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WELCOME TO THE PARC!
As of January 14, 2011 we have added new items throughout our site. We update frequently.
THOUGHT FOR TODAY:
Do not deny the diagnosis.
DEFY
the verdict.
Norman Cousins
CRPS AND PAIN NEWS
"TULIP"
ONE OF 8 UNIQUE DESIGNS
View more...
Immune treatment helps chronic pain patients: study
LONDON
Mon Feb 1, 2010 5:16pm EST
LONDON (Reuters) - Treating the immune system can dramatically ease the suffering of people with chronic pain from an injured limb or following an amputation, a finding that could change the way such pain is treated, scientists said on Monday.
Researchers from the University of Liverpool said a dose of a blood product called intravenous immunoglobin (IVIG) significantly reduced pain in almost half of patients with Complex Regional Pain Syndrome (CPRS) -- an unexplained chronic condition that can develop after injury to, or loss of, a limb.
"The discovery is expected to have a real impact on the treatment of other unexplained chronic pain conditions; if one pain condition can be effectively treated with an immune drug, then it is possible that other types will also respond," said Andreas Goebel, an expert in pain medicine who led the study.
IVIG is a human blood antibody used to treat immune disorders and some forms of leukemia. It balances immune systems, strengthening those that are weak and reducing activity in those that are overactive.
The researchers, whose study was published in the Annals of Internal Medicine journal, gave a single low-dose transfusion of IVIG to 13 volunteers with pain syndrome and found it significantly eased the pain in just under 50 percent of them.
The pain relief lasted five weeks on average and the treatment had few adverse side effects, they said.
"The real effect of this treatment...may turn out to be even greater than what we have already seen," said Goebel.
He said that while the patients in the study were given a single, low-dose infusion of IVIG, the treatment could in future be given in higher doses, and repeated to give extra benefits.
The scientists said they were trying to develop ways to allow patients to administer IVIG treatment in their own homes.
According to the researchers, complex regional pain syndrome -- also commonly called reflex sympathetic dystrophy -- can arise after any type of injury.
Some forms follow damage to a nerve, and in some cases the pain can be so severe that patients request amputation, only to find that the pain returns in the stump.
(Reporting by Kate Kelland, editing by Jon Boyle)
NOTE: PARC is monitoring this development. More news will be posted here.
More Pain Means Real Gain In Complex Regional Pain Syndrome Treatment
ScienceDaily (Nov. 12, 2009) — The saying "more pain, more gain" may be true for those already in terrible pain due to a chronic and debilitating condition, contrary to received wisdom. For those with Type I Complex Regional Pain Syndrome (CRPS), working through the pain of an aggressive physiotherapy program often leads to far better results than a more cautious pain-free approach. That was the result of a new study in Journal of Clinical Rehabilitation.
In fact, nearly half those who were given the painful treatment recovered normal physical function, whereas those who avoided painful physiotherapy usually had further loss of physical function.
CRPS is a chronic progressive disease characterized by severe pain, swelling and changes in the skin. The cause of this syndrome is currently unknown. Although CRPS may follow injury and surgery, this is not always the case.
Jan-Willem Ek, Jan C van Gijn and colleagues from the Department of Rehabilitation Medicine at Bethesda Hospital in The Netherlands studied 106 patents suffering severe physical impairments from CRPS Type I, which does not involve nerve lesions (unlike Type II). They found that almost all the patients improved significantly when subjected to a rehabilitation program involving graded pain exposure. In fact, more than half the patients in the study recovered full physical movement, and none of the patients experienced adverse effects from this more aggressive approach. While this "full on" approach doesn't reduce the amount of pain associated with the condition, it does provide sufferers with a significant increase in mobility, function and quality of life. Traditional treatments for this chronic condition typically minimize the pain, which limits physiotherapy significantly and usually leads to greater deterioration of the affected limb.
CRPS can vary from joint stiffness and moderate pain in the arms or legs to paralysis and complete loss of function in more extreme cases. People suffering from this condition usually have a poor prognosis. That's because the condition often leads to extensive changes in the brain itself, making treatment to the affected limb almost ineffective. Given that the brain is usually affected in this chronic condition, it's almost impossible to reduce the pain of this disease by trying to treat the isolated limb. The result is a vicious circle, where the pain of the condition limits the amount of therapy, which in turn causes more deterioration in the limb and the brain, which further hampers any recovery.
Typically, physicians resist therapies where excessive levels of pain are involved, for fear of causing further injuries to the arm or leg. However, the habitual pain from CRPS Type I is often a false warning sign. This seriously limits the extent of therapy that's offered, and often precludes the more aggressive treatments like traction, stretching and massage. Often, the result is that people's joints begin to deteriorate even faster.
"In our experience one of the cornerstones of the success of pain exposure physical therapy is to motivate the patient to undergo both the painful interventions and to keep training and exercising at home," says one of the co-authors, Robert van Dongen. This new insight into this debilitating condition allows doctors and physiotherapists to provide patients with hope for a more functional and normal life.
Ek et al. Pain exposure physical therapy may be a safe and effective treatment for longstanding complex regional pain syndrome type 1: a case series. Clinical Rehabilitation, 2009; DOI: 10.1177/0269215509339875
WOMAN RECEIVES $3.5 MILLION FOR PAIN
Judge says her pain is real.
"Record $3.5-million awarded to woman after hospital fall" at:
CBC NEWS
SPECTATOR
Globe and Mail
PARC's NEW CRPS DVD SET:
NOW AVAILABLE!
The CRPS DVD SET (of two discs) featuring three excellent pain management doctors is here!
Thanks to our RIDE TO CONQUER CRPS sponsors who made this possible:
Levinter and Levinter
Centres for Pain Management
Canadian Pain Coalition
Preszler Injury Lawyers
DISC 1 Bonus Feature:
Dr G. Rhydderch MD FRCPC
Dr. H. Pollett MD FRCPC
DISC 2: Lisa Cardas RN
Dr. David Shulman MD
CCFP FCFP DAAPM
HOW TO GET YOUR DVD SET:
OPTION 1: To download a form:
DVD FORM
OPTION 2:
We are accepting online donations.
Please fill in the form once for PARC and once for online donation.
Major credit cards are accepted through Paypal..
If you need assistance CONTACT US AT PARC.
ORIGINAL STAINED GLASS ART CARDS!
WATER (Design 2 of 8)
OR DESIGN Glassworks has utilized breathtaking colors and brilliant textures of stained glass for the luminous glass art that they create. These radiant cards are awesome photos of the art glass that Pam and Oded Ravek have so lovingly created. This set of 8 original cards are blank and suitable for any occasion.
Help support PARC's programs for 2010.
MORE STAINED GLASS ART CARDS
(Design 3 of 8)
FALL (Design 4 of 8)
Can you find the other 4 designs hidden in the web site?
OPTION 1: To download an order form, click here:
DVD/CARD FORM
OPTION 2:
We are accepting online donations.
Please fill in the form TWICE, once for PARC records and once for online donation via Paypal.
Major credit cards are accepted.
PARC PEARL: WINTER ISSUE 2011
- Pacing Yourself
- Self-Management Program for CRPS
- Potent Pain Preventers
- Acute vs. Chronic Pain
- Talking to your Doctor
- Dissolving Pain
- Dear RSD Friends
FALL ISSUE 2010
- WALK/RUN FOR RSD:THE EVENT
- Mindfulness Meditation Program
- Working Together When Facing Chronic Pain
- 10 Steps to Vitality
- National Pain Awareness Week Event October 30
- Anger Diet
- Interview with Donna Braun: WALK/RUN FOR RSD
"WALK/RUN FOR RSD "
Saturday Sept. 11, 2010
St. Catharines, Ontario.
View the photos!
NEWSLETTER
- OPTION 2: To purchase the newsletter please use our online system.
Please fill in the form TWICE, once for PARC records and once for PAYPAL transaction.
Major credit cards are accepted.
If you need assistance CONTACT US AT PARC.
MRI STUDY ON CRPS:
BRAIN IMAGING STUDY
January 2010
Study Criteria
- CRPS in one arm
- 18 years or older
- fluent in English
- attend assessment at the clinic
Recruitment for this research project has now finished. I would like to thank all those who contacted us and/or took part in the study for their time and effort.
Sincerely,
Jenny Lewis PhD
Life - New guidelines for chronic pain management with medication
By Johanna Weidner, Record staff
WATERLOO REGION - A Kitchener advocate for people suffering with chronic
pain is hopeful new Canadian guidelines for prescribing opioids will help
more people get the care they need to live better.
"Right now in Canada, pain is grossly misunderstood," said Lynn Cooper,
president of the Canadian Pain Coalition
.
Avoiding under-prescribing as well as the abuse of strong pain medications
such as Percocet and OxyContin are the goals of new national guidelines
about the use of opioids for chronic non-cancer pain published Monday in the
Canadian Medical Association Journal as well as online and publicly
accessible by a new national pain centre in Hamilton.
Cooper said there's not enough education for doctors about chronic pain and,
as a result, it's undertreated. The public also has little knowledge, which
means they don't push for proper treatment to get pain under control.
"The guidelines, we hope, are going to be able to promote better interaction
between patients and their health care provider," said Cooper, who suffers
from chronic pain after a back injury.
It's important for both doctor and patient to consider the benefits and
side-effects before starting opioid therapy because, she said, "this is not
anything someone should take lightly."
Cooper worries the guideline's focus on addictions may cause some doctors to
be more hesitant about prescribing opioids to their patients.
"There is enough fear," she said.
Dr. Norm Buckley, director of the pain management centre at Hamilton General
Hospital, agrees that many doctors have "opioid phobia" - the fear patients
will become addicted or misuse the powerful medication, which can have
deadly consequences.
But, at the same time, there's been huge jump in the prescribed use of
opioids in Canada - with a 50 per cent increase in prescriptions between
2000 and 2004. Canada is now the world's third largest opioid consumer per
capita, according to the paper.
The new guidelines, developed by a committee formed by the colleges of
physicians and surgeons in provinces across Canada, take doctors
step-by-step through assessing patients, determining the best medication and
dosage and how to monitor the effectiveness as well as look for signs of
misuse.
Clear directions will hopefully make family doctors more comfortable
managing pain with opioids. Buckley said doctors unsure of opioid
prescribing commonly refer patients to pain centres, including the Hamilton
one where Waterloo Region residents are sent, and they're put on lengthy
wait lists - often stretching more than a year.
Pain expert Dr. Roman Jovey said people suffering with long-lasting pain who
could benefit from opioids are overshadowed by fears of overdoses and
addiction.
"Under-treated pain is a far bigger problem than the misuse of opiates,"
said Jovey, medical director of the Centres for Pain Management with 10
locations across Canada primarily in the Toronto area.
"People with pain shouldn't be the victims of our desire to stomp out the
misuse of opiates."
He was on the expert panel that reviewed the guidelines, which depend
primarily on expert experience rather than scientific evidence because
little exists.
"Pain is such a new discipline," Jovey said. "Right now it's more art than
science."
He said there are also few resources in the province - no multidisciplinary
clinics, the few pain management centres that exist are overwhelmed, and the
government doesn't recognize chronic pain as a disease.
Posting the guidelines on a public website was the first big project of the
new Michael G. DeGroote National Pain Centre at McMaster University, started
early this year with a $1.5 million donation with the intention of
identifying best practice guidelines and making them accessible.
Although chronic pain often starts from disease or injury, Buckley said,
"sometimes the pain itself becomes the primary problem."
Cooper wants to believe the new guidelines will provide better understanding
of chronic pain and how to treat it to vastly improve the lives of those
people burdened by long-lasting pain.
"We're very hopeful that this is what's going to happen - Canadians are
going to get better care for their pain and their suffering is going to be
reduced."
jweidner@therecord.com
http://news.therecord.com/Life/article/707921
Therapist uses brain to help ease people's pain
The Bath Chronicle
An expert from Bath is pioneering a new treatment for people with agonizing pain.
Occupational therapist Jenny Lewis believes she can revolutionize treatment of a condition that leaves patients in so much pain they would rather cut off their arm or leg than endure the constant agony.
One in every 4,000 people in the UK suffers from Complex Regional Pain Syndrome (CRPS), which can be triggered after a small injury and often leaves patients in significant physical torment.
Dr Lewis, who is based at the Royal National Hospital for Rheumatic Diseases (RNHD) in Bath, has secured a fellowship at a leading international centre. She will work at McGill University in Canada, using brain imaging to investigate the phenomenon known as body perception disturbance.
The RNHD, also known as The Min, is the only UK hospital that offers an inpatient rehabilitation service, and sees about 100 new patients with CRPS each year.
During her clinical work Dr Lewis noticed how patients behaved in an unusual way towards their painful limb.
"While treating patients with CRPS I noticed that rather than protect and look after their painful limb as you might expect, patients often ignored it," she said.
"They had a distorted perception of their limb and when asked to close their eyes and describe it, they would leave out whole anatomical sections.
"They would express feelings of loathing towards it, often behaving as if it was not part of their body. Some even had a desperate desire to amputate it."
Body perception disturbance sees patients often unable to engage with the painful limb, which can be detrimental to their rehabilitation.
Dr Lewis will use magnetic resonance imaging to explore possible changes in the region of the brain responsible for touch sensation.
She hopes to use this as evidence of changes in the way that the brain represents the limb where chronic pain is felt, and will compare this brain activity to how patients describe their body perception disturbance to establish whether there is a relationship between the two.
"A better understanding of this relationship will inform treatment and contribute to improving rehabilitation outcomes for patients with CRPS and other chronic pain conditions," she added.
CLINICAL TRIAL FOR EXPERIMENTAL NEW TREATMENT
Investigator: Dr Mark Ware
McGill University Health Centre (MUHC)
Clinical Investigation for CRPS
Inclusion Criteria:
over 18
diagnosis of CRPS more than 6 months
Exclusion Criteria
kidney or liver disease
diabetes
Willing to attend 4 visits over a 10 week period.at the Montreal Pain Centre
Length of Trial: 10 weeks maximum
Travel and accommodation are at patient's own expense.
For further information please contact: Research Nurse: Sylvie Toupin (or Laura Pallett )
Tel: (514) 934 1934 x 44348 or x42215 Montreal General Hospital Pain Centre
CANADIAN LAWYER
REFERRAL LIST
PARC is compiling a list of lawyers who deal with CRPS/RSD.
We would appreciate your recommendations.
If you can recommend a Canadian lawyer, please contact us at PARC.
What's in your wallet?
This 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.
________
PROFESSIONALS: Do you have patients recently diagnosed? Do you need cards for your patients, nurses, hospital or clinic staff?
This sleek 4"x 3 3/8"pocket card has concise RSD/CRPS information.
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, or 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?
Q: HOW CAN I GET A FREE CARD?
A: Sign up as a new member with PARC. Please send your mailing address and membership fee ($35 CDN or USD for deluxe membership) or $25 CDN or USD ( for newsletter only ) to the address below. (International rates available on request.)
Q: WHAT IF I ONLY WANT CARDS ?
To receive a quantity of cards, please tell us how many you wish and include a donation ($2 per card) inside a self-addressed envelope sent to our mailing address:
PARC POCKET CARD
c/o PARC PO BOX 21026
ST. CATHARINES, ONTARIO
CANADA L2M 7X2
Proceeds go to our Education Programs for 2010.
CHRONIC PAIN
SUPPORT GROUP OF NIAGARA(CPSN)
MEETS FIRST WEDNESDAY OF THE MONTH
TIME: 1:30 PM
COMMUNITY ROOM
412 Louth Street, St. Catharines.
( Louth and Fourth Ave. across from Zehrs)
H. Parking in front, visitor parking at side. Please use main entrance.
January Speaker: Kathy Desjardins, Homeopathic Healing Centre, St. Catharines
ABOUT THE NIAGARA SUPPORT GROUP
Our support group discusses current issues in pain e.g. coping, medical treatment. We also have local speakers, help attendees find local resources and the group runs local events.
PLEASE NOTE: We welcome out of town visitors however if you plan on travelling any distance, please contact us to confirm the next meeting date.
For further information contact CPSN Chair: WILLY NOILES
IN CONJUNCTION WITH
NATIONAL PAIN AWARENESS WEEK
across Canada
GUEST SPEAKERS:
Chris Harper BScPhm
"MAXIMIZING YOUR PRESCRIPTION PAIN MANAGEMENT"
and
Dr. Anne Pollett MD Anesth.
Centres for Pain Management, Mississauga
"THINKING OUTSIDE THE BOX:
ROLE OF COMPLIMENTARY THERAPIES
AND MEDICAL MARIJUANA IN PAIN"
BOOK LAUNCH:
"Working Together When Facing Chronic Pain"
(event discount, $43 per book, cash only)
Saturday, October 30: 1-4 PM
Linhaven Hall
403 Ontario St.
St.Catharines, Ontario.
Driving directions: Take QEW to St. Catharines, exit north on Ontario Street, pass Tim Hortons on right, turn left at green Linhaven sign. Locate flagpole and enter sliding silver doors. Turn right inside lounge and follow signs.
**AD CORRECTION: Leaf tickets are not $5 as erroneously reported by the Niagara This Week's What's Happening column.
PARC'S WISH LIST 2011
Please read this list and if you can help in any way, we would be very appreciative.
- sponsors for our educational programs for 2011
- sponsors for doctor education programs across Canada
- volunteers to promote awareness across Canada
- volunteers to start support groups (support group kit provided)
- volunteer speakers for presentations on CRPS (Power Point provided)
- person(s) with fundraising experience, publicity, board experience
- person with webmaster experience
CONTACT US AT PARC.
IMPORTANT NEWS BULLETIN:
New research has found markers for CRPS. this means that CRPS can now be diagnosed. From Boston, a skin biopsy (3mm punch biopsy) can detect distal nerve damage (distal portion of axons). From Haifa Israel, a simple saliva test can measure high levels of LDH (lactate dehyrogenase), the same substance found in heart attack victims. High levels of albumin are also found.
These tests are not yet available in Canada, however we hope they will be soon. Further details as they become available.
Watsu Therapy
"Watsu therapy is used in the management of chronic pain conditions that may not respond well to conventional therapies. As the weight of the body is surrendered to the water, tired joints and muscles are relieved of their load bringing pain relief and increased mobility.”
Watsu is water and shiatsu therapy developed in 1980 by Harold Dull, a shiatsu practitioner. Water promotes the flow of qi (chi) which is the body’s life energy. Watsu uses stretches. massage, and pressure point manipulation. The client is held afloat during treatment by a Watsu practitioner in warm water. The mind becomes quiet, the spine becomes loose and supple. Muscles are supported by the water. The client can reach a deep state of relaxation.
Watsu can be helpful for fibromyalgia, arthritis, fatigue, sleep problems, stress. anxiety, depression, headaches, and acute or chronic pain.
Therapy uses stretches, rotations, rhythmic notions, with breathing creating a “graceful water dance.”
Watsu can be a deep meditative state or facilitate a release of emotions. Warm water on the skin releases muscle tension, and the feeling of floating promotes calm.
“Watsu is a powerful tool for stress reduction, engaging the parasympathetic nervous system, the unconscious message centre that tells the body to slow down and rest.”
Effects of deep relaxation makes the heart pump slower and more efficiently, blood pressure is reduced, breathing deepens resulting in better sleep, less anxiety, and improved digestive function.
Groenweg et al : Regulation of blood flow in CRPS: clinical implication for symptomatic relief and pain management BMC Musculoskeletal Disorders 2009 10: 116
Abstract: During the chronic stage of CRPS impaired microcirculation is related to increased vasoconstriction, tissue hypoxia, and metabolic tissue acidosis in the affected limb. Several mechanisms may be responsible for the ischemia in chronic cold CRPS.
Discussion: The diminished blood flow may be caused by either sympathetic dysfunction, hypersensitivity to circulating catecholamines, or endothelial dysfunction. The pain may be of neuropathic, inflammatory, nociceptive or functional nature, or of mixed origin.
Summary: The origin of the pain should be the basis of symptomatic therapy. since the difference in temperature between both hands fluctuates over time in cold CRPS, when in doubt the clinician should prioritize the patient's report of a persistent cold extremity over clinical tests that show no difference .Further research should focus on developing easily applied methods for clinical use to differentiate between central and peripheral blood flow regulation disorders in individual patients.
PARC NOTE: Further studies on blood flow are being done at McGill University by Terrence Corderre, PhD, in conjunction with Dr Groenweg and colleagues in the Netherlands. In addition, Dr Gary Bennett PhD is measuring blood flow in the capillaries of deep tissues.
de Mos, M et al: Medical History and the Onset of CRPS Pain 139 (2009) 458-466
CRPS is now being linked to other diseases:
"A medical history of asthma, migraine and osteoporosis and a recent history of menstrual cycle related problems and pre-existing neuropathies were associated with CRPS. The association with asthma and migraine favours the existing ideas of neurogenic inflammation involvement in CPRS".
Rewiring Of Brain Responsible For Baffling Chronic Pain
Scientists peered at the brains of people with a baffling chronic pain condition and discovered something surprising. Their brains looked like an inept cable guy had changed the hookups, rewiring the areas related to emotion, pain perception and the temperature of their skin.
The new finding by scientists at Northwestern University's Feinberg School of Medicine, begins to explain a mysterious condition that the medical community had doubted was real.
The people whose brains were examined have a chronic pain condition called complex region pain syndrome (CRPS.) It's a pernicious and nasty condition that usually begins with an injury causing significant damage to the hand or the foot. For the majority of people, the pain from the injury disappears once the limb is healed. But for 5 percent of the patients, the pain rages on long past the healing, sometimes for the rest of people's lives. About 200,00 people in the U.S. have this condition.
In a hand injury, for example, the pain may radiate from the initial injury site and spread to the whole arm or even the entire body. People also experience changes in skin color to blue or red as well as skin temperature (hotter at first, then becoming colder as the condition turns chronic.) Their immune system also shifts into overdrive, indicated by a hike in blood immune markers.
The changes in the brain take place in the network of tiny, white "cables" that dispatch messages between the neurons. This is called the brain's white matter. Several years ago, Northwestern researchers discovered chronic pain caused the regions in the brain that contain the neurons -- called gray matter because of it looks gray -- to atrophy.
This is the first study to link pain with changes in the brain's white matter. It will be published November 26 in the journal Neuron.
"This is the first evidence of brain abnormality in these patients," said A. Vania Apkarian, professor of physiology at the Feinberg School and principal investigator of the study. " People didn't believe these patients. This is the first proof that there is a biological underpinning for the condition. Scientists have been trying to understand this baffling condition for a long time."
Apkarian said people with CRPS suffer intensely and have a high rate of suicide. "Physicians don't know what to do," he said. "We don't have the tools to take care of them."
The new findings provide anatomical targets for scientists, who can now look for potential pharmaceutical treatments to help these patients, Apkarian said. He doesn't know yet if chronic pain causes these changes in the brain or if CRPS patients' brains have pre-existing abnormalities that predispose them to this condition.
In the new study, the brains of 22 subjects with CRPS and 22 normal subjects were examined with an anatomical MRI and a diffusion tensor MRI, which enabled scientists to view the white matter. In addition to changes in white matter, the CRPS patients' brains showed an atrophy of neurons or gray matter similar to what has been previously shown in other types of chronic pain patients.
Apkarian said the white matter changes in patients' brains is related to the duration and intensity of their pain and their anxiety. It is likely that white matter reorganizes in other chronic pain conditions as well, but that has not yet been studied, he noted.
----------------------------
Article adapted by Medical News Today from original press release. Source: Marla Paul
Northwestern University
Article URL: http://www.medicalnewstoday.com/articles/131081.php
Chronic pain treatments more effective when taken together, new study shows
Combination of morphine with anti-seizure drug works better - at lower doses - than either drug alone, says Queen's anesthesiologist. Kingston, ON (March 31, 2005) - People suffering from chronic, debilitating pain caused by nerve damage or disease report better pain relief at lower doses of a combined drug treatment than from either drug administered individually, a new Queen's study funded by the Canadian Institutes of Health Research (CIHR) shows.
http://www.cihr-irsc.gc.ca/e/27637.html
Molecule To Treat Chronic Pain Discovered
Scientists create molecule to treat chronic pain
(MyUSTINET News) UPDATED 2008-08-27 U.S. scientists have created a synthetic molecule that they say could be used to treat chronic pain. The researchers say their new molecule--called AM1346--imitates, but is more powerful than, the brain chemical anandamide, which is found naturally in people and animals. Anandamide regulates pain, controls heart rate and blood pressure, and also affects mood and appetite. The scientists say their synthetic molecule may one day be used as a topical pain-relieving treatment.
http://news.usti.net/home/news/cn/?/tw.health.misc/2/wed/ds/Uus-pain.RaSR_IaR.html
CANADIAN PAIN SOCIETY SURVEY 2007
33% (about 1/3) of Canadians live with moderate to severe pain
1 in 6 have constant pain
1 in 5 experience pain daily
33% are depressed or anxious
30% have relationships which are affected
"1 in 4 Canadians suffer from chronic pain yet access to effective treatment for chronic pain is poor"
VETS AVERAGE THREE TIMES THE PAIN TRAINING THAN DOCTORS
Pain education varies in Canada. A CPS survey of 41 programs at 10 major universities found that:
Doctors receive an average of 19 hours in pain training
Nurses averaged 31 hours
Vets averaged 98 hours
"This poor level of education in pain just compounds the crisis of underrated pain in Canada" says Barry Sessle, CPS President.
For more info go to: www.painexplained.ca
EVIDENCE OF NERVE DAMAGE IN CRPS1**
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 he 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, D, 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
* PARC NOTE: This paper is the most significant study about CRPS/RSD since it takes us out of the psychosomatic or "all in your head" illnesses to proof that CRPS/RSD is a real, organic illness. (Of course, we all knew that anyway!)
If you are a patient reading this, please print it out for your doctor to read. We thank you.
*2009 UPDATE: Dr. Oaklander updated everyone on this important discovery on March 28th in Phoenix at the RSDSA Conference. See our PARC PEARL 2009 Spring issue for details.
Patients Spend Five Days in Coma to Manage Pain
Desperate Patients Undergo Risky Procedure as Last Resort
Defile's pain was a result of something called RSD, or Reflex Sympathetic Dystrophy, a chronic neurological syndrome characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. An injury Defile suffered during the accident brought on RSD, which sent his nervous system out of control and triggered pain signals that were out of proportion to reality.
Dr. Robert Schwartzman, professor and chairman of neurology at the MCP Hahnemann School of Medicine in Philadelphia, has researched RSD for more than 30 years. He says it's important to understand that this is not a psychological condition.
"That injury changes the genetics of the spinal cord," Schwartzman said. "It happens in children and it can happen to anybody. And it is absolutely not psychological."
In DeFilippo's case, he says the pain was paralyzing — often sending him into blackouts.
Lindsay Wurtenberg, 14, says her life was turned upside down by RSD after she was bitten by a spider. She ended up with such crippling pain that she needed a wheelchair.
"It just kept getting worse and worse and worse every week," Wurtenberg said.
DeFilippo, of Langhorne, Pa., and Wurtenberg, of Mickletown, N.J., turned to a new treatment, only being offered outside of the United States, when they figured there were no other options left.
Both patients traveled to Germany, where doctors used huge amounts of the anesthetic ketamine to put them into a coma for five days.
The procedure is not performed in the United States because the Food and Drug Administration does not approve of coma inducement for longer than two days.
Schwartzman, the only American doctor working with the German team, says the anesthetic — when administered for five days — works wonders on RSD patients.
What we're doing is changing your spinal cord back to normal. The downside is, yes, it's very risky," Schwartzman said.
Risks related to the procedure include blood clots in the lungs and infections from catheters. But Wurtenberg's mother says the risky process gave her daughter her life back.
Schwartzman says that while the procedure has helped Wurtenberg and DeFilippo, it hasn't helped every patient with RSD.
He says the process only blocks the extreme pain patients experience, but doesn't fix the underlying problem. As a result, the pain associated with RSD can return.
DeFilippo says the procedure has completely changed his life.
"Luckily enough, I was given the opportunity to be able to undergo the treatment and it virtually has changed my life," DeFilippo said. "I was in such a state of agony. My life — quality of life — was nonexistent. Now I have everything looking up for me."
ABC News affiliate WPVI in Philadelphia contributed to the "Good Morning America" report.
PLEASE NOTE: This procedure is not yet available in Canada. PARC is monitoring this situation closely.
NOTE: This treatment is now available in Mexico through Dr.A. Kirkpatrick at the RSD Foundation: www.rsdfoundation.org. Most Canadian provincial health plans will not pay for the treatment except in Ontario where a portion is paid towards the cost.
Complex Regional Pain Syndrome
By
Robin-Lynn MacNeil
I met my husband in June of 2004 and moved to Canada for the summer. We got married in November 2004 in the small rural Kentucky town of Greensburg. After hours of sorting through my personal belongings, we packed what I could not live without into his car, and put the rest into storage. Happily, and with wide eyed wonder we began the sixteen hour drive to Kingston Ontario, Canada to begin our life together.
I was unable to work after moving to Canada due to Immigration regulations, so my first few years were spent exploring and settling in. I look back now and have to laugh at some of the little things, like waking up my first morning in Canada and looking at the weather channel and it said 23 degrees. It was quite the shock. I quickly went and woke up my husband and asked... “Just how far north did you bring me?” He opened one eye and simply said “Celsius. Dear”Or my panic attack the first time I went to the grocery store. It was by accident I’m sure but every label I saw was turned so that only the French side was visible I called my husband in tears only to have him laugh and say “honey turn the can around”.
Today that seems like such a long time ago. My Immigration is now finished and I am currently working on becoming a Canadian citizen. It has always been a dream to own our own home, and in 2007 we have moved out of the small apartment and bought a small hobby farm west of Kingston, where we have two dogs and several cats. Life for me could not be more perfect. I even started my own landscaping business. With a rapidly growing client list, I was going to have to think about hiring someone in the spring.
But that all changed in the winter of 2008 when I slipped on the ice and felt something go snap in the left ankle. I went to the Emergency room where they told me that it was just a sprain and asked me why I was walking with my foot turned almost 90 degrees to the left since it wasn’t broken. I told them I didn’t know. The Dr. put me on crutches and sent me home. Everything seemed to get better. Within a few weeks the pain lessened and I was able to walk on it. The foot evened straightened some, but the strength and stability never returned. For a Landscaper it changes everything.
I didn’t think too much about the pain in the beginning, after all it was a severe sprain. I knew it was going to take a long time to heal. I took it easy on the leg that summer and took on a lighter workload taking more time at each job instead of going like I’m fighting fire like I always had before. I would jokingly tell my regular clients... “I might be a little slower but that just makes me more efficient than ever.” With my friends I would laugh and say “Aw heck I’m middle aged, I’m 45 years old. As much as I have abused my body over the years it’s about time things start breaking down. By the time fall began to settle in the leg was much better and my husband bought me a membership at my favourite gym for Christmas. I was thrilled because I could work on those trouble spots and catch up with a close friend who was also enrolled there.
In January of 2009 I went to the gym for the first and last time. I started slowly. After the 30 minute warm up everything was going good until I got to the leg press. I started out with over 100 pounds with the good leg, it was fine. I dropped to the minimum of 20 pounds for the other one. With the first extension I felt a hot searing pain in the ankle as I felt it snap again. The whole leg went numb as nausea and light headedness set in. I sat there for what seemed an eternity before trying to move it. My heart sank as I hobbled to the locker room. I cried all the way home. I wasn’t looking forward to another lengthy recovery time.
Weeks passed with no decrease in the pain level and the swelling wasn’t going away, in fact the foot would become colder and turn purple for no apparent reason. I also began to notice that I couldn’t feel parts of my leg and other spots were hyper sensitive. My leg was also becoming shiny. I waited to see if the symptoms would go away before going to the Emergency room again. After x-rays I was told that it was just a bad sprain. I spent the whole winter on crutches with a purple foot that stayed as cold as ice and felt like it was asleep. By spring I began having lightning bolts shooting from my toes most of the time.
By April there was still no difference so I called my doctor, No appointments until June. I went back to the Emergency room and sat for six and a half hours before becoming so frustrated that I gave up. I called my family Doctor the next morning and explained that I had gone To the ER the night before. I told the receptionist that my leg was purple and could she please try to fit me in. I was seen that afternoon. My doctor looked at my leg and immediately and called the ER. After several hours everyone in the ER agreed that there was something wrong although no one knew what. I was sent to a specialist in a pain management clinic.
After months of severe pain I was so relieved when the doctor told me I had Complex Regional Pain Syndrome that I just said “Cool. At least it’s not in my head, and it finally has a name.” For some reason I thought that if it had a name than I could fight it. And win. After all, I have always been, as my mother would say... “Healthy as a horse, strong as an ox, and stubborn as a damned ol’ mule.” I was physically fit, although I had a few extra pounds that I could never seem to shed no matter what I tried. I had always worked at hard manual labour jobs... the harder the job, the more I liked it. I prided myself on being able to work like a man and could out work most. With a higher than normal pain threshold not much could stop or even slow me down when I set my mind on doing something. I just did it.
Once I was diagnosed with Complex Regional Pain Syndrome. I was sent for an MRI (which showed severed ligaments that can’t be fixed because of the CRPS). The doctor wrote a prescription for pain medication and sent me to Physiotherapy. When I asked him about CRPS he said that it affected the nerves and that not much was known about this very painful progressive and debilitating condition. He said that I could find more information than he could give on the internet. I did just that.
I found that CRPS is no respecter of person. While the average age of people was 40 -60 years old CRPS can also strike infants and children. Women are three times more likely to develop CRPS as men, and that while many people are diagnosed with CRPS after a trauma there are as many cases where the onset cannot be associated with anything, and the severity of CRPS varies from person to person.
Doctors don’t know the cause of CRPS, and diagnosing it is very difficult. Because, in the early stages the symptom are few or mild often resembling other conditions like a simple pinched nerve, that will better over time. Spontaneous remission can also occur in some people. Unfortunately most people with CRPS experience unrelenting pain in spite of treatment.
CRPS has been called many things since it was first diagnosed over one hundred years ago. One of the more recent is Reflex Sympathetic Dystrophy Syndrome (RSD). There is no single diagnostic test for CRPS so testing must be done to rule out other conditions. Some doctors stimulate the affected area using the pin prick test or heat and ice. These tests only aggravated my already swollen and purple splotched leg sending intense lightning bolts shooting from my toes. There are two types of CRPS type1 and type2. They both have the same symptoms only the cause is different.
With type1 there is minor or less severe trauma to the limb, causing pain that is much worse and lasts long after the injury has healed. Type2 is when trauma comes from a severe injury where major nerves are affected. This is the only difference between the types. There is no difference in the degree of pain. There is no cure for CRPS and there is no treatment that gives continuing long term relief. Perforce, Lyrica, Morphine and other high powered pain medications provide temporary relief making it possible for some of us to live and function in society.
For those of us who suffer from this excruciatingly painful condition few treatments are available. In the early stages physical therapy and psychotherapy are helpful if begun within the first few weeks after diagnosis. Unfortunately this is not the case with me. Sympathetic nerve blocks might help some people but generally only last one to two months. Personally for me this is not an option due to the risk of infection or paralysis from sticking a needle into my spinal column so often with no guarantees. There are also other things like surgical sympathectomy and spinal cord stimulation and finally internal drug pumps. In the end there is nothing that can be done except to make the person as comfortable as possible.
CRPS is not a terminal disease so the sufferer is left to live their whole life in constant, often mind altering pain. Pain is measured on the Mc Gill Pain Index from 0-50. According to this scale Cancer has a pain rating of 28 on this scale, while CRPS has a rating of “a whopping 42”. Most of us who suffer from CRPS must not only deal with unremitting continuous pain but we must also deal with depression, anxiety, loss of friends, loss of mobility, anger and despair over limbs that are painfully wasting away and no longer do what we tell them to do. CRPS pain is constant unrelenting twenty four hours a day, seven days a week. One out of every sixty people worldwide is at risk of getting this life altering condition. With some conditions this would be epidemic proportions. While early detection and treatment may be helpful much more research must be done to help understand CRPS. McGill University and Montreal General Hospital pain center as well as The National Institute of Neurological disorders and stroke (NINDS) in Bethesda Maryland are just two of several places in North America that are conducting studies while there are other teaching hospitals around the world are doing research through grants.
I never thought that anything that could keep me down, but in the months since my diagnosis I have watched CRPS begin to take over my life. I am one of the lucky ones. I have a great team of doctors and a wonderful supportive husband and family. Unfortunately there are many people who must face this devastating condition alone. CRPS can happen to you, a friend, or a family member at any age, anytime, anywhere and for no apparent reason.
Many doctors are still unfamiliar with the CRPS commonly mistaking it for something else. So if you or a loved one suffers pain that doesn’t seem to fit the injury or persists longer than normal, experience unusual swelling or color and temperature change in your hands, feet or other part of the body, don’t wait; seek the advice of your doctor and ask him about CRPS.
More information can be obtained through:
P.A.R.C. (Promoting Awareness of RSD and CRPS in Canada)
www.rsdcanada.org
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NOTE: Robin-Lynne is a freelance writer living in Napanee, Ontario.
She can be reached at: Lynne_west2000@yahoo.com
IN MEMORIAM
Canadian RSD Network President Mel Martin has passed away. Mel started the first Canadian RSD/CRPS charity in Courtenay B.C. Mel, a CRPS patient for many years, was also a tireless worker for CRPS education, awareness and support for patients. He will be sadly missed especially by those in the RSD/CRPS community.
An online Memorial is being created in memory of Mel. To contribute photos, stories and other memorabilia, please contact:
Adina Monson
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