42 Comments

  1. Just following you had me saying "Wow! That's my daughter" I did more research and was more convinced she had hEDS. I think your location plays a big part of having a doctor that cares and listens. When we lived on the east coast they cared at Boston Children's. On the west coast you fall into the opioid field and they forget your other symptoms. Until you keep fighting by doctor hopping and it's like BAM! One diagnosis should have been enough but it seems EDS likes company

  2. I had so many of these things as a kid, and injures that happened for no reason, that got dismissed. I have 3 of my own kids now, and 2 of them have EDS, and I never dismiss their symptoms, my youngest daughter 13yrs old has it the worst she misses school a lot now, but makes it up, and she is no longer in PE, and has many other adaptations, for temperature and stress. My son is 16 and also has many adaptations, he is trying to heal from a major hip dislocation that had to have surgery January 6th. But they are both well taken care of. I'm the one who's really sick, not just with EDS issues, I also have a Neurological autoimmune disease called Cronic Inflammatory Demylination polyneuropathy or CIDP, and the multiple Comorbidities of both, I'm paraplegic and completely bedridden, my husband is my full time care giver. I had a doctor's appointment last Friday and got resslly bad news, my CIDP, is now involving my central nervous system, and I'm loosing swallow function as well as lung control. They are considering me terminally ill now not just Croniclly ill. I have about 2-5 years give or take. And I'm turning 4p in April, I'm niit worried about myself just my husband and 3 kids. They are what has gotten me through until now.

  3. Omg. So many of these were me as a kid too!! Especially having pain while writing, my handwriting is huge and loopy because of it and I can never write within the lines even today.

  4. Yes about the water! I remember right when POTS & ME/CFS (also have EDS) was starting in jr high and we had archery on the field in summer. I was WILTING. Felt weak, heart racing and soo tired, lightheaded some, and thirsty. But I would go to get water partly for the water and partly to get a brief respite in the air conditioned gym!

    Izzy, been checked for Lyme & co-infections? ME/CFS? EBV?

  5. Writing hurt me, too! My 1st grade teacher was so sweet, and bought me extra thick pencils. Raising hands was another problem I had! Did people giving firm handshakes hurt as well?
    My sister also has hEDS, and she had the nausea issues. I had to quit little league one summer when it was much hotter that year then usual.
    Doctors told me my POTS was because I grew too fast. (I'm 6'8" tall now.) I also have acromegaly, which made doctors think I had Marfan's. When Marfan's was ruled out, my doctors completely closed the book on connective tissue disorders on being a possibility. It took 17 more years until I was diagnosed with EDS.
    Flus would knock me out bad, and would take me almost a year to recover, it seemed.

  6. I was diagnosed with fibromyalgia in my forties, and was absolutely, genuinely shocked when the doctor told me most people weren’t constantly exhausted and in pain. I was so used to it that I thought everybody felt that way. It was very relieving to finally understand what was happening. I have been searching for effective pain management for the last 15 years.

  7. It’s so frustrating that I’ve had EDS all my life and am just finding out about it a 40! Explaines so much I have hypermobility, my hips hurt will randomly pop out when walking and cause pain. I remember that dumb sit and reach test they did in HS PE that I could never do because physically I can’t do it! Had a horrible 3rd degree tear giving birth to my daughter and took forever to heal! I bruise all the time and simple cuts will scar. I’ve passed it to my 9 year old daughter who complained of her knee dislocating I feel so bad!

  8. I have JHS I think. I recently injured myself in sep that I was supposed to recover from fairly easily from. Now all my joint hurts 😭😭😭 now I fall often and weak muscles that sprains or dislocated easily

  9. When you guys were talking about how you thought everyone felt like that it was so relatable! I found out I was celiac when I was 18 and I didn’t realize that people generally felt well. I would always feel sick after I ate but I thought that’s what happens when you eat so I never mentioned it because it happened almost every time I ate food. My immune system was always so bad and I always had some kind of cold and now I get sick once a year. I was very skinny as I child and I thought that I was just naturally skinny but I have no gained weight and I’m at a healthier weight.

  10. Early in the video i thought maybe I didn’t have EDS because the pain didn’t start until I was like 13 ish, but between heat intolerance, clumsiness as a kid, and everything else you two mentioned I still think it’s a very good possibility

  11. Thanks for making this video. I will be sharing it in my mom group so parents can be aware of these symptoms. Unfair for children to be suffering and doctors brushing it off. I think because its not commonly diagnosed its not something a family dr would first go to.

  12. Oh em gee! The knowledge I have gained from you 2! I've been taking notes for some things to discuss at my next doctor's appt., and so many things are coming together for me now….at 31 yrs old lol — thank you guys for sharing your stories

  13. OoOooh the growing pains 😣 for me… I had week ankles right out of the gate. Wore special shoes. Had to be put in ballet class at 3 for strength. The pain in my legs… it wasn’t until 15 sprains ankles 11 sprain wrists and then dislocation of my hip. A doc finally said I think she has Ehlers Danlos Syndrome. Oh the fingers with writing! Teachers would mock me, I had perfect writing but didn’t hold the pencils as the teachers wanted me too! My sons English teacher (it’s his second year in brick and mortar school..) his English teacher mocked him in class for holding his pencil wrong. As well picked on him for being home schooled. Less did she read his 8th grade teacher recommended him for her class specifically! Had an immediate meeting with her. And boy was she sorry. And changed her roll with my son IMMEDIATELY! He is now top of her class. I swear she was picking on him on purpose! And I proved my point in front of my sons guidance counselor. He as well has EDS.
    I have HEDS and VEDS. I’m 43 now. Fingers crossed I have more years ahead! I’d take another 30! 🤞🏻
    Dude shots made me violently ill! I was sick with every single cold ever single pink eye every single cold glue virus!!! Having problems with eating and digesting! I would throw up my meals like 10-20 minutes after eating. Had many scans and they would be like, 🤷🏻‍♂️🤷🏻‍♀️ the doctors that is! It wasn’t until just a few years ago… a doctor claimed me to have gastro parentheses I hope I spelled that correctly.
    Medical Mary is the only and I mean only think that helps me digest my foods! 🥰 awwww ladies it’s so nice you have each other!!!! I’ve never found anyone but my son to share our boo boos with, in person. Just online.
    What a treasure to have each other! Had a rough day yesterday and had to head to bed. But this video was first on my list to watch this morning with my tea!
    Good morning Izzy and Mrs.. 😉Jaquie!!!

  14. My parents just thought I was being lazy when I told them that I was dizzy or that my body hurt as a child. Also I live in the DESERT so like…..the heat is my absolute nemesis 😬

  15. I have h eds and my daughter has a heart problen called wpw. I just read that electrical problems are often found in kids of eds moms. TAKE THIS DISEASE SERIOUSLY PLEASE!!

  16. I started dislocating my knee around 12. About that time I was found to have Raynauds but I only got the eds diagnosis recently . I remember saying I thought I had arthritis at 7.

  17. EDS hypermobile/POTSie here! I enjoyed this so much! Lmfaoo at ‘my organ exploded, thats how Ifound out’ I love you two together! I never experienced chronic joint pain except with my right shoulder that would subluxate and get really sore sometimes. Although I totally relate to the pain of writing and raising your hand – I literally thought that was normal until watching this video!??? I thought I was just weak. And god the worst memories from my childhood in school all have to do with PE class. We were forced to run a mile almost every day in the hot south florida sun. I would always end up last with the most overweight kids in the class and I never understood why I had no strength or stamina or endurance and why everyone else could have fun in the sun meanwhile I was dying of exhaustion. I literally never had a childhood where I could run and play and be active like the other kids. Also clumsy as heck. Like I cant even drive…I thought maybe I had/have dyspraxia, didnt know that was an EDS thing either! Time to look it up. Thanks guys ❤️

  18. I didn't really get questioned by my doctors for my constant pains because I didn't really go to the doctors. But when I finally did around 16 I met my primary care in the urgent Care. I had given myself a concussion in dance from accidentally kicking myself in the head. My PCP knew immediately I was not normal. Even before then I was having issues with my knee during the grade and would later have surgery. She was a young doctor and knew eds. She brought it up to me one day when I came to her with my long list of ailments. She said she thought I might have it. She performed the Brighton test and I scored an easy 9/9. We did further testing to rule other things out but by that time I was throwing up every day and passing out every week. I remember when I fell upon eds looking for answers when I was in junior high. But I figured I wasn't experiencing anything rare all athlete my age in my area had at least two brakes that they would wear. I had gone through 5 by the beginning of high school just for my knee. I had bruising issues but the biggest tell was the waxy scar tissue from an accidental cart wheel into a metal fence. It was very transparent and you could see the pinkish white flesh underneath. People always confused it for a bruise. I remember being at Disney Land when I was 12 and we walked around for so long that I ruptured a large vein in my leg. I kept begging my mom to let me sit because I was in so much pain. It wasn't until I got home and dressed for bed did I see the dark black blue and yellow bruise from mid inside thigh all the way down to my foot. Never went to doctor for that or for a torn hamstring.

    My family could afford it but deep down my parents wanted a normal child. And with being adopted I had no family to ask about any conditions that might run in my family.

  19. I’m showing plenty sings of EDS and over been to the hospital many times but I’m always scared of being called over dramatic or stupid but with my brain is I’m trying to ingnor it because this could just be normal and something that I will deal with

  20. I was born with Cerebral palsy. I have muscle spasms so bad that they hurt waking me up from a dead sleep. I found a doctor that can help. That makes all the difference in the world.

  21. You could be describing my childhood back in the 70s. My mother was amazing. She was a nurse and knew some of my symptoms were not normal but most every one else dismissed it.

    Growing pains so bad that the pain was worse than post surgical pain. My father rubbed my legs every day. I got every cold going around and took longer to get better. Bruised enough that I was tested for leukemia. And was always fatigued. My teachers told my parents constantly that I was just not trying to write neatly. Thankfully my parents believed me not them.

    The heat intolerance, dizziness, GI issues and other pots like issues were so common in my family that it was just considered a family trait rather than a symptom.

    Now we know that it is likely we had mild eds going back generations undiagnosed in my family. I am the first one diagnosed likely because medicine caught up and mine is the worst case so far. We do suspect mine was worsened by antibiotics because I was on cipro often as a young adult for ear infections but this was before cipro got its black box warning.

  22. Hands up if you felt like they were singing your song!!! 🤚🏻🤚🏻🤚🏻🤚🏻🤚🏻🤚🏻🤚🏻🤚🏻🤚🏻

    Oh My Gosh!
    ✅ for extreme clumsiness & the dropsies
    ✅ failed out of ballet, which was to help with the clumsiness
    ✅ arm & shoulder pain when raised in class (who knew that wasn’t suppose to hurt?!)
    ✅ hand, fingers & wrist aches from writing AND typing (again, why did no one tell us it wasn’t suppose to hurt?)
    ✅ body & joint pains passed off as growing pains
    ✅ frequently sick
    ALSO:
    – Thyroid symptoms from a young age, not treated until 2009 (born in ‘66!)
    – W/ an enlarged goiter diagnosed 2004 – still never treated as my thyroid levels were always “within normal limits” despite the enlarged goiter
    – Goiter finally removed in 2013 after displaying both Hyper & Hypo thyroid symptoms (not a fun time sports fans, I was so sick I lost over 30lbs in 2 months & most of my hair!)
    – post surgery diagnosed w/ thyroid cancer & Hashimotos
    – I was sent in for Rheumatoid Arthritis testing after goiter removal due to on going symptoms & walked out with an EDS diagnosis instead! That was it, no further discussion & no treatment.
    – all this on top of the 2010 diagnosis of Chiari Malformation, also a lifelong illness not diagnosed in childhood; boatload of symptoms very similar to Hashimotos with one difference – severe migraines are the main symptom, lovely
    – fast forward to 2016 – surgery to remove portion of my skull to help with Chiari symptoms (had a suboccipital craniotomy) – – – where the surgeon total disregarded my EDS & ended up running into problems because of it
    – after recovery, because of surgery failure, diagnosed with Syndrome of the Trephined (basically I now have a hole in my skull) because they used my neck muscles to try & repair the holes that kept ripping in my dura. Obv that didn’t work & they finally used a patch
    – they also decided to work on the discs of my C1 & C2 as they found problems during surgery
    – second surgery 6 mo later to try & rebuild a portion of my skull because they needed to try & dislodge my neck muscles from my dura – it didn’t work. The hole is still there.
    – Did I mention I have spastic muscles on top of the EDS? Yeah, spastic neck & shoulder muscles now trigger migraines (like I didn’t already have enough) because of their attachment to my dura!
    – and while I had been diagnosed years ago w/ mild dystonia, I am now displaying symptoms of Parkinsons. Clumsiness & shaking to a whole new level. Tremors are normal symptom of Hashimotos & Chiari.

    Yay. Glad to see there are people like me out there. Glad you ladies at least are getting treatment, mine has been passed off due to changes in med policies. Thanks opiod epidemic, some of us have severe drug allergies & have found narcotics the only answer. All the while living in a high drug abuser area so going to the er or after-care clinics for assistance is a no go, treatment refused as I am seen as drug seeking despite having documentation from multiple providers for that exact purpose. I haven’t been to an er/aftercare for migraine assistance since 2005. Went in 2011 due to allergic reaction to something environmental – breathing is obviously overrate as they tried to make me sit in the waiting room with my throat & face swollen, hives everywhere, & I couldn’t breathe! So now I get to carry an epi-pen everywhere because they couldn’t pin point the allergen thru testing.

    I’ll stop now, thanks agin ladies for helping to make the rest of us to not feel so alone!

  23. Had mast cell issues since birth. I thought everyone itched like I did. It wasn't until high school that I figured out it was allergies. I learned not to scratch pretty early. But I itch all the time.

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