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Faces of Pain

Published on October 8, 2020 under RSDS General Info

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
  • Hypnosis
  • Acupuncture
  • 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.

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3 Comments

  1. Yvette Patrick

    I was diagnosed with crps after a simple bunionectomy. During the healing process my left foot turned blue. My podiatrist suspected it to be crps. My horrible pain journey began. I think the worst part and most unexpected obstacle that I faced
    was the feeling that know one believed the pain I was in was so bad.
    Did they think I was making it up? Or I should be over this?
    I’ve tried many options for pain treatment. Lidocaine infusion
    Physical therapy, sympathetic nerve block, Ketamine cream,
    ketamine one day in office drip, 3 nights in hospital 24/7 ketamine drip. My foot has to be wrapped in an ace bandage
    with two supportive socks, my knee in a supportive sleeve. In order to walk with no pain I have an aircast boot. All of these things support my foot and ease the pain.
    With all of the above treatments I have had I sadly only had
    a few days of releif, none were long term. I had prayed that the ketamine was the going to be the best one.
    I was never a fan of taking pain meds, fact being after giving birth to my boys, I barely wanted to take a tylenol.
    But, now that I’m close to being 60 I find myself taking
    Norco as the only pain relief. Do I dare tell anyone this?
    I will labeled an addict, or You really need to take those?
    I don’t have time to explain to anyone nor do I care to at my age the tough journey I have had in 4 years. I simply do what is best for me. Sadly to this day, the pain program sent me back to my primary Dr. On my last Norco bottle he has suggested I titrate back, due to tylenol being not good for my liver. This causes me stress, or is this the government again not wanting these drs not to give out pain meds for the
    “faces of pain” sigh!! Thank you all for reading, this is my first time writing please excuse my emotions!

  2. Michael Lawrence

    I am recently diagnosed with crps in my left foot after a fall on my left side, then left hip surgery to replace my hip, and to repair and reattach my tendon. Physical therapy for the hip went well, but I continued to have pain in my left foot and everyone thought that this would go away and was a normal part of hip treatment. Eventually, a PT person recognized that this was not normal pain and sent me to a pt person who was familiar and diagnosed me with crps. the use of some pain relief med’s coupled with the pt is where I am at now. I must use a cain to walk, but hope to not use it in the future.

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