Travelling With Fibromyalgia

*This post, initially written in November 2019 after my first solo trip since my Fibromyalgia diagnosis, has been updated in October 2022 to include further learnings from trips I’ve taken since then*

If you look at the picture above, you’ll probably think it’s a nice shot of me, taken by a professional photographer in Hamburg, and maybe not notice anything wrong, right? Well, if you know me well or if you look closely, you may notice the pain on my face. This was taken at the end of a very long day in Hamburg, the day after an even longer day, when I’d not slept well, it was freezing cold, I’d been on my feet all day, and the photographer wanted me to sit down on the kerb for the photo. This face sums up travelling with Fibromyalgia, for me.

As someone who travels a fair bit, mostly solo, travelling with Fibromyalgia is more difficult. As I was newly diagnosed (at the time of writing this post) the condition was still completely new to me anyway, and before this trip I’d JUST started new medication. My emotions were all over the place, my pain was bad, made worse by lots of walking and the cold weather, and I was determined to spend eight days rushing around Hamburg, Copenhagen and Stockholm like I normally would. I soon realised that travelling with Fibromyalgia meant I had to travel differently.

It was hard for me to realise this during that week and I know that others will be in the same boat, so I thought I’d try and help my sharing my tips for travelling with Fibromyalgia, based on the trips I’ve done so far, and coping strategies I’ve started to find in my day to day life.

Pace yourself

This is the thing I found the hardest, I think. I’m not very good at sitting still, or having a lie down, and resting. I want to cram in as much as possible in each city, if I have an hour left I want to fill it with seeing one last thing-but on my last day in Copenhagen I realised I was exhausted and I just couldn’t walk anymore. I started sitting down for ten minutes at least every couple of hours, using the cold as a handy excuse to go for another cup of tea (or Warm Chocolate, which is a warm version of a Hot Chocolate and therefore at a drinkable temperature) and I found it easier to cope with the pain in Stockholm because I’d paced myself. On more recent trips I’ve taken it a step further, having a lazy morning at my accommodation if I’m planning on being out in the afternoon and evening, or coming back in the evening if I’ve been out all day. I also have A LOT of sit downs on many, many benches, and spend 10 minutes watching the world go by instead of rushing about constantly.

Wear layers

I’ve always been a warm person, it’s a joke amongst my team at work that I rarely wear a coat, but since the Fibromyalgia diagnosis I feel changes of temperature so much more. On trips, in the car and even in my house, I need to wear layers, so I can quickly add or remove one depending how I’m feeling. A delightful new symptom is the top half of me is really warm, so I’m in a t-shirt, and my legs feel like ice-so I’m often found with three coats wrapped around my legs because I don’t have a blanket at work. I always wear, or at least pack, layers, including thin but warm scarves which can double as a handy blanket when needed. I now travel in an oversized hoody and leggings for comfort, but also so that I can add or remove that layer at will (without it taking up half of my suitcase)

Plan public transport

I’ve always been a walk everywhere person, clocking up 20-30,000 steps per day in a new city, but I can’t do that anymore. Walking that much would mean a day in bed the next day and I can’t spare the time, so now I research the city’s public transport before I go. In Hamburg, Copenhagen and Stockholm I used their metro system as often as I could, even if I was just going to the next stop, and it did help. In Budapest we did a lot of Ubers, and had a lazy day where we took a train to a random stop, had a walk around and then got the train back-meaning I had a couple of hours sat still watching the countryside whizz by out of the window.

Take the lift

Or the escalator, or the moving floor in the airport, or the ramp. Steps hurt me the most and so I’ve even started using the lift to go down one floor at work. This is the reason WHY there is a lift, don’t be ashamed to use it. No one has asked me why I’m going down one floor, hopefully they never will but if they do, I’ll explain. (Since writing this post, one person at work did, very rudely, complain about me using the lift, and our CEO swiftly put posters up explaining invisible illnesses)

Ask for help

If you need a hand lifting your bag into the overhead locker, ask if someone else can help. If you need a seat, ask someone to move. I appreciate this is hard and not everyone feels comfortable doing so but genuinely, most people will help. Travelling with J especially has made me realising that asking for help isn’t a bad thing, although he usually offers before I ask-and I know that he’s never been bothered if strangers have asked him for help either.

Have you ever experienced travelling with Fibromyalgia or any other health condition? Do you have tips to add?