Three Words Changed My Life – “You have CRPS.”

By Ivy Bagley

CRPS, or complex regional pain syndrome is one of the worst pain conditions. Although this condition has been recognized since the Civil War, there is still no cure. CRPS can develop from injuries, surgery, or an accident. Often, it takes months to years to be diagnosed, making the treatment options even more limited. My injury was completely preventable; yet, I am forced to deal with the consequences of one person’s choice forever. CRPS will often go into remission or improve but it is always there, lurking in the background. Any slight injury can trigger it to be worse or spread. Surgery on another area can cause it to spread. As a patient, I have found many health care providers do not have knowledge of CRPS.  And, the knowledge within local communities is severely lacking. I also see strides are being made to educate both providers and the general public on this disease. More and more people are learning about CRPS through social media and awareness events.

So, what exactly is CRPS? I like to describe it as hell. A constant burning, nagging pain that doesn’t let up. CRPS is rated higher on the McGill pain scale than natural childbirth. Many patients loose function of their limbs. They experience skin color changes. Some patients are sensitive to cold. Some can’t stand warm temperatures. A simple touch can set off the intense pain signals. I have slightly bumped my hand and experienced pain for months.

Despite having this disease, I am one of the lucky patients. I know many reading this are thinking, “she’s lucky??” I found a treatment through Regenexx- utilization of nerve hydrodissection. Although this treatment helped restore my hand function, it is not covered by insurance. I am lucky in that God provided avenues for me to receive care and I pray insurances will recognize the benefit of PRP/Stem Cells.  I am lucky because I was diagnosed early. I began Occupational Therapy with a certified hand therapist (over 3 years of therapy would follow) within 2 days of my diagnosis. I am lucky because my OT told me- openly and honestly- I was in a battle and I would determine the outcome.  Four years later, I still wake up to perform my OT exercises. I am lucky as so far, we have kept this disease from spreading. Yet, I also know how easily it can spread. I also recognize the difficulty in only having one arm that can be utilized for even a simple blood pressure.

But, I still advocate and educate for myself and other CRPS patients. We need better treatment options, more understanding, and community education.

I am thankful our Greenville Mayor PJ Connelly, proclaimed November 4, 2019 as “Color the World Orange Day.” This day was set aside to bring awareness for this condition. I am thankful for SCI technologies owned by Mike Roberson, for agreeing to turn their lights orange that night for awareness.  Please join me in wearing orange that day and sharing a photo on social media with the #CRPSORANGEDAY.

Together, we will change the course of this horrible disease.

Remember- WEAR ORANGE November 4, 2019 and help educate others on CRPS!


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