Exercising with Ehlers Danlos Syndrome, Hypermobililty and PoTS

So, this being Ehlers Danlos Awareness Month it seems like a good opportunity to blog about exercising with Ehlers Danlos Syndrome - I have the Hypermobility type - and also the associated problem of PoTS (that's postural orthostatic tachycardia syndrome don't you know, now breathe!)

(A hypermobile big toe, yesterday)

Here's the lay person's 'in a nutshell' guide to what these two conditions mean for me: widespread pain in almost every joint or muscle at some point during every week; chronic fatigue and flare-ups of acute fatigue; and fainting fits. All caused (it is theorised) by weak or over-stretchy collagen throughout my body and being genetic, that's never going to change. The stretchy collagen means that the ligaments which keep 'normal 'joints within 'normal' range are overstretched. My joints pop out of their proper position all the time - or as the witty cartoonist Hannah Ensor puts it 'my joints go out more than I do'!

In terms of running the main challenges are my knee and ankle joints, which are really unstable. Thankfully, since being diagnosed I've had excellent support (PUN!) from my local NHS podiatry and physiotherapy teams. I usually walk with the custom made orthotics pictured below in a neutral trainer - the above purple Saucony's being my current running trainer of choice. 

As an experiment though I was recently fitted for new trainers at Run4It in Glasgow and have opted for a more supportive trainer which I'm going to try without the orthotics and see how that feels. Also they are blue and well-snazz.

There are much more detailed explanations of both types of EDS here and PoTS here so I'm not going to repeat any of that but it should be clear from the above description just why exercising might be a challenge for someone with EDS.

It took over ten years for me to be correctly diagnosed and at that point I was housebound for much of the time. Once I had my diagnosis I began reading as much as I could about my conditions (there's lots more about my life with EDS and PoTS on my old blog for anyone who is particularly interested in that story).

I decided that for me (I would never tell anyone else what they should do with their body) getting stronger and fitter was something I could do to improve my overall life. It made sense to me that if joints are unstable and ligaments are stretched then the one thing I can have some control over is my muscle. Ten years of semi-regular bed rest had left me with very little muscle indeed and having never been at all sporty or strong, building it up is taking time. But the improvements are amazing. I can carry small shopping bags home again from the supermarket, for example, something that had become impossible for me in my early thirties.

I am absolutely convinced that I will be able to lift that bottom 10kg weight by the end of this year. I started with 0.5k weights last year and I'm now up to 8kg. Grrrrr!

Since entering the Tri-Together triathlon last year I've been really inspired by some of the stories I've read online from other people with multiple conditions and EDS. Two of my favourites are Donna's Beating Limitations Blog and Lara Bloom's story of doing the London Marathon which has been made into a documentary that will be screened at several cinemas this month. 

(three quarters of Team4Ply at Pollock Park Run last weekend)

And last but not least, exercising has also helped me make some tremendous new friends.

Every member of Team4Ply has had their own challenges in getting this far but we are absolutely determined to do the best we can on May 25th and we thank you all for your support so far. If you haven't donated already (or even if you have!) please do so today by visiting our Just Giving Page .

Don't forget that you can win PRIZES! by donating to our Just Giving Page. You can also donate by text: Just text TPLY49 £5 (or whatever amount you want to give) to 70070 


**The fancy new term for this is self management and if you go here you can see me looking uncharacteristically glamorous as I received the award for 'Self Management Champion of the Year' in the Scottish Parliament last year. Ooh la la!