Supporting people with
Complex Regional Pain Syndrome

Travelling with CRPS? Can you do that?

After being diagnosed with CRPS in my right foot and leg, this question was one I had no answer for. I had no idea where to find information on travelling with a disability. It was a real insight when I started to research online. It soon became clear that disabled passengers were few and far between and there were many horror stories. With very little useful information, I had to start by trial and error.

But what I can say now, 10 years on from diagnosis and having flown around the world, is ‘YES’ you can travel with CRPS and it is amazing.  I have been privileged to have an opportunity to travel for extended periods and to do shorter trips. Along the way, there have been challenges and at times even the best-laid plans didn’t work out. Initially, I travelled with crutches but for the last 7 years I have used a wheelchair as well. This gives me the freedom to explore by pacing my energy and pain.

My first flight was to Portugal and one of my biggest fears, was that the air pressure would increase my pain. This thankfully did not happen but what I did find, was that I had more swelling in my foot. A travel must for me is now a pair of large fluffy socks, which I put on as soon as I am on board. This avoids any discomfort from extra pressure in footwear. 

I did three more short haul flights before my husband and I started planning a bucket list trip, which would allow us to fly around the world. In 2011 I had been seriously ill (unrelated to CRPS) and spent some time in intensive care. I felt lucky to be alive but it made me reflect on dreams I had to travel and top of that list was to snorkel the Great Barrier Reef. So what started as a trip to Queensland developed into a 3month itinerary and 10 flights, which would circumnavigate the world. For this, I used my local travel agents who were amazing. I developed the itinerary and they helped with checking accessible accommodation and organising holding 10 flights until I was cleared to fly by all the airlines. All airlines have a quota for numbers of disabled on each flight, never assume that booking ensures you can board. It is always best to advise the airline as soon as you book to confirm a place.

When I book flights I always arrange assisted travel. This requires you to fill out forms detailing your needs and information about your wheelchair so that they can make room in the plane hold. This can feel intrusive and at times unfair that I am unable to travel like everyone else. But over the years I have become more accepting, as it means I can explore new horizons. In order to ensure my chair is not damaged and actually on the plane I book the wheelchair to the door of the aircraft. It is then taken down to the plane hold directly. This avoids it coming out of the baggage system a different shape or being left behind. Unfortunately, despite thinking we had sorted this, we had a problem flying into and out of Hong Kong Airport. Virgin and Singapore airlines had all agreed to this arrangement because for the airline this was acceptable. What none of us had realised was that Hong Kong airport do not allow disabled passengers to do this. By the time we found this out it was two weeks before we departed and we had no choice but to accept. 

Unfortunately, flying out of Hong Kong to Singapore they did damage the chair and as this was the first leg of our trip, it could have been a disaster. Thankfully, it was only dented and the seat cover ripped. I immediately contacted the airline sending photographic evidence and they agreed to repair it once we returned to the UK. This is one of the biggest grievances that disabled travellers have when flying. The disregard for expensive equipment that is effectively our legs, is still happening too often. I have sat on planes and watched baggage handlers throw my chair onto a baggage truck!

When we flew into Perth, my next challenge was drugs. I was to be away for three months and this meant that my cabin case was half full with prescription medication. Customs asked on the entry form if I had any illegal or restricted drugs, I said no, as I assumed that prescriptions were not included. But each country has their own rules, I should have said yes and let them decide if I could bring the medication into Australia. A sweaty moment but thankfully they let me off. I’ve not made that mistake again. It is important before all travel to check you are able to take your medication into a country before booking. Always travel with a prescription or letter from your GP confirming your medication and never put them into hold luggage. There is always a risk you could lose or have a delayed suitcase. I always pack any medication I need on the flight into an easily accessible bag. It is a good idea to try and stick to your UK timings and slowly adjust to the local time. Especially when you move a number of time zones. 

My final requirement for air travel is an ambi-lift onto the plane. Although I can walk with crutches, the movement on the steps leaves me feeling unsteady and at risk of falling. Not to mention the pressure of others behind you on the steps making them wobble more. You need to arrange this at the time of booking your travel with each airline. At the check in desk you will be directed to wheelchair services. Every airport has their own assistance team who will organise for you to board safely. They can escort you through the airport or arrange to meet you airside once you have done customs and the obligatory coffee and duty free. 

Once all this is in place the fun can begin. So where did we end up? 

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Hong Kong Island Kowloon

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Western Australia

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Yes I did snorkel The Great Barrier Reef

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The Whitsundays                                 Sydney

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The New York Skyline

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I appreciate that CRPS affects everyone differently and I do understand that I have been fortunate to be able to get to a place where I feel able to tackle these adventures. I know for some, water is a fearful place but I was lucky to be given hydrotherapy early on in my treatment and have continued to swim every week. I had to work really hard on desensitising my limb and this has definitely been key to reducing my pain. I recently had some minor surgery on my affected limb and I have had to steel myself to desensitise again. 

I have written this blog, not to demoralize those not yet there, but to just give a little hope, that CRPS doesn’t always get to restrict our lives. 

Thank you for taking the time to read my story

Diane Brook


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