Patients Have New Internet Resource
boy sprains his left ankle playing baseball.He toughs out the
rest of the game, but afterward he tells his mother that it
hurts. Because her two older sons have sprained their ankles
what seems like a million times before, she tells him to keep
ice on it and rest.
A week later, the boy’s ankle still bothers him and
has turned blue.Thinking a bone may be broken, the mother takes
him to the emergency room for X-rays. After a long wait, the
results finally come back negative for a break.The boy goes
home with directions to stay off the ankle and keep icing it.
Within a matter of weeks, his entire left leg has turned blue
and cold, and he can no longer put any weight on it. No doctor
can explain the strange phenomenon causing him so much pain.
Some go so far as to say amputation might be in order. Luckily,
on their fourth specialist visit, the mother and son find out
he is suffering from reflex sympathetic dystrophy (RSD), also
known as complex regional pain syndrome (CRPS).
Web site for the International Research Foundation (IRF) for
RSD/CRPS, www.rsdfoundation.org, provides good general information
about this crippling disease.
Web Site Overview
Web site offers a substantive general background on RSD/CRPS,
a painful neurological disease characterized by severe burning
pain, pathological changes in bone and skin, excessive sweating,
tissue swelling and extreme sensitivity to
The cause of
RSD remains unknown, but Anthony F. Kirkpatrick, MD, PhD, who
chairs the IRF Scientific Advisory Committee, says RSD stems
from the sympathetic nervous system’s normal activation
To put the process in the simplest of terms:The sympathetic
nervous system ordinarily shuts down within minutes or hours
after an injury; when RSD sets in,however, the sympathetic nervous
does not shut down and begins functioning abnormally.
According to Dr.Kirkpatrick, the sympathetic outflow appears
to cause pain by directly stimulating receptors on pain fibers.These
events are believed to produce more pain, leading to more stimulation
of the sympathetic nervous system, which triggers another response
and establishes a cycle of pain.
changes directly attributable to the abnormal sympathetic nervous
system function may occur and subside over time, including changes
in skin temperature and/or color, changes in sweating patterns,
piloerection and swelling.
The Web site also discusses available RSD treatments. In every
case, treatment should begin with patient education.The site
also advises clinicians to minimize patient pain as much as
possible, while encouraging patients to use their limb normally
through physical therapy. If mobilization proves futile, the
next step in treatment—sympathetic blocks—may be
Sympathetic blocks work through the injection of local anesthetics
(e.g., lidocaine, bupivacaine) near sympathetic nerves to temporarily
reverse the abnormal function and relieve the patient’s
According to Dr. Kirkpatrick, the best way to conduct sympathetic
blocks is in sets of three (one to two weeks apart). If, after
six sympathetic blocks, the pain improves, but only temporarity,
then a sympathectomy may be the treatment of choice. See Figure
for a graphic representation of the treatment cycle.
Web Site Layout
site offers a user-friendly, easy-to-navigate introductory page
that has four language options: English, Spanish, German and
French. Once you are in the language section of your choice,
information is available in either video (in both downloadable
and streaming format) or transcript form. Both forms
have four sections: a message from the foundation’s president,
a section on RSD’s effects on children, highlights of
a panel discussion on the emotional consequences of the disease
and how visitors can help the foundation.
a web video, Dr. Kirkpatrick, founder of rsdfoundation.org,
demonstrates various sympathetic nerve blocks.
sections, which are more pertinent for medical professionals,
are only available in text.They include more detailed medical
research on treatment effectiveness, the third edition of
clinical practice guidelines and research updates.
You’ll also find listings of the Board of Directors
and the Scientific Advisory Committee, as well as the foundation’s
mission statement and contact information.
the Web site does examine the challenges doctors may face
when dealing with children afflicted with RSD, its strengths
lie elsewhere. According to
P.Sebastian Thomas,MD,Professor of Anesthesiology
and Director of Pain Treatment Services, State University
of New York Health Science Center at Syracuse College of Medicine,
Syracuse, N.Y., “The majority of the Web site is geared
toward patients or laypeople who are interested to know more
the syndrome and how they interact with this disease:their
disability,their pain and the emotional aspects of the disease.”
Robert B. Steinberg, PhD,MD, Chief of Pain Management Services,
Baystate Medical Center, Springfield, Mass., agreed with Dr.
Thomas, but thought that even though the Web site has a wealth
of information for laypeople, it could be useful for
physicians as well.
Dr. Kirkpatrick says that, according to recent research, it
is essential that both physicians and patients alike understand
the clinical information.“One of the major reasons why
physicians do not follow clinical practice guidelines is that
most are not concise enough for both physicians and patients
to read, understand and follow,” he said. “I think
the section on diagnosis is pretty good,” Dr. Steinberg
says.“The most important thing for non–pain physicians
to know is to make the appropriate referral early in the course
of the syndrome. For primary care doctors, this kind of resource
is quite important, because you can avoid the irreversible
end stages.” Perhaps
the most powerful area of the site is that dedicated to a
panel of four children who either suffer from RSD or have
beaten the syndrome after undergoing their treatment progression.
girl was cured after three sympathetic blocks, combined with
psychological and physical therapy. Another girl had to undergo
the same, plus a sympathectomy, to find relief.
a web site video, 15-year old Amanda Alberigi discusses
how a sympathectomy cured her of RSD of the right upper
and hearing the troubles these young people have gone through
provides a way for doctors to appreciate the plight of children
dealing with RSD.“It gives a good patient perspective,”
Dr. Thomas said.“They are describing what we [doctors]
do and the emotional conditions they go through. The section
on pediatrics is well done. It has nice interviews with
the children—I like that part.”
The diagnosis should be established as soon as possible since
treatment is thought to be most effective early in the disease
According to Dr. Kirkpatrick, doctors have yet to put a specific
clock on how early you must catch the disease to cure it because
it is a fluid condition that changes from patient to patient.Dr.Kirkpatrick
has cured some war veterans who have been afflicted with RSD
for upward of 50 years, but conversely has not been able to
cure individuals who have suffered for only one or two years.
“Overall, I’d give it an A–,” Dr.
Steinberg says. “Its most compelling strength is that
there’s not anything else close to this Web site in
terms of quality and comprehensiveness.”
Based on interviews
with Anthony F. Kirkpatrick, MD, PhD, P. Sebastian Thomas,
MD, and Robert B. Steinberg, MD, PhD.
International Research Foundation for RSD/CRPS is a 501(c)(3) (not-for-profit)
organization in the United States of America.
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