Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect connective tissues, making them more fragile and flexible than usual. If you grew up with EDS, you probably experienced unique challenges that most people around you didn’t understand. From extreme flexibility to unexplained chronic pain, life with EDS often means living with symptoms that can be mistaken for something else or ignored altogether.
This blog post will explore 23 signs that indicate you may have grown up with Ehlers-Danlos Syndrome. Whether you’ve been officially diagnosed or suspect you have EDS, these signs can help you understand your body better. If you relate to many of them, it might be worth discussing your experiences with a medical professional.
1. You Were Extremely Flexible as a Child
One of the earliest and most noticeable signs of EDS is hyperflexibility, meaning your joints could move beyond their normal range. Maybe you were able to bend your fingers backward, do the splits effortlessly, or even put your legs behind your head.
While this level of flexibility might have impressed people around you, it was actually a sign of weakened connective tissues. Over time, this hypermobility may have led to joint pain and instability.
2. You Had Frequent Joint Dislocations or Subluxations
If you had EDS, you probably experienced joints slipping out of place easily—even with simple movements. Subluxation is when a joint partially dislocates and then pops back in, while a dislocation means the joint completely comes out of place and requires medical intervention.
These incidents could happen while doing something as simple as stretching, getting up too quickly, or even while sleeping. People with EDS often become experts at popping their joints back into place without even thinking about it.
3. You Had Chronic Pain That Was Dismissed as “Growing Pains”
Growing up with unexplained pain in your joints, muscles, and bones was common, but doctors and parents might have told you it was just “growing pains.”
Unlike regular growing pains, however, EDS-related pain doesn’t go away. Instead, it worsens with age and can become a lifelong struggle. It can also lead to early-onset arthritis and other degenerative joint issues.
4. Your Skin Was Soft, Velvety, and Super Stretchy
EDS affects the skin, making it softer, stretchier, and more fragile than usual. If you could easily pull the skin on your arms or hands far away from your body without pain, this could have been an early sign.
This stretchy skin might have also been more prone to bruising, tearing, and slow healing. Even small cuts could take longer to heal and leave wider scars than expected.
5. You Bruised Very Easily
People with EDS tend to develop bruises without remembering how they got them. If you often had random dark bruises on your legs, arms, or even face, this was likely because your blood vessels were fragile due to weak connective tissues.
As a child, you may have been accused of being clumsy, but in reality, your body was just more prone to bruising than others.
6. You Were Always Tired, No Matter How Much You Slept
Chronic fatigue is another major symptom of EDS. Even after a full night’s sleep, you probably still felt exhausted throughout the day. This is because people with EDS often have poor sleep quality, muscle fatigue, and constant joint pain, which can drain their energy.
Your fatigue may have affected your ability to concentrate in school, keep up with physical activities, or even complete daily tasks.
7. You Had Frequent Stomach Problems
EDS doesn’t just affect the joints—it can also impact the digestive system. If you had frequent stomach aches, acid reflux, constipation, or irritable bowel syndrome (IBS)-like symptoms, it could have been due to weakened connective tissues in the gut.
You may have been misdiagnosed with IBS, but the root cause was actually EDS affecting your digestive organs.
8. You Were More Prone to Sprains and Strains
Because your joints were looser than normal, your muscles had to work harder to keep them stable. This often resulted in frequent sprains, strains, and muscle injuries even from mild activities.
Maybe you twisted your ankle too easily, struggled with muscle stiffness, or needed extra recovery time after simple physical activities.
9. You Had Weirdly Flexible Fingers and Toes
EDS often affects the smaller joints too. You may have noticed that you could bend your fingers or toes backward, making weird shapes with them. Some people with EDS also develop conditions like flat feet or hammertoes because their connective tissues don’t provide enough support.
10. Your Wounds Took Longer to Heal and Left Unusual Scars
Even small cuts or scrapes might have taken a long time to heal and resulted in thin, wide scars. Unlike normal scars that fade over time, EDS-related scars often remain visible and may become papery or wrinkled over time.
11. You Experienced Frequent Headaches or Migraines
EDS can contribute to chronic headaches and migraines, often due to poor circulation, neck instability, or nerve compression. These headaches might have been triggered by stress, posture, or even certain foods.
12. You Had Trouble with Coordination and Balance
Did you often trip over your own feet or struggle with balance? Poor proprioception (the ability to sense where your body is in space) is common in people with EDS. This can lead to frequent falls, clumsiness, and difficulty with activities requiring fine motor skills, like writing or buttoning a shirt.
13. You Struggled with Anxiety or Panic Attacks
Many people with EDS also deal with anxiety and panic attacks, often due to autonomic nervous system dysfunction (dysautonomia). This can cause issues like dizziness, heart palpitations, and difficulty regulating body temperature.
14. You Had Unexplained Dizziness and Fainting Spells
Have you ever stood up too quickly and felt lightheaded or like you were about to faint? This is because EDS can cause problems with blood circulation, leading to a condition called postural orthostatic tachycardia syndrome (POTS).
15. You Had Poor Dental Health Despite Good Hygiene
EDS can affect oral health too, making you more prone to cavities, gum disease, and weak enamel despite brushing and flossing regularly.
16-23. Other Signs You May Have Grown Up with EDS
- Frequent joint pain without injury
- Difficulty sitting or standing for long periods
- Delayed motor milestones as a child (late crawling/walking)
- Unusual skin texture – very soft, fragile, or translucent
- Hernias at an early age
- Chronic muscle weakness
- Increased sensitivity to temperature changes
- Unexplained allergic reactions or sensitivities to food and medications
Final Thoughts
Growing up with Ehlers-Danlos Syndrome often means experiencing undiagnosed pain, joint issues, and other chronic symptoms from an early age. If you recognize many of these signs in yourself, it’s important to consult a medical professional who specializes in connective tissue disorders.
Understanding your body’s unique needs can help you manage symptoms and improve your quality of life. Remember, you are not alone, and there is support available!
