Get Moving! EDS and Exercise

Exercising when you have EDS is no small matter, yet building strong muscle is an integral part of getting healthy and staying healthy. 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 them. 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 exercise 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 and 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, carbohydrate 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 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 fascia 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. 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 effecting. 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.

No matter where you’re at in your fitness, follow these basic rules to help protect yourself from injury:

  • Do not stretch before exercising or do 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. Running and jumping put an incredible amount of force on your joints and 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 you grounded. 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) during exercise
  • Start your exercise regimen at a comfortable level, avoiding too many repetitions or adding weights too soon. Soreness will only deter you from exercising the next day and too much weight can endanger your joints.
  • 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.
  • Stay hydrated. This us not only important for detox, it’s a must for people with POTS and NMH.
  • Workout at least 5 times a week and only take off one day in between. We begin to lose muscle as quickly as we’ve built it, stay in a routine to stay on track and provide what your body needs to keep succeeding.
  • Fuel your body with healthy food and ample protein to help build strong muscle and consider a supplement such as d-ribose to help give you added energy and fuel to develop string muscle.
  • Add to your challenge by opting for more repetitions and variety of exercise before stepping up weight. Weightlifting can only be done safely once you’ve built enough muscle to do so. Work your way up using only your own momentum and body weight. Again, the video above provides examples of how to do this and how to use walls and doorways to build resistance safely.

Once you’ve conditioned your body to move onto more challenging exercise, these are some great, low-impact ways of upping your game:

  • Work with a trainer or physical therapist who knows EDS 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 do my own every summer at my community pool. It’s good cardio in addition to strengthening.
  • Start 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.
  • Utilize the Muldowney exercise protocol outlined in Living Life to the Fullest with EDS, designed by a physical therapist who specializes in treating zebras.
  • Check out some of the suggestions in this listing of exercises for EDS.

Cardio Exercise and EDS

Finding solutions for safe cardio is somewhat more challenging. Running is out if the question and personally, I worry about the wear and tear on joints of elliptical machines. Instead, opt for a recumbent bike, which will protect your back while cycling. Swimming is also another great option for low-impact cardio. 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.

Be sure that when getting cardio exercise, you 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 and extend your life. 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’s no excuse to not exercise, no matter your level of pain and deterioration. Safe exercise can only improve these things and there are a variety of exercises available for every level of ability. If you have concerns, consult with your specialists about what’s safest for you and your specific conditions, how to get started and/or request physical therapy to help get you started. I myself had to do a several months of therapy with the fasciablaster before I felt ready to take on more, and for the beginner, if you are following all the instructions, it can be exercise enough while having the benefit of getting the fascia back into good working order, something that makes exercise a lot easier to handle!

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.

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