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

crooked_left_hook

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/

LiveLoveFitFab

I don't have EDS, but boo in any trainer who thinks your disorder is an excuse. I hope you persevere and find a training regimen that is right for you.

I have severe hip dysplasia and some people think I'm faking it too. So I know the pain that accompanies walking on uneven surfaces. Yikes!

Anyways, bumping for exposure. Im sure there are others out there.

JenHuedy

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.

crooked_left_hook

JenHuedy wrote: »

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.

It's a genetic disease. My mom has it and has been on disability for 10 years because of it. All three sisters of my sisters also inherited it but managed to skip my brother. I'm sorry to hear that your friend's daughter has had so many surgeries I hope she has a fast and easy recovery.

Taliafinch

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.

girlwithcurls2

Is swimming or an aqua fitness class a possibility? It must be frustrating to be making progress and then get sidelined by injury

crooked_left_hook

Taliafinch wrote: »

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.

I worked with a PT when I was dealing with an injury last winter. When I started seeing her I had been diagnosed with ulnar nerve impingement in my elbow, which is where we started treatment. During treatment the symptoms moved to include my shoulder, but she would not treat the shoulder without sending me back to the orthopedist. This was even after a diagnosis of Thoracic Outlet Syndrome from my chiropractor (that is in the same network of doctors and she had full access to his notes). The shoulder problem was the root cause, not my elbow, so I had my Chiro and massage therapist finish treating it. The point of the story is the PTs I've been dealing with will only treat the presenting symptom and then they tell me to take yoga classes for the EDS. **Patient bangs head against wall**

Some suggestions on band exercises for arms would be great. I have the bands, I just need to know what to do with them.

Taliafinch

That's dreadful. Where do you live? I'm in the UK and spent 2 weeks as an in patient when I was diagnosed having amazing holistic treatment. I wasn't walking when I went in and could when I came out! My knee issues were caused by the way I walked. protecting my hips from dislocation. It also affected my spine which aggravated a neck injury. Bonkers to look at joints individually and not the whole body. What is your range of movement? My shoulders are pretty stable. I can lift my arms well over 90 degrees without issue. Simple resistance exercises like
leaning on a wall and pushing away forward and sideways.
band round your chest with one arm in and push away.
band around fore arms and push away.
Sat with legs out put band round your thigh and forearm and lift.
As long as you always put the band on your long bones. Never a joint, and work slowly you will e able to get safe resistance.
I am doing chalean extreme at the moment. Which you can do with weighs or a band. I am finding it really good from an eds muscle building point of view.
That might be worth a look.
x

Taliafinch

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.

crooked_left_hook

@Taliafinch I live in the USA. I'm Minneapolis now but I used to live in NYC. I didn't have issues like this with doctors in NYC, but since I moved here it's been very different. They are much more focused on fixing the presenting problem and looking at test numbers than taking a wholistic approach. I also didn't have as many EDS issues when I lived in NYC. When I went in for my righty arm I was getting nerve pain in my hand so they said it was an overuse injury from too much computer work. Then it moved all the way up my arm so my whole arm felt numb, and my pinky finger was so tight it would stick out to the point that to keep it tucked in while I was working I had rubber band it to my ring and middle fingers. Turns out it was thoracic outlet syndrome. It started from over stretching my elbow trying to help carry my boyfriends guitar speaker cabinet, aggravated by heavy work hours, and then further aggravated by moving to a new office and desk that didn't work for my height. My shoulder was compensating for my elbow and got so tight it cut of the nerve at my shoulder joint. Ugh!

Once that healed (6 months) I was putting weight on my other arm to stand up from the floor and all the bones in my wrist over extended and I ended up with a 'sprain' that took 6 months to heal. Followed by a sacrum misalignment from walking on uneven pavement, and finally a strained hip flexor muscle from the Lord only know what The only doctor that treats me wholistically is my chiropractor but there is only so much he can do. I'll definitely start looking for a good PT, and probably try some Barre classes to strengthen up the hip musles.

Good suggestion about joining the EDS society! I will do that. Thanks for listening!!!

MacaronStyle

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.

Taliafinch

I'm so sorry you are getting so little medical support. Have a look at www.ehlers-danlos.org they have some excellent information sheets. I give them to all health professionals and my daughters teachers.
I trained as a dancer until I was 18 and the eds incapacitated me causing diagnosis. My hypermobility was an asset until then! I would be cautious about a Barre class as generally the positions involve turn out.- internal rotation from the hip that is not a great plan for us with bendy bodies! Much more effective for us to keep our joints in line. There is also quite a high focus on flexibility. So chat with the teacher before joining to check they understand your needs.
like Macaronstyle I have had some very good experiences with Pirates instructors.
obviously that is supposed to say Pilates but my auto correct thought pirates sounded much more appropriate. Maybe a pirate instructor would do the trick. Captain Jack would certainly make for an interesting, fun class!

firef1y72

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.

crooked_left_hook

For an update...I followed @Taliafinch advice and found a physical therapist willing to work with me to strength all my joints. I've not got an impressive collection of multicolored rubber bands