A Friend Addressing Reflex Sympathetic Dystrophy

My friend asked if I would post this to the site. I asked him to explain RSD, as some many not be familiar with this. He wrote and explained:

RSD stands for Reflex Sympathetic Dystrophy, the disease affects the nerves that send pain impulses to the brain, so that they fire all the time. It also affects the temperature regulation and circulation of the affected body parts.

Here is the content of his letter:

I have RSD from my lower back down both legs to my feet. It all started with a Bursectomy (surgery) on my right knee. I suffered with this disease for two years, 14 months of it, in a wheelchair, in so much pain it was everything I could do just to stand, and spent one winter only able to wear soft shorts, and nothing on my legs or feet. When the RSD started spreading after my knee surgery, three different doctors told me to stay off my leg, and keep it as immobile as possible, which was the worst thing I could have ever done.

I went to a pain specialist in Lewes, DE named Dr. Antony who diagnosed me correctly with RSD. During my consult with her, she told me that it was a good possibility that I would lose my right leg due to inactivity and decreased circulation. From that point, I started Lumbar Injections and desensitization physical therapy. It didn’t do very much for pain, but allowed me to keep my leg. The RSD then spread to my other leg and lower back over a period of three months.

As far as medications, I was taking 60mg of Methadone, 3600mg of Nuerontin, Cymbalta, and many Percocets a day by the time I went to Johns Hopkins Pain Center in Baltimore, MD. Dr. Antony suggested that I go there, in hopes that they would be able to give me more pain relief with a Spinal Stimulator. I received a spinal stimulator on 11/28/08. Right out of recovery, my feet were warm and tan, compared to purple and ice cold, and that night I tried to walk to the bathroom, and was amazed that I could. I am not completely pain free, I am taking 1800mg of Neurontin, the Cymbalta, and 3-4 5mg Percocets a day. Yesterday, I wore sneakers and a pair of jeans for the first time in two years. If it wasn’t for Dr. Christo and his team, I would still be in a wheelchair, with my legs and feet wasting away.

I know that I am lucky, as some stimulator surgeries don’t work, and I am not bragging, I just want people to know that there is hope out there. You will see this letter several places, as I am not a great writer, and am going to copy and post this as many places as possible in the hopes that it might help others in pain. Thank you for your attention to my story. If you have any questions for me, my e-mail is wakeenyan@yahoo.com . I will try to answer any questions, or give you some good sites that may help.

With love and hope,
Elwood Wharton

In another letter, he indicated that there was a site that helped his family greatly. It is American RSD Hope. He wrote, “if you do go there, read the ‘letter to family and friends’ it really lays [the disease] out in layman terms.”

If you write to him, please tell him you read his letter on That’s Elbert. Thanks.