Content Warning: This letter describes patient neglect & medical trauma.
Hello dear ones,
Do you observe the transition of the seasons like memories that live in your body? Can you remember the earthy smell of leaf-meal or catch the first chilly breeze on your cheek & be transported to another time in your life, another November?
Buckle up for story time, sweet folks.
I feel the seasons this way, especially autumn. Five years ago, I had recently been diagnosed with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy after surgery to repair a spontaneously torn tendon in my foot went awry. I had a PICC line put in so I could have heavy-duty antibiotic infusions & then threw a blood clot in my PICC line arm. My foot, which had been hot & swollen in the acute phase of CRPS, was now ice cold & rigid. I couldn’t wear shoes. Walking was agony. I cried the day I had to quit my job as a massage therapist.
I felt like my life had been pulled out from under me. Even now, with so much joy & goodness present & forthcoming in my life, the pain is so sharp I can almost taste it like a penny in my mouth.
To make matters worse, I had been taking tramadol for pain since surgery, & I started seeing a doctor who I now believe is a minion of the devil. She wanted me to start a new nerve pain medicine, so she took me off tramadol with no tapering plan, & instead of giving me acute pain medicine instead, she gave me: Narcan. I was confused. What happened next was terrible. My body was coming up on two kinds of heavy duty nerve pain medicines & coming off of the tramadol.
Let’s talk about tramadol for a minute. It’s an opioid pain medicine as well as an SNRI (a serotonin-norepinephrine reuptake inhibitor). I had taken one of these in my early 20s when I was struggling with pain from a dislocated jaw & depression simultaneously. Turns out, not being able to open your mouth in the morning throws a damper on your day!
My insurance stopped covering Cymbalta, the SNRI I had been taking, so I had to come off of it. Withdrawal was hell. It felt like I had the flu in my body & my mind & heart. Finally free of the drug, I swore I would never take that class of medicine again. When the foot surgeon prescribed tramadol, I was unaware it was an SNRI.
So, with no debriefing about what my body would experience during opioid withdrawal, I embarked on a very shitty journey. I was also experiencing what I believe was the onset of Mast Cell Activation Syndrome & worsening Dysautonomia, which is an umbrella term for disorders of the autonomic nervous system. CRPS is one such disorder & so is POTs. Sometimes, even before this withdrawal, because of widespread inflammation in my body, I would shiver & my skin would hurt from head to toe, like I had a fever.
After I stopped taking tramadol, this sick shivery feeling set in, as well as an intractable migraine attack, which is to say: it would not go away. My whole body hurt. The sharp, shock-like pain from my CRPS intensified & I felt like I was burning from the inside out sometimes. My mom kept me company late into the night sometimes, while I watched QVC under an electric blanket. The heat from the blanket felt good, but in my legs, I felt like my nerves were smoldering.
I liked watching QVC, because I appreciated the fervor of the salespeople. I wanted to believe in something & something relatively inconsequential. Is this the best monthly cheese subscription in the world? The best artificial Christmas tree?
After several days of severe head pain, I remember crying & asking my mom & sister Michelle why no one would help me. My neurologist called in another medicine or two that did nothing. My pain management demon doctor did nothing.
What’s worse is how this was affecting my depression. I was in so much discomfort–my brain felt like a dry sponge. I am not sure what access I had to happy chemicals, like serotonin & dopamine. Finally, I went to the Emergency Room with my mom & was given a migraine cocktail, which I now know typically contains a medicine I am allergic to–I have an adverse psychological reaction. This medicine is a dopamine agonist. Should a patient with major depressive disorder be given a dopamine agonist ever, let alone while withdrawing from a narcotic antidepressant? I think we all know the answer to that question is a resounding absolutely fucking not.
Later, when my beloved cardiologist Dr. Khan saw that medicine listed as an allergy in my chart, he told me a story of a patient of his who actually got up & ran out of the hospital when given that drug at the ER. Yikes.
It made me feel like I wanted to crawl out of my skin. Had I been able to run, maybe I would have. Alas, I could not. I accepted very temporary pain relief & when I got home, I ate spaghetti squash & laughed at the Minions movie with my dad. In bed that night, I had burning pain in my wrist where the nurse had started an IV–also a common reaction to needle sticks with CRPS. Luckily, I rarely experience that these days.
My nerves were shot. My depression was at an all time low. When my husband came to visit the next week, I remember sitting at the dinner table with him & my mom & just sobbing as I was trying to eat. It was as though I had no choice but to cry. I wanted to live, but also, friends–I didn’t know how much longer I could carry on in that deep physical & existential pain. CRPS has been nicknamed the suicide disease due to high levels of pain that are difficult to treat.
This. All of this was deeply traumatic. I talked to my dear friend Liz about it once. She is also a chronic illness warrior. I told her, when it gets that bad, as bad as it got for me & as bad as it got for her, you live in fear that it can happen again. When the bottom drops out, you know it’s possible.
I am so grateful that with each subsequent fall, I experience that trauma anniversary less intensely. I got married in the fall of 2022, which was such a joy. Instead of getting daily infusions of strong antibiotics through a port in my arm, I have been able to go to the fall festivals with my family. I can now do the fun fall things I’ve always loved to do, even if I do them differently & with pain.
What I will say is this: I understand there is a very fine line separating me from a homeless heroin addict. Without resources & a lot of support from my loved ones, I could easily be on the streets or not alive. Pain patients do not deserve to be treated like junkies, but like humans facing complex medical issues. I am glad I don’t take opiods, as they actually do not do much to treat the kind of nerve pain I experience, but damn. I never should have been taken off of them like that. My pain management doctor after the one from hell actually apologized to me for her actions & recklessness.
I agree pain needs to be treated from a bio-psycho-social approach, but at the center of a chronic pain patient is a human being, & if the pain is new, which for me it was, that human being may be in deep grief & terror.
I started seeing the therapist who helped save my life shortly after the hospital visit I told you about. I came to her office with wet hair & tears in my eyes & over time, she helped me rearrange the shattered pieces of my newly disabled self into the woman I am today. I am so grateful for her care.
Tomorrow, Monday November 4th, is “Color the World Orange Day.” Every year on the first Monday of November, it’s a day to promote CRPS awareness. If you want to, you can participate by wearing an orange shirt or item of clothing.
Tomorrow, I’ll look back with gratitude for the doctor who diagnosed me early & for the many providers who have treated me with dignity & tenderness since my diagnosis; for the community of CRPS patients who have shared wisdom with me; for my friends & family members who continue to support me with their love & resources. I’ll feel thankful for my own brave heart & resolve.
Until next week,
Annie
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