Developing CRPS/RSD and Finding Hope

Hi there! My name is Katie and I’m the blogger behind Upcycled Treasures and A Handcrafted Wedding.

I was diagnosed with CRPS back in August 2012, and remember how difficult it was to find information and inspiring stories. In fact, I generally ended my search feeling more discouraged than when I started, and this only seemed to make my symptoms worse. Can anyone else relate?

The RSDSA website was the best source of information I could find, which is why I am so excited to share my story with you. I want you to know that there is hope, and not to be discouraged by what you read. However, I’d be lying if I didn’t admit that I am also a little scared of what you may think of my journey.

You see, about a year ago a link to my story was shared on the RSDSA Facebook page, and there were several negative comments shared along with it. As a DIY blogger, I like to think I have a thick skin when it comes to the opinions of others. However, when it came to sharing my personal story I realized my skin may not be so thick after all.

For me it all began with a game of volleyball with friends. The next day I had a bruise on my right wrist but didn’t think much of it. Within a few days I was no longer able to use my right hand for the simplest of tasks, and the slightest touch was more painful than I could bear. The temperature difference was probably the strangest part, as my right hand was now ice cold in comparison to my left.

I had to readjust my computer station at work so that I could move my mouse and type with just my left hand, and I remember how difficult it was to push through the pain each day. The sympathy glances I received from coworkers was uncomfortable, and I lost count on how many times people asked if I had carpel tunnel.

Several weeks and doctor visits later, I finally had a diagnosis, CRPS.

Unfortunately, I was also told that there was no “cure,” just treatment that would help subside the pain. My first thought was if I would ever be able to have children, or hold a baby. It was difficult to imagine these things when I couldn’t walk my dog or peel a potato. There was no holding back tears as I feared for an uncertain future. I was prescribed some pain medication and referred to both a pain specialist and a physical therapist that I would now need to visit several times a week. My husband was my rock during this entire process, and was always there with encouraging words to help me remain positive. I told myself over and over that I would recover from this all very quickly. After all, if there was no timeframe for my hand to start functioning again, that meant it could happen any day now, right? I am a strong believer in mind-body control and had to remind myself not to worry about the future, but focus on the present moment. I practiced my hand exercises several times a day while telling myself “this feels good” every time I used my hand, and to my surprise, it did. There were moments where I had to stop, take deep breaths, close my eyes, focus on being present, and then start again but I improved every day. It may seem ridiculous to some but I believe I “tricked” my brain into thinking everything was okay, and that helped me overcome both my fear and my pain. It’s been 3 years since I was diagnosed and do I still have pain? Yes, but I’ve learned how to manage it without medication. Is the temperature in my hand still different? Yes, almost daily. Do I remain positive? Absolutely! My hand still gets weak while working on certain projects, when I spend too much time on my phone {booooo}, or from typing away on my computer {which is practically every day}, so I make sure to take breaks and practice my hand exercises. I also keep a portable heater and heating pad next to my computer and use those almost daily. In fact, my portable heater is on right now as I write this. Sometimes I feel guilty for not being as active in the RSDSA community, but the truth is I don’t like to talk about my situation too much because every time I do, the pain comes racing back and fearful thoughts quickly enter my mind. This started to happen when I thought about sharing my story here, but rather than drift off into negative thoughts about how this pain could impact my future or get scared that it may get worse or never go away, I took some deep breaths and reminded myself to stay present. A few moments later the pain subsided. You can call me a weirdo or crazy, but I am a true believer in the power of positive thinking, and being in “the now”. This doesn’t mean it always comes easy, but I know that I have control over my thoughts and that positive thoughts lead to positive outcomes and visa versa.

The best advice I could give someone going through this is to stay present. Don’t think about how this happened, don’t worry about what affects it could have on your future, and as difficult as it may be try not to think about the pain you may be going through. Instead, take a moment to take in all that is around you, take a deep breath and focus on what you see, what you hear, what you smell, and tell yourself you feel good. This may seem awkward or feel like a lie at first, but keep repeating it to yourself and pretty soon you will know it to be true.

I’m sure I will receive a lot of judgment on this and that’s fine. This is what works for me, and if I can give hope to just one person that is reading this, then it was worth it.

I was lucky to be diagnosed pretty early on, and for that I am grateful. There wasn’t a lot of information available 3 years ago, there still isn’t enough available today, and I think it’s important to raise awareness and bring optimism to others who have been diagnosed with CRPS, or know someone who has.

The truth is, being diagnosed with CRPS made me realize that life is too short not to be doing what you are passionate about, and I’ve been following a creative path ever since. I feel so blessed to be doing what I love, and for this reason I donate 5% of my proceeds from invitation sales to the RSDSA.

You can read more of my story here, and feel free to email me with any questions.

Remember, if there is a will, there’s a way, and all that matters is this moment. Right. Now.

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