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Mar 24, 2017 11:07 PM

Hello community,

I have been finally diagnosed with a disease known as benign Hypermobility joint syndrome and musculoskeletal joint pain caused by Hypermobility in every joint of my body. I'm 12 and suffering of pain, dizziness and insomnia. No child should bear this. Any suggestions to ease my pain?

Mar 24, 2017 11:32 PM

I am sorry to hear this . I agree no child should have to bear this . I wish you good luck ☺ preyers are with you 😊

Mar 25, 2017 12:30 AM

Thank you WestrenGirl I appreciate your prayers.

Mar 25, 2017 7:20 AM

Lifeonpaws
Love your name btw. Am so sorry you are dealing with this. :( the people here live all around the world so it may take a bit to get answers. I hope someone can help with suggestions. While I don't have the same diagnosis as you we all understand living with pain. I was 12 When my fibromyalgia started. One thing I learned over the years is that I can't let Fibromyalgia define who I am. Its something I have not who I am. Hope that makes sense. :)

Hoping you have a great weekend.

Mar 25, 2017 8:31 AM

Good morning Lifeonpaws! It's 9:30 am here in Western New York and I am just getting up. I have hEDS (other wise known as Hypermobile Ehlers-Danlose Syndrome. I completely get where you are. Give me about half an hour to get some coffee going and get switched to my computer so it's easier to type and I'll tell you some of the things that have helped me survive to be 46 years old with hypermobility. :-)

Mar 25, 2017 9:42 AM

Okay, I'm back and a little more awake now. :)

My right shoulder has been subluxing and dislocating since I was an infant, so please don't let doctors or anyone else tell you that hypermobility doesn't cause pain.

I'll be honest with you, as I don't know any other way to be, hypermobility while cool to gross your friends out, sucks. It's painful and it's uncomfortable. You're scared to move because it can make you hurt even more when some joint decides it's bored and doesn't want to be in place anymore. I wish I could say that it will just magically disappear (wouldn't that be great!) , but sadly it's here to stay. :( But there are things you can do to help. One of the most important to do and so much better to start when you are still young, is to work on building up your muscles because they are going to have to do the job that your tendons and ligaments were designed to do.

In other words your tendons and ligaments are not holding you together like they are suppose to, that's why you are hypermobile. (That's why you can do all those cool things to gross out your friends) But trust me when I say STOP doing those cool things! Think of your tendons and ligaments like a rubber band. When it's new it's a stretchy and snaps back where it began. But what happens to that rubber band when it gets old? It gets dry and brittle and it loses it's stretch. It doesn't snap back anymore, but breaks instead. That's what our tendons and ligaments are like, that old worn out rubber band. So we have to teach our muscles to take over.

Without knowing just how hypermobile you are, I don't want to tell you to do something that is going to hurt you so please don't do it if it hurts! Do take notice how you sit, stand and walk. Try to keep your joints from "locking" in place. for us when we "lock" a joint in place we are over extending (going too far) with the joint and stretching it out more and making it even more stretchy. (Remember that old rubber band?)

1. Pay attention to where your joints are, don't hyper-extend them (no more "tricks" to gross out your friends)
2. Long soaks in a hot bath, I've heard people say to use Epson salts, I haven't tried it yet. (When I was your age 2 hours was my average soak) This really seems to help the achy feeling
3. light weight lifting (you can even start with a can of soup if you don't have weights) This makes the muscles stronger so they can do the work of your tendons and ligaments.
4. If you have bracing for some joints wear them when you are hurting. Don't wear them all the time, your muscles can become dependent on them and get lazy. If they become too lazy they won't hold your joints like we are trying to teach them. (Except if you have custom insoles in your shoes, do wear these all day, every day)
5. Muscle rubs (Ben-Gay, Max-Freeze, Icy-Hot) are wonderful for sore joints, but can be smelly. :)
6. If an activity causes pain, STOP the activity! You can always try it again on a different day, but don't try to "push through the pain" as you can cause even more damage to your joints.
7. Don't worry about what you "can't do", enjoy what you can do!
8. Have someone you can talk to about anything, especially how you are feeling and if you are in pain.
9. Be kind to yourself and other people, a positive outlook helps in more ways than you can believe

I'm sure others will pop in and give you more ideas. I'll probably think of more later too.

Mar 25, 2017 9:45 AM

Thanks for the suggestions ScaryAnn my disease is actually the sorta new name for yours I think so.

Mar 25, 2017 10:02 AM

They are very similar. At one point they were considered the same, but they came out with new criteria last week that is suppose to separate them again. It gets so confusing when they change things, but as my eldest brother says: "It is what it is."

Hope you have a no pain day, at the very least a light pain day. :)

Mar 25, 2017 10:04 AM

Ok thank you very much.

Mar 25, 2017 6:47 PM

In the Ehlers Donlar thread there is another young person - I think she is 15? Who is also dealing with this .. You might check out that post and reach out to her as well.

Mar 25, 2017 7:23 PM

Hey! I have EDS too and I'm 15. Its really easy to get down on yourself or feel depressed because we are only kids and kids should go through this. I know what it's like to not be able to keep up with friends or miss out on family events. A lot of the time it feels like we are letting others down or we aren't good enough. Don't listen to those lies though. You are amazing and don't let anyone else tell you otherwise. Yeah, it's really hard having an invisible illness and being so young. But we don't let that stop us because we're warriors. We may not be able to do the things other people can do, but that doesn't change who we are. We fight through the pain no matter what.

Something I find that helps me with pain are hot, relaxing bubble baths. Put some Epsom salts and maybe a bath bomb in and just relax for an hour or two. Also, heating pads help a lot. It also helps my back pain to sleep with a pillow between my knees. A good, low-energy exercise I like to do is swim. Not like swim laps, but just going to the community pool and being in the water. Nothing too strenuous.

Anyway, I really hope this helps. :)

Mar 25, 2017 7:29 PM

I ride bikes and walk to stop my pain and although I may seem depressed to my family but I'm just pulling through. I appreciate your suggestions but What are Epsom Salts?

Mar 25, 2017 7:31 PM

Um.. Epson salts are a theraputic thing. It look like regular rock salt, but it dissolves in water and relaxes you. I don't have the exact defintion though so you should look it up. Walking certainly does help.

Mar 25, 2017 7:34 PM

Ok-
I walked for a while today and I feel great, I just hope soon I can get a good doctor for there have been no promising doctors.

Mar 25, 2017 7:35 PM

Yes, it takes a while to find a good doctor. I hope you find one soon. A good doctor can help so much!

Mar 25, 2017 7:40 PM

Yes it really would take stress off me and my mother.

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