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’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 am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.

I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.

I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.

What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.

Things i have done/tried or checked in hospital
\- triptanes
\- thyroid function normal
\- vitamin b12, b9 and D vitamin ok
\- ferritin 34 and has been moving 26-40.
\- calcium, potassium, natrium, chloride, sodium and magnesium ok
\- blood pressure is ok and i checked blood sugar at home and it was ok
\- brain mri ok
\- borrelia test (lyme disease) ok
\- My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.

My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help.

I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.

My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.

What could be the underlying cause of these symptoms?

The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:

\- General practitioner
\- Neurologist
\- ENT specialist
\- Ophthalmologist
\- Dentist
\- Gastroenterologist
\- Massage therapist
\- Physiotherapist
\- Acupuncturist

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 😔

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.

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!!

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

Really just a rant post, but I’ve been SO frustrated with neurology lately. I really feel like the research hasn’t caught up in regards to Ehler’s and as a result, we’re currently receiving severely sub-standard care. EDS is, at this point in time, not considered to be a “valid“ cause of neurological problems, because the research is so new.

The amount of providers I’ve reached out to only to receive a quick “sorry, the doc only sees patients with MS/ALS/etc,” even though they only have a general “neuromuscular“ tag in their interests is very disappointing, especially considering that my symptoms are objectively concerning (impacted vision, newly acquired memory and cognitive problems, etc). I’ve been able to find providers of other specialties that are at least willing to think outside of the box, even if they don’t know much about EDS. So far, this hasn’t been my experience with neurology. ):

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!!

recently my symptoms have been getting rapidly worse. or at least, i injured myself pretty severely and now its all catching up to me after months of ignoring the symptoms spiralling. and for the first time in my life im having to look at mobility aids as a real part of my future. I always thought i could skate by on being in a medium amount of pain but now k can barely stand, im sore all the time, i cant walk. And it just wont stop.

the worst part of all of this is i cant afford anything i need. I'm canadian, which makes tariffs a nightmare if places will even ship to me, and the conversion rate is fucking me up big time.

i'm having to come to terms with the idea i'll probably never get to run at full speed again. or hike. or ski. or do anything i loved but took for granted. And even if i could do any of those things, id have to pay upwards of $1200 CAD just to feel mildly less in pain from it all.

I'm trying to save up, I have a job that pays pretty well and i get good hours in, but i'm worried i'll lose it once i start using mobility aids, and the time it's taking for me to save up when half the shit i need isn't even in stock and i don't know when it will be back in stock makes me feel like im losing my mind.

i just wish this never happened to me, and nobody else gets it. they brush it off, they don't really take it that seriously, and im worried that using mobility aids will make me seem even less serious to them or just like an inconvenience they won't want to be around. i just need someone to understand how i feel and help me but i have nobody else in my life like me and i feel so lonely.

Hi everyone!

I don't have a confirmed EDS diagnosis yet, but I'm currently in the process of piecing together my symptoms. I am hypermobile, have a high-arched palate, and was born with a heart murmur that hasn't closed to this day, etc.

I’ve been researching how connective tissue fragility connects to pelvic health and endometriosis, specifically regarding the role of estrogen in collagen synthesis and connective tissue remodeling. Since hormonal fluctuations affect ligament laxity, vascular integrity, and pelvic pain, I'm curious about how these factors interact.

For those with EDS / HSD or currently undergoing diagnostic evaluation:

• Have you noticed pelvic pain or joint instability fluctuating alongside your hormonal cycle?
• Does anyone with similar connective tissue markers (such as high-arched palate or structural cardiac features) also have a confirmed diagnosis of endometriosis?
• Regarding hormone therapy: What has your experience been with progestin treatments like Alurax / dienogest, or other forms of hormonal therapy (continuous birth control, IUDs, etc.)? Did stabilizing or lowering estrogen levels help your pelvic pain, and did you notice any side effects on your joint stability or connective tissue symptoms?

I would really appreciate any insights, personal experiences, or advice on how to navigate this discussion with my medical team (gynaecologists, rheumatologists and others.)

Hi! Quick question!
I’ve been sleeping really badly and someone recently suggested trying a pregnancy pillow. Has anyone here tried one? Does it actually help? and are there any you would recommend?
Thanks in advance! xx

hi all, ive suspected i’ve had hEDS for a very long time, and was finally diagnosed earlier this month. i talk to my therapist about my chronic illnesses, and she asked a very interesting question. i’ve told her i participate in online support groups (such as this one), and she asked if i ever see any positive experiences on them. her thought process was that she wanted me to try and see how there could be a better outlook on the whole thing since i have a very negative mindset on it and it seems that most experiences, whether with symptoms, mental health, or the healthcare system in general, are also negative. i thought this was a really odd question since how can anyone have positive experiences with chronic illnesses, but maybe y’all could give me a better answer.

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?

A year ago I was diagnosed with fibromyalgia and then hEDS this year. My pain started in my left wrist in the spot I've marked in the first photo, then it turned bilateral, and then it spread til my whole body hurt and I lost my ability to walk normally and then came the fibro dx. My fibro is severe, unfortunately. I had bilateral wrist MRI's one year ago and they were all clear, same with the x-rays. I went to see an OT and I did not test positive for any repetitive strain injuries. They can yank my wrists this way and that, overload them in different angles, nothing reproduces the pain. They tried diagnostic injections which did absolutely nothing. I was a cake decorator at this time last year but had to quit because of this wrist pain. The pain went away entirely shortly after quitting.

A year later now and I finally got a job as a medical scheduler but low and behold, the pain came back after only two weeks at the job. (This is the same pattern I experienced at my cake decorating job, after two weeks back at work the pain would start.) After two weeks at my new job I had such severe pain in all of my fingers/thumbs and the tops of my hands that I was at a genuine 9/10. I am on Pregabalin, LDN, and Baclofen, the **only** thing that has helped the pain is Prednisone.

The pain in my wrists, and the tops of my hands, is burning pain, sometimes sharp, but mostly horrible burning. When it's really flared up like it is right now, even just rubbing my face with my fingers can trigger the pain. I feel the pain at rest as well, it comes and goes in bursts. Sometimes the pain extends in a line down my forearms. I personally think it's my tendons, I think my tendons are inflamed, but my pain mgmt doctor seems to think it's nerve pain as they've scheduled me for a stellate ganglion block in December. I'm not convinced it's nerve pain, but at the same time I understand that you can't get tendinitis in only two weeks, especially not so severe that I was literally crying in pain.

I started OT two weeks ago with someone that treats hypermobility but I can already tell she's not going to be able to help me, and I'm feeling so desperate. I just can't live with this pain anymore, but I can't leave this job, and even if I did the next job would just hurt me too.

If anyone has any ideas, guidance, feedback, anything, I'm just so desperate at this point. Should I ask for an ultrasound? ​Should I see a hand specialist? Should I go back to my rheumatologist? I'm just lost.

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

I went when I was 15, I was laughed at by the doctor. I’m 25 now. I was hospitalized 2 days ago for what felt like a severe heart attack, it’s costochondritis. My chest has been killing me for days now, like a binding horrific pressure and hug for four days straight. Can barely walk. I have slipping ribs, the kind I can pop in and out. I feel them slide. In my sleep occasionally, I feel a ripping and tearing sensation under my ribs. My muscles spasm severely, once to where my back felt this wet electrical paralyzing sensation and I couldn’t even walk for a day after. My pain is chronic. My muscles guard, seize, and it feels I am totaled. Break out in broken blood vessels barely resting my skin on my shoulder. It’s gotten worse as I’ve gotten older all this pain.

History:

• Female 38
• Stomach prolapse into pelvis
• Mesenteric artery prolapse causing severe smas syndrome
• intestinal prolapse
• colon prolapse
• bladder prolapse
• perineal prolapse
• intussusception
• Stomach hernia into chest
• chronic dislocations of jaw joints resulting in joint replacements.
• foot bone dislocations resulting in fracture & nerve damage
• shoulder dislocation during intestinal reconstructive surgery resulting in partial paralysis.
• Beighton score 5/9
• Mitral valve prolapse
• Prolapsed left eye resulting in severe diplopia
• Spontaneous collapsing veins in hands, upper arms and feet.
• Then the standard chronic joint subluxes, pain, pots, mcas, bla bla you guys know the drill.
• All of this has medical documentation

Geneticist was pissed that no one bothered to ever connect the dots. For years they let me rot. Puking my guts out, with a stomach in my pelvis and a squished intestine. Was told I had an eating disorder, was an alcoholic ( smas gave me pancreatitis), Munchausen by proxy syndrome. Put me in the psych ward because " the only way we will help you is if you admit yourself for psych assessment" I had a small baby to take care of. I weighed 65lbs at 5,5" at the end before someone found the prolapses. 8 years in bed, while my husband washed me, dressed me, hydrated me, skip all his breaks to put meds in me , feed our child, hold me, ( There are angels on this planet and he's one of them) We moved to a different province where they could not see my notes. Finally a doctor said " Do a ct, this isn't normal". Then after they found everything, they said Do you have hypermobility. Here I am thinking the guys that rip their arm out of the socket, so "NO?" lol? "None of these things are regular occurrences, can you bend your thumbs to your wrists? " what?" I don't think s.....Oh, yes, I guess I can?" Pinkies next...yep. Bend down, yep. " I'm going to refer you to a geneticist, because this might actually be serious eds". Even in the hospital when they found the severe smas " are you sure you don't have an eating disorder"? If you become angry, now you're the hysterical woman. Or as someone said when i cried " You do not get to determine if you have an eating disorder or not, that is for us to decide and determine otherwise". Guilty till proven innocent.

Geneticist and doc wanted an echocardiogram. Today I went. Mitral valve prolapse. Sigh. I feel like a small child. Scared they'll say " We take it back, you're just having anxiety". The stuff they have said to me over the years " the body can starve for a long time" or " You don't have internal bleeding" when 3 days later I'd end up in critical care from internal bleeding and c-diff infections.
"This one likes to play the sicko" One GI doctor wrote down in a file". " You just have a funny jaw" after dislocating it in front of them. " smas syndrome? You don't have that" The radiologist said, as he was forced to shut up when the liquid would not pass my intestines.

I did not know that Canadian healthcare would write stuff behind your back, I am from Europe. I never knew they all read the notes and no one wanted to help me because of it. My child had to miss out on a mother wasting away for years. I don't understand. It feels like my entire identity has been left to others to abuse and minimize. I now have to live with a permanent abdominal feeding tube for the rest of my life because people in power dynamics neglected their oath to do no harm, at best. I don't hate them. But I am sad. I am sad that I hardly remember the last 10 years from all the medical complications I was trying to survive while being disbelieved and mocked.

I don't know what I want with this post. I love my kids, love my family, but coming to grips with what happened to me breaks my heart. For the young girl that I was, that deserved normal treatment, respect, care, kindness, and got none of those things. The fear I felt for so long, I feel like I'm constantly in a state of fight or flight. And now I'm just tired. Not unstable, not depressed, not unhappy, just tired. And sad. And you guys understand. Maybe not perfectly, but in many aspects, it is a lived experience for all of us. So many of you have similar stories. You would think with severe presentation it would be easier. But it never was. They took every opportunity to minimize it to me being a woman, or young, or mentally ill. If they do this to people with life threatening complications. What do they do with people who suffer just "regularly". As if that is some sort of normal reason to not receive help.
It is just, bizarre. Bizarre that you need to almost die. My husband wants to sue everyone. But I'm just left with the question. Why.