Living Life to the Fullest – Despite My Chronic Pain

Three years ago, I found myself living in the hot, dusty West African capital of Niamey, Niger in an extremely stressful job with endless problems, high stakes, and a constant feeling of foreboding. My mother had passed away one year prior and I had become a workaholic. It was the only way to keep the project moving forward and distract myself from my grief.

Then, one day at my desk next to my boss, I felt a tingling pain next to my right shoulder blade. Nothing worked to make it go away. I switched chairs, got a portable standing desk, increased my yoga practice, and got massages. I massaged the area with a tennis ball, iced it, heated it, took magnesium, and started becoming a regular fixture at the health clinic, where they gave me Naproxen and muscle relaxants. When that didn’t work, they injected me with lidocaine and steroids. I cried when the needle went into my back, and then cried more in frustration when it didn’t work. One morning I woke up, after dancing until late at a Halloween party, and found that I couldn’t turn my head. The only comfortable position was lying on the floor. My neck was frozen for a week.

I traveled back to the US for my home leave. There, four months since my pain began, I got an MRI of my shoulder, which didn’t reveal anything much out of the ordinary. I had a fraying rotator cuff tendon and bursitis (swelling) under my shoulder. Nothing that would explain the pain levels I was describing. After going to a chiropractor, I decided to try PRP (platelet-rich plasma therapy), where they take your blood, spin it in a centrifuge to concentrate the platelets in the plasma, then re-inject the plasma back into your areas of concern. It promotes an inflammatory response that theoretically encourages quick healing. To say that the PRP hurt would be an understatement – and normally people do one or two areas at a time. I did five because I knew I had to return to Niger where I wouldn’t have access to treatments. The doctor advised me to stop doing yoga for a while to give my body a rest. I returned to Niger with my pain levels slightly lower than before.

A month later, both the pain and the stress from my job were at an all-time high. I decided that I needed to start doing yoga again for my sanity. Moving into a tripod headstand from a wide-legged forward fold, I felt something pop in my neck. I continued to do yoga for a few more minutes, hoping to push through the injury, but soon I couldn’t get off the floor. Since there were no reliable MRIs in Niger and no physical therapists and now I could hardly move, my employer decided to medically evacuate me to London.

In London, they discovered that I had a bulging disc in my neck. MRIs of my shoulder and thoracic spine were inconclusive. I spent my first night ever in a hospital and was put under general anesthesia so they could put nerve blocks around my spine. I started seeing an osteopath three times per week and a pain specialist and an orthopedic surgeon once per week. We talked about my pain and what was causing it: stress, bad posture, and too much dancing and yoga (as if there was such a thing!). I was put on heavy-duty painkillers while I recovered, but felt guilty about it, as painkillers had developed such a negative stigma in the US.

The treatments did not resolve my pain.

I was under a lot of pressure from my employer, and myself, to get better immediately. I wanted a silver bullet that would fix my pain once and for all. So, after discovering that my right (dominant) hand was 20% weaker than my left hand and that my slipped disc could be slowly weakening me, under the recommendation of my doctors I decided to get spinal fusion surgery. They would remove my bulging disc and bolt my two vertebrae together.

The surgery did not resolve my pain.

I started reading books and listening to podcasts about chronic pain. I learned that during their training, medical students in the US only receive, on average, nine hours of training on pain management, which is 0.3% of their curriculum hours (UK doctors receive thirteen hours. Not much better!).

I learned that AT LEAST one in five Americans suffers from chronic pain, and up to one in three.

I learned that in many cases, there was no structural explanation for someone’s pain. That is, perhaps they had an injury at one point in time, but now their scans show that the injury is resolved and that their bodies are structurally sound. They shouldn’t have ongoing pain, but they do… and no one can explain it. When no explanation is viable, the traditional options are to seek additional surgery, go to physical therapy, and to take painkillers.

Possibly driven by the opioid epidemic, more attention is finally going to chronic pain research. This research is showing that your brain creates neural pathways when it signals to your body that you are in pain – and these pathways can persist even after you are physically healed from an injury. You definitely still feel the pain – the stabbing, aching, tingling pain – even though there is no structural manifestation in your body. This is quite different from saying that it is “all in your head.” It’s not in your head; it’s in your body. But it’s likely caused by your head, not your slipped disc or bad knee. Instead of doing purely physical treatments meant to address your chronic pain symptoms, researchers are discovering that treatments are most effective when they “retrain your brain.” These treatments help you understand where your pain originates and reduces anxiety around the pain because guess what! Worrying about your pain or feeling depressed about your pain actually makes it worse!

I started trying apps like Curable, which combine learning about chronic pain with activities like journaling and meditation. I signed up for Insight Timer’s premium content and found an amazing course led by a woman who was in multiple catastrophic car accidents and has used meditation to overcome her pain. I went to holistic doctors who suggested that the sum of my combined traumas and the stress of my job were likely the main drivers of my pain.

“You lived in the DRC, Afghanistan, and Niger?” they said. “You took care of your dying mother? No wonder you feel this way!”

Hearing these explanations made me angry. I am not a martyr. But at the same time, they were a huge relief. There is not something “wrong” with my body. There is no magic key to “solving” my chronic pain.

“What’s wrong? You look totally fine!” was a refrain I heard from many friends and acquaintances when I said I couldn’t do something because I wasn’t feeling well. Chronic pain is often invisible, but it doesn’t make it any less real.

I knew that I couldn’t put my life on hold – couldn’t make any more decisions that revolved around my fear of the debilitating pain in my body.

So, I quit my job and decided to travel, despite being terrified of not having health insurance and of having to lug my bags around while I was still on the long path to healing from spinal surgery.

Two days before I left on my trip, I saw another pain doctor in a highly respected American hospital who gave me eight very painful experimental injections around my spine to see if burning my nerves would be an option to address my pain.

They didn’t work.

“When you come back, we’ll try different spots,” he told me.

“Wait, how long do the effects of this nerve-burning last anyway?” I asked him.

“A few years,” he told me. Burn my nerves every few years? There had to be another way.

“What are my other options?” I asked.

“Well, I guess you could try and get a lot of massages to break up the scar tissue,” he said.

“Great. I’m on my way to Asia, so that shouldn’t be a problem,” I replied.

At the time, I was still taking heavy-duty painkillers and had been going to physical therapy twice per week to try and regain strength and mobility around my spine. I had a one-month supply of the painkillers and told myself that I would be done with them by the time the month was up. Unfortunately, that was not the case, but I did find my pain to be slowly decreasing with time.

In Thailand, I took a Gua Sha training class, an ancient Chinese skin-scraping treatment that breaks up myofascial adhesions and brings blood to the area – sweeping away the “bad blood” and blockages. I got lots of massages. I asked other people to carry my bags. I weaned myself off painkillers. I spent far fewer hours in front of the computer, and the time I did spend was on my own schedule, not jam-packed with stress like what it had been at my job. I started taking Kratom, an Indonesian leaf that stimulates your opioid receptors but with almost no side effects and limited addictive traits, to treat my pain flare-ups. My pain levels went from a persistent four or five out of ten on good days and eight out of ten on bad days, to a persistent two or three out of ten on good days and six out of ten on bad days. Two days ago, I had my worst pain flare-up in months after vigorously exercising for the first time in a while. Up in the middle of the night and searching for something to treat my pain, I realized that I had forgotten which painkillers I still had because it was so rare for me to need them anymore. 

Pain is still a daily part of my life, but I’m no longer obsessed with solving it and I no longer think that something is wrong with me. I’m trying to live a life that is healthier for my mind – and therefore my body – and I will continue to do everything I can to learn about chronic pain treatment and hopefully help others in similar situations.

A fellow chronic pain warrior, Rose Barnes-Covenant, has recently launched a coaching program for people with chronic pain who are interested in exploring the mind-body connection and how retraining the brain can have major benefits for your pain. For more information, find her on Instagram @rosecovenant or Facebook at the “Back to Joy – Recovering from Chronic Pain” group.

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