Tips for Managing and Communicating About Chronic Pain 

By Sean Samitt, CPhT, ASHP 

During a recent hospitalization, I was once again reminded of how challenging dealing with chronic pain can be. Amid trying to get home medications restarted, acute pain under control, and spending twenty-plus hours in the Emergency Department, I was a bit exhausted when the nurse finally brought some medications to try and get my pain down. We followed the familiar routine:  

Nurse: Can you tell me your name, date of birth? 
Me: Sean Samitt, August ***, 1993. 
Nurse: And can you tell me where your pain is and rate it?
Me: Both legs and back. Zero Stars. 0/10. Would not recommend it.

Perhaps that wasn’t the answer she was looking for, but in my defense, I was quite tired. Snark aside, as many know, navigating pain can be quite a challenging part of our medical journey. Prior to becoming a left below-knee amputee (LBKA) in March 2023 – due to vascular issues that ultimately caused recurring infections, I have also been a chronic pain patient for over half my life. After surgery to correct a birth defect in elementary school, I developed Complex Regional Pain Syndrome (CRPS), a chronic pain process that causes severe burning, hypersensitivity, and vascular problems. I needed a cane on the “good” days and a wheelchair on the “not-so-good” ones, and CRPS has led me to specialists across the entire United States. Over the years, I have tried many different treatments, some with more success than others.

At seventeen, I embarked on my pharmacy career, which allowed me to experience the other side of patient care. Having worked as a Certified Pharmacy Technician with specialties in Emergency Medicine, Critical Care, and Medication Therapy Management, I also had the opportunity to work as an oncology patient advocate for one of the nation’s largest cancer centers.

Chronic pain is a significant public health issue. According to the Centers for Disease Control and Prevention, in 2021, “an estimated 20.9% of US Adults (51.6 million persons) experienced chronic pain.” Despite its prevalence, many face challenges in relaying this information to others and being seen and heard. Chronic pain may vary in sensation, frequency, cause, location, duration, etc. Communicating the complex constellation in which we frame our pain can be quite challenging. Whether we are asked to describe the pain, rate it on a scale, or share how it can limit us, communication is the first step towards finding strategies that work for us.

Everyone’s pain journey is unique, and your experience is just that: yours. As the old saying goes, not everything works for everyone, but I hope that even one of the tips outlined below helps you assemble your toolbox. Consider these ideas, adopt what resonates with you, discard what does not align, and use them as inspiration to develop your strategies. Some of these tips are geared toward the long-term aspects of your pain journey, while others are strategies you can turn to during particularly challenging periods of pain.

1. Consider a pain journal: Communicating with your healthcare team effectively and efficiently can be supported by curating a pain diary. Whether digitally or “old school” pen and paper, record the following:
   1. When did the pain start or end? What triggered it, and what alleviated it? Try safe methods that can provide relief, including options like a shower or bath, heat, ice, a walk, changing positions, distraction, medication, etc.
   2. The intensity of the pain using the commonly used 1 through 10 scale in medicine. Describe the sensation and pinpoint the location.
   3. Consider factors associated with your pain, such as changes in diet, activity levels, or any challenging physical therapy sessions.
   4. Did the pain cause other problems such as a fall, loss of balance, inability to concentrate, appetite changes, insomnia, etc.?
2. Prep for your appointments: Our time with providers is limited, so use your time wisely and plan ahead. Having a family member or friend accompany you can be beneficial, providing advocacy and support and ensuring accurate communication with your provider.
   1. Given that some visits may be as short as 15 minutes, create a list of issues you want to address. Understand that the number of issues that can be addressed in one visit may be limited due to time constraints.
   2. Prioritize the issues you want to discuss – what needs to be addressed now? What can wait?
   3. Take notes for yourself (or create an outline) for talking points.
   4. If you bring an advocate, have them take notes for later comparison or to allow you to focus on the dialogue with your provider(s).
   5. Get written follow-up instructions, check your portal for updates, and take notes to add to your files. This will help you recall important details from your visit, such as medication changes, test results, new test orders, referrals, etc.
   6. Consider making a binder for your medical visits. Having one place to keep this info will help you prep for appointments and can be incredibly helpful in cases of emergency. At a minimum, create a concise “Cliff Notes” version containing your doctors’ information, phone numbers, medications, allergies, diagnoses, and surgeries. Keep a copy accessible on your phone, in your wallet, etc.
3. Consider if Spoon Theory is right for you. In explaining chronic pain and its ups and downs, I love using Spoon Theory to describe the ebb and flow of it.
   1. Identify activities that replenish your spoons and be intentional about incorporating them into your routine. Understand what signs and symptoms you experience when running low on spoons.
4. Embrace your hobbies. Chronic pain is challenging, and it is essential to dedicate some of your time to things that help replenish you (emotionally, spiritually, and/or physically). Try some new ones! We can avail ourselves of amazing opportunities as members of the limb loss and limb difference community.
   1. Fitness: Adaptive athletic programs are available both virtually and in-person. One such offering is the free weekly virtual yoga session provided by Yoga for Amputees, accessible at https://www.yogaforamputees.com. Additionally, local YMCA branches may have relevant programs, and the Amputee Coalition National Conference provides excellent clinic opportunities, such as First Swim, Rowing, Tennis, and Golf.
   2. Pick up a new or familiar instrument, attend a symphony or music event in your area, or try a new craft.
   3. Religion and faith-based engagement opportunities abound, as many of us have turned to our faith during times of distress.
5. Form a strong team around you: This might not be a fantasy football league, but you are the coach and general manager. This goes for your family/friends/supporters but also for your providers. Frequently, you may require consultations with various specialists, as well as physicians, nurses, advocates, social workers, etc., and need them to be able to communicate and coordinate your care. Once you have your team, communicate your goals with them regularly.
6. Don’t ignore your mental health and well-being! Our pain takes a toll, both physically and emotionally. Embracing practices like deep breathing, meditation, or investing time in activities that nurture a positive mindset—such as talk therapy or cognitive behavioral therapy—can significantly contribute to alleviating pain by prioritizing the well-being of your mind.
   1. An exercise I love is the 5, 4, 3, 2, 1 grounding technique. In times of stress where you need to pause for a moment, take a deep breath. Identify 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things you can smell, and 1 thing you can taste. Take a deep, calming breath to conclude.
   2. Music and art can be great resources as well to reach for when anxiety and frustration reach a fever pitch. I always have a “watch later” playlist prepped on YouTube and Prime, a Spotify playlist to turn to, or a Kindle booklist.
7. Understand the differences between chronic pain and acute pain. Chronic pain exists for at least 3 months, whereas acute pain is more recent. Over the years, I’ve learned that the burning CRPS pain I have is usually not something to get “worried” about, whereas acute pain can represent something new going on. Do not be hesitant to reach out to your providers if you feel something new or even if you need reassurance that your chronic pain is valid and real. Whether phantom limb pain, back struggles, or arthritis, your pain is real, valid, and seen.
8. You are not your pain. Your identity extends beyond your pain, and you have so much to offer those around you. In the same vein, if you are hurting, don’t be afraid to reach for your toolkit, take medications, ask for more help, or seek out untapped resources. It is not a sign of weakness to need a hand (or leg, or hug, or laugh).
9. It’s okay to say, “I’m not okay.” Whether that means you need to take an hour or a day to recover or charge your internal batteries, or if you need to reach out for help, know there’s always someone to reach out to and a place to turn such as a crisis center, the emergency department, or the National Suicide Prevention Hotline by calling 988 (or 1-800-273-8255), texting 988, or visiting https://988lifeline.org to chat and be connected to a trained counselor who can offer help.
10. Search carefully on the internet, use trusted medical information sources, and reach out to organizations like the Amputee Coalition’s National Limb Loss Resource Center to find the resources you need! Understand that friends and family have good intentions when sharing recommendations about your experiences. Feel free to share information selectively and politely decline offers or suggestions, expressing gratitude with a simple “thanks for your concern.” Turning to your trusted medical team is also a great place to start.

View pain management information through the Amputee Coalition’s National Limb Loss Resource Center. 

Disclaimer: The Amputee Coalition does not endorse or promote any specific methods mentioned in this article. The information provided is for general informational purposes only and should not be considered medical advice. It is always advisable to conduct thorough research and consult with your medical team before making any decisions related to medical devices or services.