The Painful Side of The Opioid Crisis

I am among the most vocal of people that I know - and it took me 5 years to find the courage to tell this story publicly. 

What should worry everyone reading this is: who isn't telling theirs?

In 2012, I noticed a weird sensation in my left arm. "Graceful" has only ever been an adjective applied to me sarcastically, so it wasn't entirely out of the question that I might have bumped in to something and just forgotten about it. Over the course of a few days though, the weird sensation began to spread down my arm and in to my hand and at that point, I made an appointment to speak with my doctor.

She confirmed that the symptoms I was reporting were strange, but after examination declared that I was perfectly healthy and she did not feel that this was something to worry about. Though we didn't know exactly what it was, she very logically rationalized that I had irritated some junction of nerves and the symptoms would simply go away after some time.

The weird sensation evolved in to a burning sensation in both of my hands; it felt as if I were physically holding an actual ball of fire. My doctor suggested I try Benadryl. The burning pain in my hands evolved to what I described as broken pieces of glass surging forcefully through my veins from my forearms to my finger tips and also plagued my toes, feet and legs up to my knees. My doctor prescribed Neurontin and Norco and started referring me out to specialists.

Over the course of the next four years I was studied, poked, biopsied, prodded, shocked, scanned and subsequently declared perfectly healthy by nationally recognized Neurologists, Rheumatologists, Immunologists and Vascular specialists. Even a team at the Mayo Clinic reviewed my medical history and concluded that they would have no more to offer. One of the Rheumatologists proclaimed, "You're not dying!" to which I replied, "I'm not living, either."

I had resolved to dealing with this pain for the rest of my life.  While I did think that the Neurontin (and later Lyrica) and Norco helped me to at least be functional and productive during the day, my family would still have to pack my hands, arms, legs and feet in ice just so I could sleep at night.

My body could not have picked the worst set of four years to misbehave. Amidst that period of time 'The Opioid Crisis' was all the buzz in the news and changes were being made at state and federal levels to attempt to fix the problem and everybody (who probably wasn't experiencing chronic pain) had an opinion on the matter. 

The evolution as I lived it:

At first, my doctor could electronically prescribe Norco and I just had to show up at the pharmacy and pick it up when it was ready. 

Once opioids were no longer candidates for e-prescribing, I had to:

• Call or send a message to my doctor's office to let them know that I needed a refill
• Wait for my doctor to review my chart and either call me back or return message that it was ready - sometimes this resulted in another appointment prerequisite
• Physically present to my doctor's office to get the paper script
• Drive it to the pharmacy
• Wait for it to be filled or else come back later to pick it up

With all of the time it took to complete all of the steps that were largely out of my control, I started to plan ahead to request my refills before I actually needed it. That was acceptable for a little while, but then restrictions became once again tighter. The medical assistants started pushing back because by their count, I "should have had three days worth of pills left". I explained that sometimes it took longer than three days for the process to be complete end-to-end. 

By the end of 2015, I was reconciling medication prescribed by my doctor to me back to my doctor in spreadsheet form every single month to proactively justify my case that not planning ahead would leave me vulnerable to days with no pain medication.

I will note that even at that time, though they were unpleasant hurdles, they were completely understandable. We didn't have the exact numbers at the time but we now know that in 2016, Opioid overdoses accounted for more than 42,000 deaths, which was more than any previous year on record. An estimated 40% of those opioid overdose deaths involved a prescription opioid.

On the other side of this though are the 20.4% of U.S. adults suffered from chronic pain in that same year. For those Americans and their physicians came some very unfortunate and still seemingly unnoticed assumptions/stigma:

• Physicians prescribing opioids are lazy doctors
• Patients who are taking opioids are junkies

I experienced both sides of that stigma when presenting in extreme pain to a local Emergency Department and was sharply accused of being a junky by a physician. He sincerely apologized later in the visit and explained the immense pressure that he and his colleagues were under as it related to initiatives forced upon them due to The Opioid Crisis. 

To step aside from my story for one moment: taking action to prevent the 40% of overdose deaths is important. Along with federal programs, there are really great support groups for patients and families negatively impacted by prescription opioids, like Stop Opioid Silence.

To combat opioid addiction, exhausting all other options/avenues for pain relief is absolutely critical. There are going to continue to be cases like mine where an open dialogue needs to continue between patient and doctor, and space needs to be provided where that does not feel threatening for either party.

Wondering now what you can to do to help the 20.4%? Become a patient advocate. Join a patient advocacy group like Patients Rising. Share your own personal story. See to it that you or another trusted adult attend healthcare related visits with your loved ones. Patients tend to be their own worst advocates and sometimes an extra voice and perspective in the room are what is needed to get results.

I am happy to report that I have been pain-free for almost 5 years now. I don't know why I was fortunate enough to have been taking the maximum prescribed dosage for years and not also gotten addicted. I do know that I was extremely grateful for the drug because though it never fully removed the pain, for four years it enabled me function - to live.  

https://patientrising.com/

https://www.hhs.gov/opioids/about-the-epidemic/index.html>

https://www.cdc.gov/mmwr/volumes/67/wr/mm6736a2.htm

https://stopopioidsilence.org/