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 the pain.

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 taken seriously.
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 ulcers.

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 by RSD.