Oklahoma RSD/CRPS Support.

 My name is Tracy Jones and I've had Reflex Sympathetic Dystrophy (RSD) since june of 01. I am the mother of two boys; the youngest was only 7 when all this started.  I have a wonderful husband who supports me and assists me in anything I need to do.  My parents and sisters have always been supportive as well.  I no longer work as a result of this condition.

My RSD was caused by unusual means via an IV.  I went to the emergency room for kidney stones, and the pain medication administered reacted with the sympathetic nerve. The next day my hand was purple, red and all other colors, and so swollen it would not close. We went back to the emergency room, and were told that the medication had infiltrated and would go away but it did not. I saw doctor after doctor for six months, and was told I just wanted pain medicine or that it was all in my head.  I finally saw a hand doctor who took one look and said, "I know what you have. It is RSD or CRPS".  The doctor gave me websites to look at that scared me to death. I was given three  nerveblocks, and had some relief for about a year.  At the time, I was still working as a dental assistant when my right thumb (same hand) was smashed by a piece of equipment.  Having another trauma to the same hand increased the problems I was experiencing, and now I have a tremor that never stops.  I had a stimulator put in December of 2003.  The RSD has now traveled down to the whole right side of my body, as well as internally.  I have horrible pain and swelling.  I use a cane if I have to walk very far.  

I have recently been diagnosed as well with Ankylosing Spondylitis.Spondylitis (pronounced spon-d-lie-tiss) is the name given to a group of chronic or long lasting diseases also called Spondyloarthritis (spon-dyl-oh-arthritis) or Spondyloarthropathy (spon-d-low-are-throp-ah-thee). These diseases are forms of inflammatory arthritis that primarily affect the spine, although other joints and organs can become involved. Spondylitis, unlike many other rheumatic (arthritic) conditions, affects young adults and commonly begins before the age of 35. Prominent researchers have stated that AS affects at least 1 in every 200 adults (approximately 0.5%) making it as common as rheumatoid arthritis.

Although there is currently no known cure, there is much you can do to educate yourself regarding Spondylitis and its treatments. There have been significant advancements in medical treatments during recent years and there are treatment options for those afflicted that can reduce the pain and symptoms of Spondylitis.

Recntly I have learned I have developed fibrmyalgia as well so the list just keeps growing as well as my faith keeps growing that he will heal me when he is ready.

I want to start a support and awareness group based in Oklahoma City.  This would allow those afflicted to meet and share stories.  I would also like to get legislation passed making Oklahoma recognize November as National RSD/CRPS month like other states have done, but I need support from the medical community.  If interested please visit my website at oklahomarsdcrpssupport or email me at jonestra@yahoo.com.  

Remember.... with Him we can put out the fire within!