Written by the Emily C. for the RSDSA blog.
How and when did you develop CRPS/RSD?
It was winter break and my best friend and I were so excited to be off from school, so we had a dance party. As a 10 year old diva, I thought it would be a great idea to stand on a dresser and perform like a little celebrity. As the closing act, I jumped off and hurt my left foot. I remember immediately crying. My parents iced it and we went on assuming it was just a sprain, which is what the doctor diagnosed the following day. I was prescribed a boot to help it heal. I remember crying and refusing to wear it, as there was a burning sensation when I touched my foot. We went back to the doctor a few days later. Luckily he was able to immediately diagnose me with RSD. Long story short, I was just a 10 year old girl having fun and just decided to jump off a dresser.
What has daily life been like since your diagnosis?
I am currently 17 years old, and life right now is “normal.” However, I will bring it back to the beginning. Immediately after my diagnosis, my mom spent her days contacting Children’s Hospital of Philadelphia (CHOP) and Children’s Specialized Hospital (CSH) to try and get me into their pain program. While waiting, I spent my days on crutches and in immense pain. I was only in 4th grade, so, I would get dropped off earlier than the other kids and have someone help me carry my backpack.
In school, no one understood my situation. Some kids said I was faking it, being dramatic, or that it was just a sprain and that they have had them too. I knew it was much more than that but as a kid, that was hard to understand. It was also really hard watching kids play, for months, while I sat back and watched. Besides the mental impact, my foot was constantly hurting. It was super sensitive to touch or movement. My parents had to find new roads to drive on because driving over the smallest bump and having my foot jolt really hurt. My foot was always in a sock, which took me 15 minutes to get on each day, and a lot of tears.
My foot started to get swollen and my toes were bluish from the lack of blood flow as I seriously did everything to avoid moving my foot. I remember bathing was so hard, the burning/prickling sensation from water being poured was hard to handle as a little girl. After a few months of outpatient therapy and totally adjusting my lifestyle to accommodate for the pain, I was finally in the Children’s Specialized Hospital Pain Program.
The first day they did an evaluation and I had to move my foot, I screamed so loud. This was the first time it had been moved that much since the initial injury. I was there for three months and each day they pushed me past my limits. I did therapy for 4 or 5 hours a day and there was lots of crying and yelling at the therapists, but they are responsible for getting me back up on my feet. When I got discharged, I continued with outpatient physical therapy. I had a limp for three years and still treated myself like my foot was hurt. I would not run or play with kids during recess. In reality, that was just a mental block and I was actually totally fine.
One summer, I just decided to run around with my little cousins. It was a shock to everyone in my life but no one made a big deal about it. I had finally jumped over the last hurdle. Now, I am 17 and I love hiking and bike riding with my friends. I have climbed mountains and biked many miles through the hills in Europe. My life is completely normal, never any pain, and I actually forget that there was a time when I was restricted to what I could do.
What is one thing you wish those without CRPS/RSD would understand?
My journey started with a simple sprain. Many people get them, and they heal quickly. I was on crutches, a walker, and even in a wheelchair at one point.
“But Emily, it’s just a sprain.”
True-ish, it was just a sprain, but it turned into much more. It turned into a painful four year journey and healing process. I wish that people would understand the severity of RSD. I know it is hard to comprehend just how painful it is and why it is not easy to just “get over.” But I am sure anyone who has been diagnosed can agree that we had to work really hard to overcome RSD. Please trust me when I say it was not easy at all as it almost feels as though a part of my childhood was wasted overcoming it, but I know it made me stronger. To summarize, I wish people would understand that even though it may not make sense to them, it is something very real that I am very proud to be able to say I overcame.
What advice would you give to newly diagnosed Warriors?
This news really sucks and it will not be an easy journey, but it will be your battle to overcome and win. As a Warrior, it is possible despite the doubts you have now. I believe we are only given what we can overcome, so you will get through this. Just take it day by day, have a support system, and kick RSD’s butt!
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
I was only 10; at the time I was the youngest patient they had ever had in the pain program, but I worked my butt off to get past this. And it took me years. It took a lot of physical therapy and talking to a psychiatrist. But I wanted my RSD gone and I wanted to live a normal life. So that was my motivation. I know the journey is not easy. I also know that it is possible to overcome.
Walt Disney once said, “If you can dream it, you can do it.” This quote sat alongside my hospital bed, and then I wrote it on a ceiling tile when I was discharged. Basically, if you have the desire to beat RSD, you will. Just put in the hard work.
What activities or treatments have helped you find temporary or long term relief?
Swimming was a lifesaver. As a part of my program, we swam every morning at 6:30 a.m. (this is when my long day of therapy started). But as any kid, I loved the water. So at the hospital and when I got out, I swam. It got my foot moving, but it was fun and I had other things to focus on rather than my foot.
Simply walking helped too, especially on the beach. It was hard to do, but it was enjoyable and a really good way to get my foot flexing and moving.
Lastly, getting a massage, (because who doesn’t love a massage?). Once again, it was a lot of touching and moving my foot. This was really hard and each day I would set a goal to have it done for 30 more seconds, but it was a small battle that I was able to overcome and feel really proud of myself for. My advice would be to find something you enjoyed doing prior to RSD and make it your goal to get back to it by doing what you need to.
Anything else you would like to add?
Talking to other people who had RSD when I was first diagnosed really helped. Therefore, I would be willing to talk to anyone who is looking for that comfort of talking one on one to someone who already fought this battle. Even though it’s been a few years, we are all Warriors now and in this together. 🙂
Connect with Emily via Instagram at @_emilyycase.
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