer, HIV-AIDS or diabetes, which causes changes in spinal cord cells called microglia.

"Once damaged, the scientists discovered that microglia release a protein called brain-derived neurotrophic factor which causes spinal neurons to send an abnormal signal to the pain-processing networks in the brain. Microglia normally act to suppress pain signals to the brain and spinal cord but the protein converts it into a mechanism that amplifies them,"

said Salter, co-principal investigator with Dr. Yves De Koninck of Laval University and a senior scientist at Sick Kids Hospital.

"One of the messages from this paper ... is that after these kinds of injuries to nerves in your arm or leg or hand, you can have changes in your spinal cord that can perpetuate pain and actually intensify it long after the injury has healed," he said.

"This is an important discovery for the millions of Canadians who suffer from debilitating chronic pain that cannot currently be treated," said Michael Wilson, chair of NeuroScience Canada, one of the funders of the research through the Brain Repair Program.

'If pain was spelled flu, it would already be considered an epidemic in this country' Barry Ulmer, Chronic Pain Association

The discovery "represents an important shift that could soon provide patients with effective treatments and allow them to be active again in our society," Wilson said. Chronic pain is "a touchy subject" because there are no obvious physical symptoms and sufferers are often told they are making it up or faking it, Salter said. Even strong painkillers don't suppress the pain because they work on only some of the large pain-processing networks but not all of them, he said. "Typically people with neuropathic pain get very little pain relief from traditional painkillers like morphine or Aspirin or acetaminophen," he said. For some people the pain is so acute that even common events like wind blowing on the skin or the touch of a shirt is extremely painful. When neuropathic pain attacks children with cancer who are undergoing chemotherapy, the pain is so excruciating the treatment has to be stopped.

The discovery of how microglia communicate with nerve cells in the pain- processing networks should help in developing drugs to treat it, Salter said. And it could lead to a diagnostic test to identify it. "You could go and have a test and show your physician: `Look, there really is something wrong with me,'" he said. That is a bigger issue in the United States where many chronic pain sufferers can't get any health care benefits.

Barry Ulmer, executive director of the Chronic Pain Association of Canada, said the findings were encouraging but were still only at the laboratory stage and "it's got a long way to go. "If pain was spelled flu, it would already be considered an epidemic in this country," said Ulmer, whose wife suffers from chronic pain. "Anything that comes forward that takes away from the subjective nature of pain is helpful," he said. "Most people are stigmatized because of it. Anything positive that comes along has to be a bonus."

If you change the way you look at something Something you look at will change.

SOURCE: Toronto Star 2005. Thanks for permission.

SUFFERING STOLE HER CHILDHOOD

Ottawa Sun

For Ayala Ravek, it was a spinning hockey puck that sent her life spiraling in 1998. She was in Grade 5 and playing floor hockey when she was struck in the leg.

When she got home, her kneecap was twice its normal size. "The doctor couldn't even touch me. As soon as he'd lay his hands on me, I'd start yelling" Ravek says,

Yet tests and scans on her knee found nothing.

"I had doctors saying it's all in my head, that I need psychiatric help, "she recalls.

"I thought I was crazy. I started to believe what they were saying".

Eight months later she was diagnosed by a pediatric neurologist at CHEO. But it could have come sooner. Four months earlier, her uncle an anesthetist has suggested to Ravek's parents that it might be RSD. The chronic neurological syndrome is characterized by severe burning pain, pathological changes in bone and skin, tissue swelling and extreme sensitivity to touch. But when they suggested that to another doctor, he dismissed it.

"It's just an exaggerated response to pain." Ravek recalls him saying, "He is kind of threw his hands up in the air, brushing it off".

Two months later, after being struck, Ravek fell down a fight of concrete stairs at school that left her with a shooting pain from head to toe and throbbing that wouldn't quit.

She missed the remainder of Grade 5, as well as a great deal of Grades 6,7,8 and had to repeat Grade 9.

"I had to leave school and I was teased relentlessly."

It wasn't just the pain that kept me from school, it was the people There are still people from my old school I can't see".

Rumors spread about what was wrong. Some said she was dying, others said she was faking it.

Even a supposed best friend once said:"I won't tell anyone if you're faking it. Are you?"

Even today, she says that isolated feeling is imprinted on her, and left her wary of trusting others....

RSD is said to be more painful than labour and Ravek describes it as a "very intense toothache or migraine, but all over". Doctors suspect Ravek may also have fibromyalgia.

In 2003, things did get better for a short while. Once she was able to be touched, she embraced alternative therapies, including Reiki, massage, acupuncture, acupressure and creative visualization. She adopted an organic diet and took up yoga. It allowed her to greatly reduced her medications.

Things were going very well until she developed endometriosis. Up until then she had been at school almost every day and had taking up belly dancing. but after laparoscopy in February 2004, Ravek didn't move for a month.....Soon her depression crept back. She couldn't concentrate and intense anxiety was setting in.

The pain's return saw her spiral downward physically and put her back to living in her bedroom. She developed an anxiety disorder and an eating disorder.

Despite her family being very close knit, Ravek withdrew and stopped talking to her family. Last June, she was admitted to CHEO's psychiatric ward in a deep depression.....Since then she has made progress. For a long time her meds were locked in a safe, but she's reached a point where she can now self-administer.

It's taken seven years but she says she's found great doctors that have helped her cope with her pain. Today she uses OxyContin to control it, but recently got off five medications.

"I still have a lot more but I know I need to be on these."

Family therapy is also helping her become close with her siblings.....Over time she's also started talking more to her parents.

"It's still hard," Ravek says. "You lose touch with people. I'm trying to regain those relationships. I isolated myself so much because of the depression. I didn't want to see anyone and didn't want to do anything. It's not the same relationship but we're rebuilding".

Excerpt from Source:Ottawa Sun October 17, 2005.

NOTE: PARC has stayed in touch with this beautiful, courageous teenager since she was diagnosed with CRPS. We hope that she continues to improve. Special thanks to Ayala for promoting awareness of CRPS, telling her story and making others aware of the myths of CRPS.

Science Spots New Cause of Chronic Pain

WEDNESDAY, Jan. 25 (Health Day News) -- In a finding that could alter pain treatment, British scientists have found that undamaged nerve fibers, not injured ones, cause ongoing spontaneous pain. The unexpected finding that may help in the development of new treatments for back problems and other conditions that involve chronic pain. Previous research into chronic pain focused on nerve fibers damaged due to injury or illness, and largely overlooked intact nerve fibers. "The cause of this ongoing pain and why it arises spontaneously was not understood before," Sally Lawson, of the University of Bristol, said in a prepared statement. "Now that we know the type of nerve fibers involved, and especially that it is the undamaged nerve fibers that cause this pain, we can examine them to find out what causes them to continually send impulses to the brain. This should help in the search for new analgesics that are effective for controlling ongoing pain." The findings appear in the current issue of the Journal of Neuroscience. Lawson and her colleagues identified nerve cells called nociceptors (damage detectors) that, when activated by disease or injury, send out electrical impulses that are sent to the brain. The faster these undamaged nociceptors fire electrical impulses, the stronger the ongoing pain. The firing of these nociceptors seems to be caused by inflammation within the nerves or tissues, caused by dying or degeneration of the injured nerve fibers within the same nerve, the researchers said.

EVIDENCE OF NERVE DAMAGE IN CRPS1

For immediate release: January 30, 2006

Study finds nerve damage in previously mysterious chronic pain syndrome Reduction in small-fiber nerves may underlie complex regional pain syndrome-I (reflex sympathetic dystrophy)

BOSTON – Researchers at Massachusetts General Hospital (MGH) have found the first evidence of a physical abnormality underlying the chronic pain condition called reflex sympathetic dystrophy or complex regional pain syndrome-I (CRPS-I). In the February issue of the journal Pain, they describe finding that skin affected by CRPS-I pain appears to have lost some small-fiber nerve endings, a change characteristic of other neuropathic pain syndromes

“This sort of small-fiber degeneration has been found in every nerve pain condition ever studied, including postherpetic neuralgia and neuropathies associated with diabetes and HIV infection,” says Anne Louise Oaklander, MD, PhD, director of the MGH Nerve Injury Unit, who led the study. “The nerve damage in those conditions has been much more severe,

Complex regional pain syndrome is the current name for a baffling condition first described in the 19th century in which some patients are left with severe chronic pain and other symptoms – swelling, excess sweating, change in skin color and temperature – after what may be a fairly minor injury. The fact that patients’ pain severity is out of proportion to the original injury is a hallmark of the syndrome, and has led many to doubt whether patients’ symptoms are caused by physical damage or by a psychological disorder. Pain not associated with a known nerve injury has been called CRPS-I, while symptoms following damage to a major nerve has been called CRPS-II.

Because small-fiber nerve endings transmit pain messages and control skin color and temperature and because damage to those fibers is associated with other painful disorders, the MGH research team hypothesized that those fibers might also be involved with CRPS-I. To investigate their theory they studied 18 CRPS-I patients and 7 control patients with similar chronic symptoms known to be caused by arthritis. Small skin biopsies were taken under anesthesia from the most painful area, from a pain-free area on the same limb and from a corresponding unaffected area on the other side of the body. The skin biopsies showed that, the density of small-fiber nerve endings in CRPS-I patients was reduced from 25 to 30 percent in the affected areas compared with unaffected areas. No nerve losses were seen in samples from the control participants, suggesting that the damage was specific to CRPS-I, not to pain in general. Tests of sensory function performed in the same areas found that a light touch or slight heat was more likely to be perceived as painful in the affected areas of CRPS-I patients than in the unaffected areas, also indicating abnormal neural function. “The fact that CRPS-I now has an identified cause takes it out of the realm of so-called ‘psychosomatic illness.’ One of the great frustrations facing CRPS-I patients has been the lack of an explanation for their symptoms. Many people are skeptical of their motivations, and some physicians are reluctant to prescribe pain medications when the cause of pain is unknown,” says Oaklander. “Our results suggest that CRPS-I patients should be evaluated by neurologists who specialize in nerve injury and be treated with medications or procedures that have proven effective for other nerve-injury pain syndromes.” She adds that the next research steps should investigate why some people are left with CRPS after injuries that do not cause long-term problems for most patients, determine the best way of diagnosing the syndrome and evaluate potential treatments. “Investigations that identify the causes of disease are only possible if patients are willing to come to the lab and allow researchers to study them,” she adds. “We are tremendously grateful to these CRPS patients, whose willingness to let us study them – despite their chronic pain – allowed us to make an important step in helping those who suffer from this condition.” Oaklander is an assistant professor of Anesthesia and Neurology at Harvard Medical School.

The study was supported by grants from The Mayday Fund, the National Institute for Neurological Disorders and Stroke, and the American Federation for Aging Research. Coauthors are Julia Rissmiller, Lisa Gelman, Li Zheng, MD, PhD; Yuchiao Chang, PhD; and Ralph Gott, all of the MGH. Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School.

Contact: Sue McGreevey (617) 724-2764

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.

References
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.

Treatment retrains brain against phantom pain

January 13 2007 at 03:57PM

New York - A therapeutic approach called graded motor imagery reduces the pain and disability in patients with phantom limb pain or complex regional pain syndrome type 1 (CRPS1), according to a report in the journal Neurology.

Findings such as these should make us all a bit more open minded about pain, Dr G Lorimer Moseley from the University of Oxford, UK, told Reuters Health. Graded motor imagery can be considered a therapeutic tool, but should only be used "within a sound clinical reasoning model."

Moseley notes that CRPS1 and phantom limb pain are classified as pathologic pain syndromes, because the pain seems unrelated to the underlying tissue damage. Therefore, the portion of the brain responsible for the perception of brain appears to be a reasonable target for treatment - to "train the brain."

The researchers investigated whether a 6-week program of graded motor imagery would reduce pain and disability for a more general population of CRPS1 patients and for patients with phantom limb pain, and compared this approach to physiotherapy and usual care.

In the first phase of graded motor imagery, the patients assessed images of their limbs in various positions for the degree of pain they would expect to experience. In the next phase, they imagined moving the limbs in a smooth, pain free manner. Finally, they actually mimicked the movement.

At the end of the program, average pain (as measured on a 100-mm visual analog scale) had decreased by 23.4 mm in the treatment group and by 10.5 mm in the control group, Moseley reports.

The average scores on a specific task tailored to five patients improved by 2.2 points on a 10-point scale in the graded motor imagery group, compared with 0.6 points in the control group, the results indicate.

By the 6-month follow-up evaluation, the average decrease in pain was still much greater for the graded motor imagery group (32.1 mm) than for the control group (11.6 mm), Moseley found.

"It is not a panacea by any means, and some patients don't respond at all," Moseley said. He also advocates using graded motor imagery with cognitive behavioural support and reassurance.

Moseley concludes: "Although evidence is emerging that treatments such as graded motor imagery and sensory discrimination training can be effective for pathologic pain, further studies are needed to replicate the current data and elucidate the mechanisms involved."

SOURCE: Neurology, December 26, 2006.

The Day That Changed My Life Forever

March 31, 2003 is a day that I will never forget, although there are many
parts of that day that I can't remember. Parts that fade in and out of my
memory, jumbled and unclear, but in focus and crystal clear. How can that be
you ask? Well let me tell you a story about myself and explain. My name is Connie and I am a 36 year old (soon to be 37) stay at home mom.
My husband Grant and I have been married for 17 years this summer and have
lived in Clifford for all of those years. We have two beautiful children,
Jessie who is going to be 16 this December, and Alisa who is turning 13
March 1st. Throughout our years together we have gone through many changes,
both good and bad, like any normal family, but on that fateful March 31st
some three years ago, our lives as we knew it, changed forever.

What is RSD?

RSD, is also known as Complex Regional Pain Syndrome. It is a Chronic Pain Disease that is caused by a usually non traumatic injury, such as stubbing your toe or something as simple as having a sliver. Although in many cases
it is caused by an injury like mine, sustained in an accident, many at work,
and others in everyday living. Surgery, fractures, stroke or heart attacks
can also cause RSD. A normal injury like a sprained wrist that causes an
undo amount of burning pain that just won't go away.

Color changes, swelling extreme reactions to cold and temperature changes, limited range of motion in the limb affected by RSD. RSD also causes tremors, weakness and muscle atrophy, limbic system dysfunction, depression, memory loss, anxiety, hair, skin and nail changes, and sweating. RSD/CRPS is a multi-system, multi symptom disease characterized by chronic pain usually affecting one or more limbs, but it can affect any part of the body. The blood supply to the limb (hand, knee foot, hip shoulder) is affected.

When it progresses, the function of the limb may also become impaired. If diagnosed early, it can be treated effectively. If left untreated, it can spread to other parts of the body. There is no single test to diagnose RSD. Many patients with RSD are left undiagnosed for many months because of this and do not receive the treatment that they need to recover fully from this disease.

Treatment consists of physical therapy, drugs, anti-depressants, blocks (focal, sympathetic, epidural), spinal cord stimulator, nerve stimulator, morphine pump. Many people with RSD need ongoing psychological support and counseling. Learning to relax is a must for a person afflicted with RSD.

MY STORY:

Three years ago I was injured in a car accident on my way to work and
suffered many injuries. While most of my injuries healed, my left knee
refused to get better. It was swollen, cold to the touch, turned purple, and
caused me such intense pain that I was in agony most of the time. Three weeks after my accident I started physiotherapy . My left knee was hugely distorted and bent out of shape. I was unable to apply any pressure on it and couldn't get it straight. Therapy was pure torture as we tried to get my leg to straighten out. Many types of treatments were used on my injuries. Acupuncture, ultra sound, stretching, massage therapy, heat, shock wave therapy.

My physiotherapist tried every treatment available to her, unfortunately it wasn't enough. RSD had become my closest enemy for life. My life spiraled out of control as I tried to come to grips with this disease. A touch, as simple as a light breeze on my leg was enough to make me cry. Every day activities, that we normally take for granted, became a task that took many hours for me to complete. Vacuuming, laundry, dusting, these house hold chores that would normally take a couple of hours to accomplish, were now taking several days to be completed. Making dinner for Grant and the girls was often overwhelming and had to be left until Grant
was home from work and able to do it. My life as I knew it was over.

While RSD had me in it's grips, I was struggling with my mental health,
fighting depression and that age old question of "Why Me?" I hadn't done
anything to deserve this awful burning pain. Taking medication became part
of my daily routine, and as I learned to walk with crutches, a walker and
then a cane, I tried not to become dependant on pain killers which would
never quite take the pain away. The medication was enough to take the edge
off of the pain but it was always there. Grant and my girls became my best
friends and my pillars of strength, my shoulder to cry on when I was hurting
so badly and there were many days that I spent on the couch accomplishing
nothing but feeling sorry for myself as I lay in agony, trying not to move.

Members of my family were very understanding, spending many hours with me on
the phone, and in person trying to boost my spirits. My girls had to grow up
very quickly as I was unable to work, do normal house hold daily chores and
simply be a parent. I was unable to walk for more then a couple of minutes
at a time, sitting and standing was just as bad. My life became trips to the
numerous Doctors and Specialists that were trying to treat me. Traveling to
Hamilton General Hospital for Lumbar Sympathetic Nerve Blocks every two
weeks was an ordeal that I undertook in an attempt to over come the pain and
horror of RSD.

During the many months of treatments I had to look deep inside myself and
decide what was important in my life and what I could do away with in an
attempt to make my life easier on myself and my family. In doing so I was
able to find a new me and one that was much better suited to living with
this disease. I knew that if I continued on as my old self , Grant and the
girls and myself would not survive.

I was able to find a person who was strong, a person who could handle pain and someone who learned to laugh and love and enjoy my life, such as it was. I became a nicer person, someone who was able to talk to others and really listen. I became a lot more sympathetic to others and their trials and tribulations. My strength and
faith in God became much stronger and is now a driving force in my life. I
learned to love Grant and the girls for who they are and what they can do
for me and for each other. We became as a family, a much stronger unit,
separate people forced to live in extreme conditions and we survived.

While our lives are not perfect and will never be perfect, we have become a
strong happy healthy family, full of love, laughter, the spirit of God and
each other. This disease has taught us to be compassionate, kind, and
forgiving. Grant and the girls have learned not to take it personally when I
lash out at them in anger, they know it is not that I am angry with them,
but in so much pain that I can not handle it and must lash out at someone,
something and they happen to be closest to me. While I am quick to anger, I
am also quick to cry, quick to hurt and quick to feel sorry for someone else
who may be suffering more then myself. I have had to learn to laugh, at
myself and at the world.

While Grant and the girls laugh at me because my memory isn't quite like it use to be and I am forgetting things that I shouldn't be forgetting, I to have to laugh with them. While my disease makes my life that much harder, it has also made me aware of what is important and of how I want to live my life. I don't want to ever be the
person that I was before my accident; I am much more content with my life
and of what God has given me. I am truly thankful for all of the small things in life that we take for granted and for all of the big things that God has given me.

Family, Friends, Faith and Love.

Dealing with RSD and now also Rheumatoid Arthritis (which I was also
diagnosed with in April of 2005) two chronic pain diseases has made me a
stronger person, a person I like to think who is better suited to deal with
life's challenges and everyday as I crawl out of bed, I accept those
challenges and look forward to what life has to offer. Living with extreme
pain, memory loss, loss of being able to do every day activities, pales in
comparison to the love and happiness that I have been given everyday of my
life since that fateful day in March, 2003.

Am I upset that I have to live in extreme immeasurable pain every day for the rest of my life? Sure I am, I wouldn't be a normal person if I wasn't, but I have learned to deal with it and have decided that I am going to live my life to the fullest and am not going to let RSD live my life for me.

While I am going to have many ups and downs and will spend many hours on the couch in pain, I am very lucky as I know that I will always have love and understanding and compassion from those closest to me and those who mean the most to me. I will survive and I will always have the pleasure of knowing that I have become a better person because of RSD.

There may be a time in my life when I will not be able to walk and will be forced to use a wheel chair, I will never have to worry about parking in the very back of the parking lot as I now have a parking sticker that lets me park right up front. We were also lucky enough to get a hot tub in which I have spent hours and hours. Hot water under a starry night sky is therapy in itself, throw in a glass of wine, soft music and a soak in the hot tub with my husband doesn't hurt any neither.

I want to take this time to thank Grant and my girls, and also my friends and family who have stood by me. I want to thank everyone who has helped us out in any way since my accident and fortunately there is simply to many people to name. I can't thank you all enough for caring enough about us to stand by us when others have walked away. You are awesome and we love you! If you or someone you know, think that you may have RSD there is help out there.

For more information please contact Helen Small who is president of "PARC"
which is a non-profit organization whose goal is to promote and raise
awareness of RSD in Canada. They are located in St.Catharines Ontario and
she can be reached Monday to Thursday Evenings at 905-934-0261 or by e-mail through the website at www.rsdcanada.org

Note: Connie has started an online support group about RSD. If you are interested in learning more please visit the RSD Support Site

***Many thanks to Connie for taking the time to write this awareness article. To contact Connie, please e-mail PARC.

CRPS CLINICAL TRIAL TAKING CANADIAN PATIENTS

March 7, 2006.

PARC has just learned that the clinical trial on IV Ibandronate for CRPS, is taking Canadian patients who can travel to Manhattan. The study is being done at Beth Israel Hospital in New York City. To find out if your qualify for this study, please contact the Study Coordinator, JE at TEL: 212 844 6411

June 19: Clinical Trial has all patients it requires.

PAIN MANAGMENT AND RESEARCH Summer 2007 Vol 12 No. 2

copyright The Journal of the Canadian Pain Society

exceprts

1. LaChapelle, Diane et al

ACCEPTANCE OF PAIN:IS IT WITHIN THE REALM OF POSSIBILITIES? Univeristy of New Brunswick and Mount Saint Vincent University, NB

Within the past 10 years, cognitive behaviour pain management models have moved beyond the traditional focus on coping strategies and perceived control over pain, to incorporate mindfulness and acceptance based approaches.Pain acceptance has been described as "giving up the struggle within unyielding pain and learning to live a better life." (McCracken 1998, p.22) Acceptance has since been found to be associated with lower levels of pain, disability and psychological distress. Little is know about how patients arrive at a state of acceptance. Examination of the women's responses revealed acceptance was a process of realizations and acknowledgements including: realizing the pain was not normal and help was needed; receiving a diagnosis, acknowledging there was no cure, and realizing they needed to redefine normal. Diagnosis, social support, educating self and others, and self care were factors that promoted acceptance. Struggling to retain a pre-pain identity, negative impacts on relationships, others not accepting, and the unspoken message that the pain was "all in their head", were factors that hindered acceptance.

2. Noertjojo K MD MHSc MSc et al

AMPUTATION FOR COMPLEX REGIONAL PAIN SYNDROME AT THE WORKSAFEBC

Evidence Based Practice Group, Clinical Services. WorkSafe BC

CRPS type 1 and 2 are debilitating syndromes that have been recognized perhaps in the 5th century BC as described in the story of Philocetes written by Sophocles. Despite the lengthy history of these disorders, the natural history and pathophysiology of CRPS 1 and 2 are still unclear. As a result, the treatment of patients with these disorders remains controversial and frequently ineffective. One of the most drastic and dramatic surgical treatments occasionally considered for these patients is amputation of the affected body part.

A systematic review of the literature identified 90 published papers. Of these, 9 papers were relevant. The results of these papers will be described and compared with the results of amputation among WorkSafe BC claimants diagnosed with CRPS. The characteristics of the patients, treatment prior to amputation, indication for amputation and outcomes of the surgical procedures will be described.

CONCLUSION: Amputation is a rare and drastic surgical procedure that is unlikely to be of benefit to patients with CRPS.

Poster abstracts: Canadian Pain Society conference May 23, 2007.