24 Surprising Symptoms of Ehlers-Danlos Syndrome

Article updated July 25, 2019.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Ehlers-Danlos syndrome (EDS) is a group of disorders that affect connective tissue, which is like the “glue” that holds our bodies together. When the connective tissue is faulty, it can cause joints to sublux or dislocate completely and can make the skin stretchy and fragile. However, Ehlers-Danlos syndrome is a complex illness and can cause many serious physical issues beyond simply “being flexible.”

In order to better understand the different ways in which EDS can affect people, we asked our Mighty community to share some of the physical symptoms of Ehlers-Danlos syndrome that surprised them. Have you experienced any unexpected symptoms as a result of EDS? Let us know in the comments below.

 

Here’s what the community shared with us:

1. “Being very bendy but being in pain. People associate pain with being stiff but that’s not always the case.”

2. “Gastrointestinal issues, like bloating, diarrhea, constipation, difficulty absorbing nutrients, nausea, acid reflux, etc. People are always surprised by these symptoms (as I was!) but EDS can affect your organs, bladder and bowel movements as well. Some people with EDS need a feeding tube and have trouble gaining weight.”

3. “The sheer inability to relax my body for fear a joint will sublux at any moment. I can sleep all night and wake up feeling like I ran a marathon from trying to keep my body in one piece.”

Join The Bendy Bunch group to connect with other people living with hypermobile EDS.

4. “The brain fog!”

5. “My teeth being so weak. I’m in the process of getting upper dentures now and next year we have to take out all my bottom teeth too. I’m only 25.”

6. “Hormone imbalances. Secondary conditions like dysautonomia can cause adrenal problems, which affect other hormones and hormone production.”

7. “Velvety soft skin that is surprisingly fragile.”

8. “Headaches from postural problems! I can hardly keep myself upright and I just slip into a hunched position and then I get horrible headaches that stop me from even being able to move.”

9. “Fatigue – I get tired doing next to nothing, and it can take days to recover from things I used to be able to do without thinking. I never thought bendy joints would make me this exhausted!”

10. “My eyes are so badly affected I’m registered blind.”

 

11. “Being klutzy! I’ve always managed to bump into everything, walk into door frames, slam my hands into counters, or fall into chairs… turns out EDS causes poor proprioception, which basically means we’re really bad at telling where our bodies are in relation to other things.”

12. “Scratching can either tear skin or leave huge friction burns that in turn take forever to heal and almost always leave a scar.”

 

13. “The lack of muscle tone. I have hEDS and I don’t have a lot of muscle tone from the waist up. My legs are fine because I am able to walk a lot on campus and at work, but above my waist I am extremely skinny and can’t lift much. I attempt to lift weights and work my muscles but I either sublux or dislocate a joint so I am unable to uphold much muscle mass there.”

14. “Long tongue with little to no frenulum so that you can lick the tip of your nose (Gorlin’s sign).”

15. “‘Owl neck.’ [I] have to be very careful driving when looking over shoulder to not look all the way back, but to look just over my shoulder.”

16. “Small mouth with crowded teeth. My mouth is abnormally small and I had to have eight permanent teeth removed in order to have braces. I have to cut my food really small or I have a hard time eating it.”

17. “The complete inability to sleep in a bed due to pain. I have to sleep propped up with pillows on the sofa, and even then I still sublux joints in my sleep. But at least it minimizes the excruciating rib pain I get if I sleep in a bed.”

18. “The need for a port because of failing veins! My veins are too weak to hold simple IVs, so a port became necessary. That is just ridiculous.”

19. “Having suction cup flat feet because you don’t have any collagen to form an arch. My feet literally suction to hard floors and make audible suction noises!”

20. “Mouth and jaw pain.”

21. “Surprise bruises! You don’t know how you got them but damn, they are colorful!”

22. “Randomly feeling like you have the flu.”

23. “Dental issues! Plaque being stuck in weird places because we can have an extra flap or extra skin in our mouth that holds the plaque and stuff in a place others don’t have.”

24. “We look younger than we are! Due to the collagen being extra stretchy we [may] seem younger. (Less wrinkles?) Gotta look at the plus side!”