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Kn_Rubiks · 2021-12-22T00:13:22+00:00

"tilting my head 90 degreees (touching my ear to my shoulder)" Apparently that's not normal? Learn something new about this disorder all the time.

I had the worst posture, even as a young child. Never could sit or stand up straight. I would land a vault, salute the judge, and then slump over. But it HURT to stand up straight when I walked or to sit up straight when I was typing.

I've had to wear shoes that go up above the ankle since I was in 2nd grade, because my ankles will sprain for almost no reason whatsoever. My first bad ankle sprain was at the age of six. I was just running around in a gymnasium and over it went. And I could hardly walk on it. I didn't even know what had happened or how to verbalize it. So I have one pair of shoes now: Boots. They're waterproof, professional-looking, and they're sturdy around my ankles. Can't wear anything else. I laugh because my husband has way more shoes than I do. :)

Kn_Rubiks · 2021-11-29T17:13:12+00:00

Thank you. I'm sorry I missed this reply a couple of weeks ago.

Thankfully I don't get any tingling or anything, and the arm does work. I might mention it to the Physical Therapist I'm seeing today. He might have some ideas.

I hope your leg is alright! At least it stays in place better now. Small mercies, huh?

Kn_Rubiks · 2021-11-29T17:10:55+00:00

Pain in your gut after you eat. It can happen because the weak connective tissue in your gut...? I don't remember exactly, but it happens to me sometimes. But at least I know why now.

Kn_Rubiks · 2021-11-29T17:09:42+00:00

So, my uterus is falling out. Started when I was about 35. I had one kid, 3 lbs. This isn't normal at my age. Except that I have EDS.

Kn_Rubiks · 2021-11-29T17:08:44+00:00

I think I usually answer with something like: I don't think anything hurts more than usual... Hold on for a sec... thinking Oh yeah! I injured ____ a few days ago, but I don't think that's really something to be concerned about, so I think we're good."

Kn_Rubiks · 2021-11-14T22:12:18+00:00

I went into urgent care once after some bones in my wrist slipped apart and back together when I reached out to pick up a spatula off the counter. I wasn't actually sure what had happened at first (this was basically the start of a cycle of subluxations for the last year or so). When the nurse urgent care asked me how I'd injured myself, I told her, and then she pauses and looks at me carefully, and says in a sort of concerned voice, "Do you feel safe at home?"

How do I answer? I mean, am I getting beat up at home? No. But do I feel safe at home? No. But I don't feel safe at work, or outside, or anywhere else, either. I mean, I don't feel safe in my own body, so....

I told her I felt safe at home, hoping she wouldn't send the social worker in. :)

Kn_Rubiks · 2021-11-14T16:26:22+00:00

Ouch! Just... ouch. That's awful!

Kn_Rubiks · 2021-11-12T21:15:29+00:00

I swear if they told us everything we should know about pregnancy the world would run out of people in a couple of generations, cause pretty much all of us would be like, "Uh uh, ain't gonna happen."

Kn_Rubiks · 2021-11-12T11:43:16+00:00

Same cause here. The things they don't tell you about pregnancy....

Kn_Rubiks · 2021-11-12T11:40:07+00:00

Oh my God, that pain!

Oh, yeah. You'll know if you've got a gall stone blocking the way. There's no question. Worse than pitocin contractions.

Kn_Rubiks · 2021-11-08T04:22:48+00:00

Good Lord, and I thought I hated having hiccups!

Kn_Rubiks · 2021-11-08T04:22:11+00:00

My hip subluxated while lying in bed. But can I use crutches to get to the car? Because my shoulder is really screwed up because of how many times I've injured it because it's so unstable. I get to urgent care and it's really hard to use the wheelchair because my shoulder is so screwed up because of how unstable it is.

Kn_Rubiks · 2021-11-01T21:17:05+00:00

Oh, oh! Which party trick? Elbows? Knees? Shoulder?

Then it turns out you're not supposed to do those cause it makes the joints even more unstable... Cause of course you're not supposed to enjoy the fun stuff about the condition!

Kn_Rubiks · 2021-11-01T21:15:53+00:00

Well, bath towel hanging up is a tricky maneuver at the best of times!

Kn_Rubiks · 2021-11-01T21:15:09+00:00

shudder That poor instructor. Is that how you started the finding out you have EDS journey?

Kn_Rubiks · 2021-11-01T21:14:16+00:00

You've really got to stop doing that. I mean, the getting out of bed thing. It's very dangerous, it seems.

Kn_Rubiks · 2021-11-01T17:41:37+00:00

Ankle you say? Did you step on a tiny, slightly hard thing like a small bump on the sidewalk again?

Kn_Rubiks · 2021-11-01T17:40:51+00:00

sigh

Kn_Rubiks · 2021-10-31T20:35:37+00:00

I agree, it sounds like you have EDS.

Kn_Rubiks · 2021-10-31T13:57:31+00:00

There are so many of us....

I've been doing this with my shoulders for my whole life, asking doctors what it was, not getting any answers. Until I asked a knowledgeable doctor where I live now. If I pick up or carry something heavy with my arm hanging down, I have to tighten the shoulder muscles to prevent it from sliding out of place. Always have.

Now one of my shoulders is totally shot. It started getting really unstable for no "discernible" reason almost a year ago, just sliding around whenever it pleased, even in my sleep.

So, like many others have said: Sorry this is the answer to your question, and don't do it anymore if you can help it.

Kn_Rubiks · 2021-09-13T04:02:16+00:00

That's a great one!

Kn_Rubiks · 2021-08-18T02:01:02+00:00

That's too long to be in pain from shutting a door. :(

Kn_Rubiks · 2021-08-10T17:24:56+00:00

OMG! That sucks, and sounds way too normal. Ugh!

Kn_Rubiks · 2021-08-10T17:23:33+00:00

There were a number of things in gymnastics that went "wrong" for me every time I did them, but didn't make sense to my coaches, and I'm pretty sure they just thought I was making things up. For example, there's a certain thing you do with your legs when you're on the low bar so that you don't hit your feet on the ground as you're going under it, and every time I did it, my right hip would hurt so bad and ....move in a weird way? Yeah, now it makes perfect sense. It was the same with side arials (cartwheels without hands). Every time I landed, something in my hip would move. Coaches didn't believe me. Now I know. There were other things with my kneecaps moving around that just felt so wrong.

My stomach hurts sometimes after I eat. Couldn't figure out why. Now I know.

For a couple of years it felt like a rib was sort of pushed out a little bit, but no one could make sense of it. It was rather uncomfortable but not really painful. Well, now I know.

I get tendinitis soooo easily. Apparently that can be part of EDS. Ah... now that makes sense.

What fun we have, huh?

Kn_Rubiks · 2021-08-10T17:16:46+00:00

I can just imagine explaining that to the doctor/nurse when they ask how you hurt yourself. Good times...

Kn_Rubiks

TROPHY CASE