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What to Do When You've Been Diagnosed With CRPS

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I had been injured and was not healing as I should be. I was experiencing strange feelings in my foot and having burning pain instead of less pain. I should have been getting off the crutches and walking, but instead my pain level was increasing and I was still unable to walk without the crutches and the walking boot I’d been put in months earlier. So I was referred to a physiatrist who happened to have a very poor bedside manner. He examined me which was very painful because for some reason it was getting harder and harder to stand anyone touching my foot.

And then he said, “You have reflex sympathetic dystrophy. Also known as CRPS [complex regional pain syndrome] type 1. Google it,” and wrote me a prescription.

I don’t recommend learning about your condition solely from Google, as you can end up seeing so many worst case scenarios you will scare yourself silly. If you have CRPS, don’t look at the Google images. Just don’t. Stick to websites that are actually dedicated to teaching about the condition, like RSDSA, Burning Nights or American RSDHope. On those three websites I was actually able to learn about my condition and become more knowledgeable than many doctors I come across. Of course you can do a lot more research if you are so inclined (I do!). If so, Stanford performs a lot of research and studies on CRPS and has many video conferences you can watch on YouTube.

Remember that your doctors work for you – not the other way around. This means you have the right to “fire” your doctor. Needless to say, the doctor who gave me the diagnosis was quickly “fired” and I found another pain management doctor with a much better bedside manner who was more concerned with working with me, talking with me and helping me better understand my condition and manage my pain.

But even then, CRPS was such a huge thing to take in. I was overwhelmed. I thought I’d never improve from where I was, barely able to touch my foot to the floor. I was terrified of all the horrible things I read about – CRPS spreading and getting worse. I was already off work on disability, but would I ever return to work again? How would I manage everything at home on crutches forever? CRPS can also carry with it depression and anxiety, and learning to manage and deal with those are another huge undertaking. They are a big part of the disease that gets “swept under the rug” frequently. My advice? Don’t let this happen. Advocate for yourself and speak up. Get treatment and help for all of the aspects you are dealing with. Therapy can be a big help, and so can medication. And a big bonus is that some anti-depressants also help with pain management.

It has been more than a year since that fateful day. And contrary to all of my fears, the world hasn’t caved in and I’m surviving just fine. My pain management doctors are still working to fine tune the right medications for me. Physical therapy has done amazing things for my mobility, and though I still use crutches, I can get around much better now than before. I’m coming to terms with my limitations and filing for SSDI (Social Security Disability Insurance). And I’ve found The Mighty, which is an amazing place to read others’ stories and share my own.

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Image via Thinkstock.

Originally published: January 12, 2017
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