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

 

Broken Dreams

Okay, so it’s early. It’s morning. But I need to write and process the night.

Last night I had a very vivid dream, and one that left me saddened and confused in the morning. So what was this dream? Well, I was back in the place I’ve been so many times…the hospital. Yep, not really my favorite place, as I usually associate the word “hospital” with “jail” or “torture chamber.” But in this case, it would have potentially been a good stay.

In the dream, I first crutched through the hospital and saw some old therapists. One of them, the one who has been sort of my go-to RSD expert PT, saw me and didn’t look happy. No surprise there, as we left off on pretty bad terms the last time I saw her. I kept going through the hospital and saw my doctor. We chatted for a bit and he sent me on my way back to the gym, where I once again saw my PT, as well as my favorite OT there (and my not-so-favorite who said I wouldn’t be able to be an OT with my disability). My PT pulled me into the hallway and we had a chat where I told her why I was back. It was because I was ready to work.There was no back-up plan for this time. I was going to leave walking and independent. We talked to my OT and came up with a plan.

After the assessment with my therapists I went to a different room where I saw one of my friends from a previous stay. It was fun to see him and talk about life for a few minutes since I haven’t talked to him in a while.

I think the disappointment began when I got to my first appointment and had an old man who I’d never seen as my therapist. Nothing against old men, but I got scared and stopped talking because I didn’t feel comfortable with his therapy. [I should add that I am very hesitant to begin with new therapists because of the problems that some have caused in my past, so I tend to stick with the ones who have helped me before and who I trust]. This part of the dream confused me because I didn’t know who this man was! I left therapy that day and reached some more roadblocks but then the general mood of my life was that things were looking up. Or at least they were on their way to looking up. I had plans to see my real therapists later on and I was feeling positive about those appointments.

But then I woke up. And I realized that nothing had changed and I was still in my uncomfortable dorm room bed, leg draped over a pile of pillows and foot still the size of a football.

There are some situations when I wish that I could carry over a nighttime dream into my real life. Now, that hospital certainly isn’t my favorite, but it seems like my best chance. I just don’t know if they’ll let me ever go back. You know, I’ve kind of used up my share of time there. But, if the opportunity came to go back and get that intense, hate-my-life treatment back, I just might say yes. Because while I hate it, it has helped 3 out of the 4 times.

If you’re still reading this, kudos to you. Maybe it’s boring to read about other peoples’ dreams, but hey, I’m glad that I was able to write it out and begin processing. I can’t begin any treatment plans at the moment due to school, so things will have to be on the back burner for a while (probably until I’m done with my undergrad next Winter), but it’s good to start thinking. I have a list of possibilities and a list of things I’ll never do, but I won’t begin really looking into things until I’m ready to go.

I guess that’s all, thanks for stopping by and reading about my random rambles 🙂