Comments on: “My Muscles Feel Heavy”-How Children Describe Ehlers-Danlos http://jointpainrelief.com.au/my-muscles-feel-heavy-how-children-describe-ehlers-danlos/ Sun, 18 Jul 2010 23:56:18 +0000 hourly 1 By: Julia http://jointpainrelief.com.au/my-muscles-feel-heavy-how-children-describe-ehlers-danlos/#comment-29 Julia Sun, 18 Jul 2010 23:47:34 +0000 http://jointpainrelief.com.au/?p=165#comment-29 Hi Amy, Thanks for adding to our phrases list. It is so valuable to see how each person describes their experience. There will be others who will read your words and feel better because they will realise they are not alone. I appreciate you taking the time to get in touch. Best wishes to you and your family. Regards Julia Hi Amy, Thanks for adding to our phrases list. It is so valuable to see how each person describes their experience. There will be others who will read your words and feel better because they will realise they are not alone. I appreciate you taking the time to get in touch. Best wishes to you and your family. Regards Julia

]]> By: Amy http://jointpainrelief.com.au/my-muscles-feel-heavy-how-children-describe-ehlers-danlos/#comment-27 Amy Sun, 18 Jul 2010 15:04:09 +0000 http://jointpainrelief.com.au/?p=165#comment-27 Both of my kids have HMS and are dev delay with one having autism. My daughter says that she's tired alot, her muscles burn, her body hurts. I also have HMS and used phrases like my leg feels like it's about to fall off, it feels like it's not sitting right. Both of my kids have HMS and are dev delay with one having autism. My daughter says that she’s tired alot, her muscles burn, her body hurts. I also have HMS and used phrases like my leg feels like it’s about to fall off, it feels like it’s not sitting right.

]]> By: Brenda http://jointpainrelief.com.au/my-muscles-feel-heavy-how-children-describe-ehlers-danlos/#comment-25 Brenda Sun, 02 May 2010 01:26:55 +0000 http://jointpainrelief.com.au/?p=165#comment-25 This is great information for me. My son has Autism, mostly non verbal but is in extreme pain. One thing he does "say" is "my brain hurts". He has recently been diagnosed with Classical EDS after years of trying to find an answer to why he is in such severe pain. With his Autism, the doctors did not believe me and though I just didn't understand my son. Finally a diagnose. He just points to just about every join in his body at different times and says "hurts" as well as having EXTREME fatigue. This is great information for me. My son has Autism, mostly non verbal but is in extreme pain. One thing he does “say” is “my brain hurts”. He has recently been diagnosed with Classical EDS after years of trying to find an answer to why he is in such severe pain. With his Autism, the doctors did not believe me and though I just didn’t understand my son. Finally a diagnose. He just points to just about every join in his body at different times and says “hurts” as well as having EXTREME fatigue.

]]> By: Natasha http://jointpainrelief.com.au/my-muscles-feel-heavy-how-children-describe-ehlers-danlos/#comment-24 Natasha Mon, 19 Apr 2010 23:11:46 +0000 http://jointpainrelief.com.au/?p=165#comment-24 I have eds, and im now 17, they only way ive been able to describe it some times is: "It feels like my bones are bending and going to break" "Feeling Like My Fingers Need To Click (knees, Toes, Wrists etc)" And Feeling Very Weak, Like Just Piking Up A Cup Would Feel Like My Arm Was About To ~Break At Some Points I Hope I Helped I have eds, and im now 17, they only way ive been able to describe it some times is:
“It feels like my bones are bending and going to break”
“Feeling Like My Fingers Need To Click (knees, Toes, Wrists etc)”
And Feeling Very Weak, Like Just Piking Up A Cup Would Feel Like My Arm Was About To ~Break At Some Points
I Hope I Helped

]]> By: SJRodgers http://jointpainrelief.com.au/my-muscles-feel-heavy-how-children-describe-ehlers-danlos/#comment-7 SJRodgers Sat, 13 Jun 2009 16:24:01 +0000 http://jointpainrelief.com.au/?p=165#comment-7 You've got a great idea! I'd like to recommend resources where you can find more parents so you can survey a wider range of people around the world. www.ednf.org (Ehlers-Danlos National Foundation in Los Angeles, California, USA) www.chiariconnectioninternational.com (Chiari Connection International [CCI], based in the US. Since 13% of Chiarians have Ehlers-Danlos, you'll find a lot of parents of Chiarians who also are dealing with EDS. CCI has an online parent support subgroup through Yahoo Groups.) There's a Canadian EDS group called CEDA also accessible through Yahoo. I wish you all the best on your project. You’ve got a great idea!

I’d like to recommend resources where you can find more parents so you can survey a wider range of people around the world.

http://www.ednf.org (Ehlers-Danlos National Foundation in Los Angeles, California, USA)

http://www.chiariconnectioninternational.com (Chiari Connection International [CCI], based in the US. Since 13% of Chiarians have Ehlers-Danlos, you’ll find a lot of parents of Chiarians who also are dealing with EDS. CCI has an online parent support subgroup through Yahoo Groups.)

There’s a Canadian EDS group called CEDA also accessible through Yahoo.

I wish you all the best on your project.

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