Hello! First off it means the world to me that you clicked to read a little more about my story. My name is Christina, and I have had CRPS diagnosed a little over a year. Im considered about 75% body wide though i do actually have symptoms in every limb.
"CRPS is a life-altering neuroinflammatory disorder that is the most painful of all medical conditions according to the McGill University Pain Scale. CRPS is rated more painful than cancer, amputation, childbirth and kidney stones." -RSDSA
It all started after complications with my first back surgery in August 2018, where I ended up with a CSF leak and Pseudomeningocele which is a mass filled with spinal fluid. Mine pushed around a lot of my nerves and back muscles, after failing to self seal i ended up with a second surgery to fix me, but when i woke up I knew something was wrong. I was in more pain then I ever thought possible and my foot felt like it was actually on fire.
It took a while for me to get an actual diagnosis even with my psychologist at the time telling my old doctor he thought thats what I had. Unfortunately by the time i went back to the office who did my surgery, it was too late and my condition already started spreading. I didnt even know what CRPS was until it was suggested I may have it. This condition is the most painful condition known to exist yet i know many people have no idea what it even is. Even patients with this are often treated like drug seekers when trying to seek relieve from their pain.
Sarah the P.A acknowledged what I was going thru was real, and was the first to actually try to help and treat me. Unfortunately, crps has no cure, and im quickly learning just how much this takes from you. I am in pain 24/7 the treatments that may help arnt even covered by insurance. Even my child's touch on my most effected limb, is painful. My husband just trying to show physical affection hurts me. Right now I heavily rely on my cain, but to be honest would not be suprised if im wheelchair bound on the next few years.
I went from being able to play with my kids, trying to learn to hula hoop again, and loving the outdoors, and loved my husband trying to teach me to drive his toys, to someone who can barely stand for 5 minutes without feeling like my leg is going to explode. I use to love walking in the grass feeling it on my feet and toes and even that has been taken away, I have to wear soft boots or soft shoes. And even wind or colder temperatures hurt my skin if its not covered.
Bringing awareness, and getting more medical research done to try to figure this out would mean a second chance at my life. Even if you cannot donate, please share my story so at least awareness is spread about this horrible condition. I would love nothing more but to be able to be half the able bodied person I use to be before this.
If you made it this far thank you, please consider sharing this or donating to the RSDSA to help further research.