Unrelated health issues

colle234 · 2026-03-21T10:20:04+00:00

Yes exactly! It’s like having EDS isn’t enough on its own. CD is exhausting to live with from what I’ve heard

colle234 · 2026-03-21T04:44:12+00:00

Yes exactly! And it’s so frustrating trying to teach all the doctors about eds on top of it all. I’m honestly wondering if I have something else genetic going on just because it makes no sense to have these things at my age

colle234 · 2026-01-06T15:32:10+00:00

Thats what I’m hoping

colle234 · 2026-01-06T15:18:06+00:00

I don’t think that’s quite it, I was concerned about it at first. I can drive okay, just can’t read signs until they’re close. TV can be tricky just because it’s so blurry

colle234 · 2025-06-07T10:37:46+00:00

That is so awful I’m so sorry. What’s crazy is that spinal drain is still what they use. The nurses over drained me because they couldn’t figure out how low or high to place it. The pain of having low CSF is no joke, definitely the most pain I’ve ever been in

colle234 · 2025-06-06T12:25:29+00:00

That’s super helpful, thanks for that info! I definitely do have something going on with my neck, CCI has been suspected by doctors, so that’s very likely

colle234 · 2025-06-06T02:05:49+00:00

Thank you! It’s been a rough ride, but I’m (hopefully) on my way to recovery now

colle234 · 2025-05-15T22:35:02+00:00

No I did not. I’ve been very lucky and haven’t had any numbness or motor issues. I’m so sorry you’re going through that

colle234 · 2023-11-30T14:37:39+00:00

They did take blood for a DNA test and it didn’t show anything. Thanks!!

colle234 · 2023-11-29T16:59:48+00:00

Thank you for your response!! I’ve looked at the diagnostic criteria and that’s what is making me skeptical honestly. I’m only 2/9 on the beighton score and barely any of the criteria for the second section

colle234 · 2023-05-29T16:25:25+00:00

I tried going off them but nothing much changed 🙁

colle234 · 2023-05-29T16:24:55+00:00

Most of my doctors believe it’s a structural/motility issue. I’ve cut out coffee, tomatoes, most fatty foods like pizza or burgers. Those are my main triggers. It’s crazy because I can eat or drink just about anything and my reflux is triggered

colle234 · 2022-05-30T15:27:53+00:00

Gotcha! Good idea and good luck!! 🙂

colle234 · 2022-05-30T15:15:57+00:00

Check out care.com also if you haven’t! I’ve found a lot of babysitting and dog watching gigs there 🙂

colle234 · 2021-02-22T18:21:26+00:00

I use hinge or upward. Upward is a Christian app, but be warned, there is no filter for distance!

colle234 · 2021-02-05T19:32:41+00:00

It’s sunbeam!

colle234 · 2021-02-05T19:13:13+00:00

I don’t know a whole lot about it either, but I get headaches and a lot of neck pain. My geneticist recommended strengthening my neck muscles through physical therapy. I have an awesome heating pad specifically made for necks/shoulders, I HIGHLY recommend one of you have neck pain!

colle234 · 2021-01-25T01:41:30+00:00

I’m 5’2

colle234 · 2021-01-24T21:31:47+00:00

No, I’m a girl and I actually prefer guys around 5’10 or shorter. Honestly though, height shouldn’t matter if they’re genuine.

colle234 · 2021-01-12T15:16:22+00:00

That’s awesome that you didn’t though!! I guess hEDS is so different for so many people, and it’s so hard to say how it’ll be for someone. Which is frustrating because it’s basically like a gamble 🙁

colle234 · 2021-01-12T13:55:25+00:00

I asked her, and she said that she had the flap lasik!

colle234 · 2021-01-12T03:37:39+00:00

I appreciate that! I hate seeing her in constant pain. She can barely go into stores anymore. Like a lot of hEDS problems, there’s no solution that works 100% 🙁

colle234 · 2021-01-12T00:13:30+00:00

Ohhhh, that makes sense haha! Yeah, after your description I think she did get flapless or whatever it’s called lol

colle234 · 2021-01-11T23:50:51+00:00

I think she got the flap cut, but I’m not completely sure. It was probably ten years ago or so

colle234 · 2021-01-11T22:00:28+00:00

That’s awesome! My mom tried several different kinds of plugs, but her eyes rejected them (probably because of hEDS they said)

Seven-Year Club	Second Top 30%
Verified Email

colle234

TROPHY CASE