National Pain Strategy: The Opioid Crisis Truth

Page through a magazine, and you see the ads: gaunt, defeated faces of those destroyed by addiction. Rheumatology patients look much the same when pain is poorly controlled.

Given our family history in the trenches of autoimmune arthritis, I was asked to support, and blog about the National Pain Strategy (NPS) petition.  Well, I never take things at face value, so I decided a little investigative journalism was warranted.  I am in no way affiliated with the NPS, and opinions contained within are my own.

There are brilliant tools for pain management in the National Pain Strategy, and it is a thing of beauty to see acknowledgement of attitudes, biases, and patient stereotypes as barriers to treatment. On the surface, this seems a reasonable and broad-based approach to caring for patients in chronic pain.  In reality and practice, rheumatology patients are now bearing the undue burden of cautionary care.

Everywhere I turn, there is another news story hammering the Opioid Crisis.  At what point did chronic pain become criminal?  The NPS data focuses on drug abuse, yet most articles about the Opioid Crisis imply negative stereotypes for patients managing chronic pain. So often there is an assumption that patients with chronic pain do not pursue a holistic approach.  If I relied solely on my opioid for pain management, I would be miserable, depressed, and would suffer significant loss of motion. My use of meditation, yoga, walking, clean eating, and creativity is self-prescribed — with unlimited refills.
We’ve been lead to believe we have a champion in our fight for functionality. Instead, implementation of the National Pain Strategy is a bit of a sales job.  I recall Marge Simpson’s lesson in the fine art of sales:

 

“There’s the truth (shaking head), and THE TRUTH (big grin).”

Autoimmune arthritis patients are being lumped into this crisis purely by association with necessary treatment.  It feels as though we are under assault by legislation, medical personnel, the media, and society.  Truth is, we must hedge against ourselves in treating our unceasing chronic pain.  Each prescription bottle of opioids is a Hedge Fund:  balancing each day’s productivity against future physical activity vs current dosage and disease progression.

Despite the NPS acknowledgement that “74-96% of chronic pain patients use their prescriptions without suffering from opioid addiction,” rheumatology patients are suddenly hitting roadblocks in acquiring opioids to facilitate life.  Not existence, but life.
Earlier this year, my rheumatologist moved across the country.  I wrongly assumed his diagnosis and plan of management would carry over.  After reviewing my lab results, and a brief, clothed exam, my new rheumatologist declares my disease is under control.  Ah, thank the heavens!  I responded that my labs looked the same the day I was diagnosed with Seronegative Rheumatoid Arthritis.

She responded by reducing my opioid dosage by 60%.   And just for glee, my body decided to view all NSAIDs as allergens nine years ago.  The body was done with these, finis.  Try selling an NSAID allergy to a new physician.  I am most fortunate that my previous rheumatologist documented my reaction as a severe allergy.

The mission of the National Pain Strategy (full draft here) is a brilliant and reasonable collusion of physicians, researchers, and patient input. Yet somewhere between brilliance and reality, autoimmune arthritis patients are suffering.  We are forced to ration our pain relief.  In real terms, this means rationing our functionality as productive humans — both physical and mental activity is hampered.   People who have never experienced the pain of autoimmune arthritis cannot grasp the distraction of unrelenting systemic pain.

I’ve been puzzled at the sudden focus on this Opioid Crisis, and mused at all of the other public crises we could declare.  I looked into the sudden escalation of opioid prescription abuse, and it seems my hunch is shared:

Bob Twillman, executive director of the American Academy of Pain Management said the “new initiative is a fine idea,” but he’s more concerned with how the National Center for Health Statistics (NCHS) reported its data this year.
“It appears to me that illegally-manufactured fentanyl is being lumped in with legal prescription opioids, accounting for the apparently huge one-year increase in prescription opioid-related overdose deaths.”  He added: “I’m very concerned that this inappropriate lumping (assuming that is what is happening) could result in even greater pressure on opioid prescribing, further increasing the access problems we’ve been hearing so much about.” – Arlotta, CJ. White House: Opioid And Heroin Overdoses Are On The Rise (Contributor) Forbes.

I have to ask, what is the motive of declaring a crisis?  The bipartisan Comprehensive Addiction and Recovery Act (CARA) was signed into law 22 July 2016.  The act authorizes $181 million in new funding each year, which must be funded annually through appropriation.

In general, the mission of the National Pain Strategy is a brilliant and reasonable collusion of physicians, policy makers, researchers, and patient input.  Still, I have to ask:  who profits in the Opioid Crisis?  Clearly not the autoimmune arthritis patient.

We are on the front lines of a war in which our immune systems fired the first shot.

 

 

 

Same As It Ever Was: Chronic Pain

You may ask yourself…well, how did I get here?
8zeenvvzlrhhq

 

And you may ask yourself…how do I work this?

As a rheumatology patient, you know when you arrived.  If you’re lucky, you know where you are diagnostically.  With so many cross-over symptoms and comorbidities, the specific diagnosis is often less important than:  How do I work this??
 
Since the overnight onset of Rheumatoid Arthritis, figuring out how to work the problem has been foremost.  I approach any challenge in life with a calm bit of strength — though admittedly after a freak-out of variable duration.  My logical mind thought through how this changes my day to day life, my future plans, and how it affects my family and those who depend on me.  I needed to mentally set an approach for the long-term.  
What I am finding more difficult is how to cope in the short-term. The week, the 24 hours, the minutes of impatience with myself, with disease, and impatience then directed toward the world. Each moment in the rheum is one of “same as it ever was.”  Pain levels increase, or ease, stiffness varies, the clumsy hands and bumbling feet and ankles can be counted upon.  On days that I feel fairly zippy, fatigue or weakness can appear suddenly like a deep pothole on this rheum highway.
Into the silent water
Another day begins — at sunrise, or at the pain witching hour, and I again ask myself:  how did I get here?  In the worst moments I’ve learned to put myself into the silent water.  Float just above the surface in a warm bit of ocean.  Warm water laps and repeatedly curls softly against my cheek, providing a counterpoint to the insistence of pain.  Pain may not recede with the tide, but I’m in a better place and I feel the warm sand.
Same as it ever was…Same as it ever was…Same as it ever was…
Same as it ever was…Same as it ever was…Same as it ever was…
Save as it ever was…Same as it ever was…
 
This is each day as a rheumatology patient.  We have to remember this is our life.  What we cannot change, we have to work around, over and through.  Yield for rest when we must, but don’t forget to  follow that squiggly road sign.  Explore new ideas and new places literally or figuratively.  Instead of letting autoimmune disease dictate my every action, I’d rather ask:
 
Where does that highway lead to?
 
 
Once In A Lifetime” from the album Remain in Light, written by David Byrne,
Brian Eno,Chris Frantz, Jerry Harrison, and Tina Weymouth.

Painsomnia – WWJD: What Would Jim Morrison Do?

 

Painsomnia woke me at 3:45, and at 6:30 I’m still awake.  So I ask myself, WWJD?  As in, What Would Jim Morrison Do?  I’m pretty sure that beautiful boy, desert guru would treat pain as a free floating, mind-expanding experience.  
 
You know the day destroys the night
Night divides the day
Tried to run
Tried to hide
Break on through to the other side
Break on through to the other side
– The Doors
 
 

As I contemplate the hilarity of this, instead of pain, creativity begins to flow.  I walk duck-footed to the study to grab the tired, key-banging laptop.  Fingers are stiff and the silver box is heavy, but I lug it and the wood lap desk to bed.  Heating pad toasty, and a still snoozing pup is at my side.  He’s belly-up with paws comfortably limp.  Instead of my envy for his perfect rest, he should be envious of me enjoying the grainy, raw thrill of this 1967 TV performance of The Doors.  


I am grateful that most of the pain I feel from Undifferentiated Connective Tissue Disease is more of an insidious type that wakes me gradually.   Though mine is always present, I cannot fathom those who have no respite from instense arthritis pain.  I pray that my pain remains more casual.  At times it’s a creeping fog of cold pain that reaches each distant limb and digit.  Sometimes I have waves of pain, more often a constant ache that migrates.  Still, it is enough that it distracts me, or makes even my sarcasm go silent.  That’s a travesty, but humor remains my default so here I am.   Me and Jim, before dawn.   
 
Next we’ll wander the desert in technicolor dreams to the strains of an organ solo.
 
 
“You feel your strength in the experience of pain.” 
– Jim Morrison