More and more articles are being published on RSD/CRPS in the Canadian press. For a recent collection from the major newspapers, please see Articles 2006-1994. Below is a small collection illustrating the many faces of RSD.
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EVIDENCE OF NERVE DAMAGE IN CRPS1
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 Anaesthesia 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
Brain is rewired in patients with chronic pain syndrome
The brains of people with a chronic pain condition look like an inept cable worker rewired areas related to emotion, pain perception and skin temperature, a brain imaging study suggests.
In Wednesday's issue of the journal Neuron, researchers reported using magnetic resonance imaging (MRI) to look for the differences in the brains of 22 normal subjects and 22 subjects with a chronic pain condition called complex regional pain syndrome.
The brains of chronic pain patients showed changes in the brain's white matter, the cable-like network of fibres that deliver messages between neurons.
"This is the first evidence of brain abnormality in these patients," said the study's lead investigator, Vania Apkarian, a professor of physiology at Northwestern University's Feinberg School of Medicine in Chicago.
"People didn't believe these patients. This is the first proof that there is a biological underpinning for the condition."
The syndrome often begins with significant damage to a hand or foot. In five per cent of patients, the pain continues to rage long after the injury has healed. The cause is unknown. Typical features include:
Pain that radiates from the injury site, such as the hand, to the rest of the arm or even the whole body.
Skin colour changing to blue or red, and skin temperatures that feel hotter at first and then colder as the condition becomes chronic.
A hike in immune markers in the blood showing the immune system has shifted into overdrive.
The white matter changes are related to the duration and intensity of pain and anxiety that patients feel, Apkarian said.
Dramatic improvements or remission are possible if treatment such as anti-inflammatories, physical therapy, sympathetic nerve blockers, electrical impulses applied to nerve endings, biofeedback and spinal cord simulation are used early, according to the Mayo Clinic.
The new anatomical findings could provide targets for potential drug treatments, the researchers said.
Aside from the white matter changes, the brains of people with CRPS also showed an atrophy of the neurons or grey matter that has been found in other types of chronic pain.
HE SUFFERED FOR 12 YEARS
Burlington man celebrates the end of pain shooting up his right leg to his groin.
Toronto Sun November 23, 2008
Chris Todman went in for foot surgery--and came out with terrible pain in his testicles. It lasted 12 years. Like a vise in the worst place. Day and night. An awful burning broken only by bolts of agony six or seven times an hour.....
... Later he was diagnosed with Reflex Sympathetic Dystrophy (RSD) a fancy name for chronic pain......
Page 6 by Mike Strobel, Toronto Sun.
Tel: 416 947 2265
To read the rest of the article go to: www.torontosun.com
Low doses of a common intravenous anesthetic
may relieve debilitating pain syndrome
Limited, low-dose infusions of a widely used anesthetic drug may relieve the often intolerable and debilitating pain of Complex Regional Pain Syndrome (CRPS), a Penn State Milton S. Hershey Medical Center researcher found.
"This pain disorder is very difficult to treat. Currently-available therapies, at best, oftentimes only make the pain bearable for many CRPS sufferers," said Ronald E. Harbut, M.D., Ph.D., assistant professor of anesthesiology, Penn State Hershey Medical Center. "In our retrospective study, some patients who underwent a low-dose infusion of ketamine experienced complete relief from their pain, suggesting that this therapy may be an option for some patients with intolerable CRPS."
The study, titled "Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome," was published in the September 2004 issue of Pain Medicine, the official journal of the American Academy of Pain Medicine.
CRPS (type I), also known as Reflex Sympathetic Dystrophy Syndrome (RSD), affects between 1.5 million and 7 million people in the United States and is oftentimes marked by a severe, burning pain that can be very resistant to conventional therapies. The pain frequently begins after a fall or sprain, a fracture, infections, surgery, or trauma. Often present in the limbs with possible later spreading to other parts of the body, patients also may experience skin color changes, sweating abnormalities, tissue swelling, and an extreme sensitivity to light touch or vibrations. The McGill Pain Index rates CRPS as 42 on the scale of 50, with 50 being most severe.
Although much is unknown about CRPS, the pain experienced by patients appears to be caused by over-stimulation of a nerve receptor complex involved in the process of feeling pain. Therefore, efforts have been made to treat CRPS by blocking these receptors. Whereas most pain medications do not effectively block these receptor complexes (often referred to as NMDA-receptors), ketamine does.
The study was initiated by Graeme E. Correll, B.E., M.B.B.S., and involved reviewing the medical records of 33 patients with CRPS treated by Correll. The patients, some of whom had failed to obtain pain relief from conventional therapies, were treated with low-dose inpatient intravenous infusions of ketamine between 1996 and 2002 in Mackay, Queensland, Australia. Ketamine infusions were started at very low rates and were slowly increased in small increments as tolerated by selected patients. The therapy was then continued as long as the patient tolerated the drug and continued to benefit from it. Treatment cycles generally continued until the patient experienced complete pain relief; until initially-obtained relief would not improve any further; or for no more than 48 hours if there was no improvement in pain severity.
Pain was completely relieved for 25 (76 percent) patients, partially relieved for six (18 percent) patients, and not relieved for two (6 percent) patients. Although the relief obtained did not last indefinitely, 54 percent remained completely pain-free for three months or more and 31 percent for six months or more. For 12 patients who received a second treatment, 58 percent experienced relief for one year or more with 33 percent remaining pain-free for more than three years.
The most frequent side effect reported was a feeling of inebriation. Hallucinations occurred in six patients with less frequent side effects including complaints of light-headedness, dizziness and nausea. Liver enzymes were altered in four patients but resolved after therapy.
The exact mechanism of sustained pain relief is unknown, but is currently under study at Penn State Hershey Medical Center. Harbut likened the ketamine treatment to the healing of a broken bone. "If someone breaks a bone and you simply put the two pieces back together, they won't immediately heal. However, if you add a splint and hold the bones steady for a period of time, and then later take away the splint the bone is healed. I believe that the ketamine treatment does something similar that lends support and allows the nerve cells to heal themselves, so that when you take away the ketamine, the pain is reduced or gone."
Harbut began studying CRPS with Correll during a work assignment Harbut volunteered to take in far northern Queensland, Australia, in the late 1990s. Correll was developing a therapy for CRPS but wanted a collaborator to formally research the effectiveness of the therapy. Harbut brought Correll's method back to the U.S. where he developed an FDA-approved study protocol (used at the Mayo Clinic Scottsdale) using this method to attempt to treat post herpetic neuralgia, another pain disorder with symptoms somewhat similar to CRPS. At the same time, Harbut met a patient who had suffered with intolerable CRPS for nine years who wanted to try this new therapy. That patient became the first successful treatment of intractable CRPS in the U.S. (A Case Report of this treatment appeared in the June 2002 issue of Pain Medicine.)
"Ultimately, we want to find a way to improve the quality of life for those who suffer with intolerable CRPS, some of whom at times contemplate suicide because of their endless pain," Harbut said. "Although optimistic about these early findings, certainly more study is needed to further establish the safety and efficacy of this novel approach." (A large clinical study is currently planned and under development at Penn State Hershey Medical Center.)
In addition to Harbut and Correll, the team involved in this study included: Jahangir Maleki, M.D., Ph.D., and Edward J. Gracely, Ph.D., Drexel University College of Medicine; and Jesse J. Muir, M.D., Mayo Clinic Scottsdale.
Various treatment centers in USA offer this treatment.
Koffler et al The Neurocognitive effects of 5 day anesthetic ketamine for the treatment of CRPS Archives of Clinical Neuropsychology 2007; 22: 719-729
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
Toronto Star Date: Thursday, December 15, 2005
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.
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.
SUFFERING STOLE HER CHILDHOOD
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.
FEMALE FIREFIGHTER FINDS HOPE FOLLOWING HAND INJURY
One year ago, Sheila Grady did something that would change her life – something she regretted instantly. The Hamilton firefighter injured her hand– not during a heroic rescue on the job but rather during a typical day on her farm. In an attempt to stop one of her horses from kicking, Sheila distractedly hit the horse on the butt and shattered bone in her right hand. Surgeons from Hamilton Health Sciences inserted pins into her hand to help the shattered bone heal. However, shortly after, strange things started happening to her hand. It became swollen and purple. She could’t even touch her hand because her skin hurt so much. She went to a multitude of doctors and specialists. Some suspected she had Complex Regional Pain Syndrome (CRPS) while others thought she may have osteoporosis.
Ten weeks after Sheila’s injury, Dr. Gareth Rhydderch from the Pain Management Centre at the General Hospital confirmed Sheila had CRPS.
CRPS (formerly known as Reflex Sympathetic Dystrophy - RSD) begins with an injury, often a minor one to a limb, and becomes a debilitating disorder. The sympathetic nervous system reacts to the injury, causing the limb to swell, change colour and temperature, and burn with pain. These symptoms result in decreased movement of the limb. Dr. Rhydderch says the syndrome isn't’t that common in the general population and there is still not a lot known about the condition.
"It is difficult to standardize research because patients come at varying stages of the disorder, with varying severity, and cooperation varies as well,” said Dr. Rhydderch.
One thing that is known is that early diagnosis increases the chances of recovery.
Since Sheila was diagnosed within three months of her injury, her chances of recovery were 80 per cent. Even so, Sheila became depressed after reading negative accounts of CRPS on the Internet, so to counter her fears, Dr. Rhydderch guaranteed her that she would be cured. He made this guarantee to put Sheila in a positive frame of mind, but he was also certain that she would overcome her CRPS .Sheila spent five months in treatment. Twice a week she would go to the Pain Management Centre(PMC) for stellate ganglion blocks. These injections into her neck blocked nerve impulses to her arm,causing temporary pain relief. She took advantage of this temporary relief and went to the Hand Clinic, conveniently located down the hall from the PMC, for therapy. The pain blocks allowed Sheila and her therapists to work together to increase her hand's passive and active range of motion.When Sheila first started at the Hand Clinic, she couldn't move any of her fingers. Two occupational therapists and a physiotherapist helped Sheila reeducate her muscles, so she could return to normal patterns of movement. They measured the strength and sensation in her hand and monitored her progress so they could adjust her program accordingly.
“Seeing my progress really helped because I felt like was actively doing something to advance my recovery,” said Sheila.
While much of Sheila’s recovery can be attributed to the Pain Management Centre and the Hand Clinic, she also spent six to seven hours a day doing therapy at home.“Sheila’s level of energy was phenomenal,” said Pam Ball, an occupational therapist at the Hand Clinic.“Because Dr. Rhydderch does many of his stellate ganglion blocks on the same day, and those patients go to the hand clinic afterwards, the hand clinic is somewhat of an informal support group,” said Ball.With this support group, patients can exchange suggestions, stories, and a lot of hope for each other .There is an overwhelming consensus that the unique relationship between the PMC and the Hand Clinic is beneficial to patients with CRPS.
“Patients get more out of therapy when they’ve had a block,” said Dr. Rhydderch. “It’s the best situation possible.”Since the clinics work so closely together, both clinics and surgeons can refer patients to each other at a fast and efficient rate."
“It’s kind of a triangle of service with the patient in the middle,” said Ball.“They’re all really interlinked now, and I think that has made a huge, huge difference .”Today, Sheila is back at work as a firefighter, and while one of her fingers is still a little stiff and swollen, she is living a normal life again. She feels incredibly lucky that she lives in Hamilton and didn’t have to travel across the province, like some other patients, to be treated at Hamilton Health Sciences.
If Sheila could send one message to those recently diagnosed with CRPS, it would be:
“Fighting RSD is a full time job. Find a doctor with the attitude and game plan to beat it. Couple that with constant physical therapy, mental imaging and do whatever it takes to keep you positive".
SPECIAL THANKS TO:Hamilton Health Sciences Insider Newsletter SPRING ISSUE 2005
Thalidomide eases hellish pain syndrome
Medical Post, Toronto Apr 15, 2003
by: Jenny Manzer ISSN: 00257435(excerpt)
CHICAGO - Thalidomide appears to relieve pain in patients with complex regional pain syndrome, a chronic neurological disease also known as reflex sympathetic dystrophy syndrome (RSD).
Copyright Rogers Publishing Limited Apr 15, 2003
Rare glimmer of hope for sufferers of reflex sympathetic dystrophy syndrome
CHICAGO - Thalidomide appears to relieve pain in patients with complex regional pain syndrome, a chronic neurological disease also known as reflex sympathetic dystrophy syndrome (RSD).
If thalidomide proves to be useful, it will be a rare glimmer of hope for sufferers of the syndrome, who can experience pain from a normal stimulus, such as a slight breeze.
The syndrome usually develops in response to a traumatic event, such as an accident or a medical procedure. Even a minor injury such as a sprain can trigger the condition, causing nerves to misfire and sending constant pain signals to the brain.
Another calling card of the syndrome is pain and swelling disproportionate to what would be expected from the inciting injury.
Dr. Joshua Prager, who presented one of three studies on thalidomide here, said most of his practice is made up of patients with the syndrome. He said in the worst cases, patients will flinch when they walk into the examination room because of the draft from the door opening.
"The other thing is hypersensitivity to touch. Sometimes when you see people with RSD, they won't be wearing appropriate clothing, because they can't have clothing touch them," said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, based in Milford, Conn.
"If you spoke to any physician here about the hardest pain syndrome or disease to treat, they would say this," said Broatch. "We have a tagline:
"If hell were a clinical, medical condition, it would be called RSD."
Dr. Prager's study included nine of his patients, two men and seven women, who had endured the syndrome for at least two years. The group had completed a multidisciplinary rehabilitation program, but had residual pain symptoms.
These patients completed one to three months of treatment, starting with 50 mg of thalidomide at night. The dose was titrated in 50 mg increments to a maximum of 300 mg each night, based on tolerability and response. The mean dose was about 150 mg, said Dr. Prager, who practises at the California
Pain Medicine Centres in Los Angeles.
The results of the small study were generally positive, with thalidomide fairly well tolerated. Seven of the subjects experienced a two-point or more decrease in their pain, as rated on the Visual Analog Scale (zero for none and 10 for worst). The average decrease in pain was about four points.
Two patients were able to dramatically reduce their use of pain medication, and one bed-ridden patient was able to start performing normal daily activities.
No patients experienced new or exacerbated peripheral neuropathy, a known potential side-- effect of thalidomide. Side-effects included moderate constipation and mild rash. Two patients had somnolence, which was beneficial in their cases. One patient discontinued the medication after a month due to weight gain.
Dr. Prager is a professor of anesthesiology at the University of California at Los Angeles, and a specialist in anesthesiology, internal medicine and pain.He said his findings provide a basis for a randomized, double-blind, placebo-controlled study of thalidomide to treat the syndrome. Five of his study subjects are still taking thalidomide, and have now been on the treatment for nine months. Three others eventually stopped the drug due to constipation, which worsened over time.
Dr. Prager said the mechanism of how thalidomide offers pain relief for these patients is not known.
The exact number of people suffering from the syndrome is not known. Dr. Prager said the incidence could be anywhere from 200,000 to 1.5 million in the U.S. "It's way underdiagnosed, unrecognized," he said.
Broatch said the findings on thalidomide were promising, but stressed controlled studies are needed.". . . There's no hope out there in a majority of cases, and this (thalidomide finding) is remarkable, that even in this small number people actually had complete relief for a number of months," he said.
Since the mechanism of the syndrome is not well understood, there are no good treatments for it, he added. Existing treatments include medications, physical therapy, nerve blocks, psychological support or implantable devices such as dorsal column stimulator or intrathecal medication pumps. Dr. Prager decided to start his research after reading a case study in the Archives of Internal Medicine in which a multiple myeloma patient taking thalidomide had unexpected resolution of complex regional pain syndrome.
Two other research teams were inspired by the 2001 study, and reported their findings here. Their studies, which were also small and open-label showed results similar to Dr. Prager's. One, from the Mayo Clinic in Rochester, Minn., involved 12 patients with longstanding complex regional pain syndrome who had not responded to other interventions.
Researchers concluded that although thalidomide is poorly tolerated in many patients, it shows potential for treating those who have failed all other interventions, and placebo-controlled trials are needed. A third study, from Drexel University College of Medicine in Philadelphia, reached the same conclusion. While several of 13 subjects dropped out due to adverse events such as rash, three patients who remained on thalidomide said it had provided life-altering benefits.
Thalidomide, branded in the U.S. as Thalomid, is available in Canada through the special drug access program.
Excerpt from article. Reproduced with permission of the copyright owner.
Further reproduction or distribution is prohibited without permission.
Nov. 30, 2003
TORONTO -- A tiny Canadian company wants to use poison from a fish -- a substance more toxic than
cyanide -- to help cancer patients suppress pain or to wean heroin addicts off their habit.
International Wex Technologies, a Vancouver-based company listed on the small-cap Canadian Venture
Exchange, says early trials show positive results from tetrodotoxin, although bigger and more extensive
tests will be needed before the product reaches the marketing stage.
It says the new drug could be on the market within three years, if all the tests work out.
The new drug is derived from blowfish poison -- a substance so dangerous that a mere trace can paralyze a person within minutes.
But the drug derived from the poison, tetrodotoxin, has already passed two phases of clinical tests, and
doctors conducting early surveys say it eased pain in terminally ill cancer patients, where no other pain
medication had worked.
"It quickly became apparent that some patients were having a dramatic response. You would not have
expected these results in existing treatments," said Dr Edward Sellers, a professor of pharmacology at the
University of Toronto who helped Wex conduct its Phase II trials, a study of 22 patients.
Sellers said one patient in his mid-50s was in such agony that he couldn't even wear his clothes without
sharp surges of pain.
But with shots of Tectin, Wex's patented name for tetrodotoxin, his pain subsided for more than week.
Researchers injected patients with several micrograms of Tectin -- a quantity so small it can't be seen
with the naked eye -- twice a day for four days, and found that nearly 70 percent experienced a reduction in pain.
Pain relief began around the third day of treatment, and often lasted after the final injection. In some
cases, the relief extended beyond 15 days, the study showed.
Tectin, a sodium channel blocker, stops nerves from sending pain signals to the brain.
The company says Tectin differs from other painkillers in that it doesn't have the same side effects as
morphine and its derivatives, doesn't interact with other medicines and is not addictive. It is up to 3,200
times stronger than morphine.
The success of the early Tectin tests is a small coup for a company that has set its sights on the $38
billion North American painkiller market, some 10 percent of which comes from managing cancer pain.
Wex says that each puffer fish can provide about 600 doses of the drug from within its liver, kidneys and
reproductive organs, so there is no shortage of the toxin.
"There is a resistance from the medical community to accept treatments from the natural world," said
Rob Peets, an analyst with Golden Capital Securities. "If this was a chemical product it would have been
snapped up a long time ago."
© Copyright 2003, Lycos, Inc.
PAINFUL DISORDER A MYSTERY
Conference organizers hope to raise awareness about RSD syndrome.
by Allison Lawlor, Standard Staff July 27, 2000 A6
The aim of a three day conference now under way in Toronto is to shed light on an uncommon debilitating disease."There is very little information on RSD." said Helen Small, a conference organizer. "Doctors aren't educated, They don't know how to recognize it or diagnose it."
The conference, which started today, is an effort to help provide doctors with more information on Reflex Sympathetic Dystrophy Syndrome (RSD).Small expects between 100-150 people to attend the three day meeting.The St. Catharines resident, who suffers from the syndrome, is the Ontario contact for the Canadian RSD Network. The Network, along with the RSD Association of Ontario. and the Reflex Sympathetic Dystrophy Syndrome Association of America, organized the conference. Speakers include medical experts from the US and Europe.
David Leprich, a St. Catharines chiropractor, will speak on Saturday about how he treats patients with the debilitating disease."It is not really a common condition," said Leprich, who treats about three local residents with the syndrome. "It is not something that can be cured."
The American RSD Association estimates the disease could affect millions of people in the US.The disease, also known as Complex Regional Pain Syndrome, is frequently the result of a minor accident like a sprained ankle .Following the trauma, the affected body part swells like it would under normal circumstances. But in people who develop the pain syndrome, the body's reaction to the minor accident is debilitating.The most common symptom of the disorder is burning pain. Other symptoms include swelling, temperature and color changes to the affected area, severe sweating and reduced ability to use the affected area. Symptoms usually occur in a limb but can also occur in other parts of the body such as the face.
"The response is way out of sync with the injury," said Leprich. "Nobody has come up with a definite answer---why?" The St. Catharines chiropractor treats a woman who developed the disease after dropping a can on her foot. Excruciating pain spread from her foot up through her leg to her hip," said Leprich. "Chiropractic is good for maintaining and increasing motion and helping a person to deal with pain," said Leprich. Leprich usually treats a patient with the syndrome every three to six weeks. Through manipulation, the soft tissue and nerves around the joints relax and the pain is eased. Other treatments include medication which blocks nerve impulses, pain management techniques and physiotherapy to maintain muscle mass in the affected area.
Early diagnosis of the syndrome is essential, If a person is not treated within six months of developing the disorder, it is likely to spread and become a life-long, chronic aliment, said Small. Following the conference, Small hopes to organize a support group in Toronto for patients with the disorder. She believes there are about two dozen sufferers in the city. If there is enough interest, she also plans to start a group in St. Catharines.
(reproduced with permission from Doug Firby, editor of the St. Catharines Standard)
RSD EXPERTS LAND HERE
Mississauga News: Community News: Southwest Edition Section C
by Tom Michibata
Linda Dollimore's quality of life will never be the same. The 34 year old Mississauga resident has trouble performing keyboarding functions at her job, because she has lost the feeling in her thumb and first two fingers of her right hand.Away from the office she can no longer play golf or baseball. She can't grip the club or bat properly because she's lost the feeling in her right palm.She can't sleep through the night, and she has become highly irritable. She has trouble remembering things. Dollimore is one of the growing number of Canadians who are afflicted with a little known but debilitating nervous system disorder called Reflex Sympathetic Dystrophy (RSD) that causes chronic pain. The sympathetic nervous system controls bodily functions like perspiration.
The Canadian and US RSD Networks are jointly holding an international conference this weekend (July 28-29) at the Marriott Hotel on the airport strip at 901 Dixon Road. Information on current treatment and the latest research developments will be discussed. Eight doctors from the US, The Netherlands, and Ontario will speak and conduct workshops.
Triggered by a trauma to the body--it could be surgery or even a sprain--nerves in the sympathetic that are damaged leave the victim with a chronic burning sensation, usually in the arm or leg, according to St. Catharines chiropractor David Leprich, a conference speaker."In severe cases, it can be disabling pain. People uses canes or crutches and they are unable to carry on a normal life. They may lose muscle mass and can develop osteoporosis" Leprich said.
It's critical that people diagnosed with RSD get immediate treatment. According to Dr Peter Veldman of Holland, who will be at the conference, 85 per cent of cases treated in the first six months are successful. From six months to two years, the rate of successful treatment drops to 70 per cent. Meanwhile, RSD can spread throughout the body.
Dollimore is considered a rare case in that, while her treatment was delayed--she was diagnosed with RSD after two years--she was still able to eliminate the burning sensation that's associated with RSD.In her case,it was triggered by a bite on her baby finger from a pet mouse. She underwent surgery to have nerve cells removed. "It used to feel like my hand was on fire. At times I felt like chopping off the hand".
Canadian RSD Network President Mel Martin of British Columbia says RSD isn't widely recognized in Canada. According to studies. 50 per cent of cases go undiagnosed because doctors don't know what it is. Martin says one of every 1,000 Canadians suffers from RSD.
(reproduced with permission)
MYSTERIOUS DISEASE LEAVES PEOPLE IN PAIN
It's misdiagnosed because many doctor's don't know about it
by David Olmos, Special to the Star (article appeared in LA Times) August 21, 1998. p. F8
A 21 year-old ballerina and actor with aspirations of a show-business career, Cynthia Toussaint was stretching on a ballet barre when she felt a sharp pain in her right leg. Doctors told her it was a torn hamstring--- a common injury for dancers---that would heal with time and rest. But as weeks passed, the pain didn't ease; it grew steadily worse. She didn't know it at the time, but Toussaint would see her injury result in a devastating illness that would end her dreams of a career in the spotlight and, eventually leave her disabled and relying on a wheelchair. It also began a harrowing 15 year encounter with a medical community that often fails to properly diagnose and treat little-known illnesses. "I had this wonderful life planned," says Toussaint of North Holly wood, California. "After I got sick, I was left in this constant , horrible pain and I knew it was all over."
Doctors say Toussaint has a controversial medical condition called reflex sympathetic dystrophy, or RSD. Recently, doctors who specialize in treating RSD have begun describing it by various other names, including "complex regional pain syndrome, type 1". The new name reflects still evolving research into the condition and it causes, diagnosis and treatment. There is significant disagreement about how to diagnose the illness, since there is no single test that proves a person has RSD. "RSD is definitely underdiagnosed because it is still not well-known," says Dr Joshua Prager, a Santa Monica anesthesiologist and former director of the UCLA Pain Medicine Center. "This condition was described in vivid detail 130 years ago, but for some reason, it's still not taught in medical schools." The condition often begins with an injury, as minor as a sprained ankle or as traumatic as a broken leg. An early warning sign is pain that does not go away and is more severe than would be expected.
"There is an unbelievably dreadful burning pain and heat associated with this condition," says Dr Michael Stanton-Hicks, an RSD specialist who heads the pain center at the Cleveland Clinic in Ohio. Swelling, unusual hair and nail growth, and changes in skin temperature and texture near the site of the injury are some of the other symptoms. One of the many mysteries of the disease is how a relatively minor injury can touch off a devastating illness in some people but not in others. A few researchers believe some people may have a genetic predisposition to RSD. When diagnosed early, and treated aggressively, RSD is often put into remission, medical experts say. When left untreated for several months, or longer, the likelihood of successful treatment falls off sharply. In severe cases, patients suffer intractable pain that leaves them bedridden. They are unable to tolerate the slightest touch, even being covered by a bed sheet is excruciatingly painful. Muscles and joints waste away, immune systems weaken and arms and legs go into disfiguring contractions. Many patients must battle bouts of depression; some commit suicide.
RSD patients describe years of being bounced among specialist without a diagnosis or useful treatment, experts say. When patients finally do find a doctor familiar with the disease, their condition has often deteriorated to the point at which treatment is difficult, expensive and ineffective. This leaves them angry and distrustful of the medical system. "I've had some patients who have seen 20 doctors," says Dr. Edward Carden, a pain specialist at Centinela Hospital Medical Center in Ingelwood, California. Many patients are seen by orthopedists, "who do a nerve conduction study that appears to be perfectly normal. Then they'll tell the patient; 'Go see a psychiatrist "
Toussaint was a patient of Kaiser Permanente form the time of her injury in 1982 until this past December. She was also covered by the hospital's own health insurance plan. Pressing a malpractice suit against Kaiser, Toussaint contends that a series of Kaiser doctors failed to diagnose her condition and that the delay cause her condition to steadily deteriorate to the point where she was virtually bedridden. Kaiser doctors early on labelled her condition as psychosomatic, saying that she was making it up, that she didn't want to get well or had "tendinitis from Mars". Kaiser contends that Toussaint suffers from "chronic pain syndrome" but that her symptoms have a significant psychological component"
Dr. Angela Mailis, an RSD specialist who heads the pain center at Toronto Hospital, says RSD has become a "wastebasket" diagnosis to describe patients with a complex mix of physical and psychological problems. In a three-year study published in the Clinical Journal of Pain in 1994, Mailis and researchers at the Toronto Hospital concluded that only 107 of the 206 Canadian patients previously found to have RSD actually had a nervous system disorder. The condition of the remainder had been misdiagnosed. These patients were later found to have a variety of musculoskeletal, psychiatric and other disorders.
Toussaint's condition was diagnosed by Carden of Centinela Hospital. Her treatment includes painkillers, physical therapy, and psychiatric counselling for depression. Tousssaint says she's now able to walk, ride in a car and sit upright for short periods. She and her partner of 17 years have been able to take short vacations. "I've lived my life for so long looking out of the window", Toussaint says, "I've gone from no quality of life to some quality of life. Going into a restaurant used to be a dream to me and now it's a reality."
(reproduced with permission)
QUICK CARE ASSISTS CURE
Winnipeg Free Press January 30, 1995 p. C1
by Allison Bray
NOTE:Dear Readers: Be aware that the person depicted in this article had early stage RSD/CRPS and therefore received treatment within the first few months that are so crucial to treatment.
When it comes to treating RSD, proper diagnosis and treatment can make the difference between almost complete recovery or lifetime disability, according to health-care experts. Because reflex sympathetic dystrophy can lead to irreversible damage, such as wasting of the affected muscles, contraction of tendons and osteoporosis - it is imperative that RSD be treated properly and as aggressively as possible, says Dr. Howard Intrater, director of the pain clinic at the Health Sciences Center. Cathy Watt, a HSC physiotherapist specializing in hand injuries, says while physicians are becoming increasingly aware of RSD, she sees about one patient a year who was not initially diagnosed with RSD.
DEVELOPED RSD: Intrater cites the case of a native man in his early 20s from northern Manitoba who developed RSD after getting a bone stuck in a finger while cleaning a fish.The man never got initial treatment, even though the symptoms persisted to the point where he kept his hand in a glove for about six months to ward off any stimuli that would trigger the burning pain. Eventually, the man was flown to the HSC for treatment, but he wouldn't allow doctors to insert an IV into his hand to provide drug treatment, because the pain was so severe."He just went back up north," Intrater says. "He's still living as he was, with the glove on his hand.
If it's not treated, it can result in the loss of a limb" he says. But if the patient is seen during the first stages of the disease, "with aggressive treatment and physiotherapy, 80 per cent of patients should have return of function". "But if it's in the third stage, less than 50 per cent will have a good response".
CAN RECUR: "RSD doesn't usually remain static, it either improves or gets worse", he says.Even if a patient recovers, RSD can recur if the patient has another injury or undergoes surgery. Consequently, he says it's prudent for people who have experienced RSD to have their sympathetic nerves frozen prior to surgery. Medical treatments range from electrical stimulation to beta blockers, epidural stimulators (where an electrode is implanted in the spinal cord to stimulate the affected area) to blocking the sympathetic nerves with injections, Intrater says. Acupuncture can also be effective in decreasing pain and improving mobility. However, Intrater says the main focus is to block the sympathetic nerves from releasing pain signals. Watt says physiotherapy is also a key element in successful treatment.
(reproduced with permission)