Written by Rocky Odell for the RSDSA blog.
I am but one face in pain out of millions
My name is not important. However, my PAIN is very important.
A physician triggered the monster I now live with. CRPS, also known as Complex Regional Pain Syndrome, is a pain disease with no cure and is very misunderstood. It has crippled my body. I live with pain often beyond description. It is a very real disease often called the most painful disease known to man. It is also called the suicide disease.
All the faces of pain share pain from diseases and injuries we never heard of and certainly never wanted. We all suffer in ways the healthy cannot even fathom. Those of us called legacy, high impact pain patients suffer diseases/conditions that destroyed our careers and our lives. It is said there are twenty (20) million Americans who are identified as high-impact legacy patients.
Almost all faces of pain were treated with alternative treatment modalities before being placed on medications only. Our physicians were responsible for ensuring every treatment was tried before opioids and other pain-relieving medications were ever started. I knew opioids were addictive, however there is a distinct difference between addiction and dependence. They cared!
My pain was treated by:
- Lumbar Sympathetic Blocks
- Two concurrent Temporary Epidural Catheters that ended up causing staph infections and more surgery.
- Three (3) different Spinal Cord Stimulators.
- Two (2) Intrathecal Pain Pumps
- Two (2) Brachial Plexus Temporary Catheters
- Stellate Ganglion Blocks
- Intrascaline Blocks
- Axillary Blocks
- High Dose Lidocaine Clysis procedures requiring five days each in the ICU
- Lidocaine Drips two to three times a week in MD office for several weeks
- Subq 20% Lidocaine injections at home
- Cryoanesthesia where an offending nerve was frozen
- Two (2) Chemical Sympathectomy’s (nerves burned)
- One Surgical Sympathectomy where five inches of nerve ganglion was surgically removed
- Bier Blocks
- Trigger Point Injections
- Physical/Occupational Therapy
- Psychological visits
I am sure I have missed some treatment modalities. I/We do/did everything asked of us, everything before being placed on opioid pain medication. No one wanted our pain gone more than we did, no one! Often these treatments only served to worsen our pain, to even cripple us further. For me, all I underwent caused my disease to spread from my left foot to now encompass my whole body in just over four years! It is all very well documented in my medical records. My disease has crippled my body horribly. I have lost the use of my dominant right hand; my left hand is following the right. I have bilateral thumb fusion meaning I have no grip, none. We signed pain contracts and were subjected to regular urine testing. Many had to undergo random pill counts.
For the faces of pain, we suffer even more now because we functioned and functioned well on often high-dose opioid pain medication. It was ALWAYS STARTED LOW and titrated up. Then in 2016, the CDC Opioid Prescribing Guidelines came about. Those involved in writing the guidelines were not pain management physicians and none of them understood the term chronic pain. The faces of pain suddenly found with no warning our long-term pain medication was suddenly tapered and or stopped suddenly. We weren’t even included in a tapering or cessation program. It just suddenly stopped. Far too many of us are in our 50’s, 60’s and 70’s. I had just turned 70 and the opioids were stopped with absolutely no thought to my safety or health.
Now there are millions of faces of pain, suffering needlessly because of those who abuse illicit drugs like Heroin, Carfentanyl, Methadone, Methamphetamine to name a few. Those who abuse illicit drugs are not monitored ad certainly do not sign any kind of contract. It is a rare face of pain that goes to the street for illicit drugs.
What in the hell does the government want from all the faces of pain who have done no wrong and never abused any drug? Do you want all the faces of pain dead? Seems like it. May you nor anyone you ever care about experience what we do, the pain we all feel we would never wish on anyone. Why are you causing the faces of pain to suffer needlessly? All I can say is shame on you for going after good doctors that directly affect the faces of pain. Shame on you.
Please consider making a donation to RSDSA today!