Answers to questions about exercise and EDS (post 3 of 3 post series)

This is post 3 of a 3 post series on answers to questions about exercise and EDS; however, this post includes various helpful resources & links pertaining to physical therapy, mainstream fitness programs and other related information for those living with EDS. To read post 1 out of this 3 post series, go here. To read post 2, go here. 

Popular workouts & therapies: 
– The Melt Method – involves light exercise with myofascial release-type therapy for chronic pain.
– The Bowen Technique – a technique for pain management & restoring movement by Isobel Knight.
**(YouTube video – An introduction to the Bowen Technique)
– Restorative Exercise – by Kathy Bowman (Natural Movement Training or NMT)
– T-Tapp – a series of sequential movements to put the body in proper alignment.  Many with chronic conditions have found success with T-Tapp.  To read more, click here.
– Yoga – there are several different types of yoga ranging from gentle to more intense and rigorous. Yoga can be very therapeutic and helps build strength. The practice of yoga also overlaps with meditation and mindfulness. It’s important to learn how to use yoga to help you strengthen your joints and not hyperextend, versus push past the normal range of motion just because you can. Finding an instructor who is familiar with how to instruct the practice of yoga to hypermobile clients is advised.

 
– Pilates – defined by Wikipedia, as the “art of controlled movements, which should look and feel like a workout (not a therapy) when properly manifested. If practiced with consistency, pilates improves flexibility, builds strength and develops control and endurance in the whole human body.[4] It puts emphasis on alignment, breathing, developing

 
– Mindfulness  – as described by Wikipedia, “is intentional, accepting and non-judgmental focus of one’s attention on the emotions, thoughts and sensations occurring in the present moment.[1]” Mindfulness exercises include: meditation, deep breathing, listening to music, cleaning house, observing your thoughts, and creating your exercise that helps you feel less stressed and more grounded.

– Barre – Barre classes are described as using a “combination of postures inspired by ballet and other disciplines like yoga and Pilates. The barre is used as a prop to balance while doing exercises that focus on isometric strength training (holding your body still while you contract a particular set of muscles) combined with high reps of small range-of-motion movements.” Also, don’t be surprised if your class incorporates light handheld weights to bring the burn during all those reps, as well as mats for targeted core work” by Fitness Magazine.

– Cycling and Indoor Spinning – another favorite workout of mine; however, not all indoor cycling studios offer the same type of class, and all are very different from cycling outside. Either way, cycling indoors or outdoors is a fantastic form of exercise that is low-impact, joint protective, often works your core and upper body as well, and many indoor studios now incorporate weights and even a meditative portion – ie. the “Zen” song like the cycling studio that I go to does.  Specifically, Zengo Cycle’s classes are described as a “full-body, cycle-centric workout for your body and mind that will Rock Your Day. With the tunes rocking and the lights down low, your legs are always pedaling, always engaged, while your upper body moves to the beat, keeping the core, obliques, and triceps tight.” If interested, you can read my story about climbing out of my last EDS Spiral, here.

– PIYO by Chalene Johnson & Beach Body – “PiYo combines the muscle-sculpting, core-firming benefits of Pilates with the strength and flexibility advantages of yoga.”  Truth be told, PIYO is one of my favorite workouts and was the first program I ever participated in. No, I am not a Beach Body coach, but I did PIYO over summer of 2014 when it first came out and loved it. I loved doing it every day and each workout is different. If you follow the program, it progresses as you get stronger. My wrists took a bit to get used to doing a yoga/pilates type workout each day, but they got stronger and now I can do handstands!
– Swimming – low impact, works nearly every muscle group in your body and something that anyone can participate in.
 
Links & resources: 
– Answers to questions about EDS and exercise – post 1 of 3
– Answers to questions about EDS and exercise – post 2 of 3
– PT & Exercise Resources (see additional links from this page on website)
– Barre 3 – online barre videos
– Pilates by Lisa – online Pilates videos
– Pilates Anytime – online Pilates videos
– Power Yoga – online yoga videos by Bryan Kest
– Yoga for Meditation – meditative gentle yoga to do before going to bed
– DoYogWithMe.com – Free Yoga videos
– Outside Online.com – Natural Born Leaders (natural movement training)
– Dr. Lavallee’s Core Strengthening Exercises
– Proper Head & Neck alignment by DoYogaWithMe.com
– Exercise/PT Tips & Video Clips (not all are uploaded just yet, so you may need to refer to Instagram or Tumblr for certain things – ie. shoulder exercises)
– PIYO workout program
Webinars:
– Dr. Lavallee’s Webinar “Exercise is Medicine for Ehlers-Danlos.”
– Jan Dommerholt’s Webinar “Physical Therapy for Ehlers-Danlos.”
– Webinar by EDNF on Bracing and Support for stability & pain.
Presentations: 
– 2015 EDNF Conference “How physical therapy can decrease you pain while living with EDS.”
– 2015 EDNF Conference “Less is More – Treating EDS with active psychotherapy and guided meditation.”
– 2015 EDNF Conference “Ehlers-Danlos, Exercise and Rehabilitation.”
– EDS UK’s one-day conference presentation on “EDS & exercise.”
– Jan Dommerholt’s presentation from the 2014 EDNF Physicians Conference: “Physical Therapy in the management of Ehlers-Danlos.”
– 2014 EDNF Conference: PT for EDS “Restorative Rehabilitation a holistic whole-body approach for EDS.”
– EDNF Conference “Compression supports for stability” presentation.
– EDNF Conference “Foot & Ankle Issues with EDS.”
– EDNF Conference “Pain Management for EDS through manual PT approach.”
– EDNF Conference “Hip & Shoulder Pointers.”
– EDNF Conference “SI joint dysfunction and EDS.”
– EDNF Conference “Shoulder Instability & EDS.”
– EDNF Conference “Tai Chi for stability and strength.”
– EDNF Conference “Hypermobility & gaining function and strength.”
– EDNF Conference “Pilates – what can it offer the EDS patient.”

Articles:
– Blog post- Yoga and Hypermobility
– Blog post – [Solidcore] and the hypermobile client
– Blog post – Hypermobility meets the megaformer
– Blog post: Moving Naturally with Hypermobility seminar summary (with presentation links)
– Blog post: The EDS Spiral
– Blog post: EDS on a cellular level and why that’s essential to moving your DNA
– Blog post: My butt is flat! Why sitting too much can cause chronic pain, muscle atrophy, and problems moving around
– Blog post: Exercise is medicine webinar summary
– Blog post: Top 10 Nutrition tips for living well with Ehlers-Danlos Syndrome
– Blog post: Life as a bobble head – Neurosurgery and the hypermobile patient
– Blog post/page: I have EDS – now what? 
– Blog post: The Five best tips for living with Ehlers-Danlos Syndrome
– Blog post: Summary of recent updates on the management of Ehlers-Danlos Syndrome – Hypermobility type
– 12 Steps to stronger more stable shoulders with hypermobility by Katy Bowman
– Katy Bowman’s blog post on hypermobility (she omits the s in EDS and the s at the end of Ehlers-Danlos syndromes and hypermobility syndromes, but the information is good)
– Teaching Yoga to People with Hypermobility
– How yoga helped one woman’s struggle with chronic pain from Ehlers-Danlos Syndrome
– Prolotherapy in Connective Tissue Disorders
– Dry Needling Therapy
– Chronic Fatigue Syndrome & benefits of exercise
Books: 
– Our Stories of Strength – Living with Ehlers-Danlos Syndrome
– Living life to the fullest with Ehlers-Danlos Syndrome
– Move your DNA by Katy Bowman
– Alignment Matters by Katy Bowman
– Isobel Knight is a medical writer, who has written on hypermobility & The Bowen Technique. Click here to read about her books.
Events:
– Wellapalooza – Integrative Health and Wellness Conferences
– Moving Naturally with Hypermobility seminars
Questions?
– Send me an email! kendra@edswellness.co
– Find me! Facebook, Twitter, Tumblr, Instagram & Pinterest
– Health Coaching via EDS Wellness
– Speaking, collaboration and consulting on hypermobility seminars, conferences, and other education needs.
What’s the bottom line?
You have the make the best decision for you. Do not allow the limitations of others put parameters around what you do or do not do. There is no “rule” for exercise and EDS, but there are some guidelines. People may think there are rules because of something they have heard from someone else or their experience, but there has not been a definitive blanket statement published that everyone with EDS needs to follow concerning exercise and physical therapy. There are guidelines based on knowing what EDS is and how it can affect our bodies, but for every one person that can’t, there are five individuals who can.
While I cannot tell people how to find the motivation to exercise or do physical therapy, I can provide tips on how I find the strength to push through and offer a few recommendations on how to adequately and safely exercise with EDS. We all have different cases of EDS, along with various other issues (or not), face different challenges, motivations, and financial constraints. What is most important is to find what helps you build strength, keeps you motivated, and makes you feel good. It’s not rocket science or a magic pill, and so many have made great strides when they focus on what they can do, versus what they cannot. Error on the side of caution with who and where you receive your information from and find what works for you, even if it seems a bit different from the norm.
Finally, in the words of Dr. Lavallee, “Just because you have EDS, doesn’t mean you can’t do amazing things with your body. You can do just about anything that you want to do; you just have to have the mind power.” A MUST listen for everyone with EDS!
To learn more on the some of the most up-to-date information on Exercise & PT with EDS, you click the link and listen to the webinar “Exercise is Medicine for Ehlers-Danlos” by Dr. Lavallee and sponsored by EDS Awareness.

Disclaimer: This information has been provided to help answer some common questions that often come up when discussing exercise and EDS. It is not a substitute for medical advice, and you have to make the best decision for your particular situation. All information that I have provided is based on recommendations given through various presentations I’ve seen, and conversations I’ve had with many of those who help diagnose and treat us. Most of the information provided is the same information I would include in my response when responding to an email for the EDNF helpline. When pertinent, I also pull from personal experience as someone who with lives EDS, has consistently worked out since I was an 11yo, my degree in public health/exercise science and my job in the medical field. Please read full disclaimer here.