Ep. 26 Travel with Chronic Pain
Episode Summary
In this episode of 'It's Not In Your Head' podcast, Dan and Juz explore the myriad of challenges and strategies around traveling with chronic pain. They discuss pre-travel preparation, in-flight strategies, travel management, and post-travel recovery. Justine shares personal anecdotes about her recent trip to Costa Rica, highlighting practical tips and emotional aspects of managing pain while traveling. They also delve into medication management, communicating needs, and creating a tailored 'holiday program' with your Doctor to ensure a smoother travel experience. The episode aims to empower those with chronic pain to reclaim activities they love, like traveling, by sharing actionable insights and boosting confidence in managing their condition during extraordinary times.
Episode Overview
The episode emphasizes that while pain can be a "thief" that takes away things you love, strategic planning can help reclaim the ability to travel and experience life more fully.
Building Travel Capacity
Justine explains how she gradually built her travel capacity over several years, starting with short trips before attempting international travel:
"It took me a lot of different trips and a lot of experiences with travel to build up the strategies, to build up the courage, to build up the confidence, to be able to do a trip even like this. So you don't just go from nothing to, 'Hey, let's go to Costa Rica.'"1
She describes her progression from two-hour drives to LA, then to Washington, then the East coast, before eventually building up to international travel. This gradual expansion of boundaries follows a pattern similar to graded exposure therapy, where each successful experience builds confidence for the next challenge.
The hosts emphasize recognizing progress in specific areas, even when pain might worsen in others. During her Costa Rica trip, Justine noted her CRPS leg performed better than expected, allowing nearly 9,000 steps daily, while her back pain worsened significantly. This mixed experience highlights the importance of acknowledging improvements without letting setbacks overshadow progress1.
Pre-Travel Preparation
Proper preparation is crucial for successful travel with chronic pain. The hosts recommend:
Approaching travel like training for an athletic event
Building strength and improving sensory tolerance before departure
Training specifically for anticipated activities (increasing daily steps, practicing on uneven surfaces)
Preparing mentally for the challenges ahead
Putting yourself in the best possible condition before departure1
"You have to give yourself a chance by making an effort ahead of time to be in as good a position as possible," Justine explains, noting that travel itself inherently triggers stressors and disrupts routine1.
Medication Management
Dan outlines essential medication considerations for travel:
Regular Medications
Ensure sufficient supply for the entire trip
Research country-specific regulations regarding medication importation
Carry proper documentation (doctor's letters, original prescriptions)1
Flare Management Strategy
Discuss with your doctor before departure
Consider anti-inflammatories and amitriptyline (if appropriate) for 1-3 days during flares
Potentially adjust regular medication dosages temporarily
Use medications you've tried before rather than experimenting during travel1
The hosts recommend consulting the International Narcotics Control Board (INCB) website for country-specific medication regulations to avoid legal issues. This resource provides detailed information about what medications can be brought into different countries and what documentation is required1.
Dan also discusses the "holiday program" – interventional treatments like cortisone injections that can provide temporary relief specifically for a trip. While these don't solve long-term issues, they can make travel more manageable1.
Travel Logistics: Airport and Flight Management
The hosts strongly recommend using available assistance:
"Don't be afraid to use wheelchair service or other things that make travel easier for yourself. This can be really hard when you're young, when you have a dynamic disability, when you don't look like you're disabled, it doesn't matter. It's a form of pacing."1
Justine acknowledges the emotional difficulty of using these services, particularly for younger people or those with invisible disabilities who may face questioning or judgment. However, she emphasizes that conserving energy during transit means more capacity for enjoyable activities at your destination1.
Other flight-specific recommendations include:
Always selecting aisle seats for easier movement
Paying for extra legroom when possible
Communicating needs to flight attendants
Using effective distraction techniques during flights
Bringing supportive pillows or devices for proper positioning1
Managing Symptoms During Vacation
Justine shares numerous practical strategies from her Costa Rica trip:
Pacing and Modifications
Eating some meals in more comfortable locations (by the pool rather than in the dining area)
Prioritizing essential activities and skipping others to conserve energy
Scheduling more demanding activities earlier in the day when energy is higher
Using a cane to allow standing rather than prolonged sitting during meals1
Environment Selection
Choosing accommodations with pools or water features for anti-gravity relief
Finding comfortable positions (like lounge areas) for social activities
Creating spaces to perform necessary exercises or stretches1
Communication and Boundaries
Justine emphasizes clear communication about limitations: "I did my best right to communicate my needs and how I was doing as clearly as possible at different points with what I can do, what I can't do, what do I wanna do, and what is absolutely not going to happen no matter how much other people want me to do it."1
She notes the importance of traveling with understanding companions, especially during early travel attempts after developing chronic pain1.
Post-Travel Recovery
The aftermath of travel requires deliberate management:
"You have to basically integrate recovery days into your schedule when you come back. You can't come back on a Monday and go back to work on Tuesday."1
Justine recommends:
Building buffer days into your schedule after returning
Gradually reintegrating normal routines and habits
Starting with lighter workloads or responsibilities
Prioritizing rest and rebuilding capacity before resuming full activities1
Without this recovery period, patients risk returning at their "weakest point" and triggering immediate flares when normal stressors resume1.
The Emotional Journey
Throughout the episode, Justine candidly discusses the emotional challenges of traveling with chronic pain:
"That's the hard reality is while you're having this great time and once in a lifetime experience, you are internally fending off a lot of grief... you become sort of a specialist at having this very awkward, coexisting experience that is very sad and is very hard."1
Despite these challenges, she emphasizes that the experience can still be worthwhile: "It's not just about decreasing pain, it's about increasing joy. And sometimes that does come at the cost of more pain, but it's still this escalation in the right direction overall."1
Conclusion: Expanding Possibilities
The episode concludes with the concept of "relentless forward progress" – acknowledging that improvement with chronic pain isn't linear, but with persistence and strategic management, activities once deemed impossible can become achievable.
"Life with complex pain is not like Nike. It's not 'just do it'... It's having these strategies and having these ways to build confidence and teach yourself that you are capable of doing more."1
The hosts encourage listeners to take a long-term view of improvement, recognizing that building a higher pain threshold and coping capacity happens gradually over years. By strategically managing pain before, during, and after travel, patients can reclaim experiences that chronic pain initially took away