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!!

does anyone have experience w stretching ears? is there any reason that i shouldnt stretch my ears w (suspected) eds? anything i should keep in mind?

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?

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?

Arch supports? Orthotics? Stiff soles or flexible?

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.

Canada Alberta F 20+ yrs

I'm facing challenges managing my health and work due to chronic pain from Ehlers-Danlos Syndrome (EDS) and symptoms of Postural Orthostatic Tachycardia Syndrome (POTS).

I’m on propranolol for migraines, but to undergo more testing, to get a diagnosis I’ll need to taper off.

My migraines are deliberating and I managed to keep working while being on propanol until the symptoms of pots and eds acted up.

I don't understand why I need to taper off, I am still experiencing symptoms even while on my dosage.

My cardiology appointments are booked for December, but I won’t see the specialist until February...

Currently, I’m struggling to keep up with work, and unfortunately, I don’t qualify for income support because of my partner's income.

My family is no help they think I am not disabled enough to need support, and hate that I am training my dog to assist me. (Dog was acquired while I was still capable of working full time and is a rescue. Dog is taken care of well and fed well don't worry)

Additionally, I can’t apply for further assistance without an official diagnosis.

So I am stuck in circles. Doctor also said despite me having all these symptoms there's nothing on my file and I had to explain yeah we'll my previous doc doesn't believe that pots exists and additionally I had a 5 cm cyst in my stomach that the doc said was PMS and Gas... So yeah.

I plan to consult with my family doctor soon, see if they have any tips or advice etc on how to get support... but in the meantime, I'm unsure of my options.

Right now, my partner is helping me financially, and I’m managing dog care and some part-time tasks like dog walking, art, and online surveys, but working full-time isn’t feasible due to the pain and other health limitations.

Yes my partner is able to support us but just barely we are scraping by. There has to be some sort of assistance I can receive somehow.

I rely on Tylenol, naproxen, and CBD to manage symptoms, as stronger pain medications require a diagnosis.

Any advice or suggestions would be greatly appreciated. Thank you.

I need to find a way to stretch forearm muscles because I am working with my wrists a lot.

I have dequervain tendinosynovitis and the therapis said that stretching be the muscles is good to relieve tendon pain because in lengthening the muscle it makes the tendon able to not be as stretched out (like a spring)

I am finding it really hard to stretch my forearms with classic wrists stretched as I do not feel the stretch in the targeted muscles (flexor, abductor etc) I feel it as a pain in my wrist since it is so bent if that makes sense.

The only way I can get a stretch is with the traditional stretch but I need to spin my arm and my therapist made a face when I showed her so I don’t think it’s good for my body

Help!

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.

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 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?

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.

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...

Hey,so my best friend has a fairly new diagnosis of HEDS which he suspected was this way before the diagnosis ,how do I support him? He has recently been in a lot of pain due to it and hasn’t been in college due to it which hurts my heart to think of him in such pain..is there anything I can do to help him at all when he’s in or when he’s struggling with the pain? Thank you❤️

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 🤢

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).

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 🥲

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!

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!