Another article in the Radio New Zealand series on EDS and factitious disorder misuse in Aotearoa. This time the bloody awful Auckland hospital team managed to nearly kill someone with an entirely different disease, too! And again, nationwide refusal of medical care after a stigma-based, extremely stigmatising misdiagnosis was put on her chart. Chart amendment NEEDS to be possible in NZ. As of now, I do not believe she would be safe to receive medical card at any other hospital in NZ, even after this resolution and genetic confirmation, as the flag of denial of care is STILL THERE.

Note that on the gut front, Visceral Myopathy 2 may look very similar by some analyses.

So we may want to ask more questions of our “can I have EDS and not be hypermobile?” visitors, lest they wind up getting treated like this, too.

Let’s remember that all of us were pre-diagnosis at some point (even our dare peeps diagnosed near birth from their dislocated hips and hypotonia, lol!) and maybe make an automod which can suggest the ‘loose joints tight muscle’ presentation, as well as other disorders like this as we become aware of them. Other disorders for the differential ought to be added over time, too.

Link to the Malacards page on Visceral Myopathy 2: https://www.malacards.org/card/visceral_myopathy_2

Hi all. After 6 years I was finally referred to get some genetic testing done. Originally my appointment was in late December but they called and said due to a cancellation I can come in 3 weeks.

I asked what should I bring and the scheduler really had no info. Is it worth it to bring any records? because as I’m sure most of you do, I have a ton to look over. Is there anything else anyone suggests prior to the appointment? Any suggestions are appreciated.

Long COVID → POTS, dysautonomia, ME/CFS, SFN, hEDS, suspected MCAS, GERD, hEDS, etc. Want to get lightly high once a week, max, to watch football without white-knuckling it sober.

5mg (or 2.5mg) gummy or a couple puffs from a joint occasionally — anyone do this without a flare?

Affect your HR/BP or trigger PEM?

Smoke vs. edible — easier on you?

Anyone use a supplement (kava, L-theanine, etc.) or a prescribed med instead and get something similar?

Not trying to go overboard, just want one low-key thing on Sundays. Worth trying or bad idea with this combo?

DOES ANYONE DEAL WITH SHIN SPLINTS AND/OR HAVE FLAT FEET. like, i cant even work 3 hours without getting severe shin splints. i just wanted to see if anyone else struggled with this. it’s EXCRUCIATING….feels like knives are being jabbed into both of my shins. or any ideas or information you know even if you don’t get them would be IMMENSELY helpful.

TLDR looking for physical therapy advice for my goofy right side.

I’m on a journey of trying to correct EDS related muscle imbalances through strength training and physical therapy. I’ve tried both with professionals, but I simply can’t find anyone that understands that I can DO most exercises, but I will do it incorrectly and cause injury if the absolute foundational structures aren’t addressed. Every PT I’ve seen seems to treat my issues like they would treat age-related degeneration, sports injuries, etc. Rather, I’m learning to use my body correctly for the very first time after a lifetime of it compensating with scar tissue and muscle spasms.

From these issues, I’ve developed scoliosis and spinal degeneration, right hip dysplasia, abdominal hernias— I’m okay with pushing through pain but I need help with the absolute basics.

I have made a lot of progress on my own, but I think my ankle pronation/supination is the source of a lot of issues. No matter how many exercises, how much massaging or rest I do, I can’t seem to correct my feet. Particularly on the right side. My left seems to be improving, but my right ankle goes outward and causes debilitating hip, knee, and back pain.

I have tried the usual ankle strengthening, shoe inserts, braces, even working out in boots that keep my ankles stable. The calf muscle overcompensations makes my ankles feel ‘stuck’. I can’t do most standing exercises, even those that target arms and back. My right shoulder is also completely loose because my middle back won’t engage. I am pretty sure fixing my lower legs will help me reduce pain and further degeneration higher up.

Any suggestions for what else may help? Exercises that target lax ankles and toes? Weird hacks? Things to talk to a doctor about?

Pictures to demonstrate the pronation/supination, knee valgus, calf imbalance, and the impact I think it has on my back stabilizers.

EDS, POTS, Tethered Cord, Delayed Gastric Emptying, Etc. And I've heard a bit about these frequent, nasty ear infections I've been getting about every two weeks, being supposedly more common? It's bad. Pus coming out of my ears, swollen, red painful tracks that go down my neck. Saw an ENT that told me to try "peppermint oil" so currently in the search for a new one. Don't use q-tips, other than around the outer canal to dry water that may get trapped after showers. Use a white vinegar solution regularly. And it's just like. My ears will do absolutely anything to get infected. Any home remedies you'd recommend until I can get to the appropriate doctor? And WHY DO THEY DO THIS UGHHH

Hiya, I 21F have been mainly housebound since January after my CCI developed into severe neurological symptoms including at least 20 seizures a day. I'm trying to look into treatment options, but in the meantime I'm really not exercising and only really getting outside in a wheelchair, which has been great for my mental health, but my arms are too weak and subluxy to self propel so I'm not really exercising there either. At the moment I've managed a five minute walk pushing my wheelchair, but I know that's not the recommended amount of daily exercise. What can I do to limit muscle wasting and deconditioning whilst I am unwell? Any tips for building muscle strength safely when abrupt seizures and falls are a risk?

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Hi! I have several symptoms and a family history that I would like to have assessed in relation to Ehlers-Danlos syndrome (EDS). My grandmother has been diagnosed with EDS.

I have hypermobility and joint laxity in several joints, while my overall mobility is otherwise poor (for example, difficulty with scapular movements). My left shoulder feels unstable and partially subluxes when I move my arm overhead. I have also been diagnosed with tendinopathy in both shoulders.

Other symptoms include occasional back pain, reflux/heartburn, occasional difficulty swallowing, increased bowel movements, frequent and heavy nosebleeds, a significant increase in pulse when standing, occasional sweating at rest, and severe physical and mental fatigue, which is often worst on rest days. I also had a hernia as a child.

The symptoms started quite suddenly at around 15–16 years old and progressed rapidly over about four months. My hemoglobin is good/high, but my iron stores are low.

Given the family history and the combination of joint instability, tendon problems, nosebleeds, autonomic-type symptoms and fatigue, I would like to have these symptoms assessed, including whether a connective-tissue disorder could be relevant. I play baseball, so I am also concerned about whether my shoulder instability could increase my risk of injury and whether this should be investigated promptly.

Does anyone know of any good ways to recover from surgery faster? I know its not exactly an eds specific thing but I know a lot of us especially with certain comorbidities can relate.

I got laporscopic pelvic diagnostic surgery.

They didnt find anything didnt take anything and im at 5 days and im in more pain and more fatigued and dizzy then day one and two?

The only pain ive had is just being sensitive in certain areas so I slept with a heating pad and took Tylenol.

Now my back hurts im exhausted and dizzy and my incisions are itchy and I dont feel bloated anymore I just feel like shit.

Hi everyone! I was recently diagnosed with EDS about 2 months ago after dealing with a significant amount of pain that no DR has seemed to be able to figure out. I was wondering if any of you are dealing with pudendal neuralgia or nerve compression? If so how have you been managing pain? Are you seeing a specific doctor? I'm so lost as to what to do right now or who else to see. I have been dealing with this since January and am truly at my wits end and don't know where else to turn. Any advice is welcome at this point I am willing to try anything. I'm currently in physical therapy but it doesn't seem to be any help right now.

Thank you for any input

Hello, people of r/EDS! My name is Elizabeth Anne Brown and I'm a science reporter working on a feature article about hypermobile Ehlers Danlos Syndrome and hypermobility spectrum disorder. (I'll include a link to my website in the comments so you know I'm legit!) I've interviewed plenty of doctors and researchers but am looking to connect with a few patients willing to share their perspective with me.

Please drop me a DM or a comment below if you 1) learned about hEDS/HSD through social media; 2) have since received a formal diagnosis of hEDS/HSD; 3) would be willing to be interviewed on the record for a major media outlet with your first and last name.

Edit: If you're interested, in a DM or comments, please send me just a few sentences of how you first learned about hEDS/HSD, what symptoms you experience and how they've affected your life, your age and city of residence.

I want to preface this by saying that I’d prefer if this thread didn’t include a lot of comments with venting and such. No matter where I look, every time I ask what I can do to support myself or if it gets better, I always get comments like, “I feel you, I’m twice your age and (laundry list of symptoms), I almost died x amount of times. It’s hard to want to wake up anymore! xox” and it just completely wrecks me. It is natural for us to hear these things and feel grief for the other person, and then feel grief inward for the future symptoms or medical events we may or may not have.. and that is so, so exhausting to carry every single day.

I will always have utmost compassion for my fellow zebras and I will always be enraged at the systems which fail us. That being said, I feel like I don’t really know where to look for help without instantly being suffocated with this almost doomsday-like air of nihilism and anxiety. Just yesterday I learned of a woman in her early 20s, my age, who died due to complications of EDS, from a GI symptom I once went to the ER for. I was really distressed, thought to seek comfort, and all I heard back was dozens of people telling me about their loved ones with EDS dying, or that they had near-misses with death, many of them even younger than me. I grieved it a lot, cried for some hours. That night I had a really bad GI episode, mostly just vasovagal responses, which I’m really sensitive to. I was so scared and lonely, I believed for a moment that maybe I was going to end up as another tale of caution and injustice. Even though I recovered alright and talked a lot with my partner on the phone, still, even now, I feel so, so lonely, anxious, and sad.

It is hard enough knowing I really have to play the medical system so that I might find a way to let it bend in my favor. But even seeking comfort proves to be a difficult task. Coming back from this episode where I was writhing in pain, crying, passing out; I want to hear “This is not your peak. You might not ever be ‘cured’, but you can get stronger and you can get better”.. instead, I just hear many things that remind me just how delicate my body is. How many things could go critically, irreversibly wrong with me in just minutes.

I know that this disorder isn’t pretty. I know that it is degradive. It had ruined my life, starting in my late teens!! But I certainly don’t feel helped knowing that when I just want comfort, or maybe to know for sure that there are ways to grow stronger and live despite my illness, all I get is more reasons to worry and to be scared. I’m so tired of being afraid all the time. I think there is a huge difference in being proactive in my healthcare vs. being taught to always be hypervigilant.

I’m not saying we should suffer in silence, or keep our cautions to ourselves. But I feel like there needs to be more room among our communities centered around healing and positive outcomes.

Did anyone else lose their hearing due to a connective tissue overgrowth? To make a long story short, when I was 10 months old I suddenly went deaf; Doctors couldn’t figure out why until I was around 5 years old, thus when they figured out that my hearing loss was due to an overgrowth of tissue in my inner ear canal. I had no history of infection and no history of injury. They removed the excess tissue, and I’ve been able to hear ever since & haven’t required hearing aids. I’m currently 23. I’ve tried searching Google for any connection to hearing loss & EDS and I can’t find anything. I’ve searched for anything it could possibly be since I damn near first got a phone and I’ve found absolutely nothing or anyone who can relate. According to my mom, the doctor said it was due to a connective tissue disorder but that she can’t remember what it’s called. This was in 2007-2008 btw when EDS was more undiscovered. I wasn’t diagnosed with EDS until I was 19, particularly HEDS due to my joint hypermobility, my extremely soft & loose skin, and how I’m so damn injury prone. I was so relieved when I was given an HEDS diagnosis because my whole life I’ve felt like I’m weak and have been called a “pussy” by people. It would be such a relief if I could also find out if my overgrowth of tissue in my inner ear canal was also a result for HEDS so I no longer have to overthink & wonder. Idk if this is relevant, but I also have gigantomastia (I wear a 36i & have a body fat percentage of 29%) so I’m uncertain if that’s also connected to the excessive tissue in my ears or if there’s something else that causes both that happens to be separate from my EDS? My cousin (my dad’s half niece) also has gigantomastia but nobody else in my family is also diagnosed with EDS or has had hearing loss due to a connective tissue overgrowth. My mom did develop arthritis at the age of only 41 and is double jointed, which I explained was unusual and she should probably get checked for EDS since it is genetic and I am diagnosed but she never had any hearing issues or tissue overgrowth issues & I have no other lead to the hearing loss being related.

I usually hear people talk about being "flexible" as a kid before the mobility turns to stiff joints/pain as an adult, but I haven't often heard it the other way around. Has anyone experienced this?

Hello! I’m sure you’ve seen me in this subreddit once or twice recently I promise I’m not trying to be annoying haha. Long story short, after years of chronic pain and fatigue etc etc my rheumatologist suspects a connective tissue disorder, I’m hypermobile so possibly hEDS but I’m currently in the process of finding a geneticist.

I’ve been having a lot of questions because a lot of things I thought were normal my whole life, I’m learning are not, and sometimes it’s hard to find references for what’s normal and what’s not. My question right now is, what is the normal time it takes for the body to heal a minor wound like a scratch that didn’t even bleed and for the discoloration to go away. How long does it take for you guys?

I know eds comes in many many different forms and this might not even be a symptom for some people but I still wanted to ask in case anyone who does have this symptom or knows about it can tell me.

Photo 1: Cat scratch from 3 weeks ago now, it never even bled, barely even scabbed but there is still a faint red line

Photo 2: I’m actually not sure where this one came from but I noticed it 3 days ago. Seemed like a minor scratch, might have been from a cat (tend to get a lot of those lol) I suspect it might be just a teensy bit infected but I’ve been taking care of it and it hasn’t gotten worse but still doesn’t look like it’s fully closed up.

I know this is a verrry small sample size but just figured I’d ask! Thank you!

My doctor recommended the Jelliebend shorts for my hEDS/POTS symptoms. I have sensory sensitivities, and in the past I've had to ditch some compression shorts because I have a lot of hair on my stomach and it got too itchy. Do any of y'all with body hair have a similar issue with Jelliebend products? Thanks!

always a fun topic to talk about isnt it... Sigh..

Anyways, I was diagnosed with hEDS (NHS thank you) in Janurary of last year 18F. I also have legg calve perthes disease and was treated for that when i was 7 and 10 however luckily it has seemed to reappear in awkward ways.

I have an issue with my legs were I seem to point my feet inwards whilst I walk making it a hazard honestly. And in order to circumvent in an alternative fashion (i think, could just be the autism) I tip toe alot so im way less to bash my feet into each other.

Im a full time crutch user - only one because i have shit to do (art student) however when it gets cold i have to use a wheelchair because i just tense up and feel old and fagile.

Would AFOs help ? Or should I try and treat the legg calve perthes again which the only rela treatment for my stage of perthes is a hip replacement. Even then I dont supposed that will help. I scored 7/9 on the beighton and the only area i did not score was in my knees so it all feels abit crazy.

Any help would be appreciated much love zebras 🦓