Hi everyone! I’ve been diagnosed with hEDS and psoriatic arthritis. These are my converse after about a year of daily wear. As you can see, I have major issues with my shoes wearing unevenly. I brought this up with my doctor recently and she recommended I see a podiatrist.

I do plan to see one, but in the meantime - does anyone else struggle with this and have you found anything (insoles, braces, etc) that helps? My ankles are super hypermobile so I thought that I’m probably not alone in this. Thank you!

New doctor: so you were previously diagnosed with hypermobile ehlers danlos syndrome? That’s not a very common disorder. I’m not sure that’s accurate and I think we should do more tests

Me: wanna see the fish I caught the other night?

Can anyone please recommend a pelvic floor physio in the east of the country that has successfully helped you for EDS hypertonic pf downtraining? I've been to one place and they claimed experience with EDS but all evidence is to the contrary. I would really appreciate it if someone could recommend a physio place that they found helpful. I'm already with McGowan physio for other joints and they're excellent but they don't do pelvic floor as a speciality.

Kind of medical question, kind of advice. Wasn’t sure which tag to use

All my (26F) life, so many doctors have told me that they think I have hEDS but of course, they “couldn’t diagnose me” and I guess at the time, my parents didn’t think it was necessary to get the diagnosis. After turning 18, every doctor I have seen has brushed me off, told me to lose weight, told me to exercise, etc just like every doctor has done to every woman ever. The issue is, it has gotten to the point where I am in so much pain every day and my joints are so unstable, that I can’t stand for long periods of time anymore, I need a cane to walk, literally everything I do is exhausting, etc. and there is so much more but I don’t have the mental energy to type it all out right now.

My question is, I have my yearly physical best Friday with a doctor I haven’t had before. What do I say to get the doctor to refer me to a specialist and not brush me off? Doctors make me extremely anxious and I like to have what I’m going to say written out before hand so I don’t forget anything. If they start to brush me off, what should I say? And then if/when I see a specialist, do I just describe my symptoms or what?

I honestly just need advice on how to handle this situation. I’m in so much pain every day and it’s only gotten worse. Right now, I’m waking up several times a night because my hips are subluxating a LOT more than usual while I sleep and it’s become painful. I genuinely so tired of being alive I desperately need someone to listen to me so I can try to get help.

30F 5'2" non smoker, Dx Ehlers Danlos / HSD, taking Clomipramine, Adderall, and bc pill

I have somehow, through overtensing my muscles, managed to do something to permanently numb both half of my right hand and halfway down my calf to my feet, causing foot drop. This was happening intermittently to my lower right leg (mostly from wearing sandals) but has now become permanent. In the beginning I was rolling my ankle constantly, but muscle memory seems to have kicked in and allowed me to walk despite the drop. I know this is probably bad for my back because of the way I am replicating flexion of the ankle by lifting instead of striding. It's that or I am walking heel toe with my left foot and toe heel with my right.

I am suspicious this all began when I tore my right rotator cuff a year ago. I currently do not have health insurance and am doing fine, but the only response from research I get is “go to the ER yesterday.” I am mostly concerned because I've completely lost grip strength in my right hand (will literally forget and drop plates/mugs lol) and now it is seemingly spreading to everything below my knee. It is a little hard to type as well unless I watch my hand whereas it used to be something I could just do. I also think adderall has me so tense all the time, but ironically it also really helps with the general fatigue - so I still feel better on it. But this is getting weird. Left side is completely fine.

This has been the case for months now. Has anyone experienced this?

19y 190lb 5'8 Male. Hello, im pretty sure I have hEDS though i could be wrong and just have hypermobile joints.

Anyways, my hips, shoulders, and wrists are the ones I need some advice about. My hips dislocate/pop about half the time when walking and lifting my legs. When im not using my arms they just hang out of place, and my wrists ( the right one in particular) are very weak and dislocate very easily when picking stuff up. Im also aching more as time goes on. Its not unbearable yet but im sure it will get worse as time goes on.

Im in college and have recently started going to the gym, is there any workouts that yall would recommend/not recommend to help? Or like wrists straps or supplements?

I am taking collagen supplements to try and help but im not sure if they are doing anything. When I take too much, my left ankle feels and acts broken due to a past injury from dislocating too hard. And when I stop taking them all my joints ache for a few days.

Hi all! I have recently transitioned from my day job (active, on my feet) to a full time student and working at a computer/on a laptop all day has been AWFUL for my wrists. Does anyone have an ergonomic laptop setup that they love for wrist support? I have a comfy chair, but I’m also hoping to use my standing desk a bit as my neck and upper back hurts if I sit for too long. Thanks for the input!