Having Battled A Rare & Debilitating Disease I Want People To Know I Am A Study In Courage

By Margaret Twitty

Life doesn’t always go to plan; but in those moments of adversity, picking yourself up and carrying on will be the best and hardest thing you do. Imagine that your life suddenly changes and you find yourself walking down a different path. Just like that. In the blink of an eye, everything you imagined is gone, and you are now facing an unknown future.

My life suddenly changed on Jan 6, 2015, after a seemingly routine surgery on my right foot. I developed a rare and devastating disorder called Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD) for which has no cure. I diagnosed with this on Feb 17, 2015. This was my “ground-breaking moment” that altered who I am and changed the very course of my existence.

CRPS/RSD is a neurological progressive disorder that typically occurs after an injury to a limb, can spread and become debilitating. Doctors aren’t sure what causes it, but after the initial injury something goes wrong in the nervous system. Some of my symptoms were severe pain to my right foot, color of foot changed to a brighter/purplish color that looked like frostbite.

My foot was extremely sensitive to touch, felt like someone was putting a lighter to my toes, and uncontrolled twitching of my foot that was quite disconcerting to see. I also had abnormal hair growth on the foot and the toenails on that foot grew at a faster rate than my other nails. I have and still have mental cognition changes, chronic insomnia, the inability to stand/walk/sit for long periods and the worsening of my past OCD issues.

Even though I had some mild OCD issues that were well controlled with medicine, the diagnosis of CRPS/RSD triggered the intensity of my OCD issues and have really impacted my day to day living. I also continue to have trouble driving or being a passenger in a vehicle for long periods due to the vibrations of the vehicle.

Ever since being diagnosed with CRPS, I have missed doing so many things, but the biggest thing I’ve miss is being an athlete, especially a gymnast, and having all that competitive drive. Gymnastics, from the very beginning gave me so much passion, drive, and fire that it will never leave my body no matter how old I get. This sport, to me, was like falling in love, it was like falling head over heels with somebody, or in my case with something. Gymnastics was the place where I found my peace and security to focus on what laid ahead for me.

Recovery was long and difficult. I saw many different doctors to address all the different issues involved with this disorder. The majority of my recovery was in participating in physical therapy. I had about 70 physical therapy appointments. It was nearly six months after the surgery before I was able to walk just a few steps by myself. Even after I could walk on my own, I still wore my boot and used crutches out in public for fear of someone accidentally touching my foot. I knew if I was using my crutches, no one would come close to me. The pain was that bad.

Initially, my friends were always asking about me and contacted me a lot. But, over time, I slowly stopped hearing from them. I had read about this type of thing happening with people with CRPS and chronic pain in blogs and Facebook pages.

My immediate family and extended family have really been great and continue to support me. If it wasn’t because of the support of my family and enduring the grueling physical therapy as well as having really good insurance coverage, I really don’t know where I would be today. I don’t know if I would be even walking yet.

My faith in God has given me Hope. I believe He chose me to be that 1 in a million to be diagnosed with this rare illness in order to spread awareness and try to help other people with this same rare disorder. I don’t have the same amount of drive or perseverance as I had when I was a gymnast though. I am limited in what I can accomplish on a day to day basis.

When I do too much, I have setbacks and can’t accomplish much for several days. But, in writing these kind of articles, I am able to reach a lot of people. I know that my blog has raised awareness and helped other people coping with this disorder from the e-mails I receive through the blog.

CRPS is a very cruel disorder to have, because it’s not just you who has it, it’s your caregiver or person who lives with you who also endures and experiences it. Each person battling CRPS is a study in courage. Their families and friends are some of the most courageous people I’ve ever seen. Each one has a story that will inspire others to not give up and to live life to its fullest.

Even in adversity, people can find things to be grateful for. I have my family and was fortunate in getting diagnosed early- which is crucial. Unfortunately, there are countless people who are suffering because they have yet to be diagnosed with CRPS. The longer this disorder goes undiagnosed, the more likelihood the person will have a much more difficult recovery, Or even if they ever recover full use of the affected body part. This is why I am trying so hard to spread awareness about this disorder.




Margaret Twitty lives in Connecticut and was diagnosed with Complex Regional Pain Syndrome (CRPS) in Feb 2015 at the age of 23. Her goal is to spread awareness of this rare and often misunderstood disorder. She aims to turn this struggle into a strength. She wants others to know that there is someone who will always be in their corner.

You can follow her journey on her Blog, on Twitter or on Instagram.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.