For a long time, I didn’t want to open up about my experience with chronic pain until I was “cured.” I fantasized about waking up one day without pain related to thoracic outlet syndrome (TOS), a group of disorders that involves the compression of nerves or blood vessels in the space between your collarbone and first rib. I would have a nice and tidy TEDx-style success story outlining how I overcame all of the obstacles in my way and emerged on top. I didn’t want to be a work in progress, and I didn’t want to be someone with a chronic condition—I wanted to be done.
Since all of this began in May 2020, I’ve had a rib removed; a neck and chest muscle cut out; and more injections, doctors appointments, and days in bed than I would care to admit. And yet, the prospect that terrified me the most wasn’t a looming procedure or the arduous recovery it carried—it was becoming someone who lived with pain, with no end date in sight.
When something goes “wrong” in your body, it’s human nature to want to identify the problem and do whatever you must to fix it. When my pain first began, I was told things like, “this won’t be your new normal.” Later on, it became “you will feel better after six months of physical therapy,” and even later, “you need to have surgery quickly or you risk permanent nerve damage.” And once people started throwing around the term “chronic pain,” what I heard was “you are unfixable.”
Spoiler alert: I’m not at the end of the road just yet, but I would hardly self-identify as doomed. After a long, painful two-year journey along a path paved with false hope, I’m working on accepting that my story probably won’t have a clear-cut pain-free happily ever after. But with the help of an emerging treatment approach called pain reprocessing therapy, I finally feel like I might be stronger than my pain.
How my chronic pain story began
Let’s start from the beginning: My pain came on seemingly overnight back in May 2020. One night, I was completely fine, and the next morning, I felt a dull, grating ache on the interior border of my left shoulder blade and a terrible sensation akin to an elephant stepping on me on the left side of my chest. No ice pack, pill, or stretching routine could alleviate my discomfort.
I came to learn later that this feeling was nerve compression. At this stage in the pandemic, doctor’s offices in New York City had just opened back up for non-emergency visits, and I took the first appointment I could get with an orthopedic shoulder specialist. After giving an extremely detailed account of my symptoms, I got the “you’re young and healthy” speech, and was sent on my way with a prescription for an anti-inflammatory pill and instructions to rest for two weeks.
A month later, when my pain persisted, I got a neck and shoulder MRI and was diagnosed with biceps tendonitis. I was told that with two weeks of physical therapy, I’d be good as new. The diagnosis didn’t really make sense to me—back pain was one of my primary symptoms, and my back is nowhere near my biceps tendon—but I was happy to have some sort of explanation. I had three follow-up appointments over the next four months and repeatedly heard that another two weeks of physical therapy should resolve my symptoms. But, relief didn’t come, so I finally sought a second opinion.
I was able to do increasingly fewer activities that were formerly part of my daily routine…eventually I couldn’t even do the dishes or hold a blow-dryer.
At this point, I had the sense that something was really wrong. I was able to do increasingly fewer activities that were formerly part of my daily routine; any sort of workout involving my upper body would flare me up for days, and eventually I couldn’t even do the dishes or hold a blow-dryer.
The solution to my pain diagnosis had a destination, but no map
My second doctor was sharp and compassionate; she assured me that my symptoms were treatable and seemed to have a more thorough understanding of what I was experiencing. I finally felt heard and had faith she would fix me. I was paired with an all-star physical therapist at her hospital, with whom I was meant to work for six weeks.
After I had failed to meet another recovery “deadline,” my physical therapist suggested my symptoms might actually be caused by TOS. TOS is a diagnosis by exclusion, or by eliminating other options. That’s because the presenting symptoms are so varied that TOS can easily masquerade as a number of other shoulder conditions.
I presented the information to my doctor, got the required testing, and the TOS was confirmed. I finally had my hard-won diagnosis. I was prescribed a six-month TOS-specific physical-therapy course and was assured that the need for surgery to treat this condition was extremely rare, extremely complicated, and almost never necessary. But by month five, my symptoms had only gotten worse, and it was clear that I needed the surgery.
My doctor, however, did not perform this particular operation, which required removing a rib and two muscles, along with a weeklong stay in the hospital. In fact, no one in New York City performed it, at least at the time. Without a doctor to perform my surgery, I had a destination without a map.
I didn’t really have good days or bad days so much as bad days and very bad days.
The pain was unrelenting, and no one could seem to take it away. During this time, I didn’t really have good days or bad days so much as bad days and very bad days. On the days when the pain became too much, I began turning to sleeping aids to essentially take the day—and pain—away.
After speaking to a few surgeons, though, I decided to stay the course with a vascular surgeon in Boston. After two more months of tedious, oftentimes painful diagnostic testing to re-confirm the diagnosis and solidify the plan for my procedure, I finally had the operation in April 2021. I wish my story ended there.
The six months following the surgery was a slow unraveling. Somehow, I felt even worse, which was a reality I was not prepared to accept. My surgeon theorized that a blood clot could be responsible for the increased pain level, but regardless, there was nothing more that he could do. He recommended that I start seeing a pain-management specialist.
The night following that recommendation, my pain was at an all-time high. Fears swirled in my brain: The surgery failed, I might have a blood clot, another doctor has given up on me. Before I knew it, I was being taken to the emergency room. When I arrived, my brain was too overloaded to form sentences. Each time a doctor asked me a question, my brain wouldn’t let my mouth say anything. I was admitted and tested for a stroke, which came back negative as my disorientation subsided.
I realized that dealing with chronic pain—and, for me, the related condition of chronic stress—daily takes a toll on the brain, not just the body, and some research has even made a connection between chronic pain and short-term memory issues. I resented the idea of pain management, because the name itself felt like admitting defeat. To me , it sounded like “My pain is never going away, and I just have to learn to manage it.” But at this point, as I continued to experience brain fog following the hospital visit, it didn’t seem like I had much of a choice.
Accepting life with pain doesn’t mean accepting defeat
Anyone with chronic pain is familiar with the “the pain speech.” With every new specialist you see, you have to explain your history, your symptoms, what other interventions you’ve tried, and your pain level on a scale of one to 10. By October 2021—nearly a year and a half into my pain journey—my “speech” was getting longer and longer, and I was heartbroken that I had to add “unsuccessful surgery” to the end of it.
After giving the updated speech to a few pain-management specialists in New York, I was told different versions of: “Sorry, but we don’t treat your condition after it’s been operated on.” I felt extra broken. It seemed my only option was to head back up to Boston to meet with a pain management specialist from my surgical team who was already familiar with my case. So, that’s what I did.
At the end of December 2021, I finally got the dreaded verbal diagnosis: “You will never be pain free.”
My pain management regimen consisted of more explaining, pain logs, big needles, complicated treatment options, injections that worked right away and then wore off, and injections that didn’t work right away but kicked in weeks later. It was a lot, and ultimately, nothing gave me long-term relief. After four 12-hour day trips to Boston over two months, I finally got the dreaded verbal diagnosis at the end of December 2021: “You will never be pain free.” I was shocked that this proclamation didn’t send me into another downward spiral, but there was something in the back of my mind that I couldn’t stop thinking about, and it was giving me hope.
After my second pain management visit, I actually had a week when I felt almost no pain. Despite getting what I had most desperately wanted, my pain management specialist told me that the steroid injection responsible for the relief would only be effective for two weeks tops. This left me feeling more stressed out than ever. My mind was spinning: When is the pain going to come back? What if I do something to make it come back faster? Am I sitting in this chair the wrong way?
At this point I realized, my brain had completely changed. The pain consumed my every waking thought, and in the rare moments of reprieve, fear about the onset of pain took its place. It finally hit me: Maybe I am among one of the 50 million Americans who suffer from chronic pain. I opened up my Apple podcasts app, typed in “chronic pain,” looking for resources, and what I found changed everything.
How finally discovering pain reprocessing therapy changed everything
The search led me to a podcast, which led me to an audiobook called The Way Out: A Revolutionary, Scientifically Proven Approach To Healing Chronic Pain, by Alan Gordon, LCSW, a psychotherapist who specializes in chronic-pain treatment, and Alon Ziv, a biology researcher with a degree in neuroscience. I almost had to laugh as I listened along. I had spent the better part of two years begging medical professionals all over New England to validate my experience (to no avail) and yet, here was a complete stranger, Gordon, essentially reciting my pain speech to me. He outlined feelings of stress at a restaurant that the uncomfortable wooden chair would cause a flare-up, all-day worrying about picking up a grocery bag the wrong way—everything. I continued listening.
As Gordon explains in the book, when your brain senses that you might be in danger, it fires very real pain signals in order to protect you. But what if your brain makes a mistake? What if your brain thinks that you’re in danger all the time? The result is chronic or “neuroplastic” pain, or the idea that the brain can generate pain without structural damage.
A widely recounted 1995 case study in the British Medical Journal often associated with neuroplastic brain reported an instance of a construction worker who endured a nail piercing his boot and coming out of the top. He was taken to the emergency room in agony and sedated, but when the doctors carefully removed the boot, they saw the nail between his toes having missed the foot entirely. “All pain is generated in the brain—whether it’s an accurate reflection of danger or not,” says social worker Daniella Deutsch, co-founder and director of content at the Pain Psychology Center in Los Angeles, where Gordon serves as the executive director.
With cases like this in mind, Gordon developed pain reprocessing therapy or PRT, a cutting-edge treatment approach that works to eliminate chronic fear and therefore break the cycle of chronic pain. “PRT is a system of techniques rooted in neuroscience that helps people interpret sensations correctly,” says Deutsch, who oversees the training of new PRT clinicians at the Pain Psychology Center, all of whom must have a master’s degree is psychotherapy. The Pain Psychology Center is currently treating around 600 patients with PRT, and there’s a months-long waiting list to get matched up with a therapist, in and of itself giving more credence to PRT’s need and potential value.
PRT was formally developed in 2017, “although our therapists have used these techniques before this date,” says Deutsch. The Pain Psychology Center, which opened in 2013, offers a wide variety of treatment approaches to eliminate or reduce chronic symptoms, such as cognitive-behavioral therapy, psychodynamic therapy, intensive short-term dynamic psychotherapy (ISTDP), hypnotherapy, guided meditation, and mindfulness training.
Although PRT is still fairly new, it is slowly becoming more accessible. In addition to being offered through the Pain Psychology Center, it is also available through The Better Mind Center in LA, or through hundreds of health-care practitioners who have completed the virtual PRT certification training, offered through the Pain Reprocessing Therapy Center, which is affiliated with the Pain Psychology Center and opened in November 2020, with the express purpose to train more practitioners. “At the PRT Center, we train a wider variety of health-care practitioners in PRT, not only those with a master’s degree in psychotherapy [but also physicians, chiropractors, physical therapists, and psychotherapists]” says Deutsch, adding that the next virtual training will have over 150 participants.
Since I began pain reprocessing therapy in January 2022, I’ve made some incredible strides. My therapist, whom I meet with once a week over Zoom, encourages me to keep a “victory list,” to keep track of my wins so that I don’t convince myself that I’m back to square one on days when I’m really struggling. We work on minimizing fear thoughts, trying to neutralize my response to painful sensations through guided somatic tracking, and identifying what my emotional triggers are—thought patterns or situations that oftentimes lead to flare-ups. During some sessions, we hardly talk about the pain at all—a subtle, yet surefire sign that I am headed in the right direction, as the pain is slowly becoming a smaller and smaller part of my life. I’ve even had a few pain-free days, which is something I had let go of believing to be possible.
I’ve also had my fair share of setbacks and breakdowns—days when doubt takes over and I become incredibly, viscerally afraid that this will be just another failed treatment attempt and that I will never have a life free from chronic pain. Nevertheless, I am working to get myself out of a constant state of fight-or-flight by reassuring my brain that it is safe, which is unfortunately impossible to do if I’m hyper-focused on driving the pain away. As of now, my number one intention is to just keep going.
I’m working on taking my recovery one day at a time, and PRT is helping me learn to be with okay with myself in the present while still working to rewire my brain responses. And though the idea of “taking your life back” can be clichéd, it’s freeing to me, and restoring my faith in myself—despite not having definitive, unequivocal proof that this will work. But, that’s what faith is.
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