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 INTRODUCTION
More and more articles are being published on RSD/CRPS
in the Canadian press. For a recent collection from the major
newspapers, please see Articles 2001-1994. Below is a small collection
illustrating the many faces of RSD. The first and second article
refer to the recent July Conference in Toronto. The third one
is an account of one person's life with RSD. The last one describes
a patient who received treatment within the first six months of
onset.
PAINFUL DISORDER A MYSTERY
Conference organizers hope to raise awareness about RSD syndrome.
by Allison Lawlor, Standard Staff July 27, 2000 A6
The aim of a three day conference now under way in Toronto is
to shed light on an uncommon debilitating disease."There
is very little information on RSD." said Helen Small, a conference
organizer. "Doctors aren't educated, They don't know how
to recognize it or diagnose it."
The conference, which started today, is an effort to help provide
doctors with more information on Reflex Sympathetic Dystrophy
Syndrome (RSD).Small expects between 100-150 people to attend
the three day meeting.The St. Catharines resident, who suffers
from the syndrome, is the Ontario contact for the Canadian RSD
Network. The Network, along with the RSD Association of Ontario.
and the Reflex Sympathetic Dystrophy Syndrome Association of America,
organized the conference. Speakers include medical experts from
the US and Europe.
David Leprich, a St. Catharines chiropractor, will speak on
Saturday about how he treats patients with the debilitating disease."It
is not really a common condition," said Leprich, who treats
about three local residents with the syndrome. "It is not
something that can be cured."
The American RSD Association estimates the disease could affect
millions of people in the US.The disease, also known as Complex
Regional Pain Syndrome, is frequently the result of a minor accident
like a sprained ankle.Following the trauma, the affected body
part swells like it would under normal circumstances. But in people
who develop the pain syndrome, the body's reaction to the minor
accident is debilitating.The most common symptom of the disorder
is burning pain. Other symptoms include swelling, temperature
and color changes to the affected area, severe sweating and reduced
ability to use the affected area. Symptoms usually occur in a
limb but can also occur in other parts of the body such as the
face.
"The response is way out of sync with the injury,"
said Leprich. "Nobody has come up with a definite answer---why?"
The St. Catharines chiropractor treats a woman who developed the
disease after dropping a can on her foot. Excruciating pain spread
from her foot up through her leg to her hip," said Leprich.
"Chiropractic is good for maintaining and increasing motion
and helping a person to deal with pain," said Leprich. Leprich
usually treats a patient with the syndrome every three to six
weeks. Through manipulation, the soft tissue and nerves around
the joints relax and the pain is eased. Other treatments include
medication which blocks nerve impulses, pain management techniques
and physiotherapy to maintain muscle mass in the affected area.
Early diagnosis of the syndrome is essential, If a person is
not treated within six months of developing the disorder, it is
likely to spread and become a life-long, chronic aliment, said
Small. Following the conference, Small hopes to organize a support
group in Toronto for patients with the disorder. She believes
there are about two dozen sufferers in the city. If there is enough
interest, she also plans to start a group in St. Catharines.
(reproduced with permission from Doug Firby, editor
of the St. Catharines Standard)
RSD EXPERTS LAND HERE
Mississauga News: Community News: Southwest Edition Section
C
by Tom Michibata
Linda Dollimore's quality of life will never be the same. The
34 year old Mississauga resident has trouble performing keyboarding
functions at her job, because she has lost the feeling in her
thumb and first two fingers of her right hand.Away from the office
she can no longer play golf or baseball. She can't grip the club
or bat properly because she's lost the feeling in her right palm.She
can't sleep through the night, and she has become highly irritable.
She has trouble remembering things. Dollimore is one of the growing
number of Canadians who are afflicted with a little known but
debilitating nervous system disorder called Reflex Sympathetic
Dystrophy (RSD) that causes chronic pain. The sympathetic nervous
system controls bodily functions like perspiration.
The Canadian and US RSD Networks are jointly holding an international
conference this weekend (July 28-29) at the Marriott Hotel on
the airport strip at 901 Dixon Road.Information on current treatment
and the latest research developments will be discussed. Eight
doctors from the US, The Netherlands, and Ontario will speak and
conduct workshops.
Triggered by a trauma to the body--it could be surgery or even
a sprain--nerves in the sympathetic that are damaged leave the
victim with a chronic burning sensation, usually in the arm or
leg, according to St. Catharines chiropractor David Leprich, a
conference speaker."In severe cases, it can be disabling
pain. People uses canes or crutches and they are unable to carry
on a normal life. They may lose muscle mass and can develop osteoporosis"
Leprich said.
It's critical that people diagnosed with RSD get immediate treatment.
According to Dr Peter Veldman of Holland, who will be at the conference,
85 per cent of cases treated in the first six months are successful.
From six months to two years, the rate of successful treatment
drops to 70 per cent. Meanwhile, RSD can spread throughout the
body.
Dollimore is considered a rare case in that, while her treatment
was delayed--she was diagnosed with RSD after two years--she was
still able to eliminate the burning sensation that's associated
with RSD.In her case,it was triggered by a bite on her baby finger
from a pet mouse. She underwent surgery to have nerve cells removed.
"It used to feel like my hand was on fire. At times I felt
like chopping off the hand".
Canadian RSD Network President Mel Martin of British Columbia
says RSD isn't widely recognized in Canada. According to studies.
50 per cent of cases go undiagnosed because doctors don't know
what it is.Martin says one of every 1,000 Canadians suffers from
RSD.
(reproduced with permission)
MYSTERIOUS DISEASE LEAVES
PEOPLE IN PAIN
It's misdiagnosed because many doctor's don't know about it
by David Olmos, Special to the Star (article appeared in LA Times)
August 21, 1998. p. F8
A 21 year-old ballerina and actor with aspirations of a show-business
career, Cynthia Toussaint was stretching on a ballet barre when
she felt a sharp pain in her right leg. Doctors told her it was
a torn hamstring--- a common injury for dancers---that would heal
with time and rest. But as weeks passed, the pain didn't ease;
it grew steadily worse. She didn't know it at the time, but Toussaint
would see her injury result in a devastating illness that would
end her dreams of a career in the spotlight and, eventually leave
her disabled and relying on a wheelchair. It also began a harrowing
15 year encounter with a medical community that often fails to
properly diagnose and treat little-known illnesses. "I had
this wonderful life planned," says Toussaint of North Holly
wood, California. "After I got sick, I was left in this constant
, horrible pain and I knew it was all over."
Doctors say Toussaint has a controversial medical condition called
reflex sympathetic dystrophy, or RSD. Recently, doctors who specialize
in treating RSD have begun describing it by various other names,
including "complex regional pain syndrome, type 1".
The new name reflects still evolving research into the condition
and it causes, diagnosis and treatment. There is significant disagreement
about how to diagnose the illness, since there is no single test
that proves a person has RSD. "RSD is definitely underdiagnosed
because it is still not well-known," says Dr Joshua Prager,
a Santa Monica anesthesiologist and former director of the UCLA
Pain Medicine Center. "This condition was described in vivid
detail 130 years ago, but for some reason, it's still not taught
in medical schools." The condition often begins with an injury,
as minor as a sprained ankle or as traumatic as a broken leg.
An early warning sign is pain that does not go away and is more
severe than would be expected.
"There is an unbelievably dreadful burning pain and heat
associated with this condition," says Dr Michael Stanton-Hicks,
an RSD specialist who heads the pain center at the Cleveland Clinic
in Ohio. Swelling, unusual hair and nail growth, and changes in
skin temperature and texture near the site of the injury are some
of the other symptoms. One of the many mysteries of the disease
is how a relatively minor injury can touch off a devastating illness
in some people but not in others. A few researchers believe some
people may have a genetic predisposition to RSD. When diagnosed
early, and treated aggressively, RSD is often put into remission,
medical experts say. When left untreated for several months, or
longer, the likelihood of successful treatment falls off sharply.
In severe cases, patients suffer intractable pain that leaves
them bedridden. They are unable to tolerate the slightest touch,
even being covered by a bed sheet is excruciatingly painful. Muscles
and joints waste away, immune systems weaken and arms and legs
go into disfiguring contractions. Many patients must battle bouts
of depression; some commit suicide.
RSD patients describe years of being bounced among specialist
without a diagnosis or useful treatment, experts say. When patients
finally do find a doctor familiar with the disease, their condition
has often deteriorated to the point at which treatment is difficult,
expensive and ineffective. This leaves them angry and distrustful
of the medical system. "I've had some patients who have seen
20 doctors," says Dr. Edward Carden, a pain specialist at
Centinela Hospital Medical Center in Ingelwood, California. Many
patients are seen by orthopedists, "who do a nerve conduction
study that appears to be perfectly normal. Then they'll tell the
patient; 'Go see a psychiatrist "
Toussaint was a patient of Kaiser Permanente form the time of
her injury in 1982 until this past December. She was also covered
by the hospital's own health insurance plan. Pressing a malpractice
suit against Kaiser, Toussaint contends that a series of Kaiser
doctors failed to diagnose her condition and that the delay cause
her condition to steadily deteriorate to the point where she was
virtually bedridden. Kaiser doctors early on labelled her condition
as psychosomatic, saying that she was making it up, that she didn't
want to get well or had "tendinitis from Mars". Kaiser
contends that Toussaint suffers from "chronic pain syndrome"
but that her symptoms have a significant psychological component"
Dr. Angela Mailis, an RSD specialist who heads the pain center
at Toronto Hospital, says RSD has become a "wastebasket"
diagnosis to describe patients with a complex mix of physical
and psychological problems. In a three-year study published in
the Clinical Journal of Pain in 1994, Mailis and researchers at
the Toronto Hospital concluded that only 107 of the 206 Canadian
patients previously found to have RSD actually had a nervous system
disorder. The condition of the remainder had been misdiagnosed.
These patients were later found to have a variety of musculoskeletal,
psychiatric and other disorders.
Toussaint's condition was diagnosed by Carden of Centinela Hospital.
Her treatment includes painkillers, physical therapy, and psychiatric
counselling for depression. Tousssaint says she's now able to
walk, ride in a car and sit upright for short periods. She and
her partner of 17 years have been able to take short vacations.
"I've lived my life for so long looking out of the window",
Toussaint says, "I've gone from no quality of life to some
quality of life. Going into a restaurant used to be a dream to
me and now it's a reality."
(reproduced with permission)
QUICK CARE ASSISTS CURE
Winnipeg Free Press January 30, 1995 p. C1
by Allison Bray
NOTE:Dear Readers: Be aware that the person depicted in this
article had early stage RSD/CRPS and therefore received treatment
within the first few months that are so crucial to treatment.
When it comes to treating RSD, proper diagnosis and treatment
can make the difference between almost complete recovery or lifetime
disability, according to health-care experts. Because reflex sympathetic
dystrophy can lead to irreversible damage, such as wasting of
the affected muscles, contraction of tendons and osteoporosis
- it is imperative that RSD be treated properly and as aggressively
as possible, says Dr. Howard Intrater, director of the pain clinic
at the Health Sciences Center. Cathy Watt, a HSC physiotherapist
specializing in hand injuries, says while physicians are becoming
increasingly aware of RSD, she sees about one patient a year who
was not initially diagnosed with RSD.
DEVELOPED RSD: Intrater cites the case of a native man in his
early 20s from northern Manitoba who developed RSD after getting
a bone stuck in a finger while cleaning a fish.The man never got
initial treatment, even though the symptoms persisted to the point
where he kept his hand in a glove for about six months to ward
off any stimuli that would trigger the burning pain. Eventually,
the man was flown to the HSC for treatment, but he wouldn't allow
doctors to insert an IV into his hand to provide drug treatment,
because the pain was so severe."He just went back up north,"
Intrater says. "He's still living as he was, with the glove
on his hand.
If it's not treated, it can result in the loss of a limb"
he says. But if the patient is seen during the first stages of
the disease, "with aggressive treatment and physiotherapy,
80 per cent of patients should have return of function".
"But if it's in the third stage, less than 50 per cent will
have a good response".
CAN RECUR: "RSD doesn't usually remain static, it either
improves or gets worse", he says.Even if a patient recovers,
RSD can recur if the patient has another injury or undergoes surgery.
Consequently, he says it's prudent for people who have experienced
RSD to have their sympathetic nerves frozen prior to surgery.
Medical treatments range from electrical stimulation to beta blockers,
epidural stimulators (where an electrode is implanted in the spinal
cord to stimulate the affected area) to blocking the sympathetic
nerves with injections, Intrater says. Acupuncture can also be
effective in decreasing pain and improving mobility. However,
Intrater says the main focus is to block the sympathetic nerves
from releasing pain signals. Watt says physiotherapy is also a
key element in successful treatment.
(reproduced with permission)
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