A Letter to Those Newly Diagnosed with RSD/CRPS

This month marks the 8 year anniversary of my initial RSD injury. Today I found out about another warrior who was just diagnosed. My heart aches, knowing the verwhelming feeling that comes with such a complicated diagnosis. So, to anyone who has recently had the unfortunate experience of having a doctor say, “you have RSD/CRPS,” this is for you.

 Dear Warrior,

This message is for you. Yes, you are a Warrior because you have just stepped onto the battlefield of one of the biggest wars you’ll ever fight in. The war against RSD/CRPS. Things may look bleak and confusing at first, but it gets better. These big words, “Reflex Sympathetic Dystrophy,” or “Complex Regional Pain Syndrome,” can feel daunting. What do they all mean? Why are there different phrases for the same diagnosis? While you may feel relief that you finally have an answer to your pain, you may be feeling a greater weight knowing that this isn’t just a broken bone or muscle strain. The swirl of emotions can hit you pretty hard, but take some deep breaths and approach it all one day at a time.

Know that you are not alone. Although it’s true that you’re now part of a vicious battle, you are fighting alongside millions of other valiant warriors. You don’t have to do this on your own. There are always people who are here to support you and walk with you as you navigate your way through this new world of chronic pain. Reach out to me, reach out to others. Don’t be afraid. You are not alone.

There may be people who don’t understand, or who might not believe that anything is wrong. Doctors, even, can be discouraging with their words and attitudes. Our pain is very real, this disorder is very real, but for those who don’t experience it firsthand, it can be difficult to comprehend. Don’t allow the negative comments of others to get you down. It’s hard to grasp the depth of this ‘mystery’ diagnosis, but know in your heart that you are not going “crazy,” this is not “all in your head,” and none of this is made up, even if people don’t understand.

If you are like me and head to Google, prepare yourself. There are so many websites and articles about RSD/CRPS, some better than others. There are some amazingly helpful organizations and websites (The RSDSA is wonderful– RSDS.org), and there are also places that will feed you information that is neither helpful nor true. Take everything with a grain of salt unless it is backed up by evidence.

The funny, frustrating, confusing part about this disorder is that no two people have identical experiences. For some, one treatment is a miracle and they jump right into remission. For others, they might try that treatment along with five others before they find something that helps. You never know until you try it. There are some medications and treatment options that have high success rates and might be worth pursuing before others, but just know that everyone has a different journey. This isn’t to depress you or discourage you; in fact, I hope to encourage you with the fact that you could be one of the lucky ones to find a treatment that works early on. They say early treatment is key; I believe it.

This journey can be scary. It can be sad, it can be disheartening, it can be confusing. It can also bring joy into your life that you never knew was possible. I know, I know…how can you say that there can be any sort of joy in all of this? Well, have you ever felt the incredible rush of emotion after taking your first step in months? Have you felt the pride of beating the odds? These things will come later on, so hold onto hope. Even if the elusive remission doesn’t come, or takes longer than expected, there can still be plenty of happiness along the way. You’ll meet new people with whom you will share deep bonds. You’ll be able to share your story and help others. You’ll appreciate the small things more as they become the big things.

What I really want to tell you, dear Warrior, is that this is not a death sentence. It does not mean that you have to be stuck in hospitals and doctors’ offices forever. I want to tell you, brave Champion, that it is possible to live a full, happy life despite the pain. You can still do the things you enjoy and love those close to you. You may have to adjust things a bit, but there is so much greatness inside of you and you will make it. I promise. So fasten your seatbelt and hold on tight, because this is going to be a bumpy ride…but in the end, you’ll come out stronger than before. Grasp onto hope and never, I repeat, never give up.

I’m here with you in the battlefield, cheering you on and waiting anxiously for the day when a cure is found and this battle is won for good. Until then, stay strong, my friends. Stay strong.

With well wishes for strength and courage,

Rachel, a fellow RSD/CRPS Fighter