This Is CRPS

Robyn’s Story

I learned I had CRPS after fusion back surgery. Almost 15 years ago, I had two bulging discs from a softball injury, from which I suffered dearly. I could barely sit for a year. I took ibuprofen at the maximum dosage for many years after to tolerate the pain. I also exercised; mountain biking was my favorite activity and I rode off-road three-to-four days a week for as long as I could tolerate the ride. Then everything changed when I switched jobs and took on a two hour commute. I no longer had time to bike or exercise. I began to experience severe sharp pain in my legs when driving. I began spinal injections. The pain continued for over three more years before I asked to see a surgeon. I found out I had  spondylolisthesis, which is degenerative disc disease, and scoliosis of my lower back. I started aqua therapy and physical therapy again to try to help ease the pain, but nothing helped. The surgeon performed TLIF fusion surgery and I woke up with a tight, squeezing, painful feeling of my right ankle. The sharp pain that went down the front of my legs was gone. A month later, my right leg turned purple and I could not walk.

I was admitted into the hospital for five days. I went through a CT scan, which showed that nothing was wrong with my fusion. They loaded me up with antibiotics and pain meds. Then, a neurologist, who I took biochemistry with at FSU, did a nerve block on me to ease the pain. It did not help. They loaded me up with fentanyl patches, high doses of gabapentin, lyrica,  cymbalta, and zanaflex. I started physical therapy and home physical therapy. My pain level was too high for the therapist, but the doctors would not give me more pain meds. Next, I went through several pain management doctors to help manage my high level of pain.

I continued taking opioids for a little over a year before I decided to wean myself off. When I did, I realized that my back was in an incredible amount of pain. I went to Mayo Clinic, which performed a bone scan and a more detailed CT scan. It showed my facet joints were inflamed around my fusion, but my level of pain was too high, even including the advanced osteoarthritis in my SI joints. The doctor thinks the CRPS has spread to my back.

“I continued taking opioids for a little over a year before I decided to wean myself off. When I did, I realized that my back was in an incredible amount of pain. The doctor thinks the CRPS has spread to my back.” – Robyn


I continue to struggle walking, and now I have trouble sitting or standing for a short amount of time. And I have severe pain in my left hip. My pain level is 6-9 daily. The night is the absolute worse. I now take gabapentin 600 mg x3, baclafen 150mgx3, Cymbalta 60 mg x1, Mobic 15 mgx1, vit D, and vit C. I continue to have muscle cramps or spasms, and I may need more muscle relaxers. I’m scheduled for my second facet injections by my pain management next week, and I have a trial spinal cord stimulator scheduled in a few weeks with Mayo Clinic. They said they can address the pain in my right leg and back. I’m hopeful. My fusion surgery was done on 7/11/2016.

Last week my work separated from me. I’m receiving long term disability. Now I have to jump through hoops filling out forms and being proactive, because they are not. I am also waiting for my social security hearing. It’s very frustrating; I was at the top of my career and I have two children in college. I am thankful to my fiancé, now husband, for moving up our wedding date so that my daughter and I can continue to have healthcare coverage. If I wasn’t engaged when I started long-term disability, I’m not sure what I would have done. Private insurance was too expensive. Finances are still very tricky. And this condition makes me feel worthless. – Adapted from Robyn 

Help Robyn fight the flame. Every year we raise money to donate to the RSDSA to research CRPS. Register for our Fight the Flame 5k or donate below:


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