My name is Tiffany and I am 24 years old. For the past 11 years, I have been fighting a battle of chronic pain called Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS), or shortened to RSD/CRPS. Reflex sympathetic dystrophy is a clinical syndrome of variable course and unknown cause characterized by pain, swelling, and vasomotor dysfunction of an extremity. Complex Regional Pain Syndrome is an uncommon form of chronic pain that usually affects an arm or leg.
Many people have no idea what this condition is and it’s my goal to change this by bringing awareness to the pain and suffering that my RSD/CRPS friends and I live with each day. People judge me all the time and say, “how can someone so young have RSD” or “your pain is in your head.” RSD/CRPS doesn’t care how old or young you are, if your male or female, or if you are rich or poor. It is a life changing rare disorder and there is no cure.
I first developed this rare disorder after having surgery at the age of 13 or 14 years old. I fell in gym class playing volleyball. I had a tibial tubercle plasty where the doctors break the leg on December 31, 2003. I will never forget the look on my doctors face as he told me, “I’m sorry, I cut the wrong nerve and you now have RSD/CRPS.” I had numerous surgeries on my leg which led to developing this chronic pain disorder. I also developed RSD/CRPS in my right arm from flipping and rolling my Mom’s jeep back in 2006. I only broke my wrist and everyone was fine, however, the RSD spread to my arm.
In 2008, I re-broke my wrist trying to stop an elevator from crushing my friend. I was being treated with medicine and spinal blocks but from all the surgeries and the nurses poking my veins, I developed RSD in my left arm too. Then they tried to put an IV in my foot to give me a spinal block. What a joke. They poked me about 10 times giving me RSD/CRPS in my foot which spread from my foot to my hip. So now I have RSD in both arms from shoulder to fingers and both legs from hip to toes.
I have pain everyday, every minute, every second, at all times. I take pain killers. And no, I don’t just take medicine to get “high.” I actually need my medicine! I wake up every day to body changes – hot, other times cold, and the pressure on my body from pants and blankets is so painful at times that I wanna cry. Imagine having to sleep with your legs elevated above your heart and all night you wake up because a blanket is causing you so much pain. Imagine your body feeling like it’s on fire with your hands and feet burning, swollen, stabbed pain, and tingling so badly you can’t go on the computer or text someone because the pain is so intense causing major panic attacks to the point I think I am going to have to go to the hospital.
My goal is to bring awareness and help people with issues like mine. I hope you will learn about RSD/CRPS and have some compassion for people with this condition.
I bake and cook usually more around the holidays. I raffle off cakes, cookies, and cupcakes to raise money for charity’s. I have RSD/CRPS, and I have been asking everyone if they would donate or help out with charity’s. This year was hard because I lost my grandma a year ago, than lost my house to sandy which was literally flipped upside down, than on Christmas my mom had a gallbladder attack so she had to have it removed, that’s how we spent our Christmas , than a couple days later she fell down the stairs, she tripped over the dog and broke her wrist in two places, and to top it all off I got the flu very bad. My RSD is out of control due to the weather. I cry myself to sleep. My mom wakes me up because we are still not home so we are sharing a bed. My grandma’s bed in my grandma’s house who passed away. My aunt is living here but the bank owns the house. We have no idea when we can move home but I still want to do charity work and help others like me.
The treatment they want is Ketamine or Ketamine coma in Mexico or Germany, a spinal cord stimulator, or I can live on pills for the rest of my life while waiting for a total knee replacement too. I can’t find a doctor that doesn’t want to experiment on me.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Hi. My Name is Sherry and my son was recently diagnosed with CRPS. He is 16 and very social but has been completely isolated as a result of not being able to go to school. I was wondering if you knew of any young men groups that we could look into.