Any Ehlers Danlos Zebras out there? Looking for support and workout advice.

I'm so sorry to hear about your struggles. I wish I could help. I don't have EDS, but a close friend's daughter was diagnosed last year. Then recently my friend found out all three of her children have it to varying degrees. Her daughter is actually going through her 4th surgery today. It's a tough disease and I hope you find the support you need.

Hi I have eds hypermobility type. Do you have a physio? I do a lot of weight and band work. short lever, slow controlled moments. Initially focusing on one joint at a time so I could pay total attention and ensure I was working hard and safely. I have now built up good muscle around my joints which prevents a lot of sub laxs but does mean when joints do dislocate it is more painful to relocate. I also did Pilates with a sympathetic instructor.Who respects that I know my body and its limits.
It is more of a challenge. but possible. I would advise you get a routine from a physio initially though . If that isn't possible I am happy to share my routine.

Are you a member of the Ehlers danloss society? They have some great message boards. There may be professionals there who can give you really specific support.

I don't have EDS but I have had a lot of experience trying to find a fitness routine that takes into account my hypermobility. I've found that some certified Pilates instructors can have an enormous understanding of kinesiology and adapting exercises to work with different types of bodies/abilities. The movements are also slow which helps my self awareness and I can ask for corrections. One on one instruction, of course. It reminded me of PT but there was a holistic focus on the body and fitness. Find a highly rated studio and try out a few instructors for one on one training until you find a match.

KT6377 wrote: »

I was diagnosed with EDS (Classic Type) and scoliosis when I was 18, and staying physically active has always been a challenge. I deal with frequent subluxations and dislocations of the shoulders, elbows, wrists, hand joints, and neck. These have resulted in strains, sprains, bursitis, and long term nerve pain. Most recently I have been experiencing alignment issues with my sacrum (usually caused by walking on uneven surfaces) resulting in extreme hip pain. I am constantly in the cycle of 1 step forward, 2 steps back because every time I start making process on a workout routine I get an injury, end up side lined, and lose any progress.

I've tired working with trainers and taking group classes but I haven't met a trainer yet that understands the disease or cares to learn about it. Even when I arm them with literature to educate them, most of the time my issues are treated like excuses. I'm looking for people in the same boat as me that might be able to help me find an exercise routine that works, or can provide advice on how to continue making progress when you are genetically wired not to build muscle and your constantly afraid of what part of you is going to break next.

For those who have no idea what EDS is, here is a really great article about it. It's a little long, but its funny, frank, and quite honestly the best description of how it is to live with this disease I've found.

http://scibabe.com/dislocating-rib-sneezing-life-ehlers-danlos-syndrome/

I'm type 3, hypermobility type and have only been dxed in the last 7 years despite showing the symptoms for all of my 45 years. A couple of years back I was sublexing my ankles on a monthly basis (the A&E staff couldn't believe I hadn't actually broken anything the egg like swellings on my ankle was that dramtic) and in constant pain. Granted I'd made things worse for myself by allowing the pain and fear of injury stop me moving and reached 290lb.
But since joining a gym (with trainers that knew about if not quite understood what hypermobility/EDS is), losing a lot of weight and strength training my pain levels have seriously decreased, my mobility has increased and I've only had the one sublex in 6 months (which only had me off my feet for a day rather than a couple weeks and nowhere nearly as much swelling and bruising).

While it is important that those training you understand your limits and quirks (one of my PTs didn't realise just how easily we bruise and why my knees are constantly bruised from floor work), it's more important that you understand your limits and just how far you can push yourself. When stretching don't stretch as far as you can, remember that although we often have limited range of movement due to all muscle/joint damage we can also stretch far beyond what is the norm. I have to take special care with squats, I do bodyweight squats in all stances (hip, shoulder, sumo) bum to floor, but my trainer likes me to hold off with weight on my back and only go to just above parallel to protect my knees and hips.

More than anything though my advice would be to take it slow, but do as much strength training as you are able. Strengthening the muscles around the joints will help reduce the disclocation and sublexs.