For Pain Awareness Month 2018, we asked our Ehlers-Danlos Society community: “What was your earliest memory of EDS/HSD-related pain? How old were you?”
The response was overwhelming—almost 500 submissions in just two days. While many respondents remember childhood injuries that didn’t heal like their friends’ injuries—and some didn’t experience chronic pain until adulthood—several commenters shared with us that they “couldn’t remember life a before pain.” A frustratingly common experience was the dismissal of chronic childhood pain as, simply, “growing pains,” a catch-all phrase for the bilateral aches and pains often attributed to the intense physical activity of early childhood.
Here is what a few commenters had to say:
- “The earliest I can remember is literally the earliest I can remember anything. At about 2, my knees would always hurt so bad that my mom would rub them to try to help the ‘growing pains’. Apparently, I had actually been pointing to my knees before I could talk. I always kind of knew it wasn’t normal since I was constantly getting tests done…yet I still wasn’t diagnosed until I was 17.” – Jordan
- “I was 3 when I dislocated my knee. I know it hurt, but my only memory of the event was my mom crying and saying she was so sorry over and over. I was in my 20s before I really knew that the overall pain I felt wasn’t normal. Growing up in a family where dislocations were common, I thought everyone felt the way I did and I just wasn’t handling it very well. I was 30 when I was the first in my family to be diagnosed”
– Heidi - “My earliest memory of pain was around 1st grade. I was getting headaches, stomach aches, and what appeared to be ‘random’ pain. I would come home ‘sick’ from school quite often. At that time, my teachers and school nurses must have thought I was doing it for attention, however it wasn’t until my diagnosis at 26 that it all came together and made sense. I wasn’t crazy, I have EDS.” – Mel
- “My elbows started dislocating as a baby. I don’t remember not having pain. It was well into adulthood (probably 30) before I realized everyone did not live in constant pain; until then, doctors had always told me my pain was all in my head.” – Shawna
- “I was 5 or 6 years old and would wake up In the middle of the night with leg pain. My doctor said it was growing pain. I’m now 48 and still wake up to leg pain. Guess I’m still growing.” –Ernie
“I had always pain in my joints and my back. When I was 4 years old, I already cried because of pain on long road trips where I had to sit long time in the car without stretching my limbs. At the age of 9, I had my first suicide attempt because of my chronic EDS pain which nobody believed, not even my own parents. They told me, ‘it’s all in your head; you are too young to have pain.’ ” – Caducea
- “When I was 3, I heard my 13-year-old sister ask Mom for Tylenol for a headache. I asked her what a headache was. She was trying to explain it to me. I kept thinking but that’s how my head feels all the time. I thought I wasn’t understanding her. When I had my first jaw surgery when I was 17, I woke up without a headache for the first time in my life.” – Krissy
- “I have distinct memories of being up past bedtime while all of my siblings were asleep, laying on the living room floor crying because my legs hurt. My grandma would give me aspirin and put me in a hot bath. I was so sleep deprived from pain for pretty much my entire childhood (and still today). I had many, many doctors visits where I was told they were growing pains.” – Hannah
- “When I was 5 years old, I was sitting on my heels…and both my knees locked in place when I tried to get up. They stayed that way for three whole days. I vividly remember my mum having to lift me on and off an old potty when I needed the toilet, because I couldn’t straighten my legs, no matter what, they were bent and locked like a frog’s. The time or two when I tried to move them in my sleep–when I finally got a little sleep–the pain woke me up.” – Tria
- “At age 4, I woke with a blue, numb arm. I had fully dislocated it in my sleep. I clicked it back and woke my mom up crying. She put icy hot on my neck, she thought I had just slept wrong.” –Karrie
- “I was 19 and in basic training in the Army. The PT and the running left me literally hurting all over. X-rays showed nothing but I kept complaining so they sent me to nuclear medicine. The test showed that I had stress fractures throughout my hips and legs and a broken ankle. It was another 31 years later that I was finally diagnosed with EDS.” –Lisa
“I was 3 or 4. My mother was walking with me and holding my hand. I felt so tired from walking, so I decided that I would just sit down. Because my mother was still holding my hand, this caused my elbow to dislocate. This was so confusing to me, and of course more pain than I had ever experienced. The doctor said the X-ray looked like I had been physically abused.” –Alide
- “I remember being a little kid, around 11 or so, and crying in bed from my ‘growing pains.’ It felt like my bones were pulling apart at night. I had always had tummy problems which I was told was because I was an anxious kid…I felt nauseous all the time and had no idea why.” –Adalee
- “When I was five or six years old the teacher in class asked us to pick stuff off the floor. She said she had a bad back and couldn’t do it. I remember thinking this statement was very unfair, as I had backache too! I never told her because it felt normal to me.” – Stephanie
- “For as long as I can remember. I even broke my pelvic bone when I was eight, but due to my high pain tolerance, I didn’t tell anyone. It healed by itself and now my joints are malformed in my hips.” –Callie
- “When I was 3 or 4, trying to hold crayons and other writing utensils.” –Kim
Disclaimer: Each quote submitted to The Ehlers-Danlos Society for this article is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
