A broken wrist? Snap, cry, sniffle, itch – healed. That person’s upset stomach? Gag, vomit, vomit some more, tears, learn to hate Gatorade – healed. How about your cold? Throat tickle, insomnia, cough, the snot runs out your nose and slides across your lips and pools on your pillow, you watch The Price is Right – healed. Our bodies are amazing in their ability to self-rectify an aberrant system. The treatments we realize only seek to enhance this ability, and that synergistic relationship of reflexive body and conscious mind is nothing short of astounding.
I was accident prone as a child. Between ages 7 and 9, I whacked my head against pavement, a concrete block, a metal doorpost, a boy’s head (that one was bloody). There was an eighteen-month period in my teens during which I had sprained my ankle so many times a year’s worth of physical therapy was prescribed. And, of course, there was the incident when twelve-year-old me fell out of a tree, broke my ankle, and walked home.
For my sake, throughout everything, the trauma-suffer-treat-heal cycle remained intact. Chickenpox was endured. Injuries accreted. Bones were broken. And yet, I always recovered. Until I did not.
The strange thing about Complex Regional Pain Syndrome (CRPS) is no one seems to know exactly why this person is affected, and why that person is not. To the best of my knowledge, there is no genetic predisposition, no identified fluke of nature that would suggest this person will suffer disproportionate, chronic pain relative to an injury. The National Institute of Health notes that individuals who are genetically female are more susceptible to the Syndrome than their genetically male counterparts by a statistical margin of 3-to-1. Average age of onset? 42. Prevalence in the population? 1 person in every 100,000… give or take. Given that ratio, CRPS qualifies as a rare disease; that is, a disorder deemed by the United States’ Rare Diseases Act of 2002 as being sufficiently infrequent in the general populace to be classified ‘rare’. For perspective, the RDA’s threshold for rare disease status hovers around a frequency of 1:1,500 people. CRPS surpasses that threshold about 67 times over. According to the Act, more than 25 million people live with one of the 6,000+ rare diseases – around six times the population of Los Angeles. A vast number of these conditions are invisible; i.e., many diseases of this variety often lack overt external manifestations, while still others have no truly objective means by which to measure their impact. CRPS, as it is based on a person’s subjective perception, the sensation of pain, falls into both of these categories.
My own experience with CRPS began in January 2010. New York State Worker’s Compensation concluded the inciting incident was a stumble on a slippery kitchen floor – a stumble that resulted in a partially torn right meniscus. Apparently, even at age 30, I had not yet outgrown my accident-prone childhood.
Six months to the day after the accident, I had a knee arthroscopy to investigate the escalating pain I had been experiencing. Excess scar tissue was excised. Everything else appeared ‘normal’. I recognized something was not-right when I tried, and failed, to get into bed late that night. I could not will my right leg high enough to slip it under the sheets, nor could I bear enough weight on it to push myself into bed. Sweat fell in heavy drops from my brow to the floor. I almost puked. Defeated, I spent that night, the first of many, on my parents’ couch. After I had eased myself onto the couch, I took one of the Percocet my surgeon had prescribed. That bottle would soon be exhausted. A refill was obtained. And another. And another. Eventually, my surgeon switched me from Percocet to Vicodin. It was different, more mellow; my head was clearer, my body hummed. My stomach was no longer upset. Truthfully? I liked the way the drug made me feel.
In the months that followed, I misused prescription opioids at an increasing rate. To be clear, the bodily symptoms I had been experiencing were very real. The pain, it was increasing; the leg, it was swelling; its hair, falling out; the skin, thinning and slathered in an omnipresent sticky sweat. Even as I was sliding ever deeper into dependency, I was aware enough to realize I was not healing.
Despite the subjective issues and objective facts, no one listened to my pleas for help. The surgeon, he had done his job. The physical therapists, they were already doing all they could. I did not have a Primary Care Provider (PCP) at the time. I was not working at the time; often, when pain patients are unable to work, when they cannot see anything but a future of bleak existence, and when care providers do not know how to address the issue that is pain, those most vulnerable can see no other choice than to either self-medicate or kill themselves. Around September of 2010, I began Emergency Trauma Center (ETC) hopping. I could get a scrip here, one in the next town over, another one in a neighboring county. Data collection had not yet been centralized. My name could not be cross-referenced between hospitals. And so the narcotics came to me unabated: I was self-medicating.
By late October, I had reached my breaking point, attempting suicide by overdose. The medical establishment finally heard my cries, and I was admitted into a holistic pain management program. For the first time, my pain felt valid. And while the program was not able to take me off the opioids, it did teach me about the mind-body connection, how to compartmentalize my pain and emotions through visualization. So I externalized everything I felt. As long as I could hold the sensation of pain outside my body, I could control it in general. That was the theory, anyhow.
Many pain management clinics do not deal in narcotics, or do so only as a last line of defense. After I had moved to Iowa in May 2011, I became a patient of Dr. B–. One of her preconditions to treatment was that I would taper off the opioids. What followed was a three-month detox process during one of the hottest summers in the Upper Midwest’s recorded history. While opioid withdrawal effects are nonlethal, they can make you wish for death. The diarrhea was constant. The persistent low-grade fever, almost unbearable. I slept two to four hours a night, and that lack of sleep and general misery made me aggressive, angry. The partner with whom I was living had two dogs, well-behaved and likable. Nevertheless, there were moments when I felt such rage that I had to sit myself in the hot sun, fevered, just to get away from them. I didn’t want my temper to flare, and I didn’t want that temper directed at her pets. My behavior was erratic, bordering on manic one day and depressed the next. My low sex drive frustrated both my partner and me. And then, after those three long months, I was off the Vicodin – and cast out of an initially promising relationship. We have not spoken since. I vowed to never sink into addiction again.
Under Dr. B–’s direction, a new medication regimen was put into place. Anti-convulsants, anti-seizure meds, SSRIs, tricyclic and atypical antidepressants, muscle relaxants, lidocaine patches, Non-Steroidal Anti-Inflammatory Drugs (NSAIDs). My newly acquired PCP advised me to have a stiff shot of whiskey on the really bad days. These attempts at pain control were tried and discarded in methodical fashion. Adverse effects like spasmodic bladder, i.e.: not being able to urinate for 24+ hours, were a frequent occurrence. Regional nerve blockades – a cocktail of an anesthetic like bupivacaine or lidocaine; epinephrine; and a corticosteroid injected directly into a nerve – happened every three to four months, though the locations and methods varied. Some visits, Dr. B– and her fellows would anesthetize the nerves in my spine; other times they would isolate the saphenous nerve running the length of my inner thigh; and still other times, the entire right leg would be exsanguinated via a tourniquet applied at the groin, flooded with anesthetic, and left to marinate for about 30 minutes. There was sweating, hyperventilation. I almost peed myself a few times. Through it all, however, there was no judgement passed, no whispered comments between the staff; indeed, it was quite the opposite. The doctors, the staff, even the orderlies, they would comfort me by telling me about their lives, their children, their parents. On more than one occasion, Dr. B– rubbed my shoulders to calm me during a spinal nerve blockade. The only thing that seemed to matter to them was my comfort, my well-being. Those visits, as terrifying as they may have been, they grounded me, they gave me hope, they made me feel like I was still living – because I was fighting, and they were fighting with me.
My condition began to unravel in the summer of 2013. As noted, most pain clinics only deal in narcotics as a last line of defense. By that time, we had maxed out the dosages of several medications, tried several other ineffective treatments, and ablated – burned out – the facet nerves in my lower lumbar spine. Dr. B– knew we were running out of options. CRPS has no magic bullet, no real established treatment protocol. In other words, you manage the symptoms as they arise, but cannot treat the disease; it’s not called ‘complex’ for nothing, after all. The multitudinous systems involved – nervous, vascular, muscular, cognitive, dermatologic, all of it – makes treatment difficult. While one medication or form of therapy may work to control your pain, for instance, it may also raise your blood pressure and heart rate. So you start a beta blocker to help wrangle that symptom. And perhaps that combination leads to muscle contraction, so you are given a relaxant. By this point, you may have become somnolent, unable to stay awake, and the doctor prescribes a stimulant. It is no wonder individuals with CRPS are more liable to experience polypharmacy, or the concomitant use of multiple medications. By one point in early 2014, I was taking upward of 30 pills a day; that total has since dwindled to 8, plus a couple of rescue medications – an opioid, hydromorphone, and a muscle relaxant, methocarbomol – usable on an ‘as needed’ (pro re nata, PRN) basis. The estimated cost at the time was more than $3,500/mo., a number that would have surely ballooned in the years since.
To combat polypharmacy, Dr. B– decided to prescribe extended release morphine tablets. Their usage was monitored closely. Everything seemed to be working fine. I could take fewer medications, and my symptoms seemed to be well-controlled. What I did not realize was how I had refused to open my curtains for two weeks, that I was convinced someone was following me, and how if I turned around at any given time, I would be confronted by a visage so horrific, I would lose my mind. I believed she lived in my apartment. To minimize risk, I spent as much time as possible, hours at a time, in my closet. My weight dropped because I was too scared to eat. I do not remember what caused the recognition that I had not opened my curtains for weeks, but I do remember the trip I took to the hospital dispensary to hand over the remainder of my pills. I do remember crying on the bus. I do remember holding my backpack so tight to my chest that I ended up with bruises.
Substance-induced psychosis typically resolves itself when the noxious agent is terminated. Unfortunately, for me, it triggered my underlying Major Depressive Disorder (MDD). I lived in a state of psychosis for about a month and a half, fighting off paranoid delusions, drinking heavily, and battling the worst insomnia I have ever experienced. To this day, I view those delusions I had experienced as being real; that is, the being I had been too terrified to face, the hooded, cloaked entity I knew was always behind me, even as I recognize that she was a delusion, and even as I recognize that such entities do not exist, the incontrovertible fact is that the events surrounding her, they happened to me. I have a clear memory them, and of her. If I focus enough, I can still hear the words she had whispered. I do not wish to dwell in this space any longer.
Fresh off the failure of the morphine treatment, I turned desperate. Our treatment options had been exhausted. I scoured the literature, looking for experimental protocols. I proposed using Disease-Modifying Antirheumatic Drugs (DMARDs) in an effort to modulate my immune system. You would probably recognize these drugs as adalimuma or etanercept. You know, the drugs advertised on TV that feature golfing elderly people, or pained-looking middle-aged women. The drugs whose disclaimers are longer than the description of the actual treatment benefits.
Through blocking TNF-α receptors, I argued, we could help control the pain. The idea was endorsed by neither Dr. B–, nor my PCP. I returned to the literature. A German study – a single study with a pool of 12 subjects – showed particular promise. Swaths of the subjects’ skin were removed along with the newly-grown micro blood vessels beneath it. According to the study, the anomalous vessels were too small to allow red blood cells through, and, therefore, starved the underlying muscles of oxygen. The perpetual oxygen deprivation led to pain. I took the study to three staff doctors – Dr. B–, a vascular surgeon, and a dermatologist, all of whom were intrigued – before the hospital ethics board deemed the surgery too dangerous. And so, Dr. B– and I continued onward with the NSAID treatment, switching them out every few months to help reduce the risk of a gastrointestinal (GI) bleed. Etodolac became diclofenac; diclofenac became indomethacin. I just did not want to hurt anymore, and if that meant a more conservative course, I would take it.
04 March 2014: ‘… belly pain from the indomethacin.’”
The day my girlfriend was going to tell me she loved me, I shit blood. We had been playing cribbage in our favorite café. It was late-spring 2014. We had been seeing each other for over a year, often laughing at Humira commercials late into the night. I can remember most things about that night: the blonde highlights in her chestnut hair, the way our hands had been touching, the fact she was winning our cribbage game. The BLTs we ate. The cramping which arose ten minutes after. The way I could feel my insides dropping out. The fact that I barely made it home. My toilet filling with half-digested blood. Our frantic text messaging – she was worried, and I would not tell her what was happening. When she drove back to her hometown of Des Moines for the weekend to decompress. It would not be until long after our relationship crumbled that I would understand why she had fled – she had planned on telling me she loved me for the first time that night – but that moment of confession was still years away. No, sitting on my toilet that night in June 2014, I could not hear her concern, nor was I able to empathize with her. All I could do was cry and vomit and bleed, and wish I had the ability to tell her what was happening. But I was not strong enough to admit my body had failed in spectacular fashion, I was ashamed by it.
Shame with regard to my condition was not something I had felt before. Up until that night, I had flaunted my condition, decorating my cane with stickers, taking collegiate exams less than an hour after needles had been stuck in my spine. The aggressive treatment seeking, the psychosis, all of it – I had owned it, it was mine. I had nothing to be ashamed of, because I had believed that I still controlled my future. But the moment that the hole opened in my stomach, everything changed.
Over the course of the next four months, I lost more than 40 pounds, a quarter of my body mass. Plainly, I was dying. My body was eating itself. Blood tests, scopes, more blood tests, barium swallow x-rays. At the time, I had accepted the new condition as just another part of my life, just another trial. Months later, after I had begun to heal, my psychologist stopped me mid-session. I turned away from watching the snow melt.
“You do realize that they almost couldn’t save you, don’t you?” she had asked. “That you had almost reached a point-of-no-return.”
The question hit me as a truck might. I could not breathe. My stomach hurt. I remember biting my lip. I also remember agreeing with her. That was the first time I cried out of emotional anguish in front of a healthcare provider.
I mentioned it before, the mind-body connection. As it was explained to me back in November 2010, the mind and the body work in concert with one another. In order to survive, I had to separate them. It took months to segregate these two aspects, to become utterly pragmatic and ruthless toward my condition, my treatment, my life. Once I had, however, I felt as though I had turned a corner. I could externalize the pain, I could look at it with curiosity, I could even poke at it, and explore it for what it was. In the process, I lost the ability to speak with others, to feel anything with any sort of depth. I could laugh; I could emote at key moments in movies; I could love and be loved, but it was flat, deadened – a fact I discovered once my girlfriend became my ex.
My current therapist has been encouraging me to feel. She’s been gentle, though relentless. There are so many emotions to unpack from the past eight years, I am unsure where to begin. My thoughts drift to my ex-girlfriend and the nights we had spent together while we were in college. How much more intense could those nights have been if I had just lowered my defenses ever-so-slightly? What if I had been honest about that night in the café? What if I had not internalized the shame of my bodily failure?
Learning to feel is not merely an exercise in introspection; indeed, it seeps into all aspects of one’s life. For the first time in many years, I have actual friendships, I laugh loudly and sincerely, I can empathize again – not just intellectually, but emotionally. All this feeling also makes me incredibly vulnerable to not just the pain my body produces, but the pain others can inflict.
A little over a week ago, I went to an ETC here in Boston. I had a particularly bad day – chronic pain can often flare into something uncontrollable – and needed treatment. Typically, this means high dose narcotics. The key difference between now and eight years prior is that I do not desire the high; indeed, I despise the loss of control associated with it. Sadly, however, the stigma pain patients face is growing. You come into our clinic with an exact knowledge of medication and dosage? You must be a drug seeker. I get it – I read the paper, I follow the news. The opioid crisis is real. I’ve personally felt its ravages. I’ve seen people succumb to it. I’ve seen good doctors face admonishment. The coverage of this epidemic is a toxic mess, and it has begun to affect quality of care. Vilified by the government and the media, the ill and their caretakers have become monstrous caricatures.
I waited in the ETC for three hours before I was directed down a long corridor to a tiny room with a gurney topped by a white sheet. There were no pillows. No one helped me sit. I laid there for an hour, bent at the waist, before Dr. M– entered. He dropped a white sheet and hospital gown onto the gurney, and said, “Strip to your johnnies.” I had never been asked to disrobe fully for an examination before, but did as I was told, and replaced my clothing with the gown.
The doctor returned, rubbing his hands together. “Let’s take a look,” he said. I nodded. He told me to relax my leg. I told him it already was. He frowned. He pressed down on it. He asked me my history. I did the best I could, struggling to articulate my answers. I told him I brought my half-full bottle of hydromorphone along with me when he asked if I had run out. He did not check it. He lifted my leg, moved it around, and set it down. He never even listened to my chest or palpated my spine. I had fully disrobed for no other purpose than to have been stripped.
“I’m going to put you on Neurontin,” he said.
“I was on Neurontin for four years,” I said, pulling the sheet he had given me over my legs. “They switched me to Carbamazepine after I’d maxed out at 3,600mg a day. And then it was Oxcarbazepine after I developed a rash…”
“Well, Neurontin is the best nerve pain medication out there,” he said.
“It won’t work…” I said.
Dr. M– looked down at me, pinching the bridge of his nose. “Ok,” he said, making a note in his chart. “I’ll give you an injection of Toradol –”
“…that’s an NSAID. I had a GI bleed.”
“When was it?”
“Four years ago,” I said.
“It’s been long enough,” he said, eyes on the clock. “So I’ll give you Toradol and a lidocaine patch and a valium.”
“Mmhmm. It helps with spasms.”
He was not incorrect. However, the primary indication for valium is to treat acute-onset anxiety. Sure, it can help alleviate muscle spasm, too. Yet, that – the alleviation of muscle spasm – is the primary indication for methocarbamol, Flexeril, Tizanidine, and Baclofen. And, of those, I can only take methocarbamol: Flexeril is no longer effective, Tizanidine is no longer covered by my insurance, and Baclofen gives me spasmodic bladder.
“…lidocaine doesn’t…” I began.
“Do you agree with the treatment plan?” he asked.
I knew I had no choice but to comply. If I had said no, then Dr. M– would not have offered any other medication, I would have been kicked out of the ETC, and that label – drug seeker – would have been slapped onto my file. So I consented. I consented to an NSAID despite my history of a GI bleed, a lidocaine patch despite its ineffectiveness, and valium despite the fact that I was not having an anxiety attack. The nurse administered the meds, and shut off the lights. I curled back onto my side and began to cry – not solely because I was in pain, but because I had been humiliated. Even at my lowest points with CRPS, I had not been made to feel guilty about it by a healthcare professional, like I was some kind of fiend who was only in it for the drugs. Recovering addict or not, this fact remains – there are some days I wish I could die. And in those moments, I turn to the medical establishment to help me through it. On that day, there was no help, there was no compassion; there was only feeling that I had finally passed through some kind of looking glass.
The next day, I told my best friend about the encounter:
“Well, are you?” she asked from behind her wine glass.
“Am I what?”
I know the question came from a good place, and I am not angry about it. She genuinely cares about me, and about my future. But to face that kind of uncertainty from someone who knows me as well as she does, it’s crushing, because if my closest friends do not trust me, and if the establishment will not believe me – who will? More than that, I recognize that I am only one of the 25 million people who suffer from this kind of stigmatization, whose rare illnesses are painful, or invisible, or a combination of both.
There are times I wish my mind-body connection had remained severed. When I think of myriad people in my position, those feelings I had suppressed for so long overwhelm me. Empathy hurts. Not all addicts are in pain, I understand this, nor are all people in pain, addicts. Some of them, like me, have exhausted all other types of intervention. To remove this option, to stigmatize us, to make us feel ashamed about illnesses over which we have no control?
 According to Do-Hyeong Lee, et al., in their 2014 paper, Risk Factors for Suicidal Ideation among Patients with Complex Regional Pain Syndrome: “Twenty-nine patients (74.4%) were at high risk and 10 (25.6%) were at low risk for suicidal ideation.” To place this statistic in perspective, a 2017 study by Shenghong Pu, et al., Association between cognitive deficits and suicidal ideation in patients with major depressive disorder, found that “Suicidal ideation is a common, core symptom of major depressive disorder (MDD). In fact, previous reports have suggested that 22.4% to 66% of patients with MDD experience suicidal ideation in the week prior to attempting suicide.”
 Personal journal entry of the author.
 The maximum recommended dosage is 3,200mg a day.