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.

Tracy Jones
Oklahoma

 

9 thoughts on “Reflex Sympathetic Dystrophy (RSD): Diagnosis Difficult”

  1. Heather, now do I submit my story?

    Thanks
    Marianne Vennitti

  2. Donna says:

    Our daughter also has Parry Romberg Syndrome with facial atrophy and neurological issues including seizures. We are very concerned about our 20 year old being able to have any kind of normal life. Thanks you for sharing your story, as the best we can do is educate! Perhaps then, doctors will study this cruel disfiguring disease and help to find better treatments and even a cure.

    Donna
    970 396-6222

  3. Hugh Hempel says:

    @Marianne Send me an e-mail and I will get it to our Community Development Director! You can also find us on Facebook! https://www.facebook.com/globalgenesproject?v=app_197602066931325&app_data=wlbb%3D1

  4. Tiffany says:

         My name is Tiffany I am 23 and for the past 10 years I have been fighting a battle of chronic pain called rsd/crps. Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome. Many people have no idea what that is my goal is to change that by bringing awareness to the hell that many of my rsd friends and i have and live each day. People judge me all the time and say how can someone so young have rsd, rsd doesnt care how old or young you are, male or female , rich or poor it is a very life changing disorder. If you dont no what it is look it up because to a person who has rsd/crps the most hurtful thing you can say is i dont believe your in pain its in your head!! Please peoeple who are reading this stop judging people before you even talk to them.
            This is a rare disorder I developed after surgery at the age of 13 or 14 years old. I had numerous surgeries on my leg which led to me getting this chronic pain disorder called RSD/CRPS there is no cure. i also have rsd/crps in my right arm from flipping and rolling my moms jeep in 2006 thank god i only broke my wrist and everyone was fine but the rsd spread to my arm than in 08 i rebroke my wrist stopping an elevator from crushing my friend and i got a bad sunburn. I have pain everyday every minute every second all the times. I take pain killers and no i dont just take medicine to get high i actually need my medicine . I was being treated with medicine and spinal blocks but than from all the surgeries and the drs and nurses not being able to find my veins i developed rsd in my left arm to (they tried to get a vein on my foot but no luck so im praying that my only good part of my body will not get rsd when people first meet me they think I’m a normal 23 year old but when I say I have chronic pain called rsd/crps you will not believe the things people say. 
    They call me a liar, say but you look so healthy or your young or well you don’t look like you have pain ( what does that look like so I can give them my pain face) or why are you up at 3am and sleep until 12pm why can’t you work or drive, why are you so lazy and i can go on and on. Every day I struggle just to do normal things that everyone takes for grated like get out of bed, walk up or down stairs, walking sometimes i cant do I have to use crutches, hanging out with friends. I can not work since I don’t sleep I don’t have a lot of energy and I can’t drive due to all the medicine I’m on its illegal and I had a very bad car accident in 2006.
             I had a fundraiser in november 2011 because november is rsd/crps awareness month and unless you suffer from it or have a family member or friend who suffers from it you mention the word rsd/crps and the response is always rdscps what what did you say you have. Than i start to explain it and people say you dont seem to be in pain.If someone sees me taking medicine they assume I’m a drug addict or I take the medicine to get high. At my fundraiser someone actually told me to kill myself and end my pain  i responded with are you stoned or drunk i have friends and family that love and care about me she said yeah but grief is an emotion they would probably be happy that your gone so you dont have to be a bother anymore. I have been suicidal before I can go on and on with the negative hurtful comments. I’m on fentanyl , morphine, klopine, soma, and sleeping pills and I still have terrible pain. My dr wants to put a spinal cord stimulator in my back and do a ketamine coma to try to restart how my brain thinks of pain. 
              Rsd changed my life i wanted to be a Forensic nurse but the pain is so bad I can’t focus in school, and since I have chronic pain the lack of sleep doesn’t help. I also have a poor memory, my legs change color and temperature and the pressure of my pants makes me cry so I have to wear shorts all the time and get weird looks because of how my leg looks. I have no self esteem left it kills my friends and family and drs that I think of myself as worthless. There are many suffers and I try to bring awareness but i can’t spread awareness by myself. I bake and cook in attempt to take my mind off of pain and I wanna start a baking line baking for a cure and  donate money to find a cure not only for rsd, but for cancer society, bake for hope, cookies for kids with cancer, rare disorder just to name a few. I cant work so money is a problem and I can’t drive because of the accident and it’s illegal due to my medicine.
           Im very outgoing even in pain and friendly and have a big heart but if someone abuses my kindest i can be their worse nightmare.
          Don’t judge a book by its cover well same goes for me and everyone don’t look at people and say I look healthy than when I explain I have chronic pain don’t tell me it’s all in my head bc I don’t look like I have pain what does pain look like??
    What I wake up to everyday body changes colors it’s spotty sometimes it’s hot other times it’s cold the pressure of pants and blankets is so painful I wanna cry. Imagine having to sleep with your legs elevated above your heart and all night you wake up bc the blanket caused you so much pain. Imagine your body feeling like its on fire and so having your hands and feet burning ,so swollen, stabbed pain , tingling so bad you can’t go on the computer or text someone bc thats how intense the pain is. I don’t have to imagine that’s my life for over 10 years not please google and look up rsd/crps and educate yourself.
          My goal is to bring awareness and help people with issues like me. In order to do that I need help in spreading the word. I’m not asking for anything except education to people so they don’t cause us more pain. Negative comments hurt I just not to listen but when have your family does believe you and people even drs don’t believe you it’s hard. Well this is my life I’m sure I left out a lot.
    From 
    Tiffany 

  5. Crystal says:

    I want to start off with saying you are all very brave and i find inspiration and hope with a diagnosis reading your stories. I’ve been suffering with similar symptoms and pain the last year. I was diagnosed at 22 with rhuematoid arthritis and last year at 24 was diagnosed with fibromyalsia because of the pain but, while i have many symptoms of fibromyalsia, my pain is mostly on my left side. It started with my arm, growing down my hip to my foot, up my shoulder, to my face… The pain gets so bad i start to see blurry out of my left eye. My sister, who has seen me at my worst, saw a Dr. Oz special on Paula Abdul and said that her symptoms were similar to mine and after watching the show everything pointed to this. I feel like since I’ve been diagnosed with Fibro doctors dont want to deal with me anymore but i feel the pain is deeper than that and my diagnosis is uncertain. If anyone has any help or advice to send my way i’d very much appreciate it. Thank You… Crystal*

  6. lucy says:

    You are not alone. There are many of us with strange diseases. We need to get togheter, educate the public, push for research and a possible cure and help and support each other. Alone we may feel helpless but togheter we can be a force to be reckon with.
    We have been through a lot including the cruelty that come from ignorance,
    The lack of knowledge from doctors, the inner suffering, the fear of the unknow and the anxiety and depression that comes from despair and yet, we continue on, we fight and we endure. We are survivers.we are brave. We won’t give up on life.. we will enjoy life , dear ftiends and family as is our right as hunan beings.

  7. Chauncey123 says:

    I have had CRPS since 1999. It started in my leg then spread up the left side of my body. However, now it is strangely only in my upper left side, and my leg rarely hurts. That just speaks to how weird this syndrome is. I think any way you get CRPS is rare. No way is “normal.” I had an airplane chair break and fall on my legs. I’d say that’s pretty rare, so much so, that when I was in physical therapy, some of the staff would ask me to tell the story to others because they didn’t want to leave out any details of the dramatic “event. “. I read on the Journal of the American medicine website (I think that was the site, because it was awhile ago) that any trauma to the skin can cause CRPS, which would include an I.V. The gist of the article was some of the treatments for the disease can actually cause harm, in particular, epidural needles. On a forum I visit about Chronic Pain someone posted that using a TENS unit can exacerbate your symptoms.

  8. MS says:

    I have had CRPS since 1999. It started in my leg then spread up the left of my body. However, now it is strangely only in my upper left side, and my leg rarely hurts. That just speaks to how weird this syndrome is. I think any way you get CRPS is rare. No way is “normal.” I had an airplane chair break and fall on my legs. I’d say that’s pretty rare, so much so, that when I was in physical therapy, some of the staff would ask me to tell the story to others because they didn’t want to leave any details of the dramatic “event. “. I read in the Journal of the American medicine that any trauma to the skin can cause CRPS, which would include an I.V. The gist of the article was some of the treatments for the disease can actually cause harm, specifically epidural needles. On a forum I visit about Chronic Pain someone posted that using a TENS unit can exacerbate your symptoms.

  9. MichaelWam says:

    дезинфекция от муравьев в квартире москва – услуги дератизации помещений -дезинсекция, дезинсекция объектов -дератизация

Comments are closed.

X