A Love of Philosophy and a Toolbox of Treatments Steer Malee Lin Through Her Pain Battlefield

After years of struggling with the pain of thoracic outlet syndrome and cervical dystonia, one woman rejects opiates in favor of Botox and Buddhist thinking.

While she flirted with philosophy at age 23, Malee Lin never knew that later in life, the writings of great thinkers would re-enter her life and save her from a world of pain. Malee first lit upon Aristotle’s writings as a student at the Sorbonne—a college and intellectual hub in Paris famous for being one of the first universities in the world.

After graduating with degrees in French history and civilization from the Sorbonne, now renamed the University of Paris, Malee moved to California with her husband, where she hustled day to day with three jobs. She worked at an art gallery during the day, taught English and Thai in the evenings at an international language school, and ran her own resale business online. She enjoyed painting, tapestry stitching, and knitting in her free time. But gradually, her right hand and forearm became weak, numb, and constantly painful. She was 27 years old, and could no longer pick up a paint brush, hold a cup of coffee, or even grip a toothbrush.

From the Daily Hustle to a Full Stop

Doctors initially thought it was a repetitive strain injury, like tendinitis or carpal tunnel, and gave her a wrist brace. Malee underwent physical therapy. Her hand function improved but the pain extended to her upper arm. She gradually had to give up all of her jobs and rely on her husband’s income. Three years later, a neurologist finally diagnosed her with thoracic outlet syndrome (TOC), named after the anatomical spot where a bundle of arm nerves called the brachial plexus can get pinched as it dips under the collar bone and angles laterally to innervate the arm.

Surgery to make more space for the nerve bundle at this anatomical outlet can be done, but Malee has decided against the procedure thus far, due to a variety of reported outcomes. She chose to manage her condition primarily with recommended non-steroidal anti-inflammatory medications (NSAIDs).

However, at age 30, shortly after receiving her TOS diagnosis, a new searing neck and shoulder pain appeared.  She also started getting migraine headaches that wouldn’t retreat. “I couldn’t sit up anymore, the neck pain was so severe,” recalls Malee. Bedbound in her family’s California home, Malee endured daily pain for three years.

Her doctors attributed the pain to the diagnosis already on her chart: TOS. They gave her muscle relaxers and opioids. Malee only filled her opioid prescription once. “Narcotics never helped me,” she says. She tried Vicodin once, but found no pain relief. “I tried two pills. It made me feel drunk, but it didn’t do anything [for the pain].” She said that it was “not a good route to be on anyway with all the news about addiction.” Instead, she relied on prescription strength NSAIDs—diclofenac, ibuprofen, and ketorolac. They helped to relieve her pain flares, but because of the known long-term use and overdosage risks of NSAIDS—gastrointestinal bleeding, kidney strain, heart attack and stroke—she couldn’t take enough of them to keep her pain at bay.

Malee joined a TOS support group and read up on her diagnosis, but noticed discrepancies between others’ symptoms and her own. For example, she had pain with sitting up while many others in the group did not. She brought this up to her doctor once. She recalls that he stared at her and did not order any further testing. “Some doctors probably questioned why [TOS] was so bad for me,” Malee says, “and thought I was being so dramatic.” 

Pinpointing the Right Diagnosis

Finally, at age 33, three years after her first neck symptoms appeared, a pain management anesthesiologist diagnosed two additional culprits instigating her chronic neck pain—cervical dystonia and occipital neuralgia. In cervical dystonia, which is more common in women than men, involuntary muscle contractions twist the head, often pulling the chin toward the shoulder, which can cause severe neck and shoulder pain. To top that off, she had occipital neuralgia, which causes chronic pain in the lower head, neck, and eye.

One way that doctors may help patients to relax the tight neck muscles in cervical dystonia is to inject onabotulinumtoxinA (Botox). When Malee received her first injection, she felt relief for the first time in years. To maintain the muscle relaxation, she receives repeated Botox injections every 90 days and also takes the anticonvulsant gabapentin, which is FDA indicated for post-herpetic neuralgia but often used off-label for chronic pain conditions.

Botox injections have been found to be an effective reliever for neck pain. (Image: iStockPhoto)

In the following two years, Malee received two other diagnoses—in 2014, chronic migraine, and in 2015, complex regional pain syndrome (CRPS). In total, her current treatments include pulsed radiofrequency three times a year for occipital neuralgia, a lidocaine nerve block injection in her head and neck every three weeks for chronic migraine and occipital neuralgia, continued Botox injections for cervical dystonia and chronic migraine every 90 days, andketamine infusions for her CRPS three times a year (Read how a patient with CRPS is also using ketamine infusions for pain). She takes NSAIDs for TOS as needed to manage pain flares and gets massages regularly. Malee sees a pain management anesthesiologist for most of her treatments as well as a neurologist to quell migraines.

Since starting this multimodal treatment for her multiple conditions, Malee has regained  function. While she still has to pace her activities, and rest most of every day, she can sit up reclining and use her hands. She can go out to dinner and make it all the way through dessert. She has a knack for discovering at-home gadgets that make performing daily actions easier—an electric can opener, a foot mouse, software that clicks if the cursor hovers over a topic, a book holder for reading in bed, a hands-free hair dryer, a scalp massage brush to lather shampoo, and a single-serve coffee machine. She shares the ideas with others in need of daily solutions on online support groups.

Rediscovering the Great Thinkers of the World

But what really kept Malee going during her bedridden phase and what continues to get her through her daily struggles today, is her passion for philosophy. In Nicomachaen Ethics, Aristotle wrote: “The truly good and wise man will bear all kinds of fortune..and will always act in the noblest manner that the circumstances allow.” Figuring out how to act in “a noble manner” in the circumstance of chronic pain is not easy. One day, immobilized by pain, Malee admits contemplating suicide. Knowing she had to wrap her head around this “tough one” as she calls it, she dove not only back into Aristotle but also the philosophic writings of Buddha, Marcus Aurelius, and Thich Nhat Hanh.

Each day, she uses philosophy to change her pain experience, always keeping in mind a couple of adages: “Pain is inevitable, but suffering is optional” and “This too shall pass.” —sayings Malee shares often in her support groups.

When a pain flare occurs, “You acknowledge that it hurts,” she explains, “you remember to stay calm, observe it, and let it pass. You shift your focus to somewhere else, pay attention to the blue sky at home or something else at home, and focus on your breath until the flare subsides. Always remember that it will pass.”

Turning to philosophy, one patient was better able to direct her mental health to overcome pain. (Image: iStockPhoto)

She also keeps her pain in perspective by maintaining an attitude of gratitude: “Even if I’m in pain, I’m grateful that I have my loving husband. I have an apartment to live in. I have food to eat. I have medical help. I’m not sitting in a third world country post-tsunami. It could always be worse.” 

Most importantly, Malee paces herself, staying aware of what her body can handle each day. A mainstay of Buddhist teaching - “Serenity comes when you trade expectations for acceptance” - helps her when she thinks about how to come to terms with how these ailments have changed her. “You have to have peace with it, love yourself still, not who you used to be.” 

She also remembers to laugh. Sometimes her father teases her, noting the irony that his daughter, who received some of the best and most expensive education in the world, is now unemployed and homebound. But it was this very education, her encounters with the great thinkers of the world – in person and in written prose — that enable her to see outside of her pain. Quoting fourth-century Stoic philosopher and Roman Emperor Marcus Aurelius, she shares: “Very little is needed to make a happy life; it is all within yourself, in your way of thinking.”

Editor’s Note: The patient reported on in this piece chose to use an alias.

Updated on: 11/13/19
Continue Reading:
CRPS and My Ketamine Infusion Journey
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