r/hypermobileEDS

I’m on the fibromyalgia/ heds spectrum, and ever since I’ve started doing my PT stretches everyday, when I do them now my back can crack like along 1 foot of my spine, or I’m stretching my neck and I hear crinkling plastic wrap in my neck or spine. I crack so fricken easy even when I’m not trying to!

When I first started, I was rolling down my legs from standing so my hands hung to the floor, and my spine DROPPED a good two inches. Ever since then, I’ve been cracking and popping and crinkling.

Edit: this is very validating! Thank you for the comments. It drives me nuts sometimes. Or sometimes when I walk, I can hear tink tink tink in the back of my head where my skull meets my neck, but only sometimes

Edit: do yall get migraines too?

Its so fucking uncomfortable i hate it so much

Hi! 18 F hEDS with 9/9 beighton scale.

I called 111 (uk non-emergency line) yesterday because my knee had its first subluxation.

Key points :

I subluxated my knee at 5pm - it had returned to normal position as it happened.

It was done by sitting down normally.

Now usually my subluxations are in my ankles , shoulders and hips. Which cause minor swelling for about an hour and a sharp pain as it happens that dulls down. What was differant about this time was that I couldnt straighten my leg afterwards. And at around midnight - my kneecap and surrounding area had swollen to about half the size of it normally added on top with my foot starting to go very cold and when i pressed onto my skin on the base of my foot it started to turn a dark red/ maroon colour. This being why i called 111.

After going through the checks with 111, they asked me to go to urgent care in the next 4 hours. When I arrived at 1:09am i wasn't triaged - instead they told me that I was going to see the doctor straight away without being triaged. So I waited until around 5am when i was seen. He felt the swelling, asked for my history , and then sent me off to an x-ray.

The xray came back clear - which is what I expected anyway due to the fact that it had already popped back in. Due to it coming back clear - he said that I was fine and that it wasn't a dislocation (?). And told me to be more careful despite the fact I had told them it was just from sitting down.

My main concerns was that nobody checked the pulse in my foot due to it being cold (it still is going inbetween freezing and lukewarm temperatures). And nobody spoke about soft tissues in relation to hEDS as a probable issue - it was like they kept ignoring my condition as if it wasn't relevant. I was also given no brace or walking aids even though I am limping and struggling to walk or straighten my leg.

Am I right to be worried? I trust the hospital staff but I know how much hEDS is cast aside sometimes even in medical fields.

I’ve always had tendons rolling off my hands/feet since i was young. Its one of those thibgs you think is normal until you mention it to someone 😭

Basically i ran for the first time in a long time the other day, and i felt one of the ligaments on my left foot (i think big toe) ping. It went back after a few seconds, however last night it rolled off again, and hasnt really sat back right since. Its been almost 24 hours, and usually it resolves itself within minutes. I think i may have stretched it out, so now it is almost constantly not in the right place (very painful). I cant put a lot of weight on my foot at the moment. Does anyone have any idea what i can do for situations like this as i presume it will happen again. Its hurting to touch the tendon so its definitely not a bone thing. Bracing? Tape? A prayer? I feel like i dont really see others talk about this kind of stuff.

Update: its been a few hours. It settled down but as i stood up to walk back from the pub it PANGED right back out of place again. The most painful one yet and its still out of place.

Hi, question for any hEDS ladies out there - I had an IUD inserted for the first time earlier today. I'd been told there would be almost no pain and was even cleared to go to work this evening. I had extreme pain throughout the entire procedure and had to call out of work an hour before my shift because I could barely walk from the pain. I also paid for the laughing gas and only used it for about a minute before it made me black out and the doctor recommended I stop. It's been about eight hours since I had it inserted and I am still in extreme pain even with the meds the doctor gave me and two doses of Midol (6 hours apart).

Anyone else had a similar experience? I'm trying to figure out if the reaction is because of my hEDS or from something else (I also have endometriosis and PCOS, but I'd been told neither of those should effect the procedure).

Edit: Thanks for all the responses. This was an OBGYN that I've previously had really good experiences with, and they did give me muscle relaxers before the procedure but I'm not sure how much they helped. I'll definitely be careful the next week or so and do a lot more research if I ever decide to get another IUD once this one is done.

I'm genuinely sorry to everyone else who has gone through this. The fact that this seems like a fairly common experience in women with IUDs and nothing changes is absolutely infuriating.

I have hypermobile EDs and I am on a waiting list to see a physician who specializes in it. Unfortunately the waiting list is a year and half long.

What is everyone using for knee pain and joint pain? I am already on 10mg Oxycodone and a 5mg/hr pain patch for other issues I am having. It is not even touching the joint pain. I am allergic to NSAIDs so I feel like there is almost nothing I can take to help the inflammation and pain.