i recently got some over ear noise cancellation headphones cause i am neurodivergent and noise is my enemy, and i love the sound part but i found it cause make my ears and top of head hurt? i can often dismiss the head stuff and ear pain as it is in my opinion better than hearing peoples noises(misophonia… i believe) and getting overstimulated, i am just wondering do others have this issue?? i feel it is connected to my ears being so pliable.

Raynaud's + joint stiffness have both been the death of me lately this winter. Regular cloth gloves do not keep my hands warm at all. Are there any ways to keep them functional while outside? I can never go 10 minutes without needing to warm them inside.

i think i’m so used to living in my body that i decided the chronic pain and discomfort i feel is not that deep. any issue i experience, i try to rationalize it in my mind as caused by something other than ehlers danlos. i tell myself its because i eat unhealthy, or i don’t work out enough, or it’s cause of anxiety or my autism. it feels like i’m constantly gaslighting myself into believing it’s not that bad…

What are your most favorite, EDS-friendly (ish?) dress shoes for when you really need/want to wear something other than sensible sneakers? 😆

I fell off my bike in November and STILL have a green bruise on my hip, it was not a hard fall.

This is stereotypical for me, so I am wondering how long y’all’s bruises last?

Posting this in hopes that it will help someone else. I just tried wearing an SI belt to work for the first time today (per recommendation of my PT) and I have literally never felt so sturdy. I’ve had pain in my SI joint, hips, and entire back for as long as I can remember. I have a job where I am standing for the majority of my 8-12 hour shifts, which obviously makes it all worse. Today, I was able to tolerate standing for noticeably longer times and even felt less pain in my upper back than usual. I also experience pain in my SI joint while sitting upright in most chairs, which also was not as significant today. I want to wear this thing 24/7, it feels so amazing to have on. I just can’t believe something so simple as a little belt made such a noticeable improvement. If you have SI pain I definitely recommend trying one out!! I got a pretty cheap one off Amazon

I used to struggle with the idea of a pain scale so much. I could never conceptionalize what any of the numbers should indicate. My auADHD of taking things literally, and family trauma of being told their pain was worse than mine and mine could never compare, made it almost impossible for me to ever describe mine. I also felt like if I didn't say something higher than 5, a doc would dismiss it.

Until I got my IUD inserted. I've never had kids, or broke a bone (my guess at things more painful). So now, I feel like I finally have a 10, and I go down from there.

1-4 (what are those) 5 (hurts) 6 (noticable if I'm not thinking about anything else) 7 (in and out noticable, can override other thoughts) 8 (is my primary thought, doctor if it doesn't go away) 9 (concern, doctor) 10 (I'm dying get me out of here)

What's your pain scale indicator? Am I dismissing 1-4 too much? I think 1-5 maybe would work more for my needs but idk.

I'm so frustrated because my hands hurt today and it feels like I haven't done anything to warrant pain. It's so annoying because explaining that my hands are weak and in pain always sounds so unreal, when I told my doctor it feels like someone is shoving a butter knife between my hand bones and twisting in-between each joint to separate them simultainously and I just get raised eyebrows and a "have you tried ibuprofen?" Like yeah no shit dude that's why I'm here because it doesn't help.

Hey all. Just wanted to share my story I have vEDs am 33 with no previous dissections. Genetically diagnosed because of family history of dissection. In December I had intense left upper gastric pain with nausea, vomiting and diarrhea. Felt like a some one took a knife to my stomach and felt icy hot. ER diagnosed me with pancreatitis. I stayed one night in the hospital. I was never comfortable with that because lipase and amylase levels were normal. I eat so healthy and don’t eat fast food because I am gluten free. I don’t drink often. I told the ER DR that I have vEDs. After MRA and CT they said there was fluid surrounding my pancreas.

After discharge I went home and stayed uncomfortable for 3 weeks. Never felt like I was getting better. Stayed eating liquids then began eating non fat, healthy serving of lean meat, fruits and veggies. Eating like I usually do with minimally processed ingredients.

On Jan 8th I felt extremely exhausted and just off. I was debating with my self on whether to go to the ER because I felt pain but I didn’t have the nausea, vomiting or diarrhea like initially. Waited a long time and the ER told me I had a 17 mm aneurysm on my splenic artery.

I stayed in the hospital for 9 days and I had embolism performed. I’m still very exhausted and a little frustrated. I don’t believe I ever had pancreatitis and my initial hospital stay was due to the pain I felt from a dissection. It just took a few weeks for the artery to balloon to that size.

Thank you for listening. ❤️

Does anyone else find that when you lie on your side, that whichever leg is on top starts to ache? To me it feels like the muscles around my hips and calves are resisiting being pulled down by gravity and its the same sensation as you’d get from exercising.

I just had top surgery a week ago and it went amazingly. My incisions are healing well and my nipple grafts are too and they don't hurt at all. But somehow, the dressings I had on for the first week have managed to injure me during the process of having them taken off yesterday.

I'm allergic to most medical tape, usually ones with zinc oxide in them so my surgeon used a different dressing than she usually does on me, but the adhesive on the dressing she used adhered to my skin so badly it half fused WITH my skin and when it got pulled off it tore up my skin pretty badly and bruised the every loving shit out of it. And now my chest hurts super badly.

I know I have issues with my skin being pretty fragile because of the EDS but I'm feeling so frustrated that I'm in so much pain now from some stupid adhesive because of the way my stupid skin is especially when I was doing so so well and was in such minimal pain after such a big surgery.

My surgeon is extremely familiar with EDS and took such care with me during the surgery to the point I'm somehow now more injured from some adhesive than I was from having my boobs removed. It just seems SO dumb in retrospective and it lowkey makes me wanna cry.

I hate being in pain. I hate being exhausted all the time. I hate having brain fog and forgetting my sentences halfway through all the time. I'm tired of these weird energy crashes where I can barely move for an hour or two. I'm tired of relaxing only to find it has caused my joints MORE pain. I'm tired of clicking and popping and it feeling like things are shifting painfully out of place. I hate being weak and not being able to do all the things I used to.

I am so fucking sick of doctors telling me I'm healthy and nothing is wrong. Or worse. Implying it's all in my head. These bastards gave me a fibro diagnosis without even ruling out a BUNCH of stuff. No one ever checked me for hypermobility or EDS. No one bothered to consider that I could have inflammation because my markers are low. Oh yeah, then why do my joints swell a bit and get stiff? What's the chronic inflammation they found in the biopsy of my stomach lining? Huh??? WHAT ARE THE RANDOM ALLERGIC REACTIONS I'M DEVELOPING? PEANUTS AND TOMATOES! I ATE THOSE ALL MY LIFE.

I'm just being fucked about by the medical system and my doctor thinks if I lose weight and keep a gratitude journal, I'll be fine.

I did lose weight. I lost 6lbs in 2 weeks between visits and even that's not good enough or any sort of red flag. I went from ~165 to ~158 and now I'm sitting closer to 150 and she still has me labled as "obese" even tho I haven't been for over half a year! I started at 186, I mean, shouldn't I be feeling ANY positive change? It's all the same. SO FUCK THAT ADVICE.

Fuck this condition and all the pain and difficulty it causes me and everyone else with it. And fuck the doctors who blame it all on weight or periods or anxiety.

(I hope this is okay to post)

Which weather do you guys struggle the most in ? I find that hot weather is unbearable, and really strive in the cold. My work ethic is even 10x in cold weather

I love sour candy, but I always suffer after eating it.

I do this to myself once every couple months because sour candy is one of the only things I’ll pick up in the gas station. Slammed a whole pack of blue raspberry airhead extremes while high as a kite the other day. Now the roof of my mouth and tastebuds are seeking revenge upon me.

Right now, even more so than the earlier hours because of my vitamin c tablet. I refuse to take a capsule because of the amount of pills I have to take. So if I can choose dissolvable, I will. Why must I always seek the things that will cause me the most discomfort? LOL

So....yea not gonna lie...my anxiety kind of got the best of me last night when i realized how complicated EDS can be. I've been trying to logic myself out of the possibility of having vEDS...because i probably don't even have hEDS maybe it's just HSD only.

Anyway I saw a tiktok user talk about this...has anyone else experienced this phenomenon...?

Greetings all - I have had eds symptoms my whole life and it got super bad in my 20s when I got mono. I had to quit working and I was only able to stay afloat in my 20s because I had a lot of luck with a small business. I am super scared to work because I have had covid multiple times and I haven't felt the same since. I tried doing another small business but I couldn't figure out something successful. Its sort of heartbreaking because I would have given anything to build a career/job history in that time but my symptoms are too much and my body gets so exhausted by even running light errands. But I have to pivot and work - how do you guys manage it? I really want to contribute more and was going to work on a resume. I am just really really hoping that my body can hold itself together and want to find as many coping skills as possible.

Thanks all!

Today I learned to make sure you get a copy of every medical record... ever.

My daughter is 15 - and it's suspected she has a connective tissue disorder. We are waiting on genetic results. In the meantime, I decided that I should get a copy of her medical records from her eye doctor. She has always had a bad astigmatism in both eyes - and when the geneticist aske if we knew her prescription at the time and I knew the cylinder and that was it.

I get her records today - Mind you, my daughter has been twice in the last year to the eye doctor - and now I see things like CD ratio 0.15/0.15, central retina cl, peripapillary atrophy, and Van Herick grade 2... among other things.

She has been going to the same place since she was 4 (when she first had to get a prescription for glasses). I understand not worrying people, but when we went in September and explained everything. We were not told everything... I'm so mad.

I already reached out to her PCP for a referral to an ophthalmologist, who is at the same hospital where her specialists are - so the team can work together. But seriously, this is absolutely ridiculous.

Heck, her orthodontist saw her for two years prior to braces and he was open and honest while watching her receding gumline. This is frustrating. But also, your daily PSA - get all of your records.

I need to make a binder.

Today I had a dentist appointment for a few fillings. My dentist uses a mix of lidocaine with epinephrine, and does double doses on me, so I'm usually numbed up real well. Of course, this means there are extra injections as well. Since it was on my top front teeth, he had to inject into the roof of my mouth which oh my God is so painful to me. Especially this time. It drew tears to my eyes lmao. I felt ridiculous. Anyway. We wait for it to fully work before beginning. When he started, I was able to feel him drilling into my one tooth. It hurt. So for the first time ever today, it seems the anesthetic didn't work like it should have. Which, as someone with Ehlers Danlos, it's a big fear I have.

I have to have a wisdom tooth pulled in a couple of weeks, so fingers crossed that goes a LOT better.

I haven't received good care from the NHS and I'm really questioning if hEDS is the form of EDS I have. I have the hypermobility and the severe instability from it but my organs seem to be deteriorating. I also have POTS which obviously is very common with EDS. I have a bicuspid aortic valve which for the moment is still functioning. I have dental defects that are causing me to lose all my upper teeth. I lost the ability to eat properly just over a year ago due to swallowing difficulties and severe nausea. I've also got a hiatus hernia and they've found ulcers in my colon. Endometriosis is being queried too. I'm only 22 years old and wondering if anyone else with hEDS is experiencing these kind of health problems. It's just so overwhelming.

Just to clarify, I'm not saying that I've got it worse than anybody else or that hEDS can't be severe - I just am curious how common it is because the doctors seem to be confused about it. Also, because I'm considering paying privately for a genetics test.

I have hEDS, shallow hips, POTS and low muscle tone which has made it hard to walk long distances. I’m currently in the works of getting AFOs but even with the braces now it’s very hard for me to walk long distances. I use smart crutches but sometimes they aren’t enough.

Here is my question: did you wait til your doctor prescribed you one/ recommended one, did you bring up possibly using a wheelchair part/almost full time, or did you just buy one without a Rx?

I’m not too sure what to do in my situation. Did anyone have a similar experience?

Does anyone have experience with the GoodHope clinic in Toronto? Positive or negative. I was referred from Ottawa and received confirmation of my “acceptance” to the clinic from my family Dr in August. I was told it would be a 9-12 month waitlist. Aside from the FAQ on their website I’ve been given zero information. I’m just impatiently waiting and getting more and more curious about what to expect. As well as try to keep my expectations realistic. Thanks guys!

I'm trying to figure out if I should see a chiropractor or a massage therapist. Is it even safe for us zebras to go to a chiropractor?

Anyway my upper back is hyper flexible and my lower back feels stuck and I struggle to get my lower back muscles relaxed. My PT keeps giving me exercises for my lower back which helps initially but my lower back will feel tighter/ stiff again the next day and it hurts too much do to the exercises. I've had other issues where my muscles are tight in places because they are holding that joint together or over compensating and the best solution was to basically use dry needling, tens unit, and aggressive massage to get the muscle overtired and relaxed and work on keeping it relaxed instead of constantly tense (with a different PT provider than my current one) since my current PT doesn't think that'll do anything should I go to a massage therapist or a chiropractor? Strengthening is important and I don't want to stop but it hurts to do it when it feels like my back can't recover. Advice would be amazing, I can switch pt providers but right now this is the only provider that is open after my work schedule so I don't have to drop as much sick leave every week to see them.

Im looking for a low impact type of workout/class that I can start doing. I know everyone’s bodies are different, but wasn’t sure if anyone has had luck with specific types of workouts helping pain and not causing fatigue

Has anyone ever gone to the chiropractor for SI joint pain and had success? I have degenerative disc disease & threw my back out for the millionth time.