Yoga and Hypermobility – Managing Chronic Pain and Joint Stabilization with Ehlers-Danlos Syndromes/Hypermobility Syndromes

Yoga and Hypermobility – Managing Chronic Pain and Joint Stabilization with Ehlers-Danlos Syndromes/Hypermobility Syndromes

“Yoga is dangerous for EDS.”
“I was told not to do yoga.”
“Yoga will make you end up in a wheelchair.” 
I’m sure that you’ve heard all these phrases before, and many people feel that all three are absolute truths. While we all are entitled to our opinions, the fact is there is no black and white factual statement that has come out about doing yoga when you have Ehlers-Danlos Syndrome. Usually, our ideas stem from personal beliefs, from what we have been told by someone we trust, or from our experiences with yoga. We are all different and what works for someone else, may not work for you and vice versa. This applies to the practice of yoga.
There are countless people with hypermobility/Ehlers-Danlos syndrome, who have been practicing yoga for years and have done well. There are also those who tried it and were not strong and self-aware enough to know how to protect their hypermobile joints when practicing yoga. In their defense, extreme hypermobility used to be glorified, not just in yoga, but dance, gymnastics, and other sports where being able to contort your body in extreme ways was viewed as a value and helped give you that edge over others who could not do the same.  You take that same person who is not aware of how to protect their hypermobile joints when practicing yoga and pair that with an instructor who may not be aware of the damage that can be done long-term to the body when pushed to those extreme positions, and you can see why many EDSers were told not to do yoga.
When you learn more about the philosophy of yoga and the various types of yoga, it becomes apparent how much more there is to the practice of yoga. Many perceive yoga as a form of exercise where you need to push poses to the extreme – it’s quite the opposite. My feelings on the topic of yoga and EDS probably come as no surprise to anyone who reads what I post or sees my Instagram yoga challenge pictures. However, I have not always liked yoga, nor thought it was beneficial to me. I felt that yoga was quite annoying, but I never questioned if it was good or not or not for me once I diagnosed with EDS almost 11 years ago. Then again, I was also told to not workout at all and didn’t listen. So, it’s likely anything I was told about yoga would have gone in one ear and out the other as well. All I knew was that movement felt good and not moving caused more pain. The exercise was and still is my biggest coping mechanism for Chronic Fatigue Syndrome (CFS) as well.

Finally being able to hold crow pose – Winter 2014/2015

My opinion about yoga changed when I bought a Bryan Kest’s power yoga tape (a VHS tape to be exact!) when I was in college. I purchased this video because I’ve always done intense workouts and wanted something like yoga to help balance out my workouts. I also wanted to do something when I didn’t feel like working out. I liked the idea of yoga, but a traditional class was way too slow and tedious for me. I wanted more intensity and the pace to move slightly fast, which is how I learned that there are different types of yoga practice. From what I read, vinyasa flow yoga and ashtanga yoga seemed to be more up my alley. Bryan Kest’s power yoga tape was the perfect blend of ashtanga and vinyasa flow yoga practices, and it soon became a regular in my workout routine. I even worked out to Bryan’s video the morning of my wedding. Because I’ve always followed the Just 5 Minutes rule and have done it for years, that still applied on my wedding day. Plus, I needed a way to calm my butt down.
I’ve included highlights from two articles that specifically address yoga and Ehlers-Danlos Syndrome. One article is from a yoga teacher, who also has EDS and her thoughts on how to teach yoga to people with hypermobility. A yoga article for those with EDS, written by someone who has EDS and teaches yoga – perfect!

Teaching Yoga to People with Hypermobility – Jess Glenny

“Is there such a thing as “too flexible”?

“These suggestions for working with yoga students with Hypermobility Syndrome / Ehlers Danlos (HMS / EDS) are written in response to the many requests for help and advice I receive from teachers of hypermobile students. They are neither exhaustive nor gospel. They are personal experience rather than expertise. I have been practicing yoga with Ehlers Danlos (Hypermobility Type) for 32 years and have experienced many different attitudes and approaches from teachers. In the last decade, I have also been fortunate enough to teach many students with hypermobility.
While teachers with a normal mobility range are sometimes, understandably, anxious about how to work with hypermobile students in a beneficial way, most of the principles for teaching hypermobile people are also good practice for working with all students, so hypermobile people are easy to integrate into a general yoga class. Individual techniques for individual postures are outside the scope of this writing, but pretty much any principle for alignment and physical integrity you have learned is potentially a great tool for hypermobile students. Feel free to use it.

To read the rest of Jess’ article, go to Teaching Yoga to People with Hypermobility. ~ Jess Glenny

Pike handstand for IG yoga challenge – over a year of PT for my neck and back, as well as slowly building my wrist strength to get to this point.

The second article was first published in Self Magazine online and has been featured several other places. In this article, one woman discusses her battle with EDS and how she copes with chronic pain through yoga.
Christine, who is featured in the article, is a someone who I met via the Facebook page Yoga for Ehlers-Danlos Syndrome, Fibromyalgia & Hypermobility. She also submitted a story for Our Stories of Strength – Living with Ehlers-Danlos Syndrome.  An excerpt of her story is below:

The Healing Power of Yoga: How Practicing Helped Me Cope with Pain

Many of us have dealt with a painful injury or illness at some point in our lives—some more serious than others. But for Christine Spencer, a 30-year-old from Collingswood, NJ, dealing with severe pain is an ever-present fact of life.
Spencer was diagnosed at 13 with Ehlers-Danlos Syndrome (EDS), a debilitating connective tissue disorder related to fibromyalgia. It causes hypermobility, muscle tension, constant pain, and in some cases, death.
When her symptoms worsened and caused her to withdraw from college, doctors wrote her a prescription for a cocktail of medications, including painkillers.

This was the only way western medicine knows how to deal with disease,” Spencer says.
I did some physical therapy, but no one gave me a long-term plan to help me heal.”

For months, she was completely bedridden and unable to carry on with any semblance of a normal life.”
To read the rest of Christine’s article, go to Yoga for chronic pain with EDSChristine’s blog, The Gluten Free Yogi, is also linked to my website. When she posts, her new posts are also updated on my site.
Finally, it is nearly impossible to cover all that goes into the practice of yoga with Ehlers-Danlos Syndrome in one post. However, I will continue to write about yoga for EDS, share resources and my journey with yoga. When done correctly, yoga can be an amazing way to learn how not to hyperextend and gain strength and stability. Yoga is also incredible for learning how to incorporate movement and mindfulness as a way to manage chronic pain.
The most important point to remember is to do what you feel is best for your body. You are the best advocate for your health. Never begin an exercise program or start a new activity without speaking to your healthcare provider first.
Additional yoga and EDS links are listed below.

One of my favorite poses/stretches for leg pain

Yoga and EDS links and resources:
– The Gluten Free Yogi’s collection of yoga for beginners videos and links
Dr. 911 Well on Twitter
– 14 types of yoga explained
Jenni Rawlings article on hypermobility vs. flexibility
Jess Glenny’s Moving Prayer Practice Blog
Katy Bowman’s post on Hypermobility
Tips for managing Hypermobility Ehlers-Danlos Syndrome
The relationship between chronic pain and inactivity
Moving Naturally with Hypermobility seminar summary and presentations
Answers to questions about exercise and EDS (3 post series)
PT and exercise resources and links for those with EDS
Pilates with Hypermobility
Living with Hypermobility Syndrome
Bryan Kest’s Power Yoga Video – Sweat
– Rodney Yee’s Yoga for meditation
Do Yoga Now
Do Yoga with me
Yoga for treating exhaustion and adrenal dysfunction
Yoga Gypsey Blogspot
EDS Wellness – Wellness counseling, seminars, resources and more
Ehlers-Danlos National Foundation
Hypermobility Syndromes Association
EDS Awareness – 2 free webinars per month
Our Stories of Strength – Living with Ehlers-Danlos Syndrome – anthology of over 50 stories from those living with Ehlers-Danlos Syndrome and how have found ways to persevere
Living Life to the Fullest with Ehlers-Danlos Syndrome – Book
Move your DNA – Book
Disclaimer: Yoga may work for some and not for others. This post is for your information only and should not be substituted for proper medical care, or viewed as a directive for those who have hypermobility syndromes, such as Ehlers-Danlos Syndrome. To read the full disclaimer, go here. 

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