Natural Remedies for Ehlers-Danlos Syndrome

| Modified on Apr 15, 2021

Posted by Stephanie (Athol, Ma ) on 04/01/2015

I am wondering what things can help a 12 year old boy, I think this, coupled with his puberty, is the cause of severe pain he is currently in. Ortho doctors in the area have no assistance or help. Anyone have knowledge of puberty age Ethers Danlos?

Posted by Anais (None Provided) on 02/27/2015

I practiced yoga for about a year before stopping due to joint pain. Being hypermobile, a lot of the poses were simply too easy for me, so I tended to overstretch without realizing it. Each yoga session was followed by a few days of painkillers due to severe joint pain. If you were to tell me then that "yoga is relaxing" I would think you are out of your mind.

This was way before I learned I have EDS. Now I practice mindful movement (like Katie from Massachusetts), even for something as simple as walking (keep posture straight, don't swing hips too much, don't oversupinate ankles, don't overflex soles). It takes a lot of effort, but I've manage to reduce the amount of pain I have on a daily basis.

You just have to constantly remind yourself not to go out of the normal range of motion (you can Google for a chart or simply compare with a non-EDS friend/family member). Practice in front of the mirror. After some time (hopefully) it should come to you more naturally, and you would be able to work your muscles without wearing out your joints.

You really have to learn what works and what causes pain and adjust the muscles being used accordingly. For me, anything that calls for the use of shoulders, I have to be really really careful. I love the elliptical machine though!

Tai-Chi/Qi gong is something Ehler Danlos (Hypermobile) sufferers can consider as an alternative to yoga or pilates for balance and stability. It looks deceptively easy, but it forces you to concentrate on the muscles being used. Good luck!

Posted by Sophie (United Kingdom) on 02/18/2015

I am a little confused you have been advised AGAINST yoga for Elhers Danlos Syndrome. I have been a patient of Professor Graeme of the UK Hypermobility Clinic since 2008 and advice received then and even now is quite different. Yes, low impact exercise is advised for patients with EDS, for example, running, dancing etc can indeed be detrimental to an EDS sufferer because they lack stability in their joints, therefore such exercise can lead to grinding, subluxing or even dislocated joints and torn tissue. However Yoga when done correctly does not have the same effect. Yoga, pilates and yoga-lates is CORE stability and helps build strength in the joints. Prof Graeme explained when I was first diagnosed that the easiest way to look at it was, you have double joints. To support such joints you need double the strength in those joints and less weight inbetween. At the grand age of 31 years old, I am being medically retired from the police service due to EDS and since I am on the strongest pain relief available and still suffering from pain I have been put forward for a pain management programme which incorporates yoga into your daily routine. I have been advised whilst waiting for my placement to practice yoga or pilates at home or in a gym in the interim. Hope this makes sense to you and not just a load of blarb. Best of luck!

Posted by Jennifer (Traverse City, Mi) on 02/18/2015

To the person that has been working to relearn how to use your muscles and joints--please share what you are doing.

Posted by Katie (Massachusetts) on 02/06/2015

I agree and disagree. For 3 years now. I have been trying to relearn how to correctly use my body. Muscle to joint. Mind to muscle. And correct postural issues. Been a long road. And at times overwhelming. But not impossible. Doesn't take long to see results. I truly believe that a lot of pain involved with ehlers Danlos is misuse and over use of joints and from not finding correct muscles to engage for task. After 3 years. I'm not ready for a yoga class YET. Still ha ve some work to do. I'll get there eventually. I love seeing my body change. And it feels so good when you finally make a correction and find muscle. Thank you

Posted by Susan Mc (California, US) on 01/25/2015

My daughter has Ehlers-Danlos, we went to see a genetic's doctor and counselor last week, they specifically told her not to do yoga, as with being hyper flexible she could hurt herself. As far as exercise, they said low impact like an elliptical machine, as it does not put stress on the joints.

General Feedback
Posted by Charity (Michigan, US) on 01/10/2015

Can Gelatin Collagen Hydrolysate be helpful to strengthen connective tissue disorder (Ehlers-Danlos Syndrome)?

My son has been diagnosed with a mild case. After studying his condition, I am pretty sure I have it.

Last 2 years, I switched to "cardio only" to 30 minutes of stretching exercises a day which improved greatly.

Now I have been ingesting more homemade broths and Great Lakes. My joints seem better after taking Gelatin Collagen Hydrolysate. I have not been on it long enough to make a an assessment.

Thanks in advance.