Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect connective tissues like skin, joints, and blood vessels. EDS is caused by faulty genes that produce abnormal collagen, an essential protein in connective tissue.
There are 13 recognised types of EDS, with varying symptoms and severity. The most common form is hypermobile EDS, which causes very flexible joints.
Common Symptoms
The most common EDS symptoms involve the musculoskeletal system. Joint hypermobility causes loose, unstable joints that dislocate easily. This leads to chronic joint pain and early-onset arthritis. Muscle weakness and poor coordination are also common.
Some types of EDS weaken blood vessels, causing easy bruising, varicose veins, and rupture risk. Soft, velvety skin that scars extensively is another hallmark. Fatigue and gastrointestinal problems like heartburn, bloating, and constipation frequently occur as well.
Living with Chronic Pain
For most with EDS, chronic musculoskeletal pain is the most life-altering symptom. Joint instability and soft tissue injuries cause constant aches, reduced mobility, and loss of strength. Pain often interferes with school, work, and social life.
Finding an effective pain management plan is essential. Lifestyle changes like low-impact exercise, physical therapy, massage, and resting sore joints can help reduce daily pain. Some patients find braces, splints, or wheelchairs useful for stabilising joints. Medications like NSAIDs, nerve pain drugs, or muscle relaxants may relieve pain for some. Alternative therapies like meditation, acupuncture, or medical marijuana can also provide pain relief.
Coping Strategies
Living with chronic illness often takes an emotional toll. Many with EDS struggle with depression, anxiety, and isolation. Developing healthy coping strategies is vital. Connecting to an EDS support group provides community. Counselling helps process difficult emotions.
Mindfulness practices like meditation help manage stress. Simplifying obligations, asking for help with tasks, and budgeting rest time prevent burnout. Though EDS may limit certain activities, staying engaged socially and pursuing enjoyable hobbies improves quality of life. Celebrating small wins and focusing on what your body can do, not just what it can’t, cultivates optimism.
Work with a Coach
Working with a coach who understands and supports those living with chronic illnesses like Ehler’s Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, and chronic fatigue syndrome, can help. A POTS coach like Rosie Bailey can offer personalised fitness and nutrition advice, so you can become the very best version of yourself. Many people living with a chronic health condition like Ehler’s Danlos Syndrome struggle with fitness and working with The POTS Coach can make a huge difference.
Seeking Proper Medical Care
Getting an accurate EDS diagnosis is the first step. EDS is often misdiagnosed, so finding a knowledgeable specialist is key. Physical and occupational therapy helps develop strength and joint stabilisation. Cardiologists monitor heart issues, and pain management specialists help treat chronic pain. Surgery may be needed for severe joint instability or hernias in some cases. Lifelong follow-up care with a geneticist or rheumatologist knowledgeable about EDS is recommended. Lifestyle adjustments and proper treatment can make living with EDS more manageable.
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