My Story:  Traveling with Chronic Pain & CRPS

My Story: Traveling with Chronic Pain & CRPS

By Katelyn O’Leary

I’m sitting in a chair by the Emirates Airline check-in counter waiting for my wheelchair. I hate waiting. I hate wheelchairs. And, I have always hated flying.  I’m not afraid of flying – I just hate relinquishing control of my surroundings. Depending on other people is not something I’m very good at – but that’s exactly what is required of you when you travel by plane.

Relinquishing control, however, is a lesson I’ve had to learn the hard way.  After being diagnosed with Complex Regional Pain Syndrome (CRPS) due to having hip surgery in 2015, I have put my faith and my trust into the hands of doctors, physical therapists, specialists, radiologists, and nurses. Sometimes my faith has been rewarded, other times not so much.

CRPS is really just a fancy acronym for “We Don’t Know but We Will Sure Try.” And so – 12 medications, four full spine MRIs, a spinal tap, and three hospitalizations later – I have learned a hard lesson in trusting other people to do things for me while still being able to speak up for myself.

That being said, my condition has had serious ramifications on my self-esteem and my anxiety as it pertains to my surroundings. Sometimes I’m afraid to walk outside my apartment door, fearing my leg will cause me to stumble.

But, when I was invited to a wedding in India, I had to put my fear aside. I was not going to miss out on my friend’s big day, and I would be traveling with a group so what could go wrong?

Basically everything if I wasn’t careful.

Going to India was a massive undertaking for many reasons, including the fact that I had not been on an airplane since before my hip surgery.  But, I booked my flights in June 2015. We would be flying out of Los Angeles on December, 28, 2015, landing in Dubai (after 16 hours of flight time) for an eight hour layover and then flying from Dubai to Mumbai the next morning (three hours of flight time).

The wedding was January 2nd, 2016, and I had exactly six months to get physically fit and cleared to fly.  I wrongly assumed I would be much better by December, thinking I would fully recover. By August 2015, it was clear to me that I needed to re-think my recovery completely and instead focus on physical therapy and meeting with every specialist and doctor I have to discuss my medical options.

Traveling across the world would take two things: strengthening my leg, and the right cocktail of medications. I met with my neurologist, rheumatologist, physical therapist, my primary care physician, and my pain management specialist to determine what steps I needed to take both literally and figuratively.

I also contacted Emirates Airline to determine their policies for disabled travelers. I cannot stress this enough if you have a medical condition or disability, call the airline. Not only did Emirates place me in seats with more legroom, they also gave me a complimentary hotel room in Dubai during our eight hour layover so I could lie down and ice on a bed.

When I flew home for Thanksgiving, I used the flight from Los Angeles to Chicago as a trial run for my leg.  I took meds to help me sleep and relax on the four hour flight. Just as we were preparing to land, I woke up and it felt like my leg was a hot dog in a microwave: nuked on high and ready to explode. My ankle was throbbing as if someone had taken my foot and twisted it as hard as they could. My calf muscle felt like someone replaced my tissue with hot wires. My thigh muscle was contracting so hard I could relate to the Hulk. And my hip was burning with pain.  Fun fact about air travel for those with CRPS: the barometric pressure and / or cabin pressure can exacerbate nerve pain and make your pain 1000% worse. I leaned forward in my seat and grabbed my meds. By the time I met my family outside of O’Hare I was shaking with agony and needed to lie down in the back seat of my mother’s car with ice and a blanket.

If my pain was this bad on a four hour flight, how could I survive a 16-hour flight to Dubai? This was exactly what I needed to avoid. My neurologist prescribed me valium for the flights and the buses I would be taking in India. My rheumatologist helped me create a regimen of steroids (for swelling and inflammation) and pain meds. My primary care physician gave me the proper vaccinations and also prescribed me antibiotics in case I came down with a stomach bug.  My physical therapist met with me weekly to help stretch, strengthen, and heal my leg as much as possible.  But my pain management specialist? He told me in no uncertain terms that I should cancel my trip and stay home.

His reasoning wasn’t wrong. I was about to embark on a terribly long and arduous journey that would be hard on anyone – disability or no disability. But, I had something to prove. I had not worked for months towards this goal just to give up.  Traveling to India wasn’t just about the wedding anymore: it was about returning to my life. It was about being 27 years old and wanting to see the world. It was about proving to myself that I can have a life outside my medical condition, if I was brave enough to try.

Ultimately, the 16 hour flights were the hardest legs of my trip. I made sure I had all of my medications, but I also wore my TENS unit for the entire flight. For those who don’t know, a TENS unit (Transcutaneous Electrical Nerve Stimulation) is a “device predominately used for nerve related pain conditions (acute and chronic).”  A TENS unit works by sending stimulating pulses across the surface of the skin and along the nerve strands by attaching adhesive electrodes to the affected area (via tensunits.com). The TENS unit helped prevent swelling and flare ups in my leg due to the cabin pressure.

But the most important thing I had to do was stretch and move during the flights. Every two hours I would need to get up and walk down the aisles and stretch my body in the bathroom – which was extremely difficult since I’m over six feet tall and airplane bathrooms are tiny. Finally, I would request ice from the flight attendants every few hours and wrap my hip with it.

Waiting by the Emirates desk for my wheelchair, I didn’t know then what I know now – that I would have an incredible experience, and all of those months of preparation would serve me well, and that I could do it.

It wasn’t easy by any stretch of the imagination, I needed wheelchairs, crutches, ice, and a bag full of meds to make it, but with a little help from my friends and my amazing roommate who traveled with me, I was able to experience the wonders and beauty of India.

When I returned home from my trip, I realized I needed a new goal to invigorate me. There are many things I want to return to, such as being able to drive more than ten miles, my job and running.  Lucky for me I have a team of doctors who, God-willing, can help me reach those goals.

Editor’s Note: Katelyn (Katie) O’Leary is a 27-year old Indiana native living in Los Angeles and working in the entertainment industry who developed CRPS after a sports injury in college. She writes for the National Pain Report.

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Authored by: Katelyn O’Leary

There are 6 comments for this article
  1. Katie O'Leary at 11:20 am

    Thank you all for your amazing comments and support. It means so much to me and I truly hold you all in high esteem. Thank you!

  2. Sheryl Donnell at 11:22 am

    How awesome that you made this trip! I too want to return to overseas travel and I am now sure that I can!! But, I must also say that ice is always contraindicated in CRPS patients. Try going without out it and see if you don’t start doing better! Also, if a TENS unit helps you, a Spinal cord stimulator may make a huge difference in your life. Mine has been a life saver. It works like a permanent TENS unit.

  3. M. L. at 1:20 pm

    So happy for you that you managed to do something so grueling physically but satisfying emotionally.
    I too have CRPS/RSD & flying always exacerbates the pain.
    I have been told though, & want to share with you, that in having CRPS/RSD we should not use ice. I have been told not to use ice anywhere on my body, even if the area isn’t afflicted with CRPS/RSD.
    Good luck in all your future endeavors.
    Here is a link for you to read –
    http://www.rsdhope.org/ice-and-crps.html

  4. Kerry McKelvey at 7:28 pm

    Thank you for taking the time to write that Katelyn! How inspiring! I had been walking through airports due to being stubborn for years. Its amazing how I would be the first to tell others to get a wheelchair but never gave myself permission. After moving nearer to a bigger airport and the first time I ruined an important trip I swore I’d just look at it as a tool and enjoy it. There is an older demographic where I live and a company contracts with Southwest for the rights to the wheelchairs! The pushers work at reduced salary + tips to supplement their income like any restruant server. They have always said they love their job. I just make sure to tip well and enjoy sparing myself the pain and energy it takes out of me to walk that long walk. I couldn’t believe the difference it made in my pain but also in my energy! But I have to say I’m still trying to picture what kind of stretches you’d in the lavatory! Good for you!!!

  5. Donna at 9:03 am

    Amazing story, and was glad to read you made it! Keeping goals is so important when you have a chronic illness. Whether they be big or small, goals help us maintain some normalcy and positivity in our lives.