Cycling UK Forum

I'm a long time cyclist but never really found a place to feel comfortable online. I happened upon this forum some time ago and came back recently after seeing a thread being circulated elsewhere. Today I decided to take a leap of faith and actually register!

I have EDS. The way the condition affects me the most is that I am extremely hypermobile. Unfortunately, not in the circus contortionist kind of way but in the sleep on one side for too long and your shoulder will fall out of place kind of way!

Cycling is pretty much the only exercise that I feel good doing, that I actually enjoy and that doesn't cause me too many issues. Unfortunately, I am noticing more and more that things are slightly off after a ride and recovery is taking longer and longer.

I guess what I'm looking for is other cyclists with EDS or similar to tell me that all is not lost.

Info about EDS: https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

Hi Ophelia, welcome to the forum. My sister-in-law has EDS pretty bad so know how debilitating it can be. She used to ride a bit but she is having serious problems with her ankles and hasn't been able to ride for a a couple of years.

You mention things have gotten worse recently - in what way? increased dislocations? specific joints?

A weird one that has bothered me this past year is numbness in my hands. I've tried to adjust the handlebars to keep things in alignment but it still happens.

Also, lower back issues. When I've been out for more than an hour, my lower back will start to seize up and walking becomes difficult for a few days after.

Im no Physio but considering what you also said about your should popping out in your sleep, could staying in one position be a factor? If so then maybe a set of handlebars that allows for multiple hand positions (eg Butterfly bars) might help with the numbness

Lower back might be a trickier one.

It's quite possible that's the issue. I'm currently seeing a physio who has no idea about EDS or cycling so that's fun!

I've been looking at various mods to support various parts and what I inevitably end up with is a wheelchair!

I know the square root of nothing about the condition, nor recumbents, but I am wondering if that might be the way to go here?

If I'm being perfectly honest, I'm not ready. Cycling is pretty much the only freedom I enjoy and I'm not willing to let my disability take that away from me. If I can find work arounds, I'd rather that.

Bonefishblues wrote: ↑28 Dec 2022, 12:25pm I know the square root of nothing about the condition, nor recumbents, but I am wondering if that might be the way to go here?

OpheliaRaven wrote: ↑28 Dec 2022, 12:40pm If I'm being perfectly honest, I'm not ready. Cycling is pretty much the only freedom I enjoy and I'm not willing to let my disability take that away from me. If I can find work arounds, I'd rather that.

Bonefishblues wrote: ↑28 Dec 2022, 12:25pm I know the square root of nothing about the condition, nor recumbents, but I am wondering if that might be the way to go here?

Recumbent cycles, which typically provide much greater support to the body than conventional upright cycles. There's a good amount of information on here, and Google will show you the type(s) of cycles I am referencing.

Thanks. Will have a look.

OpheliaRaven wrote: ↑28 Dec 2022, 12:10pm A weird one that has bothered me this past year is numbness in my hands. I've tried to adjust the handlebars to keep things in alignment but it still happens.

Also, lower back issues. When I've been out for more than an hour, my lower back will start to seize up and walking becomes difficult for a few days after.

Both of these are things that can happen to people without EDS when the bike set-up isn't quite right. It may seem counterintuitive, but the solution is often to move the saddle, rather than the handlebars. If you have depended upon how it feels to get a good a set-up, there may be things that you can do to improve it.

Member 531colin has a bike fit DIY in his signature http://wheel-easy.org.uk/wp-content/upl ... -2017a.pdf that you may find helpful.

OpheliaRaven wrote: ↑28 Dec 2022, 12:40pm If I'm being perfectly honest, I'm not ready. Cycling is pretty much the only freedom I enjoy and I'm not willing to let my disability take that away from me. If I can find work arounds, I'd rather that.

Bonefishblues wrote: ↑28 Dec 2022, 12:25pm I know the square root of nothing about the condition, nor recumbents, but I am wondering if that might be the way to go here?

I don’t ride a recumbent but I have considered it and suggest that they’re not a negative or lesser way forward but rather just another way of doing things. If I happened to know someone local to me who had one then I’d be wondering how I might get a spin on their recumbent to check-out what I might be missing. ‘Not ready yet’ might be doing yourself a disservice.

Handlebar numbness can simply be down to insufficient padding on the bars; I like to use drop bars because they can give many alternative positions in which to place your hands.

Good luck with your search … and do remember the bike fit mentioned in another post above too.

Wheels for Wellbeing may be a useful resource? They specialise in helping folks who need accommodations to start or continue cycling, use bikes as mobility aids, etc. They run sessions where people can try different types of pedal cycles, or get assistance with their own.

https://wheelsforwellbeing.org.uk/

Welcome.

Are you already connected to the UK support group?
https://www.ehlers-danlos.org/informati ... disorders/

Happy Christmas

Jonathan

Thanks for the info. I'm definitely going to look into all of my options and I will check through the bike fit.

Carlton green wrote: ↑28 Dec 2022, 4:14pm

OpheliaRaven wrote: ↑28 Dec 2022, 12:40pm If I'm being perfectly honest, I'm not ready. Cycling is pretty much the only freedom I enjoy and I'm not willing to let my disability take that away from me. If I can find work arounds, I'd rather that.

Bonefishblues wrote: ↑28 Dec 2022, 12:25pm I know the square root of nothing about the condition, nor recumbents, but I am wondering if that might be the way to go here?

I don’t ride a recumbent but I have considered it and suggest that they’re not a negative or lesser way forward but rather just another way of doing things. If I happened to know someone local to me who had one then I’d be wondering how I might get a spin on their recumbent to check-out what I might be missing. ‘Not ready yet’ might be doing yourself a disservice.

Handlebar numbness can simply be down to insufficient padding on the bars; I like to use drop bars because they can give many alternative positions in which to place your hands.

Good luck with your search … and do remember the bike fit mentioned in another post above too.

Thank you.

I am connected to a few support groups but don't spend too much time on social media.

Jdsk wrote: ↑28 Dec 2022, 4:25pm Welcome.

Are you already connected to the UK support group?
https://www.ehlers-danlos.org/informati ... disorders/

Happy Christmas

Jonathan