This post contains affiliate links from which I may make a commission through purchases at no extra cost to you. This post originally ran in May of 2017. I decided to update it with additional information and repost it so our newer followers have a greater chance of reading it.
Exercising when you have EDS is no small matter, yet building strong muscle is an integral part of ensuring the health of our body and decreasing the musculoskeletal symptoms associated with hypermobility. Since a primary feature of Ehlers-Danlos Syndrome is dysfunctional collagen that causes our connective tissue to stretch and tear, it’s essential that we protect our joints while undertaking any sort of movement.
How do you exercise and still protect your joints? How do you get started after months or even years of de-conditioning due to illness? I’ve been researching these topics to try to come up with my own exercise regimen and the information I’ve found takes a lot of the guess work out of how to treat your body to the benefits of movement and stay safe.
Why Exercise is Important
First, it’s important to understand why exercise is so critical to keeping the human body in optimal shape. Researchers have come a long way on this subject in recent years, thanks to a group of Harvard scientists who discovered the existence of an “exercise hormone” dubbed Irisin in 2012. Irisin is present in all humans, but when you exercise, you produce much more Irisin.
Irisin has many functions. Irisin helps the body convert white fat to brown fat. Unlike white fat which simply gets stored in the body, brown fat is an active fat burner and energy producer, much like muscle, according to Dr. Joseph Mercola. He also adds that it’s great for heart health and may also help with endocrine dysfunction, as low Irisin levels are found regularly in women with PCOS. It also helps slow the aging process, induces greater insulin resistance, and helps to grow new neurons, improving cognitive function, according to Psychology Today.
Amazingly, once you begin exercising and maintain a healthy weight, higher levels of Irisin actually protect the body from weight gain, as well. It’s also important in regulating stress and balancing our hormones over all. These are all things the spoonie population can benefit from, as we commonly suffer from fatigue, hormone imbalances, FODMAP intolerance or diabetes, and cognitive dysfunction. Weight can often be an issue, as well.
But what’s also important is the mechanical function of growing strong, healthy muscle to shore up our loose tendons and ligaments. Building strong muscles helps to stabilize joints and keep us from subluxating and dislocating our joints, causing tears to these materials made fragile by our condition.
Additionally, exercise can have the added benefit of reducing our pain. Somatic exercise has been found to be very helpful in this goal and the more you exercise, the more benefits you’ll experience.
How to Exercise Safely
If you’ve long been bedbound or experienced serious muscle de-conditioning, the best thing you can do is start slow. Consider beginning with clinical somatics, also known as Hannah somatics. This program is great if you’re still struggling with pain and autonomic issues that have made exercise seem impossible. Clinical Somatics can provide you with safe exercises designed to decrease pain and regulate the autonomic system; making it great for zebras and a perfect way to get started with exercising.
Another great way to get started is by performing your own myofascial therapy. Fascia is another form of connective tissue that gets ignored all too often, but is often as dysfunctional in EDS as any other connective tissue in our bodies. Fascia is an interconnected web that runs throughout your body, wrapping muscles, organs and bone.
When something is injured or unstable, fascia tightens, attempting to help. The unintended consequence is that sometimes it gets so tight that it can literally choke off the blood supply and nerve flow to whatever part of the body its affecting. This is where fascia therapy like fasciablasting is integral to getting you moving again and it has as many powerful benefits as exercise itself. See more information on fascia therapy here.
One of the best resources I found for exercise for all levels in EDS comes from a presentation given by a physical therapist for the Ehlers-Danlos Society called “Intelligent Exercise – How You Can Take Control with EDS.” It not only gives a lot of practical advice on what to avoid along with safe exercises to help you get started, it also explains why we need to take great care while doing exercise and why it’s important to still do it.
It’s a long presentation, but well worth the watch, especially if you’re just starting out and need extra protection to safely build up long unused muscle throughout. It provides much the same advice as other presentations and articles I’ve seen on how to exercise safely with EDS and gives you exercise examples that work gently and subtly to get you started. This is where I myself have started.
Another great resource for starting a movement program with hypermobility is the book ‘Hypermobility Without Tears’ by Jeannie Di Bon. Jeannie has worked with hypermobile patients for years and has perfected a great program to help you get started, improve balance and proprioception and support our joints. You can read my full review of this book for more detail.
Another great book on physical therapy strategies and advice comes from Kevin Muldowney, a physical therapist who started helping people with EDS by treating his own wife and daughter. Unfortunately, it’s a pricey book and I haven’t read it, but I’ve heard great things about from others with EDS. The book is called ‘Living Life to the Fullest with Ehlers-Danlos Syndrome’ and you can get it at Amazon or through Outskirts Press.
The Dos and Don’ts of Movement with Hypermobility
Of course you don’t have to buy anything to start exercising safely despite joint hypermobility. Here are some basic rules to follow to help protect yourself from injury and choose the right kind of exercise to perform:
No matter where you’re at in your fitness, follow these basic rules to help protect yourself from injury:
- Do not stretch before or after exercising. Avoid exercise that focuses on stretching, such as yoga. Stretching actually loosens the tendons and ligaments, not the muscle! For someone with EDS, it’s more likely to cause a tear or dislocation.
- Avoid high impact exercise such as jogging and things that require jumping, such as jumping jacks, basketball and tennis. Running and jumping put an incredible amount of force on your joints and can easily cause subluxations, dislocations and jams. Our joints feel the force of five times our body weight when doing these activities and are hard on even normal, healthy joints.
- Avoid open circuit exercise, or excise with large movements that don’t keep at least two limbs in contact with the ground or a stable surface.
- Opt for closed circuit exercise, where you have at least two points of contact with the ground or equipment at all times, instead.
- Protect joints by never overextending them during exercise (comparable to what normal, healthy range of motion indicates rather than what you can actually do) during exercise
- Start your exercise regimen at a comfortable level, avoiding too many repetitions or adding weight too soon. Soreness will only deter you from exercising the next day and too much weight can endanger your joints. Working at your level can also help avoid exercise intolerance associated with MCAS and dysautonomia.
- Protect your neck while exercising. Avoid putting your hands behind your head and always keep your head in a neutral position.
- Do exercise your neck. Head and neck problems are prevalent in EDS and strengthening the muscles that support it is a great idea. The video above will show you how to do so safely and easily, but working with a physical therapist to develop a personalized plan to target your issues is by far better. A PT can help ensure the movement you’re doing is safe for your particular spinal issues.
- Stay hydrated. This is not only important for detox, it’s a must for people with POTS, NMH and other forms of dysautonomia. ORS is a great way to stay hydrated and ensure your body has the electrolytes needed to stay that way.
- Workout at least every other day. We begin to lose muscle as quickly as we’ve built it and taking more time off will only impede your progress. Developing a routine will help keep you on track and provide what your body needs to keep succeeding.
- Fuel your body with clean, healthy food and ample protein to help build strong muscle. Consider supplying a little extra muscle energy by taking d-ribose, which can also help with muscle spasms.
- Add to your challenge by opting for more repetitions and variety of exercise before stepping up weight. Weightlifting can only be done safely with hypermobility by ensuring you step up very slowly, giving muscle enough time to grow in order to meet the added demand.
- Starting by using your own momentum and body weight resistance is ideal if deconditioned. Again, the video above provides examples of how to do this and how to use walls and doorways to build resistance safely. Somatics is also an excellent place to start. The Zebra Pit also has a library of exercise tutorials to help you do specific strengthening moves using the right form.
- If you have POTS, NMH or another form of dysautonomia, check out Exercise: The Best Remedy for POTS
Once you’ve conditioned your body to move onto more challenging exercise, these are some great, low-impact ways of continuing to build muscle:
- Work with a trainer or physical therapist who is knowledgeable of the challenges of hypermobility and can help you design a workout regimen specifically for your needs.
- Take a water aerobics class or make your own, a very low impact, but good resistance exercise that can be adapted by the user. I used to do my own every summer at my community pool until MCAS symptoms put me off the practice. It’s good cardio in addition to strengthening.
- Try T-tap, designed to be low-impact and deceptively simple, this workout program for all levels of fitness will give you a full body workout while protecting your joints and allowing you to go at your own pace. Their website even provides several exercises you can try before you buy the DVD’s, so you’ll know if you can handle it.
- Join a pilates class. Pilates focuses on building strength through a variety of techniques while staying in range of motion.
Cardio Exercise and EDS
Finding solutions for safe cardio is somewhat more challenging. Running is really out of the question for many of us. Personally, I worry about the wear and tear on joints of elliptical machines, too. Instead, opt for a recumbent bike, which will protect your back while cycling. Swimming is also another great option for low-impact cardio, as well. Unfortunately, these are the only recommendations I’ve seen.
Playing sports should generally be avoided, due to the need in most to run, jump and make forceful contact, but of course if you can modify something to make it safe and you really enjoy doing it, then go for it. The only limit is your imagination and the cooperation of those you do it with. Perhaps you love basketball. You can still walk, dribble and take shots, but running, jumping and jostling between players should definitely be avoided.
When getting cardio exercise, it’s important to incorporate high intensity interval training, or periods where you go really fast with periods of slower, easier exercise. This has been shown in studies to be the most optimal form of exercise for cardio health and can even prevent common diseases associated with aging while extending life expectancy. The older you get, the more important interval training becomes. It also helps you burn calories more efficiently and helps your body handle rapid change better by helping to regulate the autonomic system.
There are really very few excuses to skip exercise altogether. The benefits of safe movement can only improve the chronic pain and other musculoskeletal symptoms and there are a variety of exercises available for every level of ability.
Before adopting any new fitness programs, consult with your care team about what’s safest for you and your specific conditions. They can usually offer some tips on how to get started and may request you be evaluated by a physical therapist to help get you started.
If your pain levels and musculoskeletal symptoms make it feel like it’s too much to get started, a myofascial therapy could be a great way to resolve some of these issues. If you do your own with a self-directed tool like the FasciaBlaster, you could even begin to benefit from the movement necessary to complete the therapy. For more information, check out my posts on these self-use tools:
Exercise is essential to keeping any body healthy, but for zebras, it’s especially important in shoring up our bendy joints with added muscle, helping to regulate our autonomic system, reducing our pain and stress and helping us to create more energy.