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, unfortunately, a condition you may not know much about unless you (or a close friend) have it. The general public and many doctors may not know that certain (often invisible) symptoms are caused by EDS, not “growing pains” or “clumsiness” — meaning if you are experiencing symptoms, you might live with them for years without realizing you have EDS. There are 13 subtypes of EDS that each have their own set of criteria, but broadly, EDS is a connective tissue disorder with symptoms including joint hypermobility, fragile skin, chronic musculoskeletal pain, organ rupture, gum disease, slow wound healing and many more.
Once you have been diagnosed with EDS, you can educate yourself and work with doctors to treat and manage your symptoms — but the first step is realizing you have EDS in the first place. So we asked our Mighty community to share some signs they experienced that indicate they have EDS. You may relate to these if you have EDS. Let us know if we missed any signs in the comments below.
Here’s what our community told us:
1. “I was always in pain. Various parts of my body always hurt. My mom recalled recently that when I was 2 years old I would complain of my ‘belbow,’ aka elbow, hurting. I was labeled a hypochondriac because no doctor investigated my claims. They just figured I was a child looking for attention.” — Cara S.
2. “I had these instances where my hip would ‘pop.’ I’d scream in pain and couldn’t move. I now realize that was my hip dislocating. My mom most likely put in back in place while trying to figure out what was wrong, without realizing that’s what she was doing.” — Kari R.
3. “I could never get over the ‘burn’ of working out. My muscles would forever hurt until I stopped sports all together.” — Callie J.
4. “My husband had occasionally commented on how my hands were the softest he’d ever felt even back when we were dating. We were together for over 16 years before I realized it was because of the velvety soft skin that is a symptom of EDS.” — Hannah G.
5. “I never understood my mom’s obsession with back scratcher tools. I figured she must just prefer the sensation to scratching her own back. I didn’t realize until I was an adult that most people can’t scratch their own backs and zip their own dresses.” — Caroline M.
6. “For my son, he feels badly, flu-like, every day. When I read about EDS, I saw fatigue but didn’t realize that malaise is part of that. (Malaise just isn’t listed as a symptom on most of the early material I had read). If I had known that tidbit, the rest of the connective tissue disease symptoms would have added together more easily. EDS is so much more than hypermobility and joint issues. EDS makes you feel sick.” — Heather A.
7. “Constantly falling over as a child. I was in the hospital at least once a term with some form of injury after a fall. My poor mum was put through the ringer for years and now when I need to go to hospital I avoid it for as long as possible.” — Charlie H.
8. “As long as I can remember, I was able to sublux my joints at will. I could ‘pop’ my ankles, knees, hips, shoulders and fingers. I sprained my wrists and ankles constantly, sometimes without even remembering how I did it. I could hyperextend and contort my body in ways my friends never could. All the doctors would tell my parents that I just had ‘wonky joints.’ It wasn’t until I was 46 years old that a very smart primary care physician put all the pieces of the puzzle together and sent me to a rheumatologist, who eventually diagnosed me with Ehlers-Danlos syndrome.” — Kaye E.
9. “Chronic intestinal pseudo obstructions all throughout childhood! Multiple bowel resections, development of hernias that failed surgical correction and no one could figure out why, followed later by an emergency c-section surgery that opened back up two and a half weeks post! Knowing all I know about EDS now I cannot believe they missed the signs for 32 years!” — Ashley L.
10. “Hypermobile. And very much underweight despite a nutritional diet.” — Daisy M.
11. “I started having back problems when I was 12 years old. Sometimes the pain was so bad that I couldn’t walk and had to be carried. We never had a solid answer as to why I was in such unbearable pain, but now we know.” — Leah B.
12. “The ability to touch my tongue to the tip of my nose (which I found out is a thing called Gorlin’s sign which should have been a giant red flag!).” — Tori M.
13. “I was always ‘W’ sitting as a child.” — Ashley L.
14. “I was a dancer and still am, and when I was a teenager, my right ankle started popping out of place a lot. For a while I was having to go to the chiropractor every other week for it. Eventually he got it to stay in place for longer periods of time, but then it started growing to the nearby joints popping out of place, until it pretty much became the majority of the joints in my body. I’ve seen the same chiropractor since I was 3, and at 25 when I told him I had the appointment for the testing for EDS, his response was that it would explain everything. Then a couple of weeks later when I told him I officially had EDS hypermobility type, he said at least we finally know.” — Jennifer L.
15. “This is very typical but I had really bad ‘growing pains’ in my legs and hips that still happen almost every night. Also when I was a toddler, my mom was trying to jump me over a puddle by pulling my arms up and both shoulders dislocated! When she went to buckle me in my car seat they both popped back in.” — Stephanie D.
16. “Severe bruising!” — Ashley L.
17. “I walked late as a baby. Closer to 18 months than 12 months. When I first tried to stand, when pulling up, I’d end up on the tops of my feet.” — Megan M.
18. “My doctor never being able to determine if I have scoliosis or not. One visit my spine would be fine, the next it would be curved. Now I know that my spine is unstable and often shifts place when I cough or do strenuous activity!” — Grayson R.
19. “Constantly rolling ankles from a very young age, my knees hyperextended very far backwards (they still do) and I was always passed off as a very clumsy child/teenager but now we know that’s because of my EDS.” — Ryleigh C.
20. “How flexible my fingers were! And running was always really hard for me.” — Chelsea S.