Written by Krystal Jones for the RSDSA blog.
My name is Krystal Jones and this is my story about how my journey started.
Around the age of 15, my left knee started hurting seemingly out of nowhere. It started out with a little pain and then it got progressively worse over the years.
I was diagnosed with CRPS/RSD back in 2014 by pain management doctors, but the cause of my pain was unknown at the time. Therefore, some doctors told me that I didn’t have CRPS because I was “too young” to be going through that much pain. They thought I was crazy and that I was imagining this pain. They said there was nothing else they could do for me. However, I never gave up.
I consulted with various specialists, including pain management doctors, orthopedic surgeons, sports medicine experts, my primary care physician, physical therapists, rheumatologists, neurologists, and a few behavioral therapists to see if I had CRPS. I tried so many treatments including medications and supplements (with a lot of allergic reactions), different types of topicals, ointments, several injections, multiple surgeries and procedures.
After all of the consultations, I suspected that my first knee surgery, an arthroscopic knee procedure on November 2, 2006 to repair a cartilage tear in my left knee, might have triggered my symptoms of CRPS/RSD as the pain in my knee began to get worse after that. I do not know how the tear came about because I do not remember falling and I did not play sports.
Throughout the years, I have faced numerous challenges, yet I have always overcome obstacles. In May 2020, a former primary care doctor diagnosed me with CRPS Type 1 after I experienced severe, disproportionate pain and underwent various tests, including X-rays, CT scans, nerve test (EEG and EMG), physical therapy, extensive family medical history evaluations and blood work.
Daily life is hard because my symptoms vary and affect both of my knees and feet. CRPS has changed my life. Sometimes I feel ok, but then I have tremors in my right arm and leg that come and go. I start stuttering and I have panic attacks. I sometimes feel confused and it’s hard to hold a conversation. I have brain fog and sometimes it’s hard to decide which leg I want to move first. I have throbbing, sharp, and shooting pain in my knees in addition to muscle spasms in my back that come and go. I have burning pains at the top of my feet and in between a few of my toes. I am on disability. I worked for 14 years as a cashier at a supermarket while dealing with chronic pain.
I wish people who don’t have CRPS/RSD could understand that we are asking for support, comfort and compassion as this is what we go through every day. It is not easy and we try our best to push through. This burning, fire, intense pain along with other symptoms is a constant battle. This pain is REAL!
Things that help me get through my journey include praying daily, meditating, reading books, writing in my journal, relaxing, listening to music, adult coloring books and spending time with my family. I also have a permanent Dorsal Root Ganglion (DRG) stimulator implant in my back.
I have been married to my amazing husband for five years now. I do not have any kids of my own, but I do have one bonus son. I have one sister and one brother and through them I have two beautiful nieces and two handsome nephews.
Krystal recently self-published her first book titled Overcoming Obstacles- This Is My Testimony. Feel free to connect with her on Facebook, Instagram, and via email.