Welcome to my CRPS Journey

Hi, I’m Stacey! Like most people with this diagnosis, I never thought that I would be diagnosed with a rare, chronic illness that the medical establishment still does not know much about. To start out, I thought that it would be a good idea to share what led to me developing Chronic Regional Pain Syndrome (CRPS) and give some info on what it is for those that are unfamiliar. CRPS Type I impacts about 5 people out of every 100,000 according to a 2017 CRPS update in the Burns & Trauma Journal [

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] . CRPS affects about 200,000 people per year in the US. Type I is CRPS following an injury, which is the type that I have. I did not realize how rare it was until I started doing research on the internet.

My Experience with CRPS

It All Started With a Broken Leg

After I broke my leg in January 2024, I was in a hard cast for 6 weeks. This is typical of a clean break that does not need surgery. After 6 weeks, I felt that the pain was still too great to transfer to a boot but followed my orthopedist’s recommendation and began wearing a boot. I did experience some improvement. When I had my 4 week follow up with the doctor (10 weeks post-break)  I still had symptoms like swelling and discoloration of the foot and ankle. My doctor examined my foot and told me that I had CRPS. He called it a “classic case” and even asked if a student could come in to look at it! He acted very casual about it, as though it were common. He said essentially that sometimes the nerves get “turned on” by the injury and don’t turn off. The doctor said that he would refer me to pain management and they would “reboot my nerves with a steroid shot, kind of like how you reboot a computer.” I wasn’t thrilled to have a new diagnosis but as I told my friends and family “it sounds scary but it really isn’t a big deal! I just have to have a shot.” Then, I read up on CRPS on the internet. The reality of life with CRPS for most people was NOT as simple as my doctor made it sound!

As I read about people’s real life experiences, I started to get scared. My pain was in the 2-4 range on a scale of 1-10 but there were people out there living in constant, excruciating pain. People talked about having no symptoms for three years and then all of a sudden, one day waking up in excruciating pain. I started to get concerned, reading about treatments not working or even making things worse. What was this illness I had been so casually diagnosed with?

My Symptoms

• Swelling in the foot, toes, and ankle that did not improve over time.
• Pitting edema (fluid in the foot and ankle that would not immediately bounce back when pressed.)
• “Pins and needles” feeling on the bottom of my foot at times but not all the time.
• Extreme discoloration whenever my foot was not elevated. Change in color happened almost immediately when not elevated.
• The discoloration progressed up my leg to my calf as I began to put weight on the foot.
• Skin on my foot looked uneven and “mottled” darker in some places even when elevated.
• Random numbness. Sometimes one toe would go numb, then another would. Sometimes just the bottom of my foot would be numb.
• Random pain. I would also have pain in just one toe, then another.
• Referred pain. I would have pain that seemed to spread around my ankle so that it hurt on the opposite side from where it was broken.
• “Popcorn” feeling in my foot and leg. Random popping feeling that was similar to the popcorn feeling but also different.
• Feeling of warmth to the foot and leg when touched.