My Pain Journey: When Physicians Treated with Confidence to Now Fear of Reprisal from the DEA

I suffer from Complex Regional Pain Syndrome (CRPS), one of the most painful and difficult diseases to treat. Toss in fibromyalgia, multiple spinal problems and osteoarthritis for good measure and you quickly see pain was the center of my life.

2016 proved to be the year of marked change for me. In January my then CVS pharmacist informed me he would no longer be able to fill my Dilaudid prescription. He kept telling me 'something' was coming down the pike. It was the CDC 2016 Opioid Guidelines.

Granted, 900–4 mg tablets is a large dose but I had been on that dose for 16 stable years, along with Diazepam, Norco, Flurazepam, Robaxin and Lidocaine. All these meds were prescribed every month—no I did not have any problems. I was actually functioning, something I haven't done since December 2016, when the rest were stopped cold turkey, including Diazepam, a drug I had been on for over 20 years. It's a wonder I didn't die when the Diazepam was stopped. I was terrified I might. I was 69 at the time and should have been weaned off in a safe manner.

The Dilaudid was stopped in March of 2016 because my pain management MD didn't like the fact he had to go over my whole history every month with my Medicare advantage insurance mail order pharmacy I had to switch to. That was sheer hell. I never forgave that man. The rest were stopped in December 2016 to give my body a break, a break I was not ready to take. But my story is not unique, it's happening to countless other chronic pain patients.

I no longer functioned, quit driving and quickly remembered what a 10 on a 1–10 pain scale really was. I was in a fog, my ears began ringing incessantly, and all four senses were affected. It feels as if a mega-watt TENS unit is on top of my head, jolting me with electricity non-stop. The contractures from the CRPS have caused my right hand to clamp down completely. I lost the use of my dominant hand. The left hand now wants to follow suit. The saddest part is I am alone, I have no help. Physicians put me on all these drugs and they stopped them with no valid reason given. I do not trust any MD anymore.

My pain journey began after a workers' compensation knee injury and plantar fasciitis. By 1992 physical therapy no longer helped, nor did special shoes and inserts, so I underwent a 2nd right knee arthroscopy and the orthopedist was supposed to remove a painful heel spur that developed. Immediately post-op I knew something was wrong. The pain in my left foot was excruciating and felt like it was on fire. The doctor kept telling me it would get better … it never did.

I returned to California, as I had left an excellent career in aerospace to work towards my dream of becoming a nurse and had moved to Georgia to work in a hospital and return to school at age 46. My California workers' compensation physician sent me to a specialist. He took one look at my swollen and very red foot, asked me to describe the pain and quickly diagnosed me with Reflex Sympathetic Dystrophy (RSD). He failed to tell me what it was and I only found one paragraph at the library about Causalgia, the name given this disease by the civil war physician who named it. It was changed from RSD in the mid 1990's to CRPS.

In spite of the painful foot, I continued on my journey to become a nurse, became an ICU Nurse Tech, and again returned to school. I loved my job and had finally found my niche in life. I couldn't wait to become a nurse, no matter how long that took. Two years later the CRPS took my job and my dream away from me. I was devastated. Not depressed—sad, yes, but more angry than anything...