The term, “double-jointed,” is commonly associated with gymnasts or dancers and frequently praised in both sports. But what happens when being double-jointed or hypermobile is not a desired trait?
Hypermobility is one symptom of Ehlers-Danlos Syndrome, which affects 1 in 5,000 people, according to Medlineplus.gov. And, unfortunately, this syndrome can affect anyone regardless of age, gender, race, or ethnic background.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is a condition that affects the connective tissue, a substance made from cells, fiber, and collagen. Connective tissues are responsible for supporting and protecting the skin, muscles, bones, organs, and the vascular supply in our body.
The main cause of EDS is a genetic defect that causes abnormal collagen production. So far, thirteen EDS subtypes have been identified and are listed below. Each subtype has a set of criteria that lead to a diagnosis. Note that it is extremely rare to have more than one subtype of EDS.
- Classical
- Classical-like
- Cardiac-valvular
- Vascular
- Hypermobile
- Arthrochalasia
- Dermatosparaxis
- Kyphoscoliotic
- Brittle Cornea Syndrome
- Spondylodysplastic
- Musculocontractural
- Myopathic
- Periodontal
So, how do you know which type of EDS that you have? Diagnosis of most types of EDS is completed by a series of tests like genetic testing, skin biopsy, and an echocardiogram (with the exception of Hypermobile EDS). Genetic testing looks at the blood to detect abnormalities in certain genes. A skin biopsy might be taken to determine if defects in collagen production are present. Lastly, abnormalities of the heart are viewed through an echocardiogram, in which sound waves are used to form an image of the moving heart.
Hypermobile EDS is diagnosed by looking at joint mobility, defects in the connective tissue, family history, and/or a history of musculoskeletal problems.
Ehlers-Danlos Syndrome Symptoms
One of the main EDS symptoms is joint hypermobility, meaning that you have very flexible joints, commonly referred to as being “double-jointed.” Other common EDS symptoms are stretchy skin or skin that bruises easily. Many of the subtypes mentioned above can share the same signs and symptoms. For now, let’s look at the signs and symptoms of the two most common forms of EDS: Hypermobile and Classical.
- Common signs and symptoms of Hypermobile EDS:
- Joint hypermobility
- Unstable joints
- Muscle pain
- Fatigue
- Digestive problems
- Bruise easily
- Dizziness upon standing up quickly
- Heart valve and organ prolapse
- Bladder control issues
- Common signs and symptoms of Classical EDS:
- Hypermobility
- Elastic skin
- Fragile skin
- Skin folds on eyes
- Muscle pain
- Muscle fatigue
- Benign growths
- Slow-healing wounds
- Hernias and organ prolapse
Treatment for Ehlers-Danlos Syndrome
Treatments will vary, depending on the symptoms related to your particular subtype of EDS. At this time, there is no cure for EDS; however, some treatments can help alleviate the pain and discomfort brought on by EDS. Your medical team may recommend:
1. Physical Therapy - A physical therapist can evaluate and treat muscle and joint instability associated with EDS by focusing on strengthening muscles which can decrease pain and avoid injuries.
2. Medication - Medication might be prescribed for pain relief or problems regulating blood pressure. Blood pressure issues are usually present in those who have vascular involvement related to EDS.
3. Surgery - Often seen as a last resort, surgery is an option to improve the stability of the joints. Be aware that any surgical procedure is risky, and those with vascular involvement and poor healing are more prone to longer recovery times.
How to Exercise When You Have Ehlers-Danlos Syndrome
Although there can be challenges, people who have been diagnosed with EDS can (and should) find ways to exercise every day. If you’ve been newly diagnosed with EDS and unsure how to begin exercising, always obtain clearance from your physician. Depending on your joint structure, you may need bracing or other equipment in order to exercise safely.
Follow these general guidelines to protect your joints and avert injury:
- Avoid: contact sports, lifting heavy weights/objects without proper strength progression
- Practice: slow and controlled movements, begin with light resistance, and wear your assistive/orthotic devices (if appropriate)
You’ll be relieved to know that you can still stretch, do cardio, and lift if you have been diagnosed with EDS. Follow along as we break down exercise recommendations for each workout component below.
1. Stretching
It seems counter-intuitive to stretch when you have EDS due to hypermobility, but hypermobility affects the joints whereas stretching targets the muscles. Addressing tight muscles can decrease soreness and pain associated with EDS. Consider restorative yoga, which is a relaxed practice where each pose is held for a longer period of time along with the use of blocks, blankets, or bolsters. You can use our filter function to find all of our stretching and flexibility workouts.
2. Aerobic exercise
Increasing aerobic capacity is strongly recommended for people with EDS. It can decrease fatigue, improve endurance, and fight off depressive-like symptoms. Some of the easiest ways to incorporate cardiovascular exercise into your busy lifestyle are by walking, taking the stairs, or swimming. Always begin with a manageable time and increase as your endurance improves. On days when you experience flare-ups, it’s okay to decrease your workout intensity, just as long as you continue to move.
3. Strength exercise
Improving muscle strength will combat your risk for injuries and future disability. As your strength improves, you will begin to see your progress affect other aspects of your life, like your ability to complete household chores, being more active outdoors, and generally being more functionally fit.
Begin any strength program by using your body weight as resistance. Then, progress to using light resistance while using weights or bands. For people with EDS, it is crucial to progress slowly to protect your joints from further damage. Try Pilates, especially if you have a weak core and need stability exercises. You can find dozens of Pilates-inspired workouts right here on our website.
Those with EDS should focus on improving joint stability by strengthening the muscles around a joint. There are two types of muscles that are active during any movement: stabilizers and movers. Stabilizer muscles are what help support your body, while movers are responsible for moving your limbs. Having strong stabilizer muscles is important, especially in people with EDS, because this will help further protect the joints.
Focus on increasing strength and stability in the rotator cuff (shoulder), hip, and spine. You can also try some balance exercises to improve stability and proprioception in the lower body.
Always be aware of the speed of your movements. “Slow and controlled” is more than a workout tip; it actually strengthens your tendons and prevents injury when you move in a slow and controlled manner.
Living with EDS
Since there are many subtypes of EDS, each person will experience highly individualized symptoms. Learn how to manage your symptoms with movement, strength training, and breathing exercises to reduce stress and anxiety associated with chronic pain. If you need more help determining which exercises and activities are best for you, then visit a physical therapist who can develop a personalized program for your needs.
Remember, gradually increasing activity and strengthening will decrease the risk of injury and dislocations, alleviate pain, and improve your energy levels. This will allow you to participate in activities that were more difficult to do prior to exercising and improve your quality of life while living with EDS.
The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.
Written for Fitness Blender by Kayla C, PT, DPT
Board-Certified Neurological Clinical Specialist