5 Signs You Might Have Ehlers-Danlos Syndrome

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Introduction

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that affect skin, joints, and blood vessels. Often misdiagnosed, EDS can cause chronic pain, joint instability, and other complications. Recognizing the signs early can help manage symptoms effectively.

If you experience unexplained joint pain, extreme flexibility, or fragile skin, you might have EDS. Let’s explore the five most common signs of this often-overlooked condition.

1. Hypermobile Joints (Joint Hypermobility)

One of the hallmark signs of EDS is hypermobile joints, meaning your joints stretch beyond normal limits.

Signs of Joint Hypermobility:

✔ You can bend your fingers, elbows, or knees further than most people.
✔ You frequently experience joint dislocations or subluxations (partial dislocations).
✔ You feel unstable or wobbly when walking or standing for long periods.
✔ You suffer from chronic joint pain even without injury.

💡 Try This! – The Beighton Score is a simple test to check joint hypermobility. If you score 5 or higher out of 9, you may have hypermobility syndrome.

2. Chronic Pain and Fatigue

People with EDS often suffer from persistent muscle and joint pain, even without injury.

Why Does EDS Cause Pain?

✔ Loose joints put extra stress on muscles and ligaments.
✔ Frequent dislocations cause inflammation and nerve irritation.
✔ Weakened connective tissue leads to poor posture and muscle fatigue.

Many people with EDS also experience chronic fatigue syndrome (CFS), feeling exhausted even after a full night’s sleep.

💡 Tip – Managing pain through physical therapy, bracing, and low-impact exercise can improve mobility and reduce discomfort.

3. Fragile, Soft, and Stretchy Skin

EDS affects collagen, the protein that gives skin strength and elasticity. As a result, people with EDS may have:

✔ Velvety, soft skin that feels unusually smooth.
✔ Stretchy (hyperelastic) skin that pulls away easily but returns to normal.
✔ Easy bruising – You develop large bruises from minor bumps.
✔ Slow wound healing – Cuts and scrapes take longer to heal.
✔ Atrophic scars – Thin, wrinkled scars that appear sunken.

💡 Test It! – Try pulling the skin on your forearm or neck. If it stretches much more than normal and snaps back slowly, you may have hyperelastic skin.

4. Digestive and Autonomic Issues

EDS doesn’t just affect joints—it can impact the entire body, including the digestive and autonomic nervous systems.

Common Digestive Symptoms:

✔ Chronic acid reflux (GERD) and heartburn
✔ Frequent constipation, bloating, or irritable bowel syndrome (IBS)
✔ Delayed stomach emptying (Gastroparesis), causing nausea and weight loss

Autonomic Nervous System Symptoms (POTS & Dysautonomia)

✔ Dizziness or fainting when standing (linked to POTS Syndrome)
✔ Heart palpitations and blood pressure fluctuations
✔ Temperature regulation issues (always feeling too hot or too cold)

💡 Did You Know? – Up to 50% of people with EDS also have POTS (Postural Orthostatic Tachycardia Syndrome), a condition that affects circulation.

5. Frequent Injuries and Poor Wound Healing

Because connective tissue is weaker in EDS, people often experience:

✔ Sprains and strains from everyday movements
✔ Frequent fractures, even from minor falls
✔ Tendonitis and bursitis due to joint instability
✔ Poor healing of surgical wounds

EDS can also lead to vascular complications in rare types like Vascular EDS (vEDS), which affects blood vessels and can cause life-threatening issues.

💡 Tip – If you have frequent injuries or unexplained bruising, talk to a specialist about genetic testing for EDS.

Conclusion

Ehlers-Danlos Syndrome is often undiagnosed or misdiagnosed, leading to years of unexplained pain and symptoms. If you recognize any of these five signs, consider talking to a geneticist or rheumatologist for evaluation.

Early diagnosis and proper management can help improve mobility, reduce pain, and enhance quality of life for those with EDS.

💬 Do you or a loved one have symptoms of EDS? Share your experiences in the comments!

FAQs with Answers

1. What is Ehlers-Danlos Syndrome (EDS)?
   EDS is a group of genetic disorders affecting connective tissue, leading to joint hypermobility, fragile skin, and chronic pain.
2. What are the first signs of EDS?
   Common signs include hypermobile joints, chronic pain, stretchy skin, frequent injuries, and digestive issues.
3. How is EDS diagnosed?
   Doctors diagnose EDS through clinical exams, the Beighton Score, family history, and genetic testing.
4. Is EDS a rare condition?
   Some types of EDS, like Vascular EDS (vEDS), are rare, but Hypermobile EDS (hEDS) is more common than previously thought.
5. Can EDS cause chronic pain?
   Yes, due to joint instability, frequent dislocations, and muscle strain.
6. Does EDS affect the heart?
   Certain types, especially Vascular EDS (vEDS), can cause life-threatening blood vessel issues.
7. Can EDS cause digestive problems?
   Yes, many people with EDS suffer from GERD, IBS, and gastroparesis.
8. Is there a cure for EDS?
   No, but physical therapy, pain management, and lifestyle adjustments can help.
9. Can EDS affect mental health?
   Yes, many people with EDS struggle with anxiety, depression, and PTSD from chronic illness.
10. What is the best treatment for EDS?
    Bracing, physical therapy, hydration, and medications for pain and fatigue can help manage symptoms.
11. Can you live a normal life with EDS?
    Many people lead fulfilling lives with proper medical care, lifestyle adjustments, and support.
12. What is the most dangerous type of EDS?
    Vascular EDS (vEDS) is the most dangerous, as it can cause artery rupture.
13. Is EDS linked to POTS Syndrome?
    Yes, up to 50% of people with EDS also have POTS, leading to dizziness and heart rate issues.
14. What is the difference between hEDS and vEDS?
    Hypermobile EDS (hEDS) affects joints, while Vascular EDS (vEDS) affects blood vessels and is more life-threatening.
15. How can I test for EDS at home?
    The Beighton Score Test is a simple way to check joint hypermobility, but a doctor must confirm the diagnosis.

💬 Have more questions? Ask in the comments below! 🚑