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Ehlers danlos syndrome

Oct 05, 2015 4:45 PM

I have Ehlers danlos syndrome type 3 it is a connective tissue disorder that effects everything from eyes to joints joints to organs and organs to mussels
It causes a lot of joint pain and I also have nerve damage in my stomach which always hurts I am always on pain anybody else like this.

Oct 05, 2015 5:19 PM

Hello, welcome to the wonderful, zany, friendly, understanding community family. We are a tigh knit group of people who will always be available to you why you need us. You will never be alone and it's a really refreshing feeling to chat with folks that understand you and the pain that you are in. I pray that you get the imformation and support that we all so desperate need. I'm sending you "gentle" {{{Hugs}}} to give you support, information and understanding you need. Keep us posted as to how you are. 🌻🙏🏻

Oct 06, 2015 6:50 AM

I have Eds too
Struggling with subluxation a lot at minute exhausting isn't it just heartbreaking that I passed it on to my boys 🌼

Oct 06, 2015 8:16 AM

Hi Hello! I too have EDS 3. It's been two weeks since I woke up with a dislocated shoulder. I am two whole days out of the sling. With it being difficult to type and my tablet being a ninny I haven't been on here a whole lot in the last two weeks.

But I wanted to pop in and say Welcome to the group! As Alwayz said, we all understand each other in one way or another. As much as I hate for anyone else to have this disorder, you have found a great place full of wonderful and understanding people. Now that my shoulder is finally starting to let me do things again, I hope to be more active, at least until the next problem pops up. :) Hoping you have a nice light pain day!

Oct 08, 2015 4:36 AM

Hi!! I don't have EDS, but I have a connective tissue disorder that is really similar to it. I have loeys-dietz syndrome type 4. It's more rare than EDS so I try to make as many friends who have similar disorders as I do. Have you heard of spoon theory? If not you should Google it.

Oct 22, 2015 4:34 AM

I have EDS too! New to this app but I think it will help when communicating with new doctors.

Oct 22, 2015 12:51 PM

Welcome to the community! I don't have EDS but many here do. Feel free to ask questions, offer suggestions, rant, cry, or laugh. No judgements. I trust you'll fit right in with the rest of us soon. I have lots of diagnoses that cause chronic pain, and that is what we atop share. Hugs & a prayer you'll find the support you need. 🙏🌼

Jan 10, 2016 10:49 PM

I have EDS type 1&2 (classic). I also have a chiari 1 malformation, which I has 2 brain surgeries for, a craniocervical instability, POTS and have delayed gastric emptying. I'm currently enrolled in pain management. I've had 23 surgeries since September of 2008. EDS is not fun. I dislocate everything, I have severe osteoarthritis in my knees and scars and bruises everywhere.

Feb 19, 2016 5:09 PM

I'm from Sweden, 38 years old Male with EDS-ht (type 3). Got a great family but one of my daughters have the same shit also.

Feb 19, 2016 6:34 PM

My partner has eds type 3, we just saw the first doctor to start the diagnosis and management path the other day. Welcome to the app

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