Wednesday, June 1, 2011

Yoga for Ehlers-Danlos Syndrome

Hey, friends. Hope you are having a nice day! I am very excited about my topic today, so without further adieu...

I have shied away from doing yoga my entire life. The few times I have tried pilates I have dislocated my shoulders and that was enough to keep me far away from anything similar. I also was under the impression that yoga would be "bad" for someone with Ehlers-Danlos Syndrome, as it would stretch things too much. Doctors had cautioned me from doing anything to over-stretch my body and I assumed yoga would be suspect; that is, until I met my current yoga instructor about a year ago.


"A moving body is a healthy body. Once you stop moving, it is harder to start moving again," I can hear Kathy saying to our small class. Out of the five people in my class, I am by far the youngest, by decades - I would guess the average age to be about 70. "The goal is not to stretch ourselves into pretzels, but to be able to keep doing the things we need, like get in and out of the car." Alright! Exactly what I need!


I decided yoga was a goal of mine when my back and flank pain became so persistent that I was in tears everyday. The more I sat in bed because my back was hurting, the more my back hurt! Of course! Well, I can't help sitting in bed a lot of the time, as is the case with a body that gives out on me all of the time. However, I can try to keep in shape in any way that I can. I can't run a marathon. Most days I can barely make it up and down my street, and some days that just isn't going to happen. But - I can sit in a chair for a few minutes, stand for a few minutes (unless my POTS is bothering me) and even bend for a few minutes - and that is all I need for a complete yoga workout to stretch my body in the normal range of motion, and most importantly, work on strengthening and toning. I especially need a strong core, which will help keep my back working properly. I do not do yoga to gain flexibility, I do it to keep the mobility I have and to help relieve some mental and physical pain. I do have to say, the yoga hasn't helped my flank pain one bit, but it has helped other parts of my body feel a little better, and mentally it has helped a bunch.


When I searched for a class, I came across The Yoga Center in Reno, NV, but I am sure there are similar facilities across the country. My class, Yoga for Every Body, is an "introductory level class for those with special health concerns such as injuries, arthritis, joint replacements, difficulty getting to the floor or re-entering an exercise program. The entire class can be done in a chair.

My left hip is super flexible still, 
but my right one is in constant pain and less-flexible.
To work with this, I use a block to stretch it just a bit,
but not over-stretch it, making sure to not hurt it more.
"Hatha Yoga is a system of exercises which originated in India several thousand years ago. This class includes postures, stretching, diaphragmatic breathing and relaxation. Its purpose is to bring balance, relaxation, and calmness to the individual. Regular practice can give a person increased vitality and an ongoing sense of well being." 
 

Kathy Randolph, my instructor, is a Certified Yoga for the Special Child Practitioner. If you are interested in finding a yoga class yourself, I would highly recommend searching for someone who has been certified in this technique, or someone who does yoga for people with disabilities, or both. She has a great understanding of what special bodies can handle.


I have only attended class when I am able to drive the hour-and-a-half in the car. The rest of the time, I just practice at home. I do find that the classes keep me focused and the direction the instructor provides is extremely useful. I highly recommend attending classes at least some of the time. The type of yoga I have been practicing is Integral Yoga Hatha, and I have been learning ways to do the poses that don't overstretch my body or put stress on joints that are bothering me. The great thing about yoga is there a ton of different ways to do one pose. There are ways to do everything while sitting in a chair or sitting on the ground, so even people who are really limited in mobility can still reap the benefits. We choose the "easy" or least aggressive poses and only hold them for short periods of time. And, we all work within our abilities, each person in the class doing different versions of the poses to allow for the best workout for our own individual needs.

At home, the books I use that were recommended by Kathy are Integral Yoga Hatha by Sri Swami Satchidananda and the instruction book Integral Yoga Hatha for Beginners (Revised)
that goes along with it (purchased separately).


I have to say, I am thrilled to have taken up yoga, and I hope that this provides you all with some insight. Of course, each of us are different, but this may be beneficial to some of you. As always, I am not a doctor and I am not giving this as medical advice.

Now...back to my vacation!
xo
dani


8 comments:

jordynoleymom said...

Danielle, this was a great thing to read about. While I am finding what helps me with my pain is exercise based on a man named Pete Egoscue's chronic pain teachings and exercise programs, I can see that yoga would be similar and be beneficial to people suffering from EDS/HMS. I am going to look into those books you mention. Thanks!

Yoga Teacher Training said...

Fantastic blog!This information is clearing my mind to advantage about yoga.I will must follow your sharing.

Paige said...

Hi Danielle! I love your post, thank you so much for all your blogging and your beautiful spirit. I am an RYT200 yoga instructor with EDS III/possibly Sticklers Syndrome. Yoga has saved my life, literally. But I will save that story for my own blog I hope to start soon. Many blessings to you, and keep practicing and preaching ahimsa - the yogic practice of non-violence toward others as well as toward oneself. Yoga needs more specialists for people like us - I will look into your teacher's training program and thank you for sharing. Many blessings and namaste.

shelofa said...

I'm a 21 year old female and have relatively recently been diagnosed with both POTS and EDS, and so much of what you say sounds a lot like my life. Your symptoms list in particular was eerie to read. I still only have bad days sometimes, but I know that this will probably change. I'm currently at home while my fiance is at work because walking is incredibly painful right now. Could we possibly email or talk? My email address is shelofa@gmail.com, and my name is Shelly. Really hope to hear from you.

Gaye said...

Hello Danielle! I recently rediscovered yoga after a twelve year hiatus. The first time around instinctually I knew yoga would be a good thing for me however my class was all wrong for me I had these problems but was yet to ve dx and my instructor was very inflexible (huh no pun intended) and really nonhelpful. I injured myself and when getting no help to work thru it I left. Fastfwd twelve years by this time both my daughter and myself dx hEDS and I had knew even more this would ve right but really needed the constant guidance of an instructor. I have found her now at my localpark district again and am practicing well she watches me and modifies and encourages us to feel our own way. Ahhh. Namaste

Xan said...

Hey Danielle.
Thanks for posting this. A number of years ago, before my health was as bad as it is now, I practiced yoga daily. I've always been cautioned against returning, given the condition of my joints, but I'll definitely look into these resources. I've felt a void in my life ever since I stopped--thanks again! Hope you're well.

Makana said...

I had never thought about trying Yoga for myself and my daughters EDS. I am glad I happened to come across your page on "accident" ( I don't really believe anything happens by accident)just by being bored and googling EDS yet again for the 1000th time ;)

joe b said...

Danielle,
Thanks for your post I have been dealing with classical EDS for some time I'm 29 now and always shied away from yoga activity for fear of hurting my joints. I recently started doing some beginning yoga to help avoid the muscle strains I get from working out or playing tennis/soccer. I am encouraged that this is helping you and am hopeful it will help me if I continue the practice. I am in the reno area as well could you email me a list of places or classes to try as a beginner? Joedanbradshaw@gmail.com.
Thanks and good luck,
Joe