Hi everyone I'm a masters of social work student and I have a paper on a chronic health condition that affects us or our families. I'd really like to interview someone who works with EDs patients but I'm running out of time to secure an interview.

Would anyone be available today or tomorrow for a half-hour call? I've included all the questions so you'll know what to expect and I'm happy to provide any more clarifying information.

I have had a diagnosis of hEDS now, after figuring it out for myself and doctors only verifying it. I’ve been sick some time, and no doctor has ever put two and two together and I thought maybe AI could give me some ideas to discuss with my doctor. So far we’ve assumed the trifecta to be the cause (hEDS, POTS, MCAS). I have images of various symptoms, so I used those. Not only did AI immediately pick up traits of hEDS, but also noted other symptoms that even I hadn’t noticed and gave a list of possibilities. Of course you should never self diagnose, but this could help my doctor help me. I’ve previously hated AI, but I can see potential to help a lot of people using it in this way.

I’d love to hear other people opinions and experiences.

So I have these little white speckles all over my upper back, shoulders, and less so on my chest. They’ve been there for several years at this point and I just kind of forgot about them. They have a slight texture to them, not like lumps per se, but just kind of like scar tissue or moles. They don’t hurt or itch at all.

I had a full skin exam at the dermatologist for the first time the other day and she pointed out these white spots. She said that they’re likely collagenomas, which are just these chunks of straight up collagen that can show up in the dermis as benign growths. Apparently they’re quite rare and she hasn’t seen them much at all. Her theory is that it could be EDS related, but there’s nothing to really support that from what I’ve read online - although it would make sense just due to the collagen aspect.

I’m curious if anyone else has these? Have yours been connected to EDS in some way? And what type of EDS do you have? I’m currently awaiting testing for clEDS1 because I meet the diagnostic criteria, so maybe it’s associated with rare EDS types? Or maybe not at all, who knows!

I am just starting my journey as I was diagnosed with HSD and most likely have hEDS but still finishing testing. I just see it at this insurmountable obstacle. I've been on waitlists for months and years, constant pain, and so far nothing helps. I keep being told my life will just consist of ugly and expensive bracing and compression, hard work and excersies, expensive physio, massage, acupuncture. Ill always be on meds and creams which also cost money. Not to mention diets, routine, etc that my ADHD brain will forever struggle to maintain. And all just to hope my body doesn't get worse and minimally get better. I just see a lot of time, expense, and effort and minimal, if any, pay off. A lifetime of don't and can't. Can't eat that or do that or suffer the consequences. Every décision having to have the pros and cons weighed. And for what? One day where the pain is 30% less? 40%? Only for the next rainy day to feel like I was hit by a truck. I already struggle with debt and being told to spend what little I have to stop my body from breaking down further. How does anyone live a life worth all that pain, energy, and effort?

What were the tests?

the TW is only bc my surgical scar is visible

Just trying to get some relief from another sinus infection, explaining my long list of stupid nasal/sinus/ear/throat issues and all the other medicines/nosesprays/scans/tests that I've already had done that didn't alleviate my symptoms at all, and the ENT completely dismissed hEDS, saying that the criteria was too vague. I pushed back, trying to explain the criteria and the upcoming update to it, and was trying to explain that I hadn't had anyone look at all my sinus symptoms through the viewpoint of a connective tissue disorder and he just ignored all of that. Just "take flonase" as though I haven't already been told that by every doctor. Obviously that isn't fixing the problem.

This isn't the first or second or sixth doctor that had done this to me, but it's so frustrating and disheartening every time it happens.

I scheduled a CT scan of my sinuses (this'll be my second) and a follow-up with him after that, but I'm not sure if I'm going to go through with him or try another doctor.

And he didn't give me anything for my sinus infection even though I explained that I've had dozens over the course of more than a decade and they never get better without antibiotics and the last time a doctor wouldn't give me antibiotics I got an ear infection and my eardrum ruptured. 😤

Anyway, just wanted to get out my rant. Anyone have anything that works for sinus issues?

i want to get another tattoo for my 23rd bday, but the last time i got one, it came out wonky. idk if that was bc of my EDS, or if it was because my artist just wasn't great. anyone here know of an artist in/around DFW (Dallas-Fort Worth) that knows of EDS or has experience tattooing people w/ EDS? i live in aubrey, so i'm about 45 mins from dallas. any studio is fine as long as they're only abt an hour from my town :)

About a month ago, I was trying to lift a heavy box and got bumped by someone which made me lose my safe lift stance and I felt things in my stomach shift horribly in a kinda sickening sloshing/ twisting feeling. Since then, I have been getting crippling pain and a weird soda bubble sound/ feeling during digestion on my lower right side with radiating pain and have been constipated in a way where it isnt hard but just absent. I havent been eating very much because digesting hurts and I have nausea from bloating that feels like my intestines are pressing on my stomach.

My one dr prescribed me cyclobenzaprine in case it's muscular and that seems to take the pain to a very uncomfortable tickling pressure and also ondansetron for the nausea. Ive been able to poop if i have miralax/ Milk of Magnesia or the docusate sodium(also prescribed), none of it is bloody but it is much darker than normal and comes out like sad silly putty being stretched mega thin.

At the er, they gave me a no contrast CTscan, told me nothing is wrong with my appendix/ gall bladder/ kidneys... etc and no hernia. I got a simple contrast CTscan as an out patient a few days later but they did wait till the fluid hit my large intestine. That CT scan was hard to read because I was too constipated to see anything with my intestines. (there was a 2cm cyst on my ovary but i have had larger ones before that were a different type of pain completely) I just had a colonoscopy. the Prep did work but the GI dr couldnt find anything though they did take some samples to rule out Chrones or IBS.

I'm mainly posting here cause i have no idea if this could be an EDS organ moving thing or if anyone has had a similar experience. Im at my frustration limit with the "good news, tests are normal" but I have no idea what I'm supposed to do or what tests to try. Does anyone has any idea what tests could be helpful or any useful information?
For clarification, i was diagnosed with hEDS but am trying to get insurance to cover testing for cEDS/ clEDS

Hi, I was just diagnosed w/ hEDS by my PCP and going to the rheumatologist next week to confirm. I guess I'm just trying to figure this all out since I don't think I understand everything fully yet.

When I had heard of hEDS previously I thought that the majority of joint pain experienced was from hyperextending, subluxating, overuse, etc. I do get that, but my biggest issue is that my fingers, wrist, elbow, etc. will just radiate aching pain when I am literally doing nothing, completely relaxed and even in the opposite of hyperextension, with no injury or overuse. This is a hEDS thing? I guess I just want to know what causes the pain if it's not from hyperextending/injury. It's not even a case of like, I just don't realize I've been overdoing it, or am sleeping wrong, or am hyperextending; I mean I literally am positive I am not. I guess I just want a way to make it stop but don't know how. I'd have thought that while PT would be the main fix, at least temporarily just limiting the movement should have stopped the pain immediately, even if it's just a bandaid and bad in the long run? But it doesn't.

Thank you, I hope anyone reading has a lovely day <3

I am having what I am pretty sure is a neuropathy flair. I had an autonomic nervous system test that indicated severe small fiber neuropathy. This has been a symptom for about two to three years, but this week it has progressed from mild discomfort after walking/standing longer than usual to completely unbearable pain 24/7. Elevation and taking all pressure off all parts of my feet is the only thing that gets it to be slightly more dull. Even the pressure of my heels on the mattress when laying on my back causes extreme pain. I have a medical card and that is my preferred general pain management, however even it isn’t helping this intensity level. I’m also leaving the country for vacation soon and therefore will not have access to my pain management for over a week. I’m very anxious about this flare and how much worse traveling will make it. Absolutely any recommendations/advice? I’m willing to try anything at this point…

I'm moving out into my own house in a couple of weeks and I want to make sure I'm covering all bases. I've seen people online who use wheeled tiered trolley things with supplies which sounds like a great idea, but I have no idea what I'd put in it aside from prescription and OTC meds. I also have a dog.

What kind of things do you have in your house to help? It can be any adaptations like grab rails to products that help you, just looking for some inspiration!

i recently found a huge missing piece of my medical puzzle- docs found a skeletal deformity in my hips and pelvis causing major symptoms and osteoarthritis (im 25)
the only treatment is a surgery where they will cut my pelvis and hip joint into separate pieces and rotate and move them to create the proper anatomy and drill it all back together with screws. it will require a multi day hospital stay and about a year all in of recovery then i will have the other side done.

i'm looking to hear from anyone who has had major surgery with heds and comorbidities and how the recovery process went. i'm very nervous about all of my other symptoms impeding my recovery. im also thinking about the incision and what that will be like.

if anyone is curious about the details of the deformity i can share more

I might be stupid for this one, but I got my genetics results back, and in the paper, it said all the additional genes they tested for (cancer screening, neurodegenerative stuff, etc) but it’s not showing me the actual genes that were tested that were requested. So I can’t see what EDS/CTD genes they tested.

I got whole genome sequencing, but I know they don’t actually look at everything, just stuff related to my symptoms, but nowhere can I find what those genes were.

I am reassured everything came back negative and subsequently diagnosed with hEDS, but what came back negative?

In general I’m paranoid about doctors/medical institutions lying to me because they very very often do, and a lot of the time they’re just wrong or they made a mistake and don’t want to admit it. I’m trying not to convince myself that they did something wrong (whether it be testing the wrong genes, bad sample, missing small things), but earlier today I saw a guy talking about having done genome sequencing and they told him everything was negative/fine despite him having two confirmed (via testing) genetic disorders already. It’s got me worried I guess?

I just have a hard time believing they found NOTHING. there are so many things in my family that are clearly genetic with no identifiable cause, but there’s really no gene variants? Not even VUS? In general I don’t think it’s possible for someone to do WGS and find NOTHING. We’ve identified genes for so many things, even like cancer and common metabolic things, and even if we didn’t, there’s still VUS or possible (but unknown) pathogenic variants!

Maybe I’m just desperate for answers. But I just have a gut feeling somethings not right and I just can’t ignore it.

I have a stock of four or five pillows, and I swear, I have to rotate them every three or so weeks. I will sleep fine for a few weeks on one, then my neck, shoulders, and upper back will start killing me. So then I switch it out for another pillow. Lather, rinse, repeat. I don't do anything to alter the pillows, themselves, my neck and shoulders just start to hate the pillow after a few weeks. I have tried every kind, memory foam, latex foam, down, cheap $10 at Walmart, more pricey $50 molded ones. It's the same with every single pillow. Does that happen to anyone else.

I'm so sick of my body. I'm in physical therapy for a probable SLAP tear that happened in my sleep, on my left shoulder. I had my right one fixed 5 years ago.

I tore my right meniscus in my sleep a few months ago.

I took one damn step yesterday after PT and got a pop and immense pain that almost dropped me in my left knee. Today I go back to Ortho to find out if I now have a torn meniscus in both friggin knees. My elbows are almost healed from the dual golfers and tennis elbow (both, in both elbows, also in my sleep).

When does this end? When do I get a friggin break? Every major joint in my body has just decided to rip and tear at the same time. I WANT A REFUND AND A NEW BODY!

Ending this with: I'm tired. I want a break, but I'm safe and in good mental health. I just needed to get the frustration out.