21 Symptoms of Ehlers-Danlos Syndrome That Were Dismissed as 'No Big Deal'
It’s a story so many people with Ehlers-Danlos syndrome can relate to: You experience a painful symptom, tell doctor (or friend or family member) about it and get “Oh, that’s no big deal” in response. Partly because EDS is still so poorly understood by medical professionals and the general public and, sadly, partly because many patients simply aren’t taken seriously, far too many EDS-ers can recount a time when someone brushed off one of their symptoms as “no big deal.”
No one should ever be made to feel like their symptoms are “all in their head” or not worth investigating further. We wanted to raise awareness of the kinds of symptoms people with EDS present with that are often brushed off — but are actually signs of the condition and should be taken seriously. So we asked our EDS community on Facebook to share a symptom they experienced that was dismissed as “no big deal.” If you’ve ever experienced these symptoms, know that your pain is valid and deserves to be addressed.
Here’s what our community shared with us:
- “Chronic wrist and elbow dislocations and easy bruising. I would tell doctors about these symptoms and they would just say ‘oh that’s impossible, you don’t have any trauma’ or ‘you’re just clumsy, be more careful.’” — Christa R.
- “When I had growing pains, it felt like my body was being torn apart. But since I’m female, they brushed it off as being overdramatic, and also asked if I was on my period once. It gets extremely frustrating when doctors don’t listen.” — Tiffany B.
- “My hypermobility. I was told that I was just very flexible, that I should be thankful and try out for gymnastics, or that it was odd but no big deal.” — Julia O.
- “I needed surgery as a teenager because my jaw had dislocated so many times that the hinges wore out. I also needed braces and my orthodontist said he’s never seen such a high arch. Alarm bells should have rung when after years of jaw and dental work my teeth returned to their old position.” — Lidia K.
- “Lots of stomach issues. I was told to ‘eat more fiber’ and to use Metamucil three times a day. Too much fiber makes me bloated and makes things much worse.” — Karla D.
- “Chronic and severe joint pain. My doctor always told me it was in my head because there was no proof on imaging.” — Brittany A.
- “The fatigue. Now I know we all feel like this!” — Hiu Y.
- “I’m 10 months postpartum with my daughter and I am still working on correcting my alignment from being pregnant. It has taken this long for doctors to stop considering my hypermobility and pain a ‘pregnancy thing.’” — Tab M.
- “My ankles would just pop and give out. I was told I needed to see a therapist because talking about feeling might make the pain go away.” — Sarah B.
- “I had a doctor (youngish, so fresh out of med school) tell me that all EDS is is being double-jointed. It’s no big deal. She said, ‘My husband has EDS, it’s no big deal.’ So to her, EDS itself is nothing at all.” — Rebecca R.
- “The constant dislocations and falls. I was told it was just balance issues and need to learn balance myself when I walk. Really? Turns out EDS caused complete hearing loss in left ear and knee joints were completely unstable causing four breaks.” — Akamai K.
- “I had heart issues my entire life. My heart rate would shoot up upon standing and plummet randomly. I had multiple issues resulting in four cardiac ablations, open heart surgery and a pacemaker and several other health issues and never once did a doctor ask or wonder why?” — Misti M.
- “My extreme lack of balance. Had to fight for a long time for a cane, during which I injured myself many times just from falls.” — Tiff W.
- “I was told I couldn’t walk as a young toddler because I ‘just preferred to be carried around instead.’ My doctor assigned a physical therapist to confirm this, but was shocked when my PT informed him that I had hip dysplasia and extreme hypermobility. For the record, I didn’t actually like to be carried around.” — Brittany N.
- “Vertigo, temperature intolerance, trembling, and cold sweats out of nowhere. It started in my late teens. I recognized five decades later that it’s symptoms associated with dysautonomia and MCAD. Even with a hEDS diagnosis, the accompanying co-morbid conditions are completely ignored!” — Madeline M.
- “Being up all night as a young child having my mom rubbing my knees and legs from excruciating pain, and doctors telling her that it was just normal growing pains, no biggie, I’ll get over it, grow out of it… As my mom lost many many nights sleep staying up all night (she even worked full time) rubbing my knees and legs just to help a little to allow me to sleep so I could go to school…God love my momma…” — April B.
- “I was told the pins and needles in my hands and feet are hallucinations.” — Helen M.
- “Pain in abdomen (round ligament pain) during pregnancy. Was brushed off as ‘normal’ and ‘no big deal,’ as we later learned my round ligament with literally tearing and bleeding internally.” — Kayla D.
- “Constant dislocation in my neck.. It causes pressure headaches along with neck and shoulder pain. The doctor said he could give me shots in my head for the headaches and that was it. Completely ignored my neck problems.” — Dani L.
- “My daughter’s elbows subluxated and popped loudly and painfully, often, starting at age 10. The family doctor and the orthopedic surgeon chalked it up to growing pains. No matter my arguments, I was told I was wrong, it wasn’t a concern and that it was completely normal.” — Trish V.
- “Chronic fatigue and malaise, which for me is more like constant exhaustion. I would love for every doctor who has ever told an EDS patient, ‘Eat better, exercise more, lose weight, take this antidepressant and you will be fine,’ to suffer from chronic fatigue for a year. In that amount of time, I think they could then understand how debilitating chronic fatigue can be and how it impacts every part of our lives. Then I would remind these doctors of all the other symptoms that we are trying to deal with all the time, every day of our lives.” — Jamie E.