Bounty of Hope 2005: Keynote Speech
By Ben Lynch
It wasn't until a few months ago
that I would take the time to explain that I have
RSD and attempt to explain what it is.
Before a few months ago, whenever
people would ask why I wasn't playing football anymore
or why I was limping, I would give them the easiest
answer. I told them
about my five knee surgeries and after that no one
would question why I was limping or why I would avoid
activities that would increase the pain in my leg.
My name is Ben Lynch. I graduated from University of California
at Berkeley in 1996 and afterwards was fortunate enough to
be able to fulfill my lifelong dream of playing in the National
Football League. I lived that dream until August 23. 2003.
While playing for the Houston Texans, I sustained a knee injury
in a preseason game against the San Diego Chargers. Injuries
are commonplace in football and as I walked off the field
on that 3rd down I was frustrated at the thought of missing
a week or two of the season with what I was convinced was
just torn cartilage. I did not have any idea at the time that
this would be my last down of football.
It turns out that I had torn my anterior cruciate ligament
and after five surgeries within a 6 month period I continued
to have complications. I grew increasingly frustrated when
after over a year had passed and the pain in my leg had not
gone away but actually increased. I'd had my share of injuries
while playing football, some more painful than others. One
of the ways that I coped with the pain of these previous injuries
was that I knew there was a light at the end of the tunnel.
I knew that the pain would decrease and be more tolerable
in a week than it was at that moment. There were other injuries
I had sustained earlier in my career that caused pain that
was so intense that it was difficult to think about anything
else, but that sensation would pass after a day or two. With
all of my previous injuries I had learned one thing, the harder
I worked at my rehabilitation the quicker I could get myself
back on the football field and also experience relief from
Initially, I was determined to get myself back onto the football
field while participating in physical therapy five days a
week. Then, after nearly a year of physical therapy with little
change in my condition, my doctors and physical therapists
became more and more concerned with the lack of bone density
and the decreased temperature of the skin on my left leg.
It was more than a year after I'd originally injured my knee
that I was first diagnosed with reflex sympathetic dystrophy,
RSD. Up until this point I had never even heard of RSD. My
doctors told me that RSD was a nerve disorder but couldn't
give me much more of a definition than that. After a week
of doing my own research I was more confused than when I had
started. There are literally hundreds of websites dedicated
to RSD and its potential treatment. Each website has its own
unique theory on the best treatment. After researching RSD
for over a year now I am only certain of one thing; not enough
is known about the disease.
Over 130 years ago, Dr. S. Weir Mitchell wrote a description
of RSD that is the best that I've come across. He wrote, "Perhaps
few persons who are not physicians can realize the influence
which long continued and unendurable pain may have on both
the body and mind. Under such torments the temper changes,
the most amiable become irritable, the bravest soldier becomes
a coward, and the strongest man is scarcely less nervous than
the most hysterical girl."
While the near constant pain of RSD is an overwhelming experience,
it is just one of the many issues that people with Reflex
Sympathetic Dystrophy must endure. Most people, including
many doctors, have never heard of RSD. It wasn't until a few
months ago that I would take the time to explain that I have
RSD and attempt to explain what it is. Before a few months
ago, whenever people would ask why I wasn't playing football
anymore or why I was limping, I would give them the easiest
answer. I told them about my five knee surgeries and after
that no one would question why I was limping or why I would
avoid activities that would increase the pain in my leg. I
now realize that others with RSD don't have as ready an explanation
as I do. There are cases of RSD stemming from the insertion
an IV needle into an arm or even slamming a finger in a drawer.
People with those injuries don't have the ability to show
the scars from five knee surgeries, which serves as the ultimate
visual aid. In fact, one of the definitions of RSD is that
the ongoing pain is disproportionate to the inciting incident.
Two years ago, I would have been skeptical of someone complaining
of intense pain in their entire arm originating from slamming
a finger in a drawer. After having experienced the levels
of pain associated with RSD first hand, I will never question
the pain threshold of someone else that also has the disease.
Another difficulty of RSD is that pain isn't a visible characteristic.
It is hard for many friends and family to understand and sympathize
with your symptoms when on the exterior you appear to be in
perfect health. As a former football player, I feel I have
an advantage over other people with RSD. Many of my friends
played football and have dealt with chronic pain. With that
pain comes limitations in their physical activity. If I am
unable to do something because of the way my knee feels my
friends understand why I can't participate without me giving
a ten minute explanation of my symptoms and pain level. RSD
should not have to progress to the point of its most visible
characteristics, some of which are ulcers of the skin or extreme
atrophy of the affected limb, for complaints of pain to be
Another hardship of RSD and the one that could be addressed
most easily is the treatment of RSD within the health insurance
industry. Many insurance companies rely on the American Medical
Association Guides to the Evaluation of Permanent Impairment,
Fifth Edition, to diagnose diseases covered by their health
insurance policies. Currently, there are eleven possible indicators
of RSD listed in this document. The American Medical Association
maintains that unless 8 of the 11 symptoms are present concurrently
at the time of examination then RSD cannot be diagnosed. Many
insurance companies will deny authorization for treatment
when a patients symptoms fall short of these guidelines. Dr.
Timothy Lubenow, Professor of Anesthesiology at Rush University
Medical Center in Chicago, stated that he has diagnosed and
treated hundreds of patients with RSD and cannot recall a
single case where a patient had eight of the symptoms concurrently.
The diagnostic information published by the AMA is supposed
to be unbiased, evidence based information that has been reviewed
by doctors. However, there is not ANY scientific literature
to back up the strict list of criteria that the AMA uses for
a diagnosis of RSD.
With a lack of compassion and funding from the medical insurance
industry it can be tempting to try alternative methods in
coping with the pain associated with RSD. These alternatives
can range from acupuncture to people traveling overseas to
countries where more drastic and experimental treatments are
used to treat RSD. Some people even go to more drastic measures
in an attempt to relieve their pain. One story in particular
comes to mind. One of the first people I ever spoke with who
also had RSD previously had worked as a coroner. He told me
that several years before he began suffering from RSD he had
performed an autopsy on a beautiful woman in her late twenties.
She had at one time worked as a model. During the autopsy
it was determined that the woman had died of a heroine overdose.
The skin of her upper body was covered in ulcers unlike any
he had seen before in all of his years working as a coroner.
He contacted the girl's family to get a medical history to
help explain the ulcers on her skin. The coroner learned that
the girl had been diagnosed with Reflex Sympathetic Dystrophy.
The ulcers on her skin were a symptom of her RSD. The girl's
family believed that she started taking heroine as a way of
dealing with the pain associated with her RSD. The coroner
found it difficult to believe that the level of pain the girl
experienced would warrant her use of heroine. He also wasn't
sure how ulcers could be associated with a chronic pain syndrome.
Now, the former coroner has no reason to doubt the level of
pain the girl had been experiencing. In the years that he
has been coping with RSD he has been prescribed morphine to
ease his pain. He has a spinal cord stimulator implanted to
scramble the signals of pain being sent from his leg to his
brain. And, unfortunately, he now suffers from the same skin
RSD is a medical condition that needs to be addressed further.
It can affect anyone, young, old, male or female. The first
step in addressing RSD is awareness. When I'm asked about
my limp, I no longer attribute it to just my five knee surgeries
or lack of anterior cruciate ligament. I take the time to
explain that I have RSD and what RSD is. I do that in the
expectation that if someone knows another person with RSD
that it will help them understand what that individual endures
daily with a chronic pain disease. It is my hope that the
money raised tonight will go toward research that will someday
lead to a cure for RSD.
RSD was first recognized by doctors during the Civil War.
It is often treated with the same methods today as it was
back then. The focus seems to be on masking the pain as opposed
to treating the cause of the pain. You don't turn up the radio
in your car to fix a rattle in the engine. Or to paraphrase
Dr. Anne Louise Oaklander, in an article from the October
10th issue of the New Yorker magazine on RSD, you don't treat
an abscessed tooth with just Novocain. You must find the source
of the problem and fix it. Although understanding the complexities
of RSD is much more challenging than fixing a car engine or
treating an abscessed tooth, I am hoping that money generated
from events such as this one tonight will bring the medical
community one step closer to putting an end to the pain caused