Chronic Pain, Disability, Ehlers-Danlos Syndrome, health, Travel

Travelling with Ehlers-Danlos

Ehlers-Danlos… the travel companion no one ever asked for or wanted, but as with all Chronic Pain conditions we’re all in this for the long haul and so even when we go holiday, EDS comes along too.

I have recently returned from two weeks of travelling around the West Coast of America (with a 9 hour stop in Canada thrown in for good measure). So, how did I cope with two weeks of travelling and 2 long haul flights? Well, my dear reader, keep reading and I will share with you some of the things that I have found help to combat my uninvited companion.

  1. Pre-board

The airline crew are there to help you, make use of this. Get to your gate early and speak with the people on the desk about pre-boarding. This gives you the chance to get everything you are going to need/want on the flight and take your time in doing so.

  1. Seating

You and only you know your condition and how it affects you. Think about the different seats offered on your flight and how each one will help/affect you. It might be that the aisle seat is best so that you can get in and out easily without risk of dislocation, or you might find the window seat the best option to prevent neck and shoulder pain by giving you something to lean on.

I personally pay to book an emergency exit/bulkhead seat when flying economy as this gives you invaluable leg room enabling you to get up and down without irritating your fellow passengers too much.

Of course, if you are in a position to be able to afford Business or First Class then obviously this is going to be your most comfortable choice for long-haul flights.

  1. Food

One of the most common comorbidities of EDS is Mast Cell Activation Syndrome. Whilst I am lucky to not have this, I do know what it is like living with life-threatening allergies.  I’ve been severely (anaphylactic) allergic to nuts my whole life, which as you can imagine makes travelling pretty challenging sometimes. I always pack a stash of non-perishable food in my luggage so that whenever I’m out and about I have something safe to eat just in case I can’t find somewhere that can cater for me. I also always take a little pouch full of things like oat bars, raisins etc. with me on the plane so that I have snacks I know are 100% safe to eat when the cabin crew are handing out food.


  1. Hydration

It’s important to be hydrated for anyone but it’s particularly important for those of us suffering with Chronic Pain. Water helps keeps our joints loose (I know; this sounds ridiculous when you consider that for those of us with EDS this is our whole issue) but there is nothing worse than standing up after hours in a cramped seat to find your joints are so stiff you can hardly move. Take a large bottle of water with you and ask the cabin crew to re-fill it for you throughout the flight. Trust me – your body will thank you for it!

  1. Tens Machine

This is probably my one saving grace on any flight and my main pre-flight ritual. Before I board my flight I make sure I set my tens machine up. I usually place two electrodes on my back and one on each shoulder ready to turn it on once the plane has taken off. I don’t have it on a particularly high setting but I do find that the subtle pulses going into my back and shoulder seriously reduces my discomfort and means that I’m able to enjoy my trip from the get go rather than having to spend the first few days recovering from the flight. I use the Domas machine and I couldn’t recommend it enough. I find having the ability to use two different intensity levels at the same time far more effective in managing my pain than the other models I have used before.

  1. Luggage

Years ago you would not have ever seen me board a flight without anything other than a handbag (oh, how times have changed!). Nowadays, I prefer to go for the trusty backpack. The only issue is that with everything I need to carry for my allergy and EDS it can be pretty heavy, which when you already have chronic pain all over your body isn’t exactly ideal. Because of this, I tend to go for backpacks that have a fastening handle at the top so that I can strap it to my cabin case and save my back extra pain.

  1. Biofreeze

This was probably my one and only saving grace on holiday. I’m pretty sure I used it every day. It’s not a permanent fix but for a couple of hours it took the edge off the pain and allowed me to walk around and enjoy making memories with my family. Whilst I was in LA, I found the roll on biofreeze, which is a game changer as it enables you to reapply biofreeze on the go without needing to locate a toilet to wash your blue goo off your hands. The roll on is also in a handy 100ml container meaning that you are able to take it on flights with you.

  1. Comfortable shoes

Not only do I have chronic pain but I am also a chronic over-packer and this is never more evident than when you look at the amount of shoes I take with me on holiday. I never know why I end up packing so many pairs though as I usually wear the same 2 pairs of shoes throughout every holiday.

Shoes have always been my biggest challenge when it comes to EDS due to the simple fact that as much I need to wear comfortable and supportive shoes, I could never find these features in any fashionable shoes. That was before I came across Vionic shoes – shoes that look like any other person my age would wear except they have built in, orthotic insoles. Never will I have to worry about whether my orthotics will fit in my shoes again. It’s fair to say that I’ve spent an absolute fortune on shoes in recent months but my god was it worth it. For this trip I took my trusty Joey trainers from Vionic, I wore them almost every day of the holiday and despite having severe plantar fasciitis was able to walk  everyday for 2 weeks with minimal pain.

  1. Prescriptions and Drs’ Letters

I’ve always travelled with a Drs’ letter due to the fact I have to carry Epi-Pens and Cetirizine with me for my allergy but more recently I’ve started to ask my Dr to include my medication and tens machine on their and explain that I use them for EDS. I carry this along with a copy of my prescription with me at all times. By having these with you whilst you travel you can prevent any security nightmares such as the one I had at Singapore Airport when they insisted on testing my Epi-Pen out.

  1. Travel insurance

I mean, this is should be pretty self-explanatory as everyone should really take out travel insurance when going abroad. However, it is absolutely vital for anyone with EDS or any other Chronic Pain condition. Yes, it is pretty expensive but I’m pretty sure visiting an overseas hospital with no insurance is more expensive. I’ve found goodtogo insurance the best option personally, it’s quick and simple to use and takes barely any time.

So there you have it… 10 things, which make travelling a lot easier for me to cope with when I have an unwanted companion.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s