I was diagnosed with CRPS on February 15th, 2022 — a whole 3 months after my initial ankle sprain.
To start at the beginning: I sprained my ankle stepping off a very large curb on November 10th, 2021. After a few x-rays in urgent care, the doctor put me in a boot, gave me some crutches and sent me on my way. He told me it would take only 4-6 weeks to heal.
Two days later, I flew to London for what was supposed to be the work opportunity of a lifetime. Despite my obvious pain and the difficulty of traveling with crutches, I was determined to work through it. By the time work broke for holidays, I was walking like normal with only a few lingering pains. I ignored the pain, expecting it to go away like the doctor said.
I spent the holidays with my boyfriend Connor’s family in Maryland. Around Christmas, I noticed an uncomfortable pressure in my foot and leg, mainly when I was laying down or when my foot was dangling off a bar stool (I am 5’ 1”). By then, I knew something was wrong with how my foot was healing.
A few days before my flight back to London, I went to see a podiatrist in Annapolis to ask why I’m still experiencing pain. After a few more x-rays, he told me that my ankle never healed properly, shot me with cortisone three times, and put me back in a boot. I never got on the plane to return to work in London.
After the cortisone shots, my pain only got worse. I went to get a 2nd opinion from an orthopedic surgeon in Baltimore. By then I was experiencing color changes, temperature changes, and significant pain — sharp, stabbing sensations when I stepped on my left foot. He ordered me an MRI that showed no significant damage and left us no closer to the right diagnosis. Unfortunately, both doctors incorrectly attributed the color changes to tissue damage, and the burning/tingling to nerve damage such as a neuroma or partial neuropathy.
I was prescribed 25mg of Lyrica for my nerve pain and referred to another orthopedic surgeon back home in Los Angeles. Thankfully, he would be the one to point me towards an accurate diagnosis. After flying home to LA and seeing him in person, I called him crying while at lunch with Connor on a Saturday. I told him that my foot was turning purple and was ice cold. He referred me to an anesthesiologist and pain specialist, whom I met with on Zoom a few days later.
It was only after meeting with the pain specialist that I was properly diagnosed with CRPS under the Budapest Criteria.
The pain specialist assured me that we caught the syndrome early, and because I was young, the prognosis was good. He told me to start physical and occupational therapy as soon as I could, to increase my Lyrica to 50mg, and to see him again in one month.
Impatient as I am, I saw another pain specialist a few days later for a 2nd opinion, and he confirmed the diagnosis. He prescribed me more medication, directed me to more therapies, and commended my sense of urgency in receiving treatment. CRPS is a progressive syndrome that gets worse if you don’t receive progressive treatment. Waiting a month for a follow-up would have only allowed the syndrome to worsen.
That night, I was laying in bed with my boyfriend, the most scared I have ever been in my life. My entire body was hot and buzzing. I thought my emotional turmoil was causing the syndrome to spread throughout my entire body and that I was going to die. Connor tried to calm me down and gently rested his hand on my arm. His hand burned and prickled my skin to the touch. Choking on my words I remember saying, “You can’t even touch me without my skin burning.” It felt like a jellyfish was stinging and stabbing me with lightning and fire. I hope I will never experienced anything like that ever again. And I am sorry for those of you who are experiencing it now.
I couldn’t see my future anymore. I didn’t want live a life with pain. It wasn’t fair. And I was so angry.
The internet told me to prepare for a life of excruciating, incurable pain. This isn’t something you want to read as a twenty five year old young woman. It will feel like everything is working against you, that you are being crushed to your breaking point. You’re going to feel angry, scared, and most of all, hopeless. At least that is what it felt like for me. But I have learned that none of it is true.
One of the most important parts about surviving this syndrome is to believe that your body has the power to heal. It will take a lot of time, and will feel like an uphill rollercoaster. It’s my hope that in the upcoming blog posts and in the resources I include on this website, I can help make your road to remission feel more accessible and possible. We will get through it together.
In my next post, I’ll be detailing all of the treatments I received in LA from February - October 2022. I started lots of meds and saw many doctors, some of which were more helpful than others.
I heard once that people with CRPS are like unicorns, and there’s no point in comparing one person to the next. CRPS manifests itself differently in each person, and each person responds differently to each treatment. So please remember, my story is only one of many. That said, thank you for reading, and you can continue to follow along on my next blog post here.
