Ehlers-Danlos Syndrome & Weight Loss.

Lily Phoenix · 11-16-2011, 04:27 PM

Hello!

I was wondering if anyone else here has been diagnosed with this genetic disease, and if they have any problems losing weight relating to it?

I myself have a lot of pain in my joints, which restricts my movements and how much I can exercise in one go, or over a long period of time (which can be very counter-productive).
I've only recently been properly diagnosed, but I've been dealing with these problems (and being overweight) ever since I was in my mid-teens - misdiagnosis or just not even being able to pin it down due to the number of symptoms is a regular problem

.

So basically, if anyone wants to share stories, hints, tips, I'd be really appreciative!

Thanks for reading!

mandalinn82 · 11-16-2011, 04:41 PM

There is a thread going for those exercising with various physical challenges. While they likely don't have the same genetic disorder you do, it's a good place to talk about limiting yourself physically within the boundaries your body can handle:

Exercising with obstacles

Erinp918 · 12-04-2011, 02:32 PM

I find that it presents both physical challenges to losing weight, but emotional ones as well. The chronic pain leads to depression, which then leads to weight gain. And since I've had a lot of surgery, it's hard for me to be consistent with diet or exercise.

Let me know if you'd like to chat!

Esofia · 12-04-2011, 05:11 PM

I don't have EDS, but my cousin does, and I do have a medical condition which is made worse by exercise so it's a tricky subject for me as well. Could you find a physio who specialises in EDS? It may well be possible on the NHS, you could try ringing wherever you'd be sent for physio and asking whether they have anyone there with experience of EDS. Meanwhile, there's an often-quoted saying here: Diet to lose weight, exercise for fitness. Don't worry about relying on exercise for losing weight, just do whatever you can and under medical supervision. If worse comes to worst, you could always lose weight without exercising (I'm successfully doing that), so think of the exercise in a different category.