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10 Things I Wish I Knew When I Was Diagnosed With CRPS

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I was 17 years old when I was thrown into the world of chronic pain. I’ve  been fighting this pain for five years now and have learned a lot. Everyday isn’t perfect. I still have days where the pain is too much. However, I’ve learned that I am so much more than my pain. I am not the chronic regional pain syndrome (CRPS) girl, I am a girl who happens to fight CRPS.

I would be lying if I said my journey has been easy, but I also wouldn’t change it for anything. I am proud of the person that I have become because of my CRPS. Although this is something I wouldn’t wish on my worst enemy, it has taught me things I never would have learned without CRPS. I am not a professional at giving advice, but this is what I wish I had known when I was first diagnosed with CRPS.

1. You are strong enough to handle it.

At the time of diagnosis, I thought I couldn’t possibly make it one more day. Everyday, though, I made it through. My high school life became filled with doctors appointments, medication, nerve block procedures, outpatient physical therapy and ultimately inpatient physical therapy. When people told me how strong I was, I was angered. I didn’t feel like I was strong, I just felt like I was perusing my only option… continuing. Life can change in an instant, in both good and bad ways, and you’re strong enough to handle everything life throws at you. You must learn that when things are bad, we must hold on as tight as possible – and when life is good, we must embrace every opportunity.

2. Suffering is a choice.

Obviously this is easier said than done. One of the hardest things to do is to learn not to focus on the pain. It has taken a long time, but I’m living life to the fullest despite pain because crawling into bed and missing out would just make me feel worse. Of course there are circumstances where pain wins and that is because I am human. For the most part though, I try to choose “pushing through” because I’d rather pay the price later than miss any opportunity.

3. Getting multiple opinions doesn’t make you difficult, it makes you smart.

The first doctor who diagnosed my CRPS didn’t give me many options. He offered medicine that ended in prophylaxis and nerve blocks. Beside those he didn’t have anything else for me to try. The second doctor I saw tried an inpatient epidural which also had no effect. The third doctor I saw told us about inpatient pain rehabilitation programs. Without all of these options I never would have found what worked for me. You are the one in charge of your care and if you don’t think you are getting what you deserve as a patient then you can switch. You’re in control of your care.

4. Never compare your pain to others.

Chronic pain isn’t a competition. One person doesn’t hurt worse than the other. Just because one person is bedridden doesn’t mean they are hurting worse than the people who aren’t. On the other hand, just because someone isn’t bedridden doesn’t mean they aren’t still struggling. We all cope with things differently and that’s OK.

5. Searching online can be helpful, but also scary.

When you search online for CRPS you will find some very daunting information. You see scary pictures and read scary testimonies of people who don’t get better. When you search online you are probably going to find the worst case scenarios and that will scare you. The good thing though, is you will also find support and tips on how to manage CRPS and what treatment options there are.

6. You’ll learn who is really there for you.

Friends and family may leave. Not everyone understands and you can’t really expect them to. You can teach and explain all you want but sometimes chronic pain is too much for others to handle. This doesn’t make them bad people, it just means they weren’t meant to stay. You’ll also have some people who step up and help you through the lows and celebrate the highs. True friendship is revealed during the most trying times.

7. Meeting others like you can make all the difference.

Just knowing you aren’t alone in the scary world of chronic pain can put you at ease. Knowing you aren’t the only one who feels like your body is engulfed in flames can be comforting. Having someone who understands and can give you advice from the inside can make you fight a little harder. Some of my best friends are also fighting this beast and I wouldn’t be where I am today without them.

8. A treatment that works for one may not work for all.

You may have to try many treatments before you find the right one for you. Some people take pain medicines, some people get infusions, some use nerve blocks to find relief, and others enter chronic pain rehabilitation programs. It’s OK to keep trying things until you find what works best. Just because one person uses one treatment doesn’t mean another can’t find relief from another.

9. Life goes on.

When I was first diagnosed I thought that I would never have a life. I thought that all my goals were unattainable. I didn’t even think I would have a chance at anything I previously wanted. Your whole life doesn’t have to be about your pain syndrome. You’re allowed to move on. You’re allowed to enjoy life. You deserve to be happy. Will you still have bad pain days? Absolutely. I’ve learned though that one pain day isn’t going to ruin me. I will be OK. I can do whatever I put my mind to.

10. It can be a blessing.

If I was never diagnosed with CRPS I wouldn’t be the same person I am today. I wouldn’t want to be a physical therapist and help others who experience chronic pain. I wouldn’t be as strong as I am. I wouldn’t be as determined as I am. I wouldn’t know that everything in life is a gift and we shouldn’t waste it. I now know that I can make it through anything. This disease used to be my biggest fear:

“When will the pain return?”

“Would I lose my ability to walk again?”

“Am I ever going to be the person I want to be?”

I no longer wake up scared of my pain. I embrace it. It is part of me, but it isn’t all of me and one day it will be useful to me.

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Originally published: August 24, 2017
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