Life After Transplant: Understanding the 5 Pillars of Chronic Pain Management

One of the primary reasons I participated in a stem cell clinical trial was to alleviate my chronic pain. According to the US National Library of Medicine, chronic pain is pain that lasts over three months, and in terms of diagnosis and management approach, it is complex and hard to decipher. Many of the challenges are related to inadequate training and a lack of understanding of the physical, mental, emotional, and social dimensions of pain.¹

The impact, treatment, and management of pain

Chronic pain can negatively impact an individual’s life, leading to physical disability, mental health issues, and increased medical costs, but despite the existence of pharmacological therapy, it remains highly resistant to treatment.

#1 The pain trap

Sickle cell pain shows up at unfavorable times - at a job interview, in heated arguments, unsettling turbulence on an airplane, a brisk walk to class, or while catching a train to work, during sex, anxiety-riddled tests and the arch-nemesis of patients; when there is a drastic weather change. We know firsthand that chronic pain does not play fair.

Working as a full-time publicist has taken me to many cities, including Boston, Chicago, New York, Seattle, Toronto, London, Paris, Nairobi, Accra, Lomé, Johannesburg, and more. Upon arrival, the first thing I do is google the closest hospital or emergency room because I can almost guarantee a pain crisis will occur regardless of destination. Countries have unique protocols for the treatment of chronic pain so I had to proactively create a detailed pain regimen for self-management that is cost-effective.

Sickle cell advocate and wellness expert Dima Hendricks once said to me “pain management actually starts when you are not in pain,” and her words ring true every day. Doctors stress the importance of staying active but given my ongoing battle with avascular necrosis (AVN), I shied away from anything related to fitness.

#2 Let’s get physical

As I got older, I noticed that my metabolism in my 30s had changed significantly. Carbs, fat, and sugar don’t burn off as quickly, and the immuno-suppressants prescribed cause bone pain and additional weight gain. So I decided to start low-impact physical exercises like yoga and pilates.

Yin yoga poses help to build strength, release muscle tension, improve flexibility, and better support my joints/bones. What I’ve noticed is that bringing my body into balance has alleviated years of lower back and hip pain that I thought was caused by sickle cell.

My recommendation to fellow warriors is to start at the basic level and make a feasible commitment: begin with 15-min sessions bi-weekly, then adjust your time and frequency as tolerated. If you are looking for cost-effective options, YouTube has a plethora of free yoga and pilates videos to help you stay active from the comfort of your home.

#3 Beauty rest & relaxation 

Quality sleep is restorative for the body, but many patients dealing with chronic pain find it hard to fall asleep and stay asleep. My battle with insomnia started in college for two reasons:

• I had left my home country of Nigeria to attend the University of Texas at Austin at age 16. I was young, Texas was foreign to me, and I didn’t know a single soul, so I spent most nights homesick.
• From birth, I took to finger sucking, which is commonly known to have a calming/soothing effect that aids sleep. Embarrassing jokes from my roommates made me stop cold turkey, and with no alternative way to cope, I battled with a lot of internal stress.

For me, sleep disturbances resulting from pain made coping with pain much more difficult so I introduced holistic remedies like chamomile tea, melatonin, and meditation exercises. Before #SelfCareSunday became a social media trend, I spent my weekends reading books, getting a manicure, and watching movies just to help me relax.

#4 H2O 

A million things become priorities after transplant, but staying hydrated is numero uno because the medication side effects cause excessive dry mouth. With the lockdown and a global pandemic, I found a few unconventional ways to stay hydrated:

• For one, placing a metal straw and an 8 fl oz bottle of water in every handbag I own was a big step. I figured if I could pack up lip balm, hand sanitizer, on-the-go meds, and a mask, then I could make room for water too.
• Adding flavor to water and investing in hydration sticks - Before I start my day, I toss cucumber and lemon slices into my water bottle for taste. Hydration sticks are liquid IVs that help with physical activity, prevent migraines and promote healthy digestion. They do come in handy on those hot summer months.
• I don’t wait until I’m thirsty to drink water, nor do I snack between meals without water. Water is good for your skin, hair, nails, and body, so adhering to the phrase “prevention is better than cure” best supports my transplant recovery.

#5 - Integrative therapies for pain treatment

If I'm completely honest, I haven't taken control of my chronic pain. Being a business owner is a 24/7 job, and sacrifices have to be made; mine comes in the form of anxiety-induced pain due to poor sleep patterns. I try to live a purpose-driven life, so I work tirelessly to build my brand and legacy. In simpler terms, I'm just a workaholic!

With limited sleep, I rely on heating pads, Chinese balms, Epsom salt baths, acetaminophen, and prescription medications to get me through bouts of intense pain. According to the National Center for Complementary and Integrative Health, factors like emotion, genetics, environment, and stress can affect pain perception, but my providers have taught me alternative therapies for chronic pain management like acceptance and commitment therapy (ACT), music, and mindful meditation.

It's not always easy, but I take each day, hour by hour, and celebrate those small victories.²