Ehlers Danlos Syndromes are genetic conditions that cause faulty production of collagens. Collagen is found throughout the body in skin, bone, blood vessels, internal organs, ligaments, tendons, cartilage and even parts of teeth. With connective tissue disorders (like EDS) the faulty collagen leads to issues with one or more of these body parts.
There are several forms of EDS, the most common is Hypermobility Type which affects approximately 1 in 5000 people. All types of EDS share some common symptoms such as hypermobile joints, soft and delicate skin, and generalised weakness of the body’s tissues that can lead to easy bruising, hernias, stretchy blood vessels and heart valve abnormalities. No two EDSers are the same and each person will present differently. Some people have primarily joint problems while others have mainly gastrointestinal issues. The severity of the condition varies widely from person to person. Since there is no ‘cure’ for EDS many interventions are aimed at managing specific symptoms.
Currently, there are no tests to confirm whether someone has Hypermobile EDS. The diagnosis is made based on a person’s medical history and a physical examination using the Brighton Criteria. Other kinds of EDS can be determined through genetic testing.
Symptoms of EDS
Probably the most common symptom is Joint hypermobility. Many people with EDS have unstable joints that can dislocate easily and are prone to injury. It’s very important to look after your joints, Joint Protection uses a few key principles to make sure every day activities don’t add to joint problems.
Joint Hypermobility can often be managed through increasing muscle tone, for this reason physiotherapy is essential to managing joint dysfunction. Often adapting physiotherapy makes it easier to get stick to routines and save energy. Along side physiotherapy general exercise & fitness are really important when it comes to maintaining muscle strength. Many fitness activities involve some components of stretching and yoga, these need to be done especially carefully but can actually be beneficial.
If you’re still struggling with wonky joints then it might be time to think about splinting. I’m working on a comprehensive guide to splinting to answer all splinting related questions. Everything from Types of Splinting to Medical Corsetry and Kinesiology Taping.
Another symptom of EDS is pain. Many people with Ehlers Danlos experience both acute pain (from injuries) and chronic pain. Often the answer is pain killing medication but there are plenty of methods of pain management that don’t require pills or can be used along side them.
Fatigue is a big issues for a lot of EDSers, the effort of simply holding your body together can make every day tasks very difficult. One of the best ways to manage this long-term is pacing it takes some getting used to but its well worth the effort. If you’re struggling with pacing, I offer video chat pacing masterclasses. Alongside pacing it’s really important to get good quality sleep. Good Sleep Hygiene can help beat ‘pain-somnia’.
Fatigue combined with ‘painsomnia’ can make maintaining a healthy sleep / wake cycle difficult. Sleep Hygiene can help promote good quality sleep and maximise energy levels.
Because of how challenging pain and fatigue can be many people with EDS find getting around difficult. Mobility aids can play an important part in managing a wide range of symptoms including pain, fatigue and orthostatic intolerance. Using mobility aids such as Wheelchairs can drastically improve quality of life.
One unfortunate aspect of living with EDS is often discovering bruises that you don’t remember earning, bruising easily is unfortunately quite difficult to manage but joint protection and using mobility aids can reduce unexpected injuries of all kinds.
Many people with EDS experience a range of digestive problems like reflux and symptoms of irritable bowel. Often these can be managed through dietary changes so it’s worth speaking to your primary doctor about seeing a dietician. Bladder issues also aren’t uncommon, any concerns should be shared with your GP.
Another symptom of EDS can be dizziness and racing heart rate when standing up. This is often indicative of Postural Orthostatic Tachycardia Syndrome or PoTS. Which, again, can usually be managed with hard work and a little lifestyle adaptation.
Some of the less common and potentially more serious problems with EDS involve internal organ complications like prolapses and hernias. These are usually managed by specialist doctors.
Learning to self-manage your symptoms can take time and there may be times when you need a little extra help. It’s important to know what you can deal with on your own and when to seek medical help.
If you are seeking medical help, it’s important to build good therapeutic relationships with your healthcare providers, Having a good relationship with your primary doctor can make living with a long-term condition considerably easier.
If you’d like to read more about Hypermobility type or any of the other less common types of EDS the Hypermobility Syndromes Association is a great resource. Their information on Types of EDS, associated conditions and other connective tissue disorders can be found in the Help & Advice section.
I aim to add more resources to this page as I write them, if you have any suggestions then please don’t hesitate to get in touch or leave a comment.