By Beth Stillitano.
Editor’s Note: Beth Stilitano, a former teacher has had CRPS for over 20 years as a result of an injury at work. S he lives in North Carolina with her two amazingly supportive children and a devoted husband.
I have had CRPS for 20+ years.
There are many aspects of my life that I could talk about how CRPS has affected me or how I have learned to live with CRPS.
I fell, and, as a result, have had 4 knee surgeries. While trying to recover, my surgeon knew something was wrong and sent me to a pain management specialist. I was immediately diagnosed with CRPS. I chose not to believe him. I went to another doctor, and got the same diagnosis.
For the first 10 years, I was in Physical Therapy 3 days a week, using a cryo-cuff 24/7 as directed by my physical therapist and orthopedist. My pain management doctor had me taking Oxycontin, Vicodin, Zanaflex, Klonopin, plus others.
One day, I missed only ONE dose of meds – I just became violently ill. That day I realized my body was completely dependent on these meds. I began titrating off my medication on my own. For the last week, I checked myself into the hospital, where I was treated like a common drug addict (that is a whole other story which I’ll share in a future story).
I began trigger point injections, nerve blocks, epidurals, ganglion blocks: they eased my pain, but did not erase it for 5 years.
Then, they did cranio-sacral therapy for 2 years, which kept pain at manageable levels.
Calmare therapy was next – I kept an entire blog about this experience (which I’ll also share in a future post).
Then it came time for the 8-day, inpatient Ketamine infusion in the ICU with follow-up Ketamine 4-hour booster infusions.
Now, I have been going to a reflexologist for about 9 months. I do not quite understand how it works, but my pain has been reduced and I have regained some function in my knee.
CRPS began in my right knee. It has since spread to my right foot, right arm, shoulder, jaw, face, eye (affecting my peripheral vision).
It has also brought along some other health problems: like dystonia, clinical depression, non-presenting Cushing’s, keratoconjunctivitis sicca, Barre Lieou Disease, Adrenal Adenoma, Fibromyalgia, and others. Having surgery to remove my adrenal gland and tumor was an interesting story – learning to work with the doctors/nurses/and hospital staff.
Traveling with CRPS was very difficult at first until I finally learned how to work with the disease instead of complaining that it just was not fair. Plans needed to be altered. (I wrote a whole story about traveling to Italy with a disability.) Adjustments to trips were made – and we resumed taking trips.
The proudest aspect about CRPS and my life is the Fight the Flame 5k. My son (when he was 12 years old) started this race to raise awareness and funds for CRPS. We just held our 5th annual 5k. I do not yet have exact numbers but I can say I know we have raised/donated over $100,000.
From this race, we have also started the Fight the Flame/CRPS Awareness College Scholarship for Charlotte High School Seniors; and we have established the CRPS Support group of the Carolinas.