Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
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My name is Tracy and this is my story.

January 8, 2012

Hi my name is Tracy and I have had PRS since 2006. But let me go back to 2001 when my life as I knew it all changed.

In June of 2000, I went to the ER for kidney stones. When I was given the IV in my right hand, the pain medicine reacted with my sympathetic nerve. This caused me to have what is called Reflex Sympathetic Dystrophy (RSD) which is the worst chronic pain known. I did okay with it until it started attacking my organs. In 2005 I had to have my gallbladder removed. In 2006 I started gaining weight uncontrollably. I asked about my thyroid and was told it was fine.


In December of 2006, I visited my Dad on Christmas day. He asked me what happened to my face. To him it looked like a bruise up high on my cheek. But I had him look closer and he could see where my face was caving in.

In 2007, I was told I had ovarian cancer. But by the grace of God it was not cancer, the RSD had attacked my ovaries causing severe swelling.

They found a nodule on my thyroid but said it was fine. By 2008, the left side was the size of an egg which was removed from the left side only.

During these two years my face continued to cave in. Since it was on the left side, they thought it was maybe something to do with my thyroid. I could not find a doctor who knew why this was happening to me.

Meanwhile I was getting sicker. I thought this was from the RSD only to find out it was because the RSD was spreading down the whole right side of my body. Also my thyroid levels were not good even though I had been told they were fine. I was finally put on thyroid medicine in 2010 which was about four years too late.

By 2010 my face was getting worse, caving in more. Luckily I have a wonderful pain management doctor who was worried about my face. Together we did some research about TMJ and face cave in and PRS came up. I really started researching on the Internet and found that PRS can have a link to the sympathetic nerve which is damaged in my body from the RSD. I have been to all kinds of doctors who never heard of PRS. Finally I went to a plastic surgeon who knew what I had and confirmed it.

I now also have Fibromyalgia and Ankylosing Spondylitis. My thyroid and these other two things as well as the PRS all started within two years of each other. I had the rest of my thyroid removed in December 2011 because even while on medicine my thyroid continued to grow.

My story is long and complicated. I am hoping to be able to help others if they are going through any of these problems. I do not understand why RSD has gone down my whole right side. I need a cane to walk. Some days I cannot get out of bed from all the things I have. But with the support from my family and groups like this I can go on.

I am hoping to get my face worked on one day but with all my other issues it is hard. My insurance has denied coverage for facial surgery so I will have to wait a little longer. I have a support group website for the RSD. I am trying to help others who have all the diseases that I have. All of these diseases get little or no support. I am also working on a book along with my nephew to raise awareness for all my diseases. Please feel free to contact me here or at my other site which is Oklahoma RSD/CRPS Support. I hope this all makes sense to you.
God Bless You,

All photos and text are the property of the families represented, and may not be used without their consent.

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