Tracy Jones

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Hi my name is tracy Jones my story with AS I think started when I first became pregnant with our first son who is 23 my legs would hurt so bad had to just rub them get up and walk lower back into bottom hurt so bad this happened again  with second son who is now 20.I continued to complain with back if doing house work such as mopping would make back and hips so painful I even saw a doctor about 17 years ago who told me I was just a mom and to deal with it so I continued to just deal with the pain I was a competitive roller skater and even turned pro I skated for about 23 years I thought my back was from all the falls we take as figure skaters most right on tailbone.I just continued to deal with the  pain then in 2001 I was at the ER for kidney stone and told them the IV was hurting and was told that pain medicine will hurt anyway I ended up with Complex Regional Pain Syndrome which is the worst chronic pain known on the McGill pain index in 2006 it attacked my organs causing me to have all kinds of problems first taking my ovaries then in 2008 I was having back problems I was afraid that the CRPS had gone to my back but it had not instead was diagnosed with AS so it took for me from my first symptom in 1990 until 2008 to get a diagnoses then getting help at first was so hard as all the reumotologist I saw would just say I am not going to give you any more pain medicine even though I have a wonderful pain doctor he just wasn’t sure the best way to treat AS so he sent me to them and most just were so rude when they found out what else I have wrong with me finally in 2012 found a good Arthritis doctor.Because of all the other things I have wrong I am definitely a hard case I went to the Mayo Clinic in 2011 for all the other health issues and when they tell you that you are or have a very complicated health history this is not good I am probably doing better with my health since 2006 I have had to have my thyroid completely removed which only took 7 years two operations and me doing lots of research to figure out I have Reverse T3 Hypothyroidism which they do not even test for not sure why not because for over two years I had blood work every 4-6 weeks and this was never tested even though none of the medications that they were using was helping after getting a reverse T3 test and getting on the medicine needed for this I am doing better I do have low vitamin D Adrenal Fatigue as well as fibromyalgia and a very rare disease that also started in 2006 and I did finally get a diagnoses in 2011 when I went to mayo clinic but have not found a doctor here in Oklahoma who has ever heard of this it is Parry Romberg Syndrome and it has caused the left side of my face to atrophy I look horrible.Everything I have is autoimmune so I now have 6 of them so they all cause fatigue,pain joint swelling feeling like you are on fire from the inside I looked so bad when going through the thyroid problems that a friend of mine informed me that I looked like a 90 year old woman about to die I was 44 at the time anyway the AS has kept me on the couch or recliner as if I lay down in a bed my hips hurt way to much to walk the next day really after only a hour I cannot take it anymore hoping to one day get a adjustable bed so I can sleep next to my husband again we have been married going on 26 years and I have been in chronic pain for 13 this June he is a amazing husband friend DAD and just takes care of me well this is my story one other thing is that I try to raise awareness for all my diseases so if you need help just let me know
God Bless You, Tracy with him we can put out the fire within
Oklahoma, United States of America

One Response to “Tracy Jones”

  1. Dear Tracy,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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