I Have a Monster Called RSD–But RSD Doesn’t Have Me!

April 28, 2014

In 2000, at the age of 13, I was diagnosed with a monster: RSD.

  • Reflex sympathetic dystrophy (RSD) is characterized by a group of symptoms including pain (often “burning” type), tenderness, and swelling of an extremity associated with varying degrees of sweating, warmth and/or coolness, flushing, discoloration, and shiny skin.

After twisting my ankle while running pre-season for my high school cross country team, I felt pain that I had never felt before: burning, stabbing, shooting pain. After three months of tests, x-rays, and staying off of my foot to let it heal, I went to a pediatric orthopedist who diagnosed me; the first pediatric in the state of Maine to be diagnosed with RSD.

I received many epidural injections, and was on countless medications, but after 2 years, I went into remission, and was able to resume running and figure skating. While in college, I relapsed, but was able to quickly get back into remission, with the help of nerve blocks and an increase of medications.

In 2011, I again relapsed. This time, RSD came back with a vengeance, and quickly spread up my leg to my knee, then to the opposite foot, to that knee as well! In 2012 I began ketamine infusions, which have given me my life back! I am able to work full-time, though it is not without pain. I receive ketamine “boosters” every 8-10 weeks, for 3 days at a time. It really has allowed me to have a much better quality of life, and I am so grateful to be able to receive that treatment.

I am now dealing with undiagnosed GI issues, since June 2013. I have lost 20lbs, putting me under 100lbs, at 27 years old. My GI specialist is weeding out diagnoses through different tests, but the pain, nausea, and weight loss continue. There are different ideas right now, including gastroparesis, crohn’s disease, as well as other possible conditions. It is the hope that I will be diagnosed soon, so that I can begin treatment for whatever is causing my problems, and get healthy before I get married in September 2014! Until then, I will continue to live my life as well as I possibly can, hopefully wearing a smile every step of the way!

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