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Hypermobility Syndrome

Aug 14, 2015 12:23 AM

Hello! Im new to this, my name is lulu and im twelve years old, i have had oain for 1 and a half years already, but never thought anything of it. But my sister has rhuematoid arthritis. (RA) sos he was worried would have it, thankfully i didn't ALL my tests for it came back negative. :D but my rheumy told me i had JHS, Hypermobility Syndrome...So i was wondering if any of you had it so we can talk more about it, it would be nice. And im confused about EDS and JHS and zebras lol! Thank you for reading this! Much love, god bless you.

Aug 14, 2015 8:13 AM

Mangolooloo/Lulu, welcome to our community! I'm so sorry to hear you are suffering with this at such a young age. I don't have it, but several on the community do. I hope you'll find the support and answers you need her. Good luck and God bless! You'll be in my prayers. 🙏🌼

Aug 14, 2015 11:11 AM

Thank you so much! I'm sure i will find plenty of support here it seems like such a wondrful community! God bless you too.

Aug 14, 2015 1:01 PM

Welcome and really sad about the age you have to live with pain. I have a very young daughter and if she were to suffer at such a young age, I would be devastated. Please I'd you have questions do not be afraid to bring it here! Some doctors may diagnose you with nonsense issues but over here we do take you seriously, young or old. Take care mangolooloo

Aug 14, 2015 9:49 PM

Hi mangolooloo! Welcome to the community. JHS and hEDS a very, very similar. In fact many experts are now saying they are the same illness. I have hEDS and will try to help you with any questions you have. There are several of us here that have been diagnosed with JHS or EDS.

I am in my 40s now but I have been hyper mobile my entire life. I started dislocating my shoulders as an infant. I broke my arm just before I started the second grade and then my leg just before I ended the second grade.

I sprained ankles several times a year while in grade school and high school.

I'm sure you can do some cool "tricks" with your hands and legs and all, but even though it may now hurt now, please don't do them. When you get older it will hurt. When I was your age I had no idea what being hyper mobile would do to my joints, so I did everything I could to gross out all my friends.

I would bend my thumbs back to touch the top side of my arms, bend my fingers so they were straight up, put my feet behind my head, and a few other things. Now my body has had all it and handle and is giving out on me.

I don't want to scare you, because JHS and EDS affects everyone differently. Be aware how you are feeling each day and take one day at a time. :-)


Aug 14, 2015 11:59 PM

Hi mangalooloo. My daughter has been diagnosed with hypermobility and she is 10. It is genetic, which meansyour mum or your dad may have it too. I haven't had a diagnosis, but I know some of my joints have always been able to bend more than my peers and my cousin is double jointed, so she is a sufferer too. I have pain in my joints where I, too, freaked out my peers and my cousin has pains in her joints where she showed off her 'talent' as it was thought of at the time. Hyper mobility can be extremely painful from the onset, or it can develop over time. Look after your joints. Try not to over bend them. If you want to ask me anything, go ahead. You can send pm or on this thread. I hope that you get the support you are wanting here.

Aug 15, 2015 1:33 AM

ScaryAnn thank you so much! I already know that over bending my joints would be worse in the future, i am sorry about how bad your EDS is, thankful mine isn't bad yet and again, thankful that i haven't dislocated Any joint! But i think i have supluxated (i think thats how you spell it) my wrist and hip. And have a question for all of you. With JHS/EDS do joints pop when you move them a certan way?

Susan4 my mom or dad don' have it at all hehe and yes i will take care of my pretty little joints! And i hope all of you do too, thank you both a lot i didn't think i would get answers so fast! God bless you and good luck with your JHS!

Aug 15, 2015 3:14 AM

Growing up my docs said I had hypermobility. My joints just hurt. It was mostly my knees. I was in 8th grade and I went to all types of doctors trying to figure out what was wrong. In college my shoulders started to hurt REALLY badly. I had to sit out of school. I was in so much pain every second of everyday. It got so bad I couldn't do anything without extreme pain. I couldn't dress myself, open a door, shower, lay down, sit, etc. I moved back home. By the grace of God after 20+ doc and physical therapist, and an exploratory surgery that found nothing I found a doc that helped me. He did a bone capsule shrink on my shoulder. I woke up in the hospital and felt so much better. I haven't had pain in my shoulder again.

Aug 15, 2015 6:59 AM

You asked about popping joints, YES! I sometimes joke aout being a bowl of Rice Crispys. LOL My joint have been snapping and cracking for as long as I can remember. Thankfully most of those snaps and cracks don't hurt, some do, but most don't.

It is possible that your parents don't have JHS, somebody has to be first to have it, right? Sometimes our genes spontaneously mutate and you become the first in the family to have it. I got it from my Dad and I think my Mom as well. My Mom passed away in December 1994, I still miss her, I'm sure I always will.

I have a sister and two brothers. We all have hEDS to some extent. I'm the baby and even at 44 that still has it's benefits LOL. My Mom could touch the tip of her nose with her tongue. My Dad can do most of the same "hand tricks" that us four kids can do. He's in his 70s now and his ankles have gotten really bad. We all snap and crack when we move. It wasn't until the last couple of years that I learned that not everyone snaps and cracks when they move.

Aug 15, 2015 3:19 PM

Carla3, wow your poor shoulder! At least its better right? Thank god! Hopefully you can continue doing what you love(:
God bless you

Aug 15, 2015 3:27 PM

Yea ScaryAnn hehe i got answers already but thanks so much, my hip wrist and knee pop LOL, My knee popped rught now before i started typing hahaha and yes I'm sure my mom or dad don't have it, i am going to ask my uncle because he can pop his thumb in and out ...ew ._. And wow your whole little family has it LOL but my hip is the one that hurts when it pops lol thank you a lot! God bless you

Aug 15, 2015 3:52 PM

Welcome Mangolooloo I don't have it. I hate see someone as young as you are in pain. Where are you from? I live in Texas. I hope you are having a good day, this is a wonderful group of people who care for each other. You can talk about anything and you won't be judged.

Aug 15, 2015 3:54 PM

Hi, and thats good you dont have it. I live in pacoima california, and i can see that it is such an amazing group here! I feel really comfortable. Thabk you weezie12

Nov 12, 2015 3:35 PM

Hi lulu, I'm so sorry to hear that you're suffering so young, I started suffering at 14, so I know what it's like to start suffering young (I'm 16 now) I know it can be hard but stay strong and I'm only a message away.

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