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Find Anything to Help Cope

Published on May 20, 2020 under RSDS General Info

Written by Julianne Williams for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed RSD when I was 38. I fell down some outdoor stairs and flew into a parking lot. I crushed about eight bones in my foot and ankle.

What has daily life been like since your diagnosis?

My life has been destroyed by this disease. I was an avid runner and an RN both of which I have never been able to do again. My day to day life is totally controlled by pain. I have no ability to make plans because I never know how bad my days will be.

What is one thing you wish those without CRPS/RSD could understand?

I wish people would understand I am never pain free, but some days are better than others. I was a highly successful RN with not a lazy bone in my body. Now anything I do is so hard.

What advice would you give to newly diagnosed Warriors?

Get tested early. It is the only thing that can change the course of this disease. Also avoid any surgery that is absolutely not necessary. It can cause CRPS to spread.

What activities or treatments have helped you find temporary or long term relief?

I have done everything from from spinal cord stimulators, intrathecal pump, and ketamine treatments both inpatient and outpatient. I have taken every medication you could imagine. Nothing works well, but I like the pump because it is around-the-clock treatment.
I have had at least 10 surgeries in my foot/ankle. I had a granuloma in July 2017 which required back surgery. Since then, I have full body CRPS which is very frustrating. I had a heart attack in 2014 caused by sleep apnea and pain medication. This is a journey and can be so frustrating on so many days. You have to find anything to help cope. I quilt on days I feel better to help with distractions. Do not let others bother you. You know how real the pain is, they do not. Also get a good counselor.
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