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21 Symptoms Kids With Ehlers-Danlos Syndrome Had That Weren't 'Growing Pains'

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Article updated August 1, 2019.

Ehlers-Danlos (EDS) symptoms typically begin showing up in childhood, but because there’s such a lack of awareness of EDS among doctors and the general public, these symptoms are often brushed off as “just growing pains.” Joints hurting? Growing pains. Difficulty running? You’ll grow out of it. Gastrointestinal issues? It happens sometimes. Unfortunately, brushing off EDS symptoms like this only makes it harder for kids (and adults) to get the diagnosis and medical support they need (not to mention how frustrating it is for painful symptoms to be ignored).

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

People won’t learn the signs of EDS and stop dismissing the symptoms as “growing pains” unless they understand what those symptoms look like. So we asked our Mighty community to share symptoms they experienced as kids that definitely weren’t “just growing pains,” even if that’s what doctors said they were at first. These symptoms need to be taken seriously.

Here’s what our community told us:

1. “Until I was 4, I had problems walking because my knees would bend backwards instead of forwards and they constantly hurt. I also dislocated and injured my ankles and knees a lot.” — Ray E.

2. “Back pain. I was in 6th grade and kept pulling muscles. No one realized it was scoliosis until I took a kick to the back in karate and landed flat on my rear. Ended up needing to be fused from T3-L4, and then further down to S1 five years later. I was in so much pain I would sob. I was diagnosed with EDS eight years after the initial fusion, after nine surgeries (five on my knee, two on my back, my appendix, and tonsils).” — Saylor A.

3. “My joints constantly hurt, especially my knees and hips, since I was about 6. My neck and lower back have hurt as long as I can remember. I had migraines by 8 years old. Turns out my joints and vertebrae were subluxing and the cartilage in my knees was deteriorating. By 16 I had none left in my knees.” — Crystal H.

4. “Throbbing legs that kept me up all night and had to be rubbed and I was given Tylenol. The doctor called the pain growing pains.” — Beth G.

5. “As a child I was constantly exhausted. I’d have 12+ hours sleep and when my mum woke me up I’d be in tears, as I was still tired.” — Toni K.

6. “Was always being told off by my parents for standing on the side of my feet, with feet at a 90 degree angle to my ankles… Who knew that wasn’t normal!” — Chrissy P.

7. “I would accidentally kick the inner side of my ankle bones when I walked to school. They would bleed and by the time I came home from school my white socks would be stuck to the scabs on my ankles.” — Esther W.

8. “My tailbone started dislocating when I was 6 years old. No one believed me because I’d ‘not done anything to it.’ It would be out for months at a time and no one would understand why I was sat crying and when I told them they didn’t believe me.” — Leah R.

9. “Had postural orthostatic tachycardia syndrome (POTS) symptoms for as long as I can remember. Every morning as I was getting up I would make it to the door of my bedroom and habitually pause to clutch the doorframe just in case I started to faint.” — Naoma B.

10. “Having muscles so stiff every morning that I couldn’t even bend my head to look at my lap (if I was sitting) for hours, as well as being unable to support the weight of sitting upright for a few hours until my muscles ‘woke up.’ Being exhausted every morning from crappy sleep, and being unable to relax because it felt like my bones were pulling apart while laying in bed for hours before falling asleep. (I was two days shy of 30 before I was diagnosed, and had only heard of EDS the year before).” — Melissa D.

11. “A horrible stabbing pain in my hips and knees, made worse by the cold. Like a red hot knife being put under my knee caps and shoved into my hip joint. I didn’t know it wasn’t normal, as a child/teenager I just assumed everyone got this.” — Alexandra B.

12. “Gyno problems from when I was around 11 right up until my hysterectomy at 29. At first it was I was young and it’s everything settling down, then I was told it would all sort out when I had a baby! Either way, it was always my age — growing pains. I only found out last year that 90 percent of my gyno problems were down to EDS.” — Rebecca E.

13. “My legs and arms used to feel very heavy when I was a little girl in bed, they felt like stone and I couldn’t lift them up. It was scary.” — Caroline B.

14. “An inexplicable inability to be proficient at any sporting activity due to hypermobility, joint and muscle pain, clumsiness, very poor spatial awareness, breathlessness, shaking, ankle and knee weakness. I would start running and inexplicably just fall over. Very embarrassing, and was teased for it mercilessly. Meant that I was excluded from the ‘it’ crowd. I would cry every sports day, due to my embarrassment of my incompetence.” — Christine R.

15. “My ankles gave way whenever I tried to go faster than a slow walk and I would fall over. My legs ached and my knees started making a horrible crunching sound.” — Bex Y.

16. “Knee caps dislocating and hips subluxing! I didn’t realize that’s what was happening then, and because I had no diagnosis, I was told that I was ‘too young’ to having anything wrong, that I was just growing, and ‘growth brings pain.’ My mom was the one who really realized that something was wrong, because she knew she had EDS. She just didn’t know enough about it to know what fully was happening or what to do.” — Catherine M.

17. “The main things I associate with my EDS from when I was little were books and pencils. You see, I couldn’t grip pencils properly, so I had to use these big rubber pencil grips in order to write. As for the books, my shoulders were at constant risk of dislocations (I don’t remember if they ever did or if this was just precautionary). My elementary school let me keep a set of books at home and a set in the classroom so I wouldn’t have to carry them back and forth. Of course, when other kids saw that I was being treated differently, they constantly bullied and made fun of me. ” — Maxwell B.

18. “Rolling ankles when running. Falling a lot. Being accident prone. Doctors scratching their heads and saying things like ‘She’s different, but I don’t know why.’ Being fine or in extreme pain, I’v never had an in-between, to the point it freaked my parents out. I was either OK or I was sobbing and lethargic.” — Karrie A.

19. “I would get severe pain in my sternum when we had to sit crisis cross apple sauce during class. I kept being told it might be asthma, but my breathing is just fine.” — Taylor M.

20. “Recurring kidney infections due to the urethra tubes between the bladder and kidneys closed off every few months, causing urine to be trapped in my kidneys where it would become infected. My urologist would have to go in and stretch them back open. I once spent a month in the pediatric ward of the hospital because of it.” — Tammy B.

21. “Nausea every day after lunch that my teachers and school nurse thought was just me trying to get out of school.” — Roze R.

Originally published: January 16, 2018
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