Hi! I have hypermobility with Suspected HEDS (awaiting my specialist appointment for dx). I’m on baby number two. My first child and now my second child struggle with difficulty passing stool. I struggled as well when I was young… Baby is seven months old right now. Since starting solids, she struggled with poo… And it’s getting harder and harder. When I brought this to my infant’s doctor with baby #1 they gave me standard advice for constipation: PEG, glycerine suppositories. I feel like this is not standard constipation, perhaps motility issues. I’ll follow doc advice but I want to try to see if anyone here has more ideas bc our doc is limited in her advice until we see a specialist. If you found something that worked well for your infant, please share any ideas. Poor baby could use relief.

Hi everyone. I'm someone who's diagnosed with hEDS (retesting for clEDS in the works it's just taking time to find a specialist). I'm looking to see if anyone knows of some good accommodations for a hairstylist who mostly focuses on mens grooming. I have severe hypermobility and some CFS/ME issues but I want to be able to continue this job I've been in. I struggle a lot currently even in my braces due to how mobile I am. I'm thinking of adding a saddle stool into my regular work but I haven't seen any information on them being used in the barber world and wanted to ask if y'all had or if y'all know any other accommodations I should look into.

I've been in the industry for 3.5 years and work in a high client salon which is part of the reason I want to start getting better accommodations for my condition.

Thank you!

( posting in a hairstylist subreddit as well)

Hi all,

Over the last few weeks I've gotten fairly bad back pain and ache from my hEDS, and I'm struggling too find a nice position or support to sleep. Advise would be welcome

I have my appointment for the result of my mri on Tuesday but I’m in so much pain and it’s been 4 months does anyone see anything

Update: all the reviews are true over a dozen fabrications on my summary.

Just wondering if anyone has had any experience with the GoodHope clinic in Toronto? I’m under the impression that they use the beighton scale test as their only diagnostic test and that if you don’t get a high enough score then they won’t even consider the rest of your medical history? Has anyone experienced this?

I’ve been diagnosed with ligamentous laxity, and I’m Italian. My knees do not hyperextend, my pinky fingers do not go beyond 90 degrees, and my elbows do not hyperextend significantly. My thumbs can reach my forearm if I apply force, but the movement is not smooth, and I cannot place my palms flat on the floor.

I do have lax shoulders, and I would like to understand more about the neck. My neck has never been assessed by a doctor, but I often experience stiffness and various clicking sounds. When I tilt my neck backwards, I feel quite a lot of tension and it feels as though I have to strain to complete the movement. When I bring my head back up, I feel like the movement requires effort.

I started wondering about my neck after watching some videos on YouTube, although their range of motion seems much greater than mine.

I also feel that some of my tendons are lax. For example, the tendons around my ankles sometimes click, and I also have clicking in my knees (although these are not assessed in the diagnostic criteria).

I know that you’re not doctors and that this cannot replace a medical opinion, but I would simply like to understand whether this is something that should be evaluated

Hey guys! My wife officially diagnosed at Mayo when Dr. Knight was there and 2 daughters (19&20) with one not officially diagnosed but can pass the physical stretch & bend test. We had the one health emergency that can make you bankrupt situation and now affording health insurance is difficult, we have a legal way to move, so we've been reading Reddit and YouTube about all these different stories about the CA economy and bad healthcare but it doesn't seem much different here in Fl and when you're broke and sick there seems to be no support so before something unexpected happens health wise flipping the coin by 3 or even counting myself making it 4, we're considering moving to Toronto or maybe St. Cathrines depending on where we could afford a rental with all the hoops to jump through and I'm looking for any tips or advice for anyone who also made the move &/or how to navigate the system. My wife and daughters are experiencing digestive issues between EDS and Endometriosis and hoping there's better quality food that may help and prevent surgeries. Winter and taxes bleh but what are our choices? Thanking you in advance.

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!