My Early Signs of hEDS in Childhood

Did you have any early signs of EDS?

Weird pencil grip (always painful to write), gastrointestinal symptoms, POTs like symptoms in my early teens, always bending myself into funny shapes, etc. So so many things that point to EDS. In the process of trying to get diagnosed as I'm very sure that's what's going on.

Thank you for spreading awareness of hEDS. As a child I always wanted to roller-skate and ice-skate, but was not able.   As an adult I learned the loose ligaments in my ankles were what made skating difficult. I've sprained my ankles many times just from my ankles turning on me just from walking down stairs.

Omg same! In childhood everything seemed normal in isolation, I only realised when I was 24 and all of it suddenly made sense Soft skin and easy bruising, POTS as well. I also found out I had chronic hip pain, which I never knew because I had it all my life and thought it was normal

Your story sounds incredibly similar to mine and it’s comforting in the sense that it feels validating, I am currently under investigation for eds

I never knew what POTS was, but I was treated for it. In my late teens, I would get up and become light headed with my vision going out with grey static like patterns. It would last for maybe 15 to 30 seconds and slowly clear up. However, on two occasions it led to a full fainting spell where I woke up on the floor. The first time triggered my parents to take me to urgent care where I was eventually hooked up to a EKG for 24 hours. It was these probes glued to my scalp and was painful when they removed it. The past week has been mind blowing, I was never diagnosed with hEDS, but all of the common symptoms line up with my medical history. Still to this day I can put both my feet behind by neck and I am 35. I also have zero wrinkles on my face. I ran through the diagnostic criteria and comfortably meet the requirements. It is so freeing finally having an answer for the various day to day challenges. Knowing I am not crazy and the daily pain I feel is not simply in my head. It is also bittersweet, I was criticized growing up for things that I now know were outside my control. My lack of hand eye coordination that my dad would scream “Keep your eye on the ball”, when I couldn’t catch or hit a ball for my life. The fact that I had little to no endurance when trying to do Cross Country Running, no matter how much I trained for it. The fact that holding a pencil would cause sharp pain, holding a phone to my head would cause shooting pain in my shoulder and wrist. Fingers and toes turning white when shoveling snow, then pulsing in pain as I warmed them up. Having constant GI issues with nothing ever showing up in Colonoscopies or Endoscopies. Feeling tired all the time and having to push myself to not take a day off from work. Having lower back pain when walking for more than 500ft. My knees feeling stiff and requiring me to twist until they pop multiple times a day. Walking and randomly my ankle sprains causing me to fall down. Overcast days causing pulsating pain in my eyes due to light sensitivity. Waking up with random bruises on my arms and legs. When everything points to hEDS as the possible culprit, the massive web of issues begins to make sense. For most my life I felt like a hypochondriac, now I feel validation for the first time.

Wow! My whole life I've been gripping things oddly (pencil, tennis racquet, golf club..) I've always wondered about that & many other traits I share with u. Thanks for the post!

I had my annual with my PCP and was trying to communicate my list of things (I try every couple years hoping for some answerss), and he just made it seem like maybe I was depressed. I just said, “I guess I’m a hypochondriac.” He smiled awkwardly, and I cried the drive home. A few days later I start seeing all of these hypermobility and EDS posts. I’m so thankful they did an EDS awareness month! Otherwise, I don’t think this would’ve ever been brought to my attention… A week after my PCP appointment, I met with my orthopedic, and I asked him about hypermobility. He asked me to do the things on the scoring list, and he agreed that I’m hypermobile and that my joints are very unstable. I still don’t have an official diagnosis, but I’m finally hopeful. Chronic pain, fatigue, dizziness when standing up from bending over or sitting, IBS, Raynaulds, and headaches along with potential mast cell activation syndrome could finally make sense even though they didn’t seem related until now.

I probably had signs but my mom and dad just didn’t put things together, I would get” Charlie Horses” in my legs and flat feet, I would sleep in weird ways.

I am working towards getting a diagnosis as I strongly feel that I have hEDS as well. Your story sounds so familiar. I did also have hip dysplasia as an infant that required intervention. And strabismus that required surgery around 3 years of age. I don’t remember “struggling” to hold a pencil properly but strangely I did develop a big, weird callus right where I held the pencil “properly”. I have never seen anyone with anything similar. I do feel like all the things I experienced in childhood did not seem obviously related, and understand why no one put them together. I didn’t really even think I was “double jointed” since my brother was even more flexible than me! (He probably has it too) I also really didn’t develop any chronic pain or other life limiting symptoms like POTS until my early 20s

My daughter (now 16) was pigeon-toeing until the age of 5,GP said it was BAD HABIT:)))) She has Raynauld's, dental crowding,super soft skin,not much bruising. Keratosis pilaris,she was diagnosed with Iselin's disease at the age of 10,she was in and out of the emergency department with her ankle/foot so much that they used to ask if social services were involved in her care:( Her elbow has sublaxed twice,she has swan neck fingers and a severely jelly like mcp thumb joint . She is currently waiting for her referrals to see a rheumatologist, a hand therapist,a PT and a cardiologist. I am hypermobile with no EDS. Dad has no hypermobility whatsoever, no EDS.

Yes, bloody noses , knee subluxations , shoulder dislocations, trouble digesting fats , regurgitation all occurring around age 6-7

Crap, did you just describe my whole childhood?! Minus the toddler injury and the POTS at age 12, I’ve had pretty much the exact same experience. Anytime something hurt, though, I would just ignore it thinking I was just being a wimp. Largely I haven’t been believed whenever I’ve been sick or injured. Also I’ve never been assessed for hEDS, but I suspect I have it since my joints feel like they slip around a lot and click and snap and pop with normal movement. Most days, at least one joint hurts for a while, never very much, usually not for more than a few hours, and I never know which joint(s) it will be. Could be hip(s), shoulder(s), ankle(s), knee(s), foot bones, wrist(s), fingers, tailbone, pretty much anything. I’ve noticed rapid movements tend to make things hurt

the holding a pencil/pen differently really bugs people for some reason lol but since i draw so much it hurts to hold the 'normal' way 😝

I still haven’t found a comfortable grip on a pencil. It always hurt to write so I perferred to type. Not very flexable tho so shocked that I was hypermobile. All the sudden my joints kept subluxing to where it is so painful and I could get injured just switching positions and my ankles kept rolling over. All in my 30s and I’m like wtf. I did have the teeth crowding as a kid. They had to remove some teeth.

I had the exact same experience than you 😢❤

Yeah, I hold my pencil right at the very bottom so kinda weird. I also held up my arm in class with my other arm and switched hands a lot. I have mild scoliosis as well.

Do you have Asperger's with your eds veey common my first ussue at 5 was proctalgia fungax then ibs growing pains and spd of course comes with Asp and heds

Hypermobility spectrum disorder develop scoliosis

Hello...di...I am indian ...I have eds ....my childhood symptoms is ...rectol prolapse .. ..... .... I am not talk floantly English plz understand .. me .....I am 26 years old ....but I am not married ...so