I have Reflex Sympathetic Dystrophy (RSD), a rare disorder of the sympathetic nervous system, which I got in a very “rare” way. In a one-in-a-million chance, I received RSD by an IV in 2001. I now have had to have my ovaries, gallbladder, and appendix removed and also had a full thyroidectomy.
Since 2006, I was also diagnosed with Parry-Romberg Syndrome (PRS) which is a facial atrophy. I also have hypothyroidism with a condition called rT3. My body does not convert T4 (thyroxine) to t3 (triiodothyronine) like the average person. I have fibromyalgia and ankylosing spondilitis. As you can see, I understand having a rare disease very well. Before all the internet and social media we have today, it had been rough and then getting diagnosed for the PRS was about impossible. It was because of the internet I was finally able to get an accurate diagnosis. It has been very hard to live in chronic pain and to have your face go away on one side has been very difficult. I have weight problems and the extra joint and muscle pain caused from the hypothyroidism – it has been a very rough 10 years.
I hope that my story can help another person who is afflicted with what all I have. The only thing we can link all of these diagnoses together with is the RSD because we have found a link to the sympathetic nerve in the RSD, PRS and the Hypothyroidism. I hope if anyone else has all of these things together as well – I hope I can maybe help deal with it all. Even though it is very hard most days, I believe I am here to help someone else going through the same thing.