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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

Jul 27, 2019 1:44 PM

I have Ehlers Danlos Syndrome types 1, 3, and characteristics of type 9

Aug 07, 2019 12:40 PM

In so much constant pain.
it's unbearable
I just want it to stop.
We think my mom, sister, and I all have EDS.
My sister will know for sure in a few weeks, and I'll know by the end of November.

Current biggest issue for me is an intense burning pain through the fascia in my entire body. Nothing stops it. It zaps all of my energy. especially in the heat.
Also have issues with sy kneck, both wrists/hands, both knees, right side; jaw, shoulder, elbow, wrist,hand, RIBS (currently have ribs dislocated in 11 different spots), hip, ankle, foot.

Pretty much every joint on the right side of my body is Very messed up, and a few of the ones on my left are messed up

Aug 24, 2019 12:14 AM

I also have hEDS. I seem to injure my left side more than my right. I've had my left knee, ankle and wrist reconstructed. I've separated my left shoulder, have a 32 degree scoliosis and had a hysterectomy for prolapse all because of awesome collagen. I was also born with a dislocated hip. I throw something out hourly which is a struggle but I can still hold a full time job and go to the gym a few days a week so I'm super grateful for that. I know it could be a lot worst.

Aug 24, 2019 7:30 AM

Hi, EDS here too. I'm trying to collect data for my doctors.

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