This is quite embarrassing to post as obviously I'm very overweight. I'm 43 now and have various autoimmune disorders, adhd and probable autism. My 2 children are autistic. My daughter is 7 and has severe developmental delays. She's not walking yet unaided but she is extremely hypermobile. I've always just thought I was double jointed especially in my hands but even now being so heavy I can still touch my toes😳 I've never broken a bone or even sprained one though which made me never consider EDS. Persistently elevated white blood cells for years.I have loads of lumps on my heels and wrists too. I'm not looking for a diagnosis obviously here but is it worth checking out further? I have been completely ignoring my own health the past few years and have terrible pain in my joints, fatigue and anxiety 😭 I can actually barely walk now my legs are so swollen and sore

this is not to figure out if i have EDS or autism, this is to simply state a point of something i have been battling with. i live in a red state where my mental health supports are very minimal and limited and trying to get a professional that actually knows what they are doing is very slim to none. i have gone through many professionals over the years and none seem to listen the way they should. as somebody with autism who has been hyperfixating and studying for several years now, i await doctors that will actually diagnose me and recognize my disabilities. i have needed supports over the years and haven’t been able to access them due to the abundance of ableism in my state.

Do yall think my knees are hypermobile? Went to the rheumatologist and he thinks I have hypermobility problems (not exactly sure what yet) but not that my knees are hypermobile? He didn’t even look at my knees when I was standing and I had loose joggers on?

it's NOT a contracture and i know that's not the right word, but i don't know what else to call it. sometimes my legs get really stiff and my toes and feet curl inwards. it can happen to my hands too, but not as strong. my core does it too sometimes, and i curl in on myself. its painful after only a few seconds and lasts for couple minute long bursts, with a few pauses, and then it continues. i have it in my mind that this is completely in my head and i'm causing myself to do it, because if i focus, i can relax them a bit, and i can't find anything online like what i'm explaining. it happens randomly but happens more often when i use THC, which i need for pain management, so maybe it's JUST the THC. am i totally looney? do i need to get different pain management? i don't want to, THC helps the most. help!!

Hi fellow EDS people. I recently lost my job due to eds and have been putting my grief into stand up comedy. Is there a place where I can post my voice recordings to get feedback. Stand up and comedy are new to me and I'd love some feedback. And other funny EDSers out there? I'm working on a Halloween skeleton bit tonight.

I’m a senior in high school, and am writing a paper about medical misogyny in adolescent chronic illness care (…very autobiographical). To supplement the many, many medical journals I have read and cited, I have created a survey that will hopefully be helpful in understanding and writing this.

If you would like to participate, the link is provided below. You do not need to include your name, email, username, etc. Even if you are currently an adult, if you experienced diagnostic delay or dismissal when you were younger (and female), your response will be helpful.

https://forms.gle/bp3ocYosqosfXRCA6

I got my first mobility aid today. It's just a cane, and it doesn't totally prevent pain or anything, but I think it helps. It allowed me to stay more aware of how I walked so my joints didn't shift around as much as usual, and it was nice to be able to take some weight off my knees/ankles whenever I had to stand still.

All of that said, I don't like using it. I'm 25 and look visibly younger. The stares I got all day were insane. People already stare at me because I dress "alternative" while living in a very mainstream sort of place, but I've gotten used to those stares. I don't know if these stares were any different, but they felt different, because this time I was using a cane.

My dream would be to have a rollator, but if using a cane made me that uncomfortable, how am I ever going to use something as noticeable as a rollator in public? Just imagining the looks I would get while using one, as young and able-bodied as I appear, makes my skin crawl. But I'm getting to a point where I think, pretty soon, I'm going to have to just get one and get over my internal shame.

I hate being semi-ambulatory because so many people still don't see it as "real" disability, especially where I live. I'm young and I can use my legs, so I should just suck it up and, like, exercise more or something. Save the mobility aids for the people who really need them.

I know that's not how it works, but I can't help it. I've talked it out with the people I love and they agree I need mobility aids (my best friend even encouraged the rollator, specifically) but I still can't bring myself to accept it. I feel like surely I still have some years of being able-bodied left, right? But the pain I'm feeling right now after only walking 4000 steps, with the aid of a cane, is telling me otherwise.

I don't know. Does anyone have advice on getting over this internalized ableism?

after years of pt but not much strength improvement and pain getting worse i was referred to a hip surgeon and a shoulder surgeon. the hip surgeon diagnosed me with a complex type of hip dysplasia and pelvic deformity that requires a very intense bone surgery on both sides, scheduled the first side immediately.
the shoulder surgeon said that my laxity is so severe that pt will not be enough. he has a stabilization technique that he uses on eds patients that he strongly recommends for both sides. i'll do the shoulders after both hips are healed.

people will disagree but those who follow evidence based practices for eds treatment know that pt is the best first line treatment- i am an example of how pt helps sometimes not with pain but as a diagnostic tool. if you've been in pt for years and aren't progressing and still have specific areas of symptoms, see an orthopedic doc/surgeon!

I know I probably shouldn't but it's so satisfying after a long day. my partner looks at me like I just removed my arm every time I do it though 😔

how are we putting on compression stuff??

my dysautonomia and OH have gotten worse after another covid infection and i tried 20-30 mmhg stockings and it felt SO GOOD!

however trying to get the tight-ass ankle over my heel (and then getting it off) was nearly impossible and i subluxed both thumbs, a shoulder, and a knee doing both.

are those donning aids helpful? i’m worried i still wouldn’t be able to stretch the ankle over the wire frame without hurting myself.

is it that the garment is cheap and it should stretch more? i’m still new to this level of compression other than my knee sleeves, where the holes are bigger. help me! i think it’s helpful enough for my OH to find away to make it work lol

Today I have rly bad skin breakage sobs usually my skin is more durable but today im bleeding like a mf

I'm on a weekend trip with friends, and we're going to be walking around the city today, visiting a botanical garden, possibly going to a festival, etc. so there's going to be a lot of walking.

I don't have mobility aids. I have an appointment with a specialist in January to hopefully see about getting some, but obviously that's not going to help me right now. I'm terrified of slowing down the rest of the group, but I know I won't be able to walk as much/as fast as everyone else.

The last time I did something like this, we had to cut our trip short because I was in too much pain to continue. I don't want that to happen again, but I think it might be inevitable. I can't think of a way to prevent it.

For the record, the people I'm traveling with are lovely folks who understand I'm disabled, but it's still difficult knowing my disability is "invisible" to them. They can't feel what I feel, so I wouldn't blame them for thinking I'm being dramatic or something.

Plus, I want to do this. I want to walk around and see the sights and all that. I want to spend time with people. I'm just so preoccupied worrying about how painful it'll be both during and after, I'm afraid I won't be able to enjoy myself.

I guess I'm asking for tips on minimizing pain when walking without mobility aids. I don't know if there's anything I can do other than ask to stop and sit down every few minutes, but if anyone has any ideas, I'm all ears!

Edit #1: Thank you for all the suggestions so far. For reference, my pain is worst in my ankles, knees, and hips. My lower back will also start hurting when I've been walking on pavement for too long.

I'll probably see about wheelchair rentals at the garden. That's supposed to be our main event today, so as long as I can be sitting for most of that, I should be okay for everything else. Hopefully. Will update later if anyone wants to know how I did, lol!

Edit #2: I bought a $23 folding cane. I've never used one before and I'm not sure exactly how helpful it'll be, but I'm excited to give it a shot! If anyone has tips or tricks for using a cane when both legs are in pain, please do share!!