Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders. There are multiple types of EDS with different severities. The most common one, and least life-threatening, is hypermobile EDS.
Read ahead to learn more about this condition, its symptoms, and treatment. We will also discuss the challenges people with EDS face and the precautions they must take when exercising.
What is Hypermobile Ehlers-Danlos Syndrome?
Ehlers-Danlos syndromes affect the connective tissues in the body. Those tissues support and provide structure to the skin, tendons, ligaments, internal organs, and bones (1). There are 13 different types of EDS, and, luckily, most of them are pretty rare.
The most common type of EDS is hypermobile (hEDS). According to a recent analysis in the UK, around 1 in 500 people would meet the criteria for hEDS (2). Moreover, the prevalence has increased steadily over the past 27 years (2).
There is currently no diagnostic test for hEDS, unlike other subtypes of Ehlers-Danlos syndrome. Doctors diagnose this condition by measuring the joint’s range of motion, looking for connective tissue defects, and analysing a person’s family history of EDS (3).
What Are the Symptoms of Hypermobile EDS?
Hypermobile EDS is characterised by problematic joints. The connective tissues in the joints are not solid. Consequently, the joints are hypermobile, meaning they are too flexible. Other common joint symptoms include (1):
- joint pain
- clicking joints
- unstable joints
- frequent dislocations
Joint problems are the main feature of hEDS, but there are other possible symptoms. Since connective tissues are found everywhere in the body, they can cause many problems when not working properly. These include: (1)
- stretchy skin
- digestive issues like constipation
- cardiovascular problems, like rapid heart rate when standing up
- organ prolapse
- stress urinary incontinence
- extreme fatigue
The severity of symptoms varies from one person to another. Some people have mild symptoms while others are severely disabled by their condition.
What Is the Treatment for Hypermobile EDS?
Unfortunately, there is no cure for hypermobile EDS. The treatment is focused on symptom control.
Physiotherapists can teach you different exercises to avoid injuries and control pain. Occupational therapists give you tips and tricks to accomplish your daily tasks. They can also help you decide if you should get any medical equipment and advise you on which one to get.
Taking care of your mental health is also very important if you have hEDS. Cognitive-behavioural therapy is usually recommended to help individuals cope better with their diagnosis (1, 4). You can also practise meditation and relaxation exercises to reduce stress and pain (4).
Over-the-counter medicines like acetaminophen and ibuprofen can help with joint pain, but you should discuss with your doctor which pain medication is best for you. Hot and cold therapy is also helpful (4).
Finally, specialists recommend that you maintain a healthy lifestyle to keep symptoms under control. Eat a healthy, well-balanced diet, avoid smoking and taking drugs, and limit your alcohol consumption to a minimum. And do not forget to stay active!
Physical Activity and Hypermobile EDS
Exercising can be pretty scary and intimidating for those with hEDS. With symptoms like joint dislocation, pain, and fatigue, it is no wonder that some are hesitant to include physical activity in their daily routine.
But did you know that staying active is part of the treatment plan for hEDS? Although physical activity has to be adapted to a person’s particular limitations, everyone with hEDS can benefit from it. Exercising helps prevent many conditions, like diabetes, obesity, hypertension, osteoporosis, and cardiovascular diseases (5). It also has benefits for mental health by reducing stress, depression, and anxiety (5).
There are four main types of exercises that you can practice. The first one is aerobic, most commonly known as cardiovascular exercise. Some examples include biking, swimming, or doing the elliptical.
Some people with hEDS can get their heart rate high without consequences. For others, however, pushing too hard can aggravate their EDS symptoms. In that case, it is better to stick with low-intensity exercises for short periods (5). It is important to avoid high-impact activities, like running, or sports with a high risk of injuries, like football (6).
The second type of exercise is strength training. This form of physical activity increases muscle strength and mass. Being stronger will help you perform your daily tasks and improve your quality of life.
People with hEDS should avoid intense heavy lifting because they have a higher risk of injuries (6). Pilates, yoga, and bodyweight exercises are all beneficial (5).
It is also important for people with hEDS to work on their flexibility. Yes, you can be stiff even if you are hypermobile! However, follow your trainer’s instructions to avoid overstretching and protect your joints.
Finally, include balance exercises in your fitness routine. A good balance is a must for people with hEDS because it reduces the risk of falls and injuries (7). T’ai Chi is an excellent way to improve your balance safely (5, 7). Standing on one foot, walking heel to toe, and using a stability ball are also helpful (7).
Exercising safely with hEDS
The most important thing to exercise safely with hEDS is to work with qualified professionals. You want to hire someone who has expertise working with individuals with EDS and knows how to help you reach your goals safely.
And that’s where we come in! At TG Fitness, we specialise in personal training for people with disabilities, including individuals with hEDS. We will perform an in-depth assessment of your condition and personal limitations. Following our discussion, we will create a fitness plan that is safe and effective for you.
To our clients’ delight, we offer online training sessions. This means you get to work out in the comfort of your own home. You also save time since you do not have to commute to a gym, allowing you to make the most out of your workout.
We look forward to working with you!