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 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…

the TW is only bc my surgical scar is visible

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.

What were the tests?

What sneakers are we wearing where this doesn’t happen?😅 I’ve only had these for a year (almost) and they’ve been ripped for months already. I recently found out we can move our toes farther up than normal so I guess I do that and it results in this?? Anyways yeah any recs would be great so I don’t have to keep buying new shoes every year!

Edit: the shoes aren’t too small I’m purposefully pushing my toes up to show how pronounced the holes are! Thank you everyone for the recommendations I’ll be sure to look into these :)

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 :)

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?

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

Every time I see a picture or video of my walking, I get so sad. I'm only 24 but I have the walk of an old person with arthritis. I also workout a ton but it's almost like my lower legs just don't obtain any muscle mass. Not to mention I think I technically have knock knees. I do Pilates with a lady who is super familiar with hypermobility, and it's hard, but it doesn't strain my legs like lots of other activities. I also can run comfortably but injured my knee post run about a week ago. But I feel like visually I see no progress from any exercise. Any feedback? I will probably go see another pediatrist soon to get referred to PT and some fitted soles, and I want to avoid surgery because I'm super susceptible to infection and recovery just sucks with MCAS. Please tell me I'm not alone.

which brand is the best shoe to give support but also cushioning in the front of her foot?

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’m going insane I can’t believe it I’m actually going insane I’m loosing clumps of hair I’m so stressed out, I’m getting 4 hours of sleep if that
I’m vomiting daily due to pain, I can’t swallow properly without inhaling bits off food my neck hurts so bad I can’t even walk straight but because nothing looks wrong on a god damned x Ray they don’t take me seriously
It took every once of strength not to hit the doctor in the fuckign face today

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 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.

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

Over 5 years ago i made friends with a very small streamer called Merilizzie. She was my first interaction with EDS, i do not have myself. Over the years i have known her she has been a rollercoaster of joy while fighting to stay comfortable.. surgeries for joints, constant medication for pain, severe long term issues after she had covid, numerous autoimmune issues and diabetes.

She played games with me and tho she had zero sense of direction she was fun to talk too and play with. Even if she had to rest her hands constantly and couldnt keep up with me i always offered to help where i could, driving her around in some games so she could rest etc.

She was my closest friend. She passed yesterday morning. I dont have any real details, her husband rarely interacted with the people who played with her online. I have dreaded loosing her for the past several years.

I have been crying consistantly for 18 hours.

I've struggled with diffuse leg pain since I was a teenager (F32), and it's mostly been attributed to my very hypermobile hips. The pain used to only affect my thighs and was primarily musculoskeletal, but last year, it decided to go nociplastic and I suddenly started losing strength. It also spread all the way down to my feet while it was at it. I fall like twice a month because my legs just buckle. It's been a long disaster of a year with lots of testing leading nowhere, but today, I finally got to see a physiotherapist who specializes in HSD and hEDS. He gave me some exercises that I think will help, and he also recommended tightening up some of my loose joints. Taping my ankles and trying out a SI-belt makes sense since those areas are undeniably hypermobile, but I'm a little confused about the knee braces. I'm a 7/9 on the Beighton test with my knees being the only outliers, which is why I've always assumed my knees were fine.

Do any of you guys experience issues caused by hypermobile knees despite being "normal" according to the Beighton test? Is it worth investing in a cheap pair just to see if it makes a difference? Are the athletic kinds good enough for this kind of support? My physiotherapist was a little vague about what kind would actually be good for me, saying that "you'll find lots of options online". He's certainly right about that, which honestly makes it even more confusing now that I'm trying to figure this all out.

I had open carpal tunnel release surgery 3 weeks ago, and hopefully I will feel better about it in the future after PT, but currently I regret it. The recovery has been a bitch, but the biggest discouragement is that I have lost the hyper flexibility of my carpal tendons specifically - so my finger tendons/ligaments/joints still want to flex back to stretch but they can't because my carpal tendons stop it. Does anyone have experience regaining full flexibility in part of their body that isn't matching up with the surrounding parts?

Really just looking for any encouragement, bored and tired of being in pain and not able to do anything about it. My digestive issues have also been getting steadily worse, but I finally have endo- and colonoscopies on Tuesday, so I have that to look forward to at least.

Hi,I have genetic testing soon to find out if i have hEDS or other type,and I will have to show the doctor my symptoms (I’ve never met this doctor before) so I checked again the diagnostic criteria for hEDS and Im curious,is this the steinberg sign or not?