Ehlers-Danlos Syndrome (EDS) Doctor Appointment Prep
Ehlers-Danlos syndrome is a connective tissue disorder that affects skin, joints, blood vessels, and organs. It is often missed or misdiagnosed as fibromyalgia, anxiety, or hypermobility disorder. Diagnosis often requires specialised assessment and genetic testing. Many EDS patients have struggled for years without a diagnosis — coming prepared with a detailed symptom history helps.
Reviewed by the Brief My Doctor editorial team · Last updated June 2026
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What to tell your doctor
- 1Specific skin symptoms: unusual scarring, velvety texture, bruising easily, poor wound healing, stretchy skin
- 2Joint symptoms: hypermobility (joints that bend further than normal), dislocations, chronic pain, instability
- 3Gastrointestinal issues: reflux, IBS-like symptoms, constipation, pain
- 4Whether you have been told you are "flexible" or "double-jointed"
- 5Any blood vessel issues: easy bruising, poor circulation, varicose veins
- 6Family history: relatives with connective tissue disorders, unusual scarring, joint hypermobility, or sudden cardiac events
- 7Any previous diagnosis of hypermobility, fibromyalgia, or anxiety
- 8Impact on daily life: limitations due to pain or instability
Questions to ask your doctor
- Q1.Do you suspect EDS, and which type?
- Q2.Do I need genetic testing, and how is that done?
- Q3.Should I see a cardiologist given the vascular complications?
- Q4.What physical activities are safe, and should I avoid certain sports?
- Q5.Do I need physiotherapy, and should it be specific to EDS?
- Q6.Are there medications that can help pain management?
- Q7.What should I do about joint dislocations?
- Q8.Is pregnancy safe with my EDS type?
Don't forget to bring
- ✓Photos of skin (scars, texture, stretch marks) and hypermobile joints if possible
- ✓Timeline: when did symptoms start, and how have they progressed
- ✓Family history: relatives with connective tissue disorders, hypermobility, unusual scars, sudden cardiac events
- ✓List of all symptoms: skin, joint, GI, cardiovascular
- ✓Previous assessments or genetic testing results