WELCOME TO THE
PARC!
As of February 25, 2010 we have added new items
throughout our site. We update frequently.
FEATURES: GET OUR
NEW DVD SET!
STAINED
GLASS ART CARDS
CRPS MRI STUDY JANUARY
2010
THOUGHT FOR TODAY:
Judge your success not just by what you have
accomplished
but by the person you have become.
Anon.
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
"TULIP"
ONE OF 8 UNIQUE DESIGNS
View
more...
CRPS AND
PAIN NEWS
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:
To download a form:
DVD
FORM
PLEASE NOTE:
Our system is currently being updated to better serve you.
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
CHAMSA (Design 3 of
8)
FALL (Design 4 of
8)
Can you find the other 4 designs hidden in the web
site?
To download an order form:
DVD/CARD
FORM
or
CONTACT
US AT PARC.
PLEASE NOTE:
Our online system is currently being updated to better serve you.
PARC
PEARL: WINTER ISSUE 2009-10
- Event Summary: OCT 31
event for NATIONAL PAIN AWARENESS WEEK NOV. 1-8
- "GOING
AFTER OXYCONTIN" by Willy Noiles
- WHAT IS PARC DOING? PARC
NEWS 2009
- Healing with Yoga
- MRS 2000: What is it?
- Fighting Fatigue
- Watsu Therapy for Pain
To order the newsletter: Download
NEWSLETTER FORM.
If you need
assistance
CONTACT US AT PARC.
PLEASE NOTE: Our online
transaction system is currently being updated to better serve you.
MRI
STUDY ON CRPS:
CRPS
PATIENTS NEEDED FOR
BRAIN
IMAGING STUDY
January 2010
Study Criteria
- CRPS in one arm
- 18 years or older
- fluent in English
- attend assessment at the clinic
- for more information:TEL: 514
398 7203 ext. 01630
- or e-mail crpsresearch@gmail.com
If you reside in the Montreal area,
this is your chance to make a difference and help the McGill researchers
unravel the puzzle of CRPS. Please direct your inquiries to the
number above.
For more information please read
the article below.
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 42215 Montreal
General Hospital Pain Centre
CANADIAN
LAWYER
REFERRAL
LIST
PARC is compiling a list of lawyers who deal with
CRPS/RSD.
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
MEETS FIRST TUESDAY
OF THE MONTH
DAY/TIME: Tuesdays
10:30 - Noon
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.
_____
SCHEDULED MEETING
DATES FOR 2010:
January 5, 2010
January 19, 2010 (Planning May Event Meeting)
February 2, 2010
February 9,2010
March 2, 2010 (
cancelled )
April 6, 2010
May 4, 2010
June 1, 2010
June 26, 2010 Special Event.
*SAVE THE DATE!
MARK YOUR CALENDAR!
A PRESENTATION OF
THE
CHRONIC PAIN SUPPORT
GROUP OF NIAGARA presents:
OPEN HOUSE: "PATH
TO WELLNESS"
DATE: Saturday, June 26, 2010
TIME: 1-4 PM
PLACE: Mills Room
St. Catharines Public Library
Church and James Sts.,
St. Catharines, Ontario
_____
Handicapped parking. Elevator. Public parking garage
beneath library complex.
Accessible by public transit or nearby Greyhound
Bus Lines.
Details to follow.
Exhibitors wanted. For more info please contact:WILLY
NOILES
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 Niagara Support Group Chair:
WILLY
NOILES
PARC'S
WISH LIST 2010
Please read this list and if you can help in any
way, we would be very appreciative.
- sponsors for our educational programs for 2010
- 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 realm of 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 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.
Percocet, 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
--------
NOTE: Robin-Lynne is a freelance writer living in Napanee, Ontario.
She can be reached at: Lynne_west2000@yahoo.com
ADVOCATING FOR PEOPLE IN PAIN
Hello there:
I write to your newspaper in hopes that you will write an accurate,
informed and non-judgmental article(s) about the topic of chronic
pain and its under-treatment as is the lived experience of many
people in legitimate pain, whose only pain relief comes from narcotics,
but who still suffer due to being under-prescribed.
My wife is disabled and has been suffering from debilitating and
under-treated chronic pain for the last 10+ years. While she has
several medical problems and experiences different kinds of pain
from all of them, one of her worst forms of pain is from RSD/CRPS
(Reflex Sympathetic Dystrophy / Complex Regional Pain Syndrome).
She falls into the group of people who cannot be cured of their
ailments and who simply require appropriate pharmacological pain
management in order to have a decent existence. While uncomfortable
and scary, the reality is that despite doing everything in our power
to be 'healthy', life circumstances and physical tragedies sometimes
just happen which are uncontrollable and worse yet, unfixable. This
is where pain management comes in, and luckily, drugs such as opiates
naturally exist that help ease the pain that incurable medical conditions
cause.
Because of media over-attention and subsequent paranoia around drug
addiction, pain patients like my wife end up under-prescribed and
suffer more than they already do due to paranoid doctors who are
quick to assume a patient is a "drug seeker" or a drug
addict rather than someone in legitimate pain, simply looking to
alleviate their suffering. There are many in this boat who are too
sick to do simple things like wash the dishes or do laundry, let
alone find the energy to fight against this legal, medical and social
injustice.
As far as medicinal marijuana goes, it effectively relieves some
people's pain, but not everyone's, because people have different
biological makeups. In my wife's case, she has been poked, prodded,
injected and prescribed almost every treatment and drug under the
sun in the last decade, including nerve block injections, whatever
popular drug is on the market at the time such as Lyrica and Celebrex,
and even anti-depressants (from non-understanding doctors who think
pain is "in your head"). Other than opiates, she has found
little to no relief from all of these treatments, and in some cases,
found her pain to be worse.
It is curious that many doctors are eager to prescribe some drugs,
but opiates such as fentanyl, methadone, oxycodone, etc. are under-prescribed.
Just as over-prescribing exists, so too does under-prescribing,
yet we hear almost nothing about this devastating phenomenon.
Opiates have very little if any damaging side effects when taken
long-term and as prescribed (i.e. not abused) versus drugs like
steroids, NSAIDs (non-steroidal anti-inflammatory drugs), or acetaminophen
(which damages the liver when taken long-term). Yet because of political
and media misinformation / miseducation, opiates are usually very
sparingly prescribed, resulting in extra and undue suffering of
those who *need* them (versus those who *want* them to *get high*).
Pain patients don't normally *get high*, and addiction is actually
extremely rare for this group. It is not right that people with
the mental illness of addiction get all the drug spotlight, because
the result is punishment via under-prescribing of actual pain sufferers
like my wife who if anything, need the MOST compassion and understanding
because they are such a vulnerable group, and one that you or I
can fall into at any time by virtue of being alive.
A parallel that I find most helpful in understanding the degree
of injustice is by looking at the pain treatment of advanced AIDS
and cancer patients who are dying. Because these people are on their
deathbed, they are usually prescribed pain drugs quite liberally
so that their last life stage is not horrific. Nobody challenges
this, nor should we, because no human being should suffer. So why
do people with similar or higher degrees of pain, but who are not
on their deathbed, not get the same medical treatment? Do they not
equally deserve to be free from suffering? In my wife's case, her
pain levels rank higher than cancer pain and digit amputation (as
rated on the McGill Pain Index) yet her amiable requests for more
medicine fall on deaf ears and judgmental eyes visit after visit,
year after year. If the answer is because of fear of addiction,
then again the spotlight unfairly shifts to drug addicts, and again
pain patients suffer the most. Addiction is a non-issue for those
in pain. Drug addicts choose to abuse drugs and often lie to doctors
get them, but the onus is not on doctors to babysit or police their
patients, or try to figure out if they're liars - their job is to
heal/treat patients, and the assumption should be that patients
are telling the truth, regardless of the actions of some bad apples.
The bottom line is that it makes no sense and is cruel to under-prescribe
those in pain who are honest and do nothing wrong.
Another uncompassionate popular buzz-term that my wife hears is
"push through your pain". Only people who don't understand
chronic pain would say such a thing (self included before I became
more knowledgeable on the subject). While do-able for some, not
everyone can 'push through their pain', and contrary to popular
belief, epsom salt baths, healthy eating, herbal supplements, etc.
just don't cut the mustard for this group, and such remedies are
akin to putting a bandaid on a freshly severed limb. Such high levels
of pain need proportionate treatment, and while conservative prescribing
works for conservative pain, it is ineffective for more radical
pain. Some chronic pain sufferers commit suicide because they are
under-prescribed and can't take being in pain any longer. But we
don't hear too much from or about them. How can we though, since
it takes everything they have to just breathe in and out everyday,
never mind educate the public on their reality and then combat the
judgment and minimization of their pain.
My journey with my wife at this point is trying to find a good pain
doctor (they exist, but are hard to find) who will listen compassionately
to her, pay attention, not assume she is a drug addict or lying
about her pain, and treat her like a human being who deserves to
be free from suffering. Only a person in pain knows how much pain
they're in, and doctors do harm when they ignore, minimize, or don't
believe their patient's pain reports.
It would be wonderful to see an article in your paper showing this
other side of drugs - not as 'sexy' a topic as addiction, but a
realistic and painful look at the consequences of the "War
on Drugs" which for many people, is more accurately a "War
Against Sick People". It would be equally great if you could
find and provide names and stories of compassionate doctors in the
GTA (and other parts of Canada for chronic pain patients across
the country) who prescribe drugs proportionate to patients' pain
levels, so that people like my wife a) don't spend time and energy
that they don't have in trying to find a decent doctor, and
b) don't feel alone in their suffering.
"Drugs Are Bad" rings true for us relatively healthy folk,
but drugs (when not abused) are actually GOOD for those who are
otherwise stuck in a hellish, painful existence. The more aware
the public is of this reality (which is probably hard to fully imagine
unless you're in these shoes), the less judgment and harm this marginalized
population will endure, and most importantly, the more appropriate
pain relief they will receive.
The media is a powerful tool, and with that power comes responsibility.
I hope that you find it in your hearts and capacity as truth-seekers
and reporters to disseminate this Truth and minimize the nay saying
(there is plenty out there as is) which takes away from the real
issue of getting pain sufferers appropriate pain treatment, because
as you read each word of this letter, my wife and thousands like
her continue to suffer, trapped in their pain-riddled bodies.
Many thanks for your time and consideration.
Sincerely & Respectfully,
Natasha Leytes
P.S. I am sending a similar letter to A&E network in hopes that
they consider creating a series or feature to counter their popular
program "Intervention" which only shows the drug addiction/'War
on Drugs' side of this story.
_______________________________________________________________________
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