Just Take Tylenol?!
"You should be able to manage your RA pain with over-the-counter medications, like Tylenol and ibuprofen" is what my pain management doctor told me during my last appointment with him a couple weeks ago.
My immediate reaction was, "WHAT?!" I was really surprised and baffled hearing him say this. Is he joking? Sadly, he was not joking, which immediately made me furious and deeply disappointed that once again a pain clinic provider was not listening, understanding, respecting me as a patient or believing my pain.
"Do you know how severeRA pain is?" I asked him incredulously.
"Yes, of course," he replied in a huffy tone. "I've been seeing RA patients for 25 years." I very badly wanted to say that if that were the case, I was willing to bet that over-the-counter meds did NOT help any of those chronic pain patients, just like they do nothing to relieve my pain. But I kept my mouth shut, mainly because he wielded the power of being able to sign his name on a refill prescription for my much-needed hydrocodone. He seemed strangely pissed-off already and I didn't want to make things worse.
How can a doctor go from helpful to demoralizing?
Things had turned definitely worse, however. This monthly, follow-up appointment at the pain clinic proved to be extremely confusing, disappointing, maddening, frustrating, and demoralizing. Let's add embarrassing and shameful to that list, too. For some reason unknown to me, my doctor's attitude toward helping me had done a complete 180 from the last time I saw him. Why? What was going on?
Strange comments about my RA and chronic pain
The doctor went on to make additional strange and surprising comments about my RA, my new jaw pain, and my chronic pain in general. He instructed me to follow up with my rheumatologist about my pain. Again, I thought, "What?!" I already do a very good job staying in touch with my rheumatologist and adhering to my current RA treatment plan. I tried to say this to the doctor and to explain that I'm currently in a "limbo" of sorts, still waiting to see if the latest biologic medication (Simponi) I'm taking is working.
Unforseen complications with my current treatment
Something that has made this limbo last longer, through no fault of my own, is that I've had to miss many methotrexate and Simponi injections due to being sick and on antibiotics a lot during the past several months. Not surprising then, my RA is still not stable, nor am I able to taper down and off prednisone.
Why was I now being treated differently?
It felt like I was being treated like a criminal
But the doctor wouldn't hear any of my explanations. Instead, he said some bizarre thing about how during my previous two appointments with him (I've only seen him three times), he was "being nice" to me by giving me pain medication. But now he's not going to be "nice" anymore? He had obviously changed his attitude towards me, even though I didn't do anything wrong. I sat there, dumbfounded and fuming on the inside. Great, another doctor treating me like a drug addict and a criminal.
Was I being accused of lying about my chronic pain?
Another thing that confused and upset me during this appointment was the doctor accusing me, in a weird passive-aggressive way, of lying to him about my jaw pain. And this, I suspect, was the cause for his change of demeanor.
He kept telling me that he had looked through my medical chart and read notes left by my former integrative medicine doctor (she left the primary care clinic recently) and told me in an accusatory tone that my jaw pain was not new or an acute thing, but that it had been going on for a long time. I tried to explain that yes, I've been suffering from my "normal" TMJ jaw and head pain for quite a while. But this much more painful lower left jaw pain was something new and had only begun at the end of November.
He wouldn't listen.
The shame and anger of RA pain management
I sat there feeling extremely uncomfortable, with a mix of guilt, shame and anger washing over me--like a little kid being reprimanded for doing something bad. My heart sank as I realized that I could not go back to this doctor again and that I would probably have to deal with the stress and hassle of finding a new pain management clinic. It was exhausting just to think about it, especially since I had already done it once.
A revised pain management plan
Before I left the exam room, the doctor sternly told me that he was going to start weaning me off my pain medication at the next appointment by reducing the dosage by half. Then, at the appointment after that, I wouldn't be given anything for my pain. This idea did not sit well with me at all, of course, because my pain has been significantly worse lately due to the jaw and head pain. My "normal" constant RA pain is already bad enough, but with this other stuff going on, my pain tolerance has sharply decreased. He finally and grudgingly gave me my last "regular" prescription and left the room.
Chronic pain patients should be listened to and believed
Then I left the room, thinking--This is NOT right. I should not be treated this way nor should any patient who struggles with RA or other kinds of pain. We shouldn't be treated like bad little children, or drug addicts, or criminals. We should be listened to and believed, and I will continue to speak up about how chronic pain patients are being unfairly punished during this "opioid crisis." I would argue that the real crisis going on right now is how chronic pain patients are being treated. Or maybe "mistreated," I should say.
When was your last flare?