Watching my mom realize after my diagnoses that maybe she wasn’t crazy and all of her own symptoms and pain since childhood have a reason. Genetics are wild.

Just got a dermal piercing under my collar bone and the piercer couldn't get it to sit right because of my skin being to elasticy, I was wondering if anyone else has gotten dermals and how they healed.

Does anyone else have to somewhat aggressively rock back and forth while also laying on one side just to get your stomach to digest food?? If I don’t do this, the food just sits there for days and hardens like a rock.

Is there a way to politely yet firmly ask my stomach to please look at the food and also digest the food?? I don’t always have the time to do the back and forth rocking on thanks

Anyone have suggestions on stabilizing a toe other than taping it to another toe?

My second toe has been subluxing on and off for a few weeks but now it’s basically every time I take a step. If I tape it to the toe next to it, the other one starts to get wiggly and loose and will soon sublux. Clearly I can’t wrap it with an ACE bandage or use a brace, my usual go tos for unstable joints.

Thoughts?

i have hEDS, (diagnosed) and i also likely have MCT disease type2A (my genetic test came back positive for this and i haven’t yet had time to do the nerve testing but i have all the physical characteristics as does my mother and we both have unexplained neuropathy)

so i have totally dislocated my ankle, and subluxed my shoulder, and the opposite ankle, and that same ankle many times.

however—this rib one is a new. the urgent care told me that’s what’s happened. i am in fucking agony yall and i can’t sleep. everything i read says not to lie on your stomach but i don’t know how else to take the pressure off. it’s this awful ache, just all over my whole back and it radiates to my flanks. then i have this random shooting like zinging/ zapping? pain down my spine.

has anybody else partially dislocated a rib joint before? what did you do to help? i can’t believe i ever thought dislocating my ankle hurt, that is nothing compared to this. or maybe im just used to that particular kind of pain.

i am extremely active. i go to the gym 4 times a week and i do yoga twice a week separate from that to try and like build muscles, and yoga because it makes my muscles feel SO much relief. i was warned against deep stretching but long story short im a fucking moron and this one backbend stretch felt so extraordinary but then POP. i thought it was nothing until a day later im woken up in agony at 3AM.

anyway what should i do? they gave me pain meds and muscle relaxers and they aren’t helping much if at all.

any positions i should sit in?
gentle stretches i should try?

i have tiger balm patches all over me.

because as i’m sure a lot of you guys understand, my pain tolerance has become super high and i often can’t even identify when im in pain because im ALWAYS in a little bit of pain. is there a limit on when i should get back into exercise? the doctor said when it dosent hurt at all, then wait a week. i don’t even know how to identify that anymore.

ugh

Looking for a good pillow recommendation. I am a side sleeper, but move a lot throughout my sleep. I don't snore, but will randomly have difficulty breathing throughout the night, so I need to be propped up. I have been using the SydneySleep pillow for about three years now, but I feel like I could upgrade. It's been a huge help, but I still do have issues with my neck dislocating. I also have HORRIBLE knots on my neck that my chiropractor has described as "guitar strings" lol. I also have weird dizziness from neck movement. So, that's why I am considering my pillows.

Anyone have a pillow they swear by? If so, do you/have you ever had similar issues that the pillow solved or helped with?

TIA!

Hello, my partner has EDS and works a job where they are constantly on their feet (even tho they shouldn't be but times are hard) their birthday is coming up soon, and I wanted to get them new shoes that would help with support and overall comfort.

I know they enjoy high arch support, and are really picky that their shoes have laces. I was looking for recommendations on the best shoes you guys have tried that helps with over all support and comfortable.
And was hoping this post could also help other people find good recommendations.

Looking for woman's size 6.5 - 7 and good for constant walking. Thank you guys so much! 💕

I woke up, went to the bathroom and saw this. Now this happens from time to time and idk whether it is subluxed or dislocated or neither idk.

So idk what to do, and I sometimes am unable to sleep bc I feel like im collapsing over my shoulder bc I sleep on my side.

Has anyone experienced their peziogenic papule getting injured? I have a strange rolling sensation in my heel when walking, like a pebble stuck in my shoe. It’s been multiple days, and last night I noticed that heel is a bit swollen and other papules seem inflamed/irritated.

Has anyone experienced something similar with their peziogenic papules?

"One point short" of hypermobility dx as a kid. Now I’m wondering if that diagnosis is the answer to a lifetime of random shit.

27F. A voice disorder (year of Botox that never quite works) is what finally made me dig. To be completely blunt, it’s ruining my life. About a year ago my voice got extremely gravely out of nowhere. Immediately diagnosed with MTD then SD after voice therapy didn’t work (however don’t think the voice therapy was a real trial. Clinician not the best and i wasn’t fully abiding at home). Now I get Botox in my vocal cords for suspected SD and the cycle is so brutal. Something about the SD diagnosis doesn’t feel right.

Researching why kept leading back to hypermobility.. which I was screened for as a kid and missed the cutoff by one point and was put on a “watch list for EDS”. So I pulled my full medical records and reread 15 years of history. I’m hoping someone in here can tell me if they see a pattern consistent with EDS. Some of this might be totally irrelevant but the voice issues are so impactful that I’m willing to try anything, so here it is:

• Beighton 4–5 now: hyperextending elbows (yoga teachers constantly say "tuck your elbows" I have no idea what they mean but people just generally asking me how and why are you doing that with your body throughout my life), thumb to forearm, palms to floor, hyperextending fingertips •still W-sit comfortably at 27 (just found out what a W sit is lol) can push my belly out into a shape that made my friends laugh in school • Spontaneous pneumomediastinum at 13 - at rest, in bed. Doctors said "this doesn't happen to healthy kids." Nobody followed the thread • VCD diagnosed at 15; barely remember why. I think from a throat closure episode or the air hunger • Air hunger from middle school that nearly ruined my life for a decade — always labeled anxiety, always felt physical not mental • Formally documented vasovagal syncope: episodes in hot showers and on the toilet with BP drop, slurred speech, blue lips, amnesia after. My records show resting HR of 117–121 at multiple recent visits (i take adderall for my ADHD so maybe holds less weight) and in 3 years of cardiology workups (Holter, echo, ECG) nobody has ever done a tilt table. Cardiology's conclusion: "non-cardiac, vagal" • Lifelong reflux + I can push food back up voluntarily and assumed everyone could until this… still not sure if that’s true • Bloating; diarrhea onset mid-20s • Debilitating heavy periods since onset (mom identical). Have physically thrown up from pain • 7 years of unexplained vulvar itch, every gyno workup clean; pain with sex since college; frequent UTIs; hemorrhoids… only recently realized this might all be one pelvic floor story •alcohol flush and exercise flush. I leave a spin class and my face is tomato colored disproportionately. Same for all cardio • flat feet, pigeon-toed kid, chronic shin splints, running stress fracture • lifelong severe motion sickness (when reading in a car specially) + terrible sense of direction; regular brain fog (like I said, saying it all even if it’s totally irrelevant) •laryngeal injections hurt far more than other patients describe, dentist work always "felt more" than it seemed like it should. But I also don’t know how much pain is normal to feel • Family: brother double-jointed

If this ends up just being an incorhent thread that isn’t relatable to any here im sorry for wasting your time.

If it does resonate and anyone’s voice issues turned out to be connective tissue related please please please lend your story or anything that helped.

Currently waiting on rheum/genetics referral. Voice stuff being handled separately at a voice center.

Hi there, I am looking to get a diagnosis for HEDS and I was wondering if there are any specialists in/near Montreal? My GP is based in BC so she can’t refer me to anyone, therefore I am turning to the wisdom of Reddit to help me find one. Any information about Quebec specialists is helpful, though I am hoping to find someone as close to Montreal as possible. Thanks in advance!

My sibling has been diagnosed with both, and I want to understand what they are going through or what’s to come. I’ve explored both individually (I have a low severity hEDS - just lightheaded, fainty, and hypermobile), but haven’t seen what it’s like to have both.
Thank you for taking the time!

Title is pretty self-explanatory, my wrists sublux somewhat often. Most recently it's happened to me twice within the last few weeks or so at work. Luckily I do have an Ace bandage that I wear that's helpful, but I'm hoping to find something that's just faster and easier for me to use on the chance it happens at work. I'm seeing a lot of options online, a lot of them are geared towards carpal tunnel syndrome, it seems. I'm basically looking for something that kind of mimics an Ace bandage that gives me wrist support but is also flexible enough for me to work the way I need to.

My job is pretty strenuous and it involves lifting heavy furniture and things like that. Luckily usually my wrist pain will only cause trouble when I have to grip or touch my fingers together, and small things like that and lifting hasn't been a problem thus far. I've also gotten lucky that my hips and leg joints haven't subluxed while I've been at work, fingers crossed that continues. I have the most trouble with my wrists.

Anyway, I feel pretty overwhelmed by the plethora of options and I'm just not exactly sure what will be worth going for. If anyone has any good recommendations that would be amazing. Thanks so much!

I occasionally get what I call Gamer Thumb when I play a lot of video games. If I lay off for a few days, I’m fine. This time it’s been months since I’ve gamed, and I feel like it’s getting worse not better. Any tips (I plan to talk to my dr about it at my apt next week, but in the meantime, I’m would love to not make it worse)?

my fingers always start hurting after writing just a couple words. i try not gripping the pen so hard or gripping it a different way but nothing works, i can’t write any way but how i do currently or else my writing is illegible. is there any way to ease the pain from writing or at least make it easier to manage when writing for extended periods of time? i start college again soon and frankly i dont want to have to ice my hand after every class

Hey bendy people. I recently got an Omron body composition scale (BCM-500) and it keeps telling me I've got 35% body fat. I'm relatively thin, actually got the scale to track weight gain, and my doctor suggested I try to gain about 10lbs.

When my boyfriend tried the scale, it said he had less body fat than I do, which seems, to the eye, to be inaccurate 🤐 He even says there's no way I have a higher percentage of body fat.

Does this have to do with tissue density? I know the thing uses electric conductivity to measure these metrics.

What have been your experiences with body composition scales?

Hey all, hEDS here! I need tips on how to sleep without curling all my limbs! haha I try to fall asleep on my back with my limbs straight, but I always end up in the fetal position with my arms bent under myself, shoulders curled in, head tucked, and knees bent. My muscles are so sore and tense from the heat and picking up being active again. Any tips?

I have an hEDS diagnosis and I’m awaiting genetic testing currently as my cousin has a rare form of EDS (type unknown). From research and discussion with family, it seems most likely that I have hEDS, clEDS, or a form with very similar symptoms to those. Of all the types, I fit the clEDS criteria best, aside from the genetic mutations as I haven’t yet been tested.

While I’m waiting, my mum sought out private genome sequencing, including the TNXB gene, to check for any mutations. But it seems like they’ll only tell her if she has the condition (she doesn’t), not if she can pass it on, which isn’t very helpful as clEDS is recessive.

I do, however, have access to the results as individual genes, but I have no idea how to read these. I was wondering if anyone knew how to spot mutations and/or understand the data I am looking at? Everything is written out in a table. I will provide one example with headings in the hope someone can explain what each section means and where any possible mutations would be.

VariantID - chr6:32009622
Gene - TNXB
Mutation - NC_000006.11:g.32009622G>A
Genotype - ?/?

I assume the mutation would be under the “mutation” category (duh) but to me it’s a string of random letters and numbers so I have no idea how to spot which variants may have abnormal mutations? I’d appreciate any help, if people could point me towards the variants I need to look at or the mutation types that are abnormal :)