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My Story of RSD
First of all I'm Jen. I am a college student and Luther College in Iowa. I am considered a senior, but I had to withdraw for a semester last year and so am doing my junior level classes right now. I was on the swim team here for my freshman and sophmore year. I unfortunately suffer from one of the least known diseases out there. Reflex Sympathetic Dystrophy is defined as a diffuse, persistent pain involving central reorginazation of sensory processing. It is characterized by by vasomotor disorders, limited joint mobility, and trophic changes. The condition usually follows an injury to an afferent pathway and affects an extremity(Mosby's Medical, Nursing, and Allied Health Dictionary).
My story is just like that of many others with RSD, I hurt myself and ended up with RSD. It wasn't something that anyone could prepare for, it just happened. The way it happened was this: I strained the arch of my foot while dancing. It didn't really hurt, but it was an annoyance. This happened in December of 1997. By February of 1998 I was having RSD pain but went undiagnosed til November of that same year, almost a full year after injury. When I started getting the pain I had my foot put in a walking cast because my doctors thought that I had torn the arch. That didn't help and the pain really flared up in March when I went to Disneyworld with my marching band. I was just barely able to make it through the 1/4 mile parade. Then my podiatrist decided to do a cortisone injection and that's when I decided to not see him anymore. I went without any treatment till September. I then went to one of the campus doctors here at school. I was put into a boot cast. I was suppose to wear it for a month and then that month spread into three months. It was then that I went to a pain clinic. I was diagnosed with RSD with two lumbar sympathetic blocks. Which was in November 1998. Then I had an epideral catheter placed in December and had a pump that delievered fetanyl and marcaine onto the nerve right by the spinal cord. The catheter was taken out on December 19 right before I hopped on a plane to Hawaii. I then had very little pain for the next two months. Then in March the pain flared up again and I had another lumbar sympathetic block and another catheter placed in April. It was pulled after an infection started. Then two days later the pain was back in full force and I got a lidocaine infusion. I was then placed on the oral medicine Mexitil. Mexitil is an anesthetic drug that works like lidocaine and slightly numbs the body. Then over the summer I had three bierillium blocks performed and an attempt at a radiofrequency. The radiofrequency failed because my nerves are too close together, which only happens in five percent of the population. As a result I was placed on MSM which is a dietary suppliment that is suppose to help reduce pain and has virtually cured me of my allergies and Neurontin, which is used for neurologically based pain. I had a very poor appetite because of the medications I was on, but my pain was at a more tolerable level.
The next thing I had done was a sciatic catheter. This is one of the few things that has actually helped. I was pain free for two months which allowed me to finish up my swim season with very few problems...until my wrist started hurting along with the pain returning to my leg. I then had a stellate ganglion block. The stellate block helped my pain in my wrist as much as the epidural blocks helped my leg. It got rid of most of the pain for a few days. I had a second sciatic catheter placed. The pain wass at a very tolerable level in my leg as of this point. But my wrist didn't seem to be doing well. I had a cervical MRI done to see if any of the nerves in my neck were compressed and causing problems. Fortunately (or unfortunately) the nerves in my neck were not causing the problems in my arm. To try and put my arm into remission quickly a radiofrequency of the thoracic spine was tried, this procedure failed miserably and put the pain level back to the highest amount. After another flare up in my leg I had my final sciatic catheter placed. Unfortunately, I didn't get any relief from this procedure.
I had a trial spinal cord stimulator on December 1, 2000. My permanent one was placed on December 8, 2000 and my life has completely changed. I have gone back to school and found that I am able to study and concentrate better because of the pain relief I am getting from the implant.
