I recently made a difficult decision and one whose point was to hopefully alleviate my pain--on many levels. After some years of wrestling with feelings of frustration, guilt, shame, fear, anger, helplessness, and exhaustion, I finally did it. I broke free from my pain management clinic. I'm probably sounding a bit ridiculous and way too dramatic trying to describe this, but it's true that all of those feelings regularly took hold of me because of this clinic and the provider I saw there. Why I had such a hard time advocating for myself with this, I'm not completely sure. However, I do think that the current "opioid crisis" we Americans are currently trapped in, and especially how it's inadvertently harming chronic pain patients, is a lot to blame for it.
When pain takes you to the ER
The final straw happened when I was suddenly forced to go to the ER this winter, suffering from excruciating pain and unable to move my head even a tiny inch without searing pain shooting into my upper back. This was bizarre and something I had never experienced before, yet I knew almost immediately after it began that I needed to get to the hospital. My pain tolerance is very high yet this was unbearable.
After enduring a miserable experience in the ER (they were full so I was forced to lie in a makeshift bed in the hallway) that required hours of waiting while writhing with each awful spasm, I finally saw the attending physician. To my surprise, he diagnosed my strange pain as muscle spasms in my Rhomboid muscle. He said that he had even had this himself and acknowledged how painful it is.
Despite this shared understanding, as I lay there grimacing and whimpering with tears in my eyes, he refused to give me any opioid pain medication--even right there in the hospital. Opioids, muscle relaxers, and rest was the usual course of treatment for this, he admitted, yet he coldly refused me the pain medication. His refusal to give me adequate pain relief, however, was after he spoke with my pain clinic provider over the phone. He had asked me if I had a pain contract and I answered truthfully that yes, I did. This, then, prompted the phone call to my pain clinic to confirm this information and to get permission to give me something.
"She said, No."
Tears rolled down my face as he told me the answer. I felt infuriated, helpless, afraid, humiliated, and frustrated beyond belief. But I wasn't surprised. The years of often feeling stigmatized, infantilized, and criminalized by my pain provider finally exploded into one terrible word at the worst possible time--"No."
Breaking down and sobbing, I tried to tell the doctor and his nurse how much pain I was in and that I needed something that would help. I was given a prescription for Zanaflex (muscle relaxer) and a shot of Toradal in my arm, but both of those barely touched the pain. I knew with 100% certainty that I would be having a sleepless night and I worried about how long I would have to endure such constant agony with no relief.
Pleading to be believed, trying to explain how I've lived with the severe pain of RA for 20 years, stressing that this pain was something I couldn't handle right now--it was no use. And this, in between the sobs and tears, enraged me. I decided right then and there that I was done with my pain clinic. This was finally the last straw because I didn't deserve to be treated like this. Nobody does.
Since that day (and night) in the ER, I have not gone back to the pain clinic. I have refused to return to the provider who almost always made me feel as though I were walking on eggshells, panicky and afraid of getting yelled at, condescended to, demeaned, treated like a child, and disrespected.
I'm glad I finally stood up for myself and made a decision that was best for me and my pain. Nobody knows my pain, body, health, RA, or my heart like I do. And true care, I believe, is respecting that. Hopefully, my new pain clinic will be much better. And hopefully that attending ER physician will gain some better bedside manners and believe his patients.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?