My Life and Pain Levels are Constantly Changing
Written by Jessica L. for the RSDSA blog.
How and when did you develop CRPS/RSD?
I first developed CRPS in June of 2014 at the age of 16. On June 12th I was playing Giant Jenga with friends when someone lost their balance and came down hard on my left foot. I had broken that foot four times in the past and barely thought anything of it. A few days later my foot began to change colors, swell, and become cold. Soon the pain was too bad for me to walk, but when I went to the doctor nothing was broken. After weeks of increasing pain I was referred to a pain specialist and was seen a few weeks later. It turned out that doctor had suffered from CRPS himself and I was diagnosed shortly after.
On November 1st, 2019 my CRPS spread. I woke up at 4am crying in pain. My back was on fire. As the day went on the pain spread through my chest and arms and I could hardly move. I went to the ER that evening and the next day I was admitted to the hospital. After a long admission full of ketamine infusions, steroids, and nerve blocks the pain had receded to just my upper back and I was sent home to adjust to my new normal.
What has daily life been like since your diagnosis?
When I was first diagnosed I lost my ability to walk. I spent a year on crutches and had to completely relearn how to walk. I tried my best to participate in activities with people my age but most of my efforts failed.
When my CRPS spread I had to quit my job, I could not lie down at all, and needed assistance to even stand up. I could only wear the softest baggiest clothes for months and I did not drive or go anywhere.
My life and my pain levels are constantly changing. I have had times where I am nearly pain free and times where my pain consumes my life. Currently my life is more “normal.” I have learned to cope with my pain and my pain is much more controlled. I work hard in PT to be better able to function. I rely on nerve blocks and medications to manage my pain and I made accommodations to go back to work.
What is one thing you wish those without CRPS/RSD could understand?
That even if I am having a good day it does not mean that I am not in pain and that if I say no to doing something it is not because I do not want to spend time with you, but that I just physically can’t. Treatments mean that my pain is better controlled and that I am able to function most of the time but they do not mean that I am cured.
What advice would you give to newly diagnosed Warriors?
Find a support network and advocate for yourself.
Reach out to family, friends, or an online community, find a hobby that you can do. All of these are things you can fall back on when you are struggling for help or even just a distraction.
Do not be afraid to tell a doctor that something is not working for you. Be open about your symptoms and the help you need and keep pushing your doctors, physios, therapists, etc. to find something that helps you.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
I look up to all of you so much! This disease is tough but you are tougher and you inspire and guide so many people who are newly diagnosed with this disease or struggling with any other form of chronic pain/illness. Keep fighting.
What activities or treatments have helped you find temporary or long term relief?
The most helpful thing for me have been nerve blocks. I have had temporary nerve blocks, pain pumps, and RFL procedures which have provided relief for various amounts of time. Physical therapy including desensitization and strength training have been so helpful provided I do not overdo it. Staying physically active as much as possible has also been very beneficial for me.
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