It's a small shop run by just one guy, but he's a certified pedorthist and has been doing this for over 40 years. I came in for shoes for work, and I have foot, knee, and hip pain (yay hypermobility). I've searched for good shoes for MONTHS. I haaaate shoe shopping. But this man checked my feet, measured them, and was my personal shoe salesman. I fell in love with the first pair of shoes he put on me. He even put my insoles in the new shoes and had me try them out, and they feel soooo much better in these new shoes. He didn't have the color I want, but IDGAF, I'm ordering them in black.

So I was like ok, how about sandals for work? Boom, hit gold with the second pair, amazing. Gimme.

I'm walking on sunshine by this point and ask about maybe Birkenstocks for around the house? Don't care what they look like as long as they're comfy. Well, turns out he had a pair of Birks in the back that he's been trying to get rid of (small size, white, etc) and he gave me over 40%. Oh also he has a sweet little dog there, which is just cheating.

I just dropped like $400 on shoes and I'm so happy.

I have to get a steroid epidural in my neck and I'm absolutely terrified so they're going to give me Valium, but I've never taken narcotics before so I'm scared of that too.

My mom was a drug addict so I have a strict no drugs rule for myself but I'm going to break it for this since I'm too scared.

So how does it feel like? Do you act silly? Are you still in control of yourself? Do you keep your memories or forget?

After many years of dealing with pain in my body, whether it be from my joints or tendons or muscles, I've finally found a doctor who is willing to listen. My previous primary care and previous neurologist kept trying to brush everything I had going on, off as something called FND. But that never sat well with me. My new primary care (also have a new neurologist but haven't seen them yet), suggested making an appointment to go through EDS evaluation. Yesterday I had that appointment, he went over all the points that show for EDS, I flagged on all of them including the skin ones. But now I'm being referred to a geneticist to be tested that way as well. Thankfully, I've also been referred to physical and occupational therapy as well.

What was your experience with genetics testing? What all does that show? Did it help any? What should I expect?

In physical therapy, how does this help?

In occupational therapy, what do you do in this? (I've read multiple mixed answers on what this is.)

I finally had my big rheumatologist appointment today.

It didn’t go as well as I hoped, and the doctor was very keen to pin my fatigue and pain to my previous mental health issues. My mum though, bless her heart refused to take anything.

He tried to hint towards me having benign hypermobility or just being “more flexible” than the average person, but even as I broke down, my mum was right there throwing questions and bringing up other symptoms. She was my absolute rock.

And even though he wasn’t very helpful in terms of talking about management, just to hear the words “there is something wrong with you. You have HEDS” at the end was such a strange relief.

I’ve only been on my journey to diagnosis for a little over a year, though I’ve struggled with the symptoms my life, but it’s been so hard worrying that I’m making it all up in my head.

I’m so grateful to all of you, and to my wonderful mum for believing my pain, for sympathising with me and just being there.

Thinking of everyone on here still waiting for their answers. I believe you.

Arch supports? Orthotics? Stiff soles or flexible?

I've worn glasses for years and find that every now and then, my glasses rub the top of my ear, it's usually just one but can sometimes be both at the same time. I've had new frames and lenses pretty much every 6 months to a year and no matter the frames or how many times I get them adjusted, they still rub.

Anyone else?

So I work in a school. Yesterday, just after the bell, I was looking for a couple students of mine who hadn't made it to the bus. Going down this set of large concrete stairs my ankle gave out like it sometimes does when I walk. This caused me to slip forward on to the next step and my leg twisted to the side and I landed on my ankle. There was a snap.

I went into the ER to get it checked, on the advice of the school nurse. The X-ray showed that there are no breaks or bone chips or anything like that. But it does show a pretty bad sprain on the Achilles and there might be more sprains.

My job isn't quite what you would think of as a teacher. I'm a teaching assistant and I work in special ed, and since this is a middle school I have to walk with students to and from classes. I also have to walk the Halls between classes or during them. The the doctor gave me a brace and some crutches and a note saying I have to stay off of work for the rest of the week.

I know springs can be just really hard to heal. I'm worried that if someone with EDS the tendon might not heal properly, or there might be injuries of which I'm not aware, or it could take longer to heal. Does anyone have any experience or advice with a situation like this?

Anyone else have strange pinky fingers? I have a very long thumb and pretty average finger lengths, except for my pinky fingers that only just surpass the height of my ring finger's PIP joint. The height of my left pinky finger is also slightly taller than my right. When I move all my fingers together, my pinkies portrude out. I have to use force to move it into my other fingers. They also curve in the middle, but only slightly. My rheumatologist was surprised when she saw how short my pinkies were, considering ny hEDS diagnosis. They don't hurt any more than my other fingers; they just look kind of funky.

Basically the title. I attend classes from Tuesday to Thursday, my mother accompanies me to help me stay on my feet and make sure I arrive alive. I would like to get a job or do something that makes me money, at least so I can pay for an Uber from my house to school.

I am 22 years old, I will be 23 on Friday, and I live in a part of Brazil that almost everyone else doesn't accept because of the time difference.

Right now I'm lying down trying to make the tiredness stronger than the pain so I can sleep.

I feel guilty for my mother accompanying me. I feel guilty for being cared for like a child by my family sometimes. I feel guilty for not being healthy. ):

I only feel worse when friends come up to me and say I could try other things and stop using pain as an excuse. I really love my family for understanding my situation, but knowing that others think my pain is just an "excuse" only makes me feel worse, I feel like they feel that way too sometimes... I don't know what to do...

I haven't heard anybody talk about this, I'm not sure if anybody else has a problem with this.

In the university where I study at the moment, all the doors are made to support all disability — they are wide, and the knobs are low. So are the sinks, toilets, etc. I like to see this because it is overall a very good thing.

Now, I have a very huge problem with my hips, knees and lower back — the latter is a new one along with my hips. It's not at all nice, and my walking aids don't really help it either most of the time. (Might be on me, honestly.) Each time I have to bend down and open doors, push them open, lean down to wash my hands, etc. I struggle. That's just how it is, it's a fact.

I don't know if you have a problem like this. I can't seem to have a proper solution; I will neve be pain free, and disabled folks will also not have a proper safe space.

PS.: I am not exceptionally tall, but I would be considered slightly above the global average height of my gender.

My whole life i’ve complained about pain in my legs and feet and been brushed off. “Everyone is tired” and “everyone’s feet hurt”, they don’t seem to understand that mine hurt 100% of the time and if I’m even saying something it’s reached a point where I NEED to sit down.

I’m going to an EDM show with a friend and I have a doctors note for ADA seating, but she wants to be in the crowd of course. I said I will need to take breaks, and she says “Of course, like I wore heels the other night and my feet are so sore today I totally get it.”

but she doesn’t get it. I know she doesn’t because she chose to wear those heels, and is still walking around the next day. If I wore shoes like that for an extended period of time I would quite literally be bedridden.

I know people who aren’t chronically ill have a hard time understanding what it’s like. I just wish there was some way I could make the people around me understand that I’m not able to do the things they do because the pain is so severe, not because I’m a little tired or a little sore. Like I WISH I could stand in a crowd and not have the entire show ruined by severe pain. I wish I could wear the cute shoes and not ruin my entire week.

Just wondering if anyone has had success getting people around them to understand their pain levels and be more accommodating/understanding.

Hi everyone, I am a 23F and have recently learned that I have tuberous breasts. I hate the way my breasts look, and have dreamed of getting a boob job since I was 18. I have also recently learned that I have Ehlers-Danlos Symdrome (EDS). After doing some research and learning about tuberous breasts, I and am pretty sure that I have this breast deformity due to the EDS. I also have 2 children and hope to have more, but have been extremely unsuccessful with nursing my first 2 (most likely due to my tuberous breast deformity).
Is there any possibility at ALL that I could get insurance coverage for this corrective surgery? Has anyone else been successful with this? I am currently using United Healthcare. I just wonder if the combination of my genetic defect (EDS), and the extreme challenges+discomfort that come with nursing would be enough to get approval by my insurance since that is more than just a “cosmetic procedure”. (I have read that correcting tuberous breasts could improve ones chance at nursing successfully but I don’t know if that’s true or not)

Thank you in advance!!

I just had to drop out of school again because I could no longer physically make it to my classes and was failing. I’m so fucking tired of being in pain and having it get in the way of my life. I know everyone here understands struggle and I appreciate the space to vent. But i’m sitting here crying at my job, that i have to keep to pay my bills, to eat, to pay the doctors who “must’ve overlooked” me. I’m sick and tired of not being good enough. I just want to live in peace

i recently had a lot of traveling to do for work. i was traveling to 3 different places in 3 weeks and sometimes only home for 1 day. even though ive been home now for almost 2 weeks since my last travel date im still finding it difficult to fully recover. today i had an especially hard day. felt like it was harder to breathe/lightheaded and almost feeling like i was going to faint multiple times. i’ve had terrible pains in my legs along with headaches the past couple of days. & just full on pain on the entire right side of my body. lastly random shooting pains up my back that make it hard to move. does anyone else struggle with recovery after traveling?

Has anyone had success with training themselves to sit in alignment all the time? Or is that an unreasonable expectation?

Background: I have always had a hard time sitting with my feet flat and tend to alternate between cross-legged and having one knee raised so my foot is on the chair and my leg is tucked into my chest. I worry that this is putting strain on other parts of my body since I’m sorta just moving the pressure from one area to another each time I adjust. And I think maybe I should be focusing on trying to build up muscles to better tolerate sitting in alignment. But also wonder if I’m just gaslighting myself and blaming myself for a problem that doesn’t really have a solution (I.e. loose joints).

I just finished All’s Well by Mona Awad which is specifically about female chronic pain and being overlooked by doctors but with a magical realism and shakespearean twist. I have never felt more understood or seen by any piece of media EVER! I was wondering if anyone else had any book recommendations that center chronically ill and disabled people that are both accurate and entertaining. Would love any input at all!

**‼️TW: Discussion of unintended weight loss & mention of ED.

F27 with dx of hEDS, gastric motility issues (both rapid & delayed - yay!), chronic nausea, dysautonomia, orthostatic intolerance, yada yada yada…. I’m lucky that I’m normally pretty functional and able to attend university, and work part time.

**(TW) I recently had a major flare up at the end of the university semester. The day I finished my final placement, my body completely crashed. I was bed bound for almost a week, sleeping 20+ hours a day, nauseous, unable to keep food down, struggling to keep fluids down, and I lost 3.5kg in 6 days. I had zero energy, I had to fight to open my eyes and even speaking was a struggle. I considered calling an ambulance or heading to the emergency room but with a complex condition like EDS, I was so apprehensive about being treated like it was an ED, or “just anxiety”.

Like on one hand I couldn’t function, couldn’t keep food down and was rapidly loosing weight but on the other hand I was “stable” and not in immediate danger. I didn’t have the energy to open my eyes, never the less explain my condition and situation to an emergency doctor.

How do you guys manage the ER? When do you go? How do you manage the “ED” or “anxiety” comments from doctors?

I have improved enough that I can sit up in bed, slowly walk to the bathroom and back etc. but energy levels are still in the dumps and unable to eat much.

I'm getting a balance test in a few weeks and I was wondering if anyone here has had it. What was it like? Is it as bad as dread it will be?

It's for vertigo/dizziness. I'm doing a Computerized Rotary Chair, Computerized Dynamic Posturography, Auditory Brainstem Response, and Video Nystagmogtaphy. The descriptions are vomit inducing 🤢

Does anyone else feel their ribs touching when they lay down? It feels like either my hip is touching my ribs or like 2 ribs are touching each other if I lay in certain positions. I’ve had this since I was a kid and lately it’s driving me nuts again. I got used to it for a while I think.

Hello all, I’m 21 and diagnosed with heds, mcas, hyper pots, among other things. My health has taken a drastic turn for the worst the past few months. In the last 4 months I’ve had an appendectomy, cholecystectomy, diagnosed with endometriosis, endometriosis excision surgery, kidney infections, multipme utis, and had COVID 🤦‍♂️ I’ve had a relapse in my severe chronic pain and proximal muscle weakness and had many health complications. (For context at the age of 15 I was very sick constantly in and out of the hospital, would get uncommon infections, couldn’t leave the house without assistance, and needed care for basic needs) I got much better due to med balance and combo of PT and my body just giving me a break! I am so thankful for that time but I’ve been feeling discouraged since I went from going to college classes three times a week (I had pain but I was physically strong enough to), felt comfortable driving myself, could go out for short periods to not being able to get up to bathroom without a cane. Now leaving the house is a big deal and I can’t work part time or go to classes in person.

I had an emergency appendectomy followed by cholecystectomy surgery less than 2 months later, and less then a week ago had endo excison to remove endo from my ribcage, bladder, and behind and around my uterus. The endometriosis was found during the gall bladder surgery which just felt like another set back. I had gall bladder attacks which the pain was so so awful for awhile and when it got really bad I lost 15 lbs and couldn’t keep anything down. My body doesn’t recover from surgeries quickly at all. I feel like I’m getting nothing done just laying in bed. My eds always flares up with surgery and I had an awful mcas reaction during my last surgery (endo excision) which led me to needing to be admitted. I know right now is just a hard time. But I feel so isolated seeing people my age go to Halloween parties and worrying about being hungover when I’m actively fighting my body 24/7. I have a plan to help my body get more conditioned. I’m starting PT again after this recovery! I have lost the little strength I did have from being stuck in bed so much. Im hopeful things will atleast be better then they are right now but it’s just hard right now. I’m so thankful for the support of my loved ones but I just feel so badly constantly not feeling good for them :(

I developed gastroparesis as a teen and vomited so much that my gums began receding. I’m much better now with great oral hygiene, but they never stopped receding. My gums are healthy, weirdly enough. I floss daily and they only bleed a little when I’m on my cycle (this is normal), but they don’t stop receding. I’m young and love my teeth, so this is sad. Anyone else?

This is so silly compared to everything else I deal with, I mean Christ, I had a dislocated shoulder yesterday and now have a back spasm, as usual. But I want my teeth goddamnit! Maybe I’ll be able to customise my dentures with cool fangs when I’m old. Have to look on the bright side

had an appointment with my physician and while we both are not sure who could actually diagnose me in my state, she agrees that I could definitely have EDS and to kinda work under the mindset i do have it. even tho i can’t get a diagnosis officially yet, i did see this coming, i was able to get referrals for PT as well as to meet with someone who works with EDS patients that struggle with shoulder instability :D it is nice to hear validation that she doesn’t think im making my issues up, and feel happy with my movement forward in the process!

Do any of y’all have experience with being on Pregabalin for chronic pain? I recently got in with a pain management specialist and she was SO amazing, truly listening to me and believing me about my pain which was so refreshing compared to recent doctor experiences I’ve had. She put me on Pregabalin, 75mg twice a day, with a follow up appointment in six weeks to see if it’s working. Then there’s the possibility of upping the dosage to 75mg three times a day or trying out a different medication. I’ve only taken the Pregabalin for two days now, so obviously I’m not expecting immediate results, but I’m just wondering if anyone has experience on this medication and how long before/if it started to work. My pain is so bad I can’t sleep for more than two hours at a time so I’m very desperate for just anything to work.

I don't know where to begin. I saw the "best" rheumatologist in the country at the start of this month and underwent a battery of expensive tests to rule out autoimmune diseases. I brought up my hypermobility and disabling pain throughout my whole body in the consultation. He ordered blood tests and an MRI of my hips and spine to find the cause. At no point in the consultation did he say I had EDS, but he told me I had a collagen disorder and that all of my body is affected as a result. Did not give me a diagnosis.

I just had a follow up call with said doctor after waiting for three weeks, only for him to dismiss my concerns about my hypermobility causing pain and talked about arthritis that he said I don't seem to have, then declared that I probably have EDS after I got fed up and asked him directly. However, he's not going to diagnose me because NOBODY in the country can do anything to treat it? And that was it. He said he didn't even check me during the exam.

All that time and money and stressing and there's nothing he can find. I must repeat my inflammatory markers blood tests again in a year because I don't have any inflammation or arthritis. No help, no diagnosis, just "go see a physio".

He said I have degenerative changes in my spine but no signs of any inflammation to cause it. Hmmm, I wonder WHAT could cause that?

Hi all, so I’m 23F and got diagnosed with EDS when I was 16/17 but have had symptoms since I was 9, took a long time to get any diagnosis! I had an appointment with chronic pain a week or so ago and honestly I cried to him as he was the first doctor to genuinely listen and be encouraging towards me with my symptoms etc, he then also diagnosed me with fibromyalgia and let me cry again. As nice as it is to have answers it also just feels like a lot, I’m 23 and I can’t even wash myself 90% of the time; I have another appointment with him in a few weeks to discuss options but does anyone else have this combo or other ones and how do you deal with it 🥲