How to Exercise With Ehlers-Danlos Syndrome, According to Physical Therapists

If you’ve been diagnosed with Ehlers-Danlos Syndrome (EDS), you may have some questions about how it can affect your movement and exercise. Since EDS can cause joints to become hypermobile and flexible, it’s natural to be cautious. “It’s common for people with Ehlers-Danlos Syndrome to be concerned about injuring their joints when exercising,” says Kristin Vinci, PT, DPT, a physical therapist at Hinge Health. 

Ehlers-Danlos Syndrome is an umbrella term for a group of 14 different conditions that affect connective tissue. Symptoms and treatment can vary by each type, but one thing most types of EDS have in common is joint hypermobility. This means that your joints are able to move through a greater range of motion than is expected. That said, EDS goes beyond just being overly flexible or, say, double jointed. The level of hypermobility seen with EDS is more serious and can increase your risk of dislocations, sprains, and other injuries. 

We know that might sound alarming, but it is possible to exercise safely with this condition, especially when you work with a doctor or other providers, like a physical therapist, for guidance. It’s important for people with Ehlers-Danlos Syndrome to engage in physical activity at a pace that works for them, and to do targeted exercises that improve symptoms without posing additional risk. 

Read on to learn more about Ehlers-Danlos Syndrome and how to incorporate exercise into your treatment plan, according to our Hinge Health physical therapists. 

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of inherited conditions that affects the production and function of collagen, a protein required to form healthy connective tissue. Abnormal collagen can cause bodily tissues like ligaments and tendons to become overly elastic, which can result in a variety of symptoms, depending on what type of EDS you have and what area of the body is affected. 

Among the many types of EDS, hypermobile EDS (hEDS) is the most common and is classified as a “hypermobility spectrum disorder,” or HSD. hEDS is what we’ll cover in this article. 

Symptoms of hEDS can include joint hypermobility and instability — for example, someone’s elbow might extend farther than normal when they straighten their arm or their shoulder may dislocate more frequently. People with hEDS often experience chronic pain and fatigue, too. Still, you can continue doing the activities you love with a few modifications that can help you feel safe and confident. 

Ehlers-Danlos Syndrome: A Hinge Health Perspective

While lifestyle changes are often recommended for those with hypermobile Ehlers-Danlos Syndrome, it can be understandably difficult to build an exercise routine to manage symptoms if you’re fatigued, in pain, or worried about injuring yourself. 

While your concerns are completely valid, Dr. Vinci stresses that exercise is a front-line strategy for managing hEDS. “It can be scary to exercise due to concerns about injury or depleting your energy, but movement is actually one of the best ways to manage your symptoms,” she says. 

Of course, it’s important to tailor your movement to your needs. Finding your movement sweet spot is paramount if you have hEDS. You’ll want to pace yourself and take breaks as necessary, but also know when to push yourself past a bit of discomfort. Each day may feel different, so give yourself grace and do what you can. Targeted exercises can help reduce risks of injury during exercise while also ensuring you actually see improvement in your hEDS symptoms over time. 

How Exercise Helps Ehlers-Danlos Syndrome

Hypermobile Ehlers-Danlos Syndrome affects the integrity of the tissues that keep your joints stable. Exercise, Dr. Vinci explains, is important because it strengthens your connective tissue and muscles so they can better protect your joints. “We have to build strength in the muscles around joints to not only make your joints more stable, but also to make you more comfortable and confident as you engage in everyday activities,” says Dr. Vinci. 

Exercise can also help improve your energy levels if hEDS causes you to feel fatigued. It may seem counterintuitive that movement would help you feel less exhausted, but Dr. Vinci says slowly building up your endurance through exercise can help improve your energy in the long run. 

Physical activity has also been shown in studies to improve mental health, which is an important component of well-being, especially among those living with chronic conditions like Ehlers-Danlos. Incorporating movement into your routine can support you emotionally by helping manage your symptoms, but also by releasing feel-good chemicals known to improve mood. 

Exercising with Ehlers-Danlos Syndrome

With any chronic illness, especially ones that can impact your joint health, it’s important to tailor your physical activity to exercises that improve your symptoms and reduce the risk of injury. Start by understanding what your body can tolerate and build from there.

You can talk to a physical therapist about ways to protect your joints and avoid overextending them, so you can safely engage in activities you enjoy. You can see a physical therapist in person or use a program like Hinge Health to access a PT via telehealth/video visit.

Strength Training

According to Dr. Vinci, strength training exercises — also called resistance training — are among the most important for hEDS. Individuals with hEDS are prone to lower levels of muscle strength and endurance. Building strength can help keep your joints stable, decreasing the risk of injury while still improving your daily functioning. 

Strength training can include using resistance bands, light weights, or even your own body weight, as tolerated. Beginner mat pilates may also be an option for some, but make sure to talk to your PT and instructor to ensure it’s right for you and get guidance on making any necessary modifications. Finding your movement sweet spot is key for preventing pain flare-ups while strength training. Keep a low baseline of reps to start, then slowly build from there.

Aerobic Exercise

Aerobic exercise (also called cardio), or exercise that increases your heart rate, can also help hEDS. Along with building muscle strength, aerobic exercise can improve your overall endurance, which Dr. Vinci says can help with fatigue. That said, if you also have other issues that contribute to dizziness or lightheadedness upon standing, aerobic exercise may not be right for you until those symptoms are more well controlled. 

Aerobic exercise can include cardio like walking, swimming, water walking, or biking, but you should work with a physical therapist to determine the safest exercises for your unique situation. Always listen to your body and make sure you can pass the "talk test" (which means you’re able to hold a conversation while exercising), so you’re not going past a moderate level of intensity.

Stretching

Stretching can be tricky with hEDS because you don’t want to overstretch an already hypermobile joint. Targeted stretching is allowable to control tightness and pain, when necessary. Limiting intensity and duration can help relieve tension while supporting the joint as can following up any stretching with stabilization and strengthening exercises. A physical therapist can provide guidance on how to safely stretch.  

Balance Training

It may also be helpful to incorporate balance exercises into your routine. “Balance is important for everyone, but we want to minimize fall risk in people with hEDS, who may have greater risk of injury,” says Dr. Vinci. 

Exercising with Ehlers-Danlos: Tips When Getting Started

Whether you’re starting an exercise program for the first time or you’ve been prioritizing physical activity for a while, there are a few precautions to consider if you have hEDS. 

Dr. Vinci emphasizes the importance of progression, or working your way up to higher levels of intensity over time. Start with moderate, controlled resistance training to avoid injuries related to range of motion and flexibility. “The amount of resistance you add should be small at first, so you can control the movement,” she says. In other words: Pace, don’t race. Start small and slowly build while listening to your body.

Knowing when to take a break is also important in preventing injury and managing fatigue. “You should feel a little bit of work in the muscles, but not a significant increase in pain or discomfort,” says Dr. Vinci. 

Before starting a new sport or workout or making a change in activity level, talk to your care team to create a plan that is right for you and to discuss any needed modifications, like using a brace or heart rate monitor.

Staying Safe with Dizziness

In many cases, hEDS also shows up alongside other medical conditions. One of them is called POTS, or postural orthostatic tachycardia syndrome, which can cause dizziness and fainting with exertion or even a change in position (like going from lying down to sitting up). This can make exercise more challenging, but it’s still possible to engage in safe physical activity with both hEDS and POTS. 

People with hEDS and POTS need to prioritize consistency in exercise, says Dr. Vinci, since lack of movement may make symptoms worse. Working with a physical therapist who can guide you through the best protocol for you can help you feel safe and confident as you exercise and build strength. 

PT Tip: Move Mindfully

If you have hEDS, you may feel uncomfortable with the prospect of adding exercise to your routine. That’s understandable. Taking steps to shift your mindset about movement can play a big role in improving your daily function. “There are safe ways to exercise with this condition that can actually help you manage and reduce symptoms,” says Dr. Vinci. If you’re concerned about safety at any point, you can always talk to a physical therapist or another healthcare provider. 

How Hinge Health Can Help You 

If you have joint or muscle pain that makes it hard to move, you can get the relief you’ve been looking for with Hinge Health’s online exercise therapy program.

The best part: You don’t have to leave your home because our program is digital. That means you can easily get the care you need through our app, when and where it works for you.

Through our program, you’ll have access to therapeutic exercises and stretches for your condition. Additionally, you’ll have a personal care team to guide, support, and tailor our program to you.

See if you qualify for Hinge Health and confirm free coverage through your employer or benefit plan here.

This article and its contents are provided for educational and informational purposes only and do not constitute medical advice or professional services specific to you or your medical condition.

References

1. Buryk-Iggers, S., Mittal, N., Santa Mina, D., Adams, S. C., Englesakis, M., Rachinsky, M., Lopez-Hernandez, L., Hussey, L., McGillis, L., McLean, L., Laflamme, C., Rozenberg, D., & Clarke, H. (2022). Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review. Archives of Rehabilitation Research and Clinical Translation, 4(2), 100189. doi:10.1016/j.arrct.2022.100189

2. Ehlers-Danlos Syndrome. (2022, July 29). National Library of Medicine. Retrieved from https://medlineplus.gov/genetics/condition/ehlers-danlos-syndrome/

3. Liaghat, B., Skou, S.T., Søndergaard, J, et al. (2020). A randomised controlled trial of heavy shoulder strengthening exercise in patients with hypermobility spectrum disorder or hypermobile Ehlers-Danlos syndrome and long-lasting shoulder complaints: study