#Classic Ehlers danlos

[anomalousmancunt]

anyway it's like a month and something until i am 1- kicked out from my parent's insurance (not as bad of a thing as it seems i can get back on it if i stay in college) and so 2- able to maybe make an appointment with one of the people here who seems to know about EDS.

before that i do want to talk to my current rheumathologist about it, because boy oh boy do i have symptoms. does anyone have advice regarding talking about a diagnosis that isn't "mention your symptoms and see if they bring it up first"? because that's uhh not going to happen.

[gleditsia-triacanthos]

some EDS reminders (i’ve been seeing a disturbing amount of misinformation):

- collagen supplements will not help (the issue is your recipe, not a lack of ingredients).

- avoid chiropractors (disturbingly, i’ve seen some advertisement toward people with EDS specifically). neck manipulations by people without real medical certification can be deadly or seriously harmful, and that risk is exacerbated by the lack of connective tissue integrity.

- the idea of the MTHFR gene as a cause of autism, hEDS, immune issues, and GI issues is not at all substantiated. MTHFR gene mutations are incredibly rare, and they come with a distinct set of symptoms.

- hEDS is not a rare condition.

- it’s incredibly dangerous to use mobility aids without medical advice. i entirely understand this isn’t a possibility for everyone, but at least consulting a physio is critical. improperly sized or used canes can cause serious upper body problems, braces without ongoing pt deconditioning, and manual wheelchairs are very simply not good for the human body. this is a complicated topic, benefits and losses need to be weighed from person to person, but be mindful and seek advice.

- hypermobility ≠ eds. symptomatic hypermobility ≠ eds. eds is systemic and not self-diagnosable. it is not “peer reviewable.”

peace and love. stay safe friends.

[dr-robert-chase-apologist]

when you're watching House and the patient has your diagnosis:

[spoonsandstripesblog]

Introduction

To kick off my blog, here is a little introduction of myself and my Ehlers Danlos story.

A little about me first. I'm 32 and I live in Massachusetts, and I consider myself incredibly lucky to live in a state that has top notch health care. I live with my long-term partner, Dave, who you will likely hear me discuss frequently as he is my primary support system. He is a true saint, putting up with what he's put up with over the last nearly 6 years. I have a cat, his name is Cael. I have no children, with no intention on having children.

I wasn't diagnosed with EDS until 2017, I was 25. As a child, we knew I was hypermobile but we didn't realize what that actually meant for me health-wise. We always just assumed that that meant I was incredibly flexible and double-jointed, but in reality it was a lot more than that. I was a very active child and teen, I participated in various sports (although I wasn't very good at them), and because of this I dealt with a lot of injuries. Sprains mostly, ankles, wrists, etc. I didn't have any major injuries until I was well into my teens, I began dislocating my small joints like my fingers and wrists, making me a liability on athletic teams. As I got into my late teens and early 20s, I started to develop chronic pain and arthritis, and so I was referred to a rheumatologist who treated me for seronegative Rheumatoid Arthritis, which basically meant that I fit the criteria but the blood work was negative. I was treated with chemotherapeutic drugs like Methotrexate and eventually I was started on IV infusions (Simponi). During this time, my rheumatologist retired and a new physician took over. He took a look at my treatment plan and we discussed it, it wasn't working for me. The Methotrexate was keeping my inflammation down but the infusions were doing nothing but making me sick and making me lose my hair. So we decided to stop the infusions. As we were having this discussion, he saw the way I was sitting on the exam table and noticed my elbows were hyperextended. So he performed what is called the Beighton Scale in his office, which is the diagnostic criteria for EDS. And I tested high, so he referred me to the Genetics Dept in Brigham and Womens Hospital in Boston, where I would later be diagnosed with Ehlers Danlos Syndrome, hypermobile type. The doctor ordered genetic testing, which ultimately showed an abnormal gene "of unknown significance" on my COL5A1 gene, a gene that is connected to classical-type EDS. So I currently have a definitive diagnosis of hypermobile with a tentative diagnosis of classical. The difference is small - classical has more skin involvement and more proneness to comorbidities.

After my diagnosis, it started a whirlwind of health crises. In 2019 I had a flare-up of a new condition called Gastroparesis. I woke up one night with severe nausea and from that point forward I couldn't eat anything. I would get full after a couple of bites, and anything I did eat mostly came back up. I dropped 25lbs in 2 months and was surviving on a liquid diet. I had to see a Gastroenterologist and completely change my whole diet around so that I could get my nutrients without fouling up my digestive system. I had to go on a low fiber, low fat, low residue diet - no fibrous vegetables, can't eat bananas unless they're completely ripe, no more medium rare meats, the list goes on. Eventually I did "recover," but my diet is still very restricted and I've had to meet with a nutritionist multiple times. I had to have a gastric emptying study which showed my stomach as 60% full after 4 hours, leading to my diagnosis.

After dealing with that, I began to have problems with my blood pressure and heart rate. With positional changes I would get dizzy, I would get "episodes" where I would suddenly start to sweat and get fuzzy and would have to strip down to the minimum clothing or sit in front of a fan, and pretty much sit right where I was standing to avoid passing out. After seeing a cardiologist and having several cardiac tests done, I had autonomic function testing done in Burlington MA which included a tilt table test among other things, and I was ultimately diagnosed with Dysautonomia, a dysfunction of the autonomic nervous system, potentially related to the Gastroparesis. Vagus nerve damage can cause issues such as slow stomach motility and autonomic nervous system problems. I've never had my vagus nerve checked specifically, but the doctors are assuming that this is the problem.

Over the last couple of years I have had 3 major joint stabilization surgeries including my shoulder, my hip, and my knee respectively. I was lucky enough to find an orthopedic surgeon who is a unicorn in his profession - knowledgeable about EDS, a damn good surgeon, and incredibly kind. And we determined that it's likely I'm having all of the ligament problems because of the progesterone birth control I am on, which can loosen ligaments (something I do not need). So in April I will be getting permanently sterilized so that I can come off of that birth control.

As of right now, my health is pretty stable. I finally got my heart rate issues under control with a new medication and I don't have any joints that are in need of surgical stabilization. My mental health is stable and I'm overall in a very good place. But it took a long time to get here, and sadly I grieve the life I once had. It's hard to look back when I had endless energy and know that I simply don't have that anymore - it's all I can do to make it through the work week and still have the energy to do anything at all on the weekends. This coming from someone who used to work double shifts as a nurse (that's a whole other story) on a busy rehab unit - I simply could not do that anymore.

So that's my story of how I ended up where I am. It's a paraphrased story, there's obviously a lot more to it and I'm sure I will get to it at some point. I hope to use this platform to let other people with EDS know that they are not alone.

[thephilosopherspetcat]

Just because a certain, or popular disease "fits" your symptoms doesn't mean you have it.

I get that it can be hard to get a formal diagnosis, but until you do, PLEASE DONT SPREAD YOUR PERSONAL EXPERIENCE AS FACT AS FAR AS THE DISEASE GOES.

self-diagnosing for *personal* reasons is perfectly fine. if it helps you to just run with that diagnosis, privately, until you can have it confirmed or find the actual thing wrong with you, then go for it!

But please stop shouting to the world:

"Oh I have EDS and I experience xyz because of it!"

Because you are changing the perception of the disease to the public (healthcare workers included) by claiming that diagnosis, and you might be totally wrong.

• specifically for hEDS, I know so many people who have DIED from it and in the same day I hear a doctor tell me "EDS is just a tiktok trend..." and an hour later 50 comments on a tiktok video telling a stranger with hyperextended elbows that "you must have EDS! You're so flexible!" as if hEDS is just a flexibility issue and not the literal proteins in your body being malformed, rupturing organs, paralyzing intestines, and having your brain literally fall out of your skull.

Peace & Love,

a girly with cEDS who just read 20 posts under the ehlers danlos tag with varying degrees of "basically i have eds but also ive never actually been told that by a doctor, but here's my eds advice" (and a lot of that advice is actually horrible to give to someone with a collagen disorder).

[barksenji]

I've been pondering why I'm drawn to Killer as a character. I think he somehow mirrors my feelings about my body and health.

When considering disabled characters in One Piece, like Shanks or Kid (though there are more examples, maybe even better ones, lol), their disabilities play such a minor role in their lives that you might forget they even have one. It's not inherently negative, but it makes it challenging to connect with them in that sense because they don't truly experience the struggles.

Surprisingly, Killer stands out among the characters, showcasing the profound impact that eating the SMILE fruit had on him. He vividly portrays the hysteria and fear that can arise from losing control of your body, a part of yourself, whether through amputation or more abstractly, the loss of independence or freedom.

Killer is condemned to a lifetime of laughter; the effects of the SMILE won't be cured (maybe eventually they will, but I don't know). He copes, yes, but it's constantly going to be there. Sounds familiar? If you're chronically ill, you know.

Moreover, as someone dealing with dysphoria, there's a strong identification with Killer regarding the mask. The sensation of your face feeling so alien, prompting a desire to hide, isn't foreign to me; plenty of times I've wanted to put a bag over my head so I'd be able to just stop looking at my face.

In essence, Killer's character, encompassing his loyalty and more, evokes a powerful reaction in me. Yeah it sounds cheesy af I know, I'm autistic, what do you want from me, lol

[pennylunfersqueak]

i don’t like it when people notice my (especially finger) movements and/or my scars and go “ewwwww”.

like okay. is this personal, am i personally disgusting to you, or is this what you think about all disabled people?

or, do you just think you can call me disgusting because you don’t perceive me as disabled?

[gay-caesar-truther]

*sigh* why am I googling shit to diagnose my ocs with health conditions

[this-barbie-is-on-effexor]

Hypothetically if you had a friend who you’ve known is disabled the whole time, but never actually talked about what their disability is because it’s a sensitive topic. You just know they’re in a wheelchair and that’s okay and they’re one of your bestest friends in the world.

And then you finally get your own diagnosis of being disabled and you want to talk to the one person who it makes sense to talk to. But your guys are in a long distance friendship now.

Hypothetically, do you just turn up in their DMs saying “sup! So when did you decide to use a mobility aid and can we talk about the looming worry of never doing as much as our minds want because our bodies won’t allow it ?”

Hypothetically.

[crip-wizard]

Me doing physio:

My cat: free real estate :]

[gleditsia-triacanthos]

anyone else feel just ‘eh’ about their wheelchair?

i feel sometimes like the classic online phenomenon of “oh this incorrect idea is most dominant so we should spread an equally extreme opposite idea” has taken hold when it comes to wheelchair use.

i think the whole “oh, i’m so sorry you’re CONFINED to that wheelchair” routine, while almost always well-intended, is stupid and not particularly comforting. i also think that never acknowledging the DOWNSIDES of wheelchair use, and that it’s often shitty and frustrating, is unhelpful.

does my wheelchair make my life a lot easier? fuck yes. i don’t exactly have mobility alternatives, but it’s this or what can only be described as scooting. can it be uncomfortable and do i need breaks from it often? also very much yes. am i at a place yet where i’m 100% comfortable with the loss of function in my legs and the fact i even need one? no! i might get there someday, or i might not. that’s okay!

if you are reading this and feel like your wheelchair was the best thing to ever happen to you, i love that! this is just hopefully to add some balance to this conversation.

[xxtowardsthesunxx]

I haven't posted much here in a while; wanted to post an update.

recently, my dr told me he now suspects I do have eds, rather than mctd. so now we're trying to get me into a rheum and have genetic testing done. the gp suspects ceds, while the np has some suspicion it could be veds. it feels really weird to have this curveball suddenly thrown at me, five years into my journey.

I'm trying to engage more in the online community, so this is my official introduction post for edsblr. so. hi 👋

[corvus-costumes]

To the highschool teacher who said I couldn't study archeology because of my physical and learning disabilities. Look at me now I can do this and use my mobility aids.

[ali3nz1nt3rcept3d]

About Me!!!

♡ main blog @abdvctedbyali3nz !

♡ indie/yuxin | born '02 | they/them | gay & taken

♡ audhd | dyscalculia | cleds | pots | gastroparesis | lupus | seizures | ocd | arfid | bpd

♡ semiverbal, do not infantilise me

🫧

☆ main interests: lps, alternative subculture, sanrio, death note, folklore & mythology, gothic literature, vocaloid, metal music, human experimentation & ww2, psychology

☆ current hyperfixations: soft grunge, mlp, ahs, avatar

☆ cosplay & fashion content @citrus-shimmer

[thephilosopherspetcat]

Happy last day of feeding tube awareness week, and for my last trick I will spill maybe the hottest take:

Feeding tubes aren't a big deal.

Its a plastic tube to your stomach or intestines that gives you nutrition.

Nasal tubes can be placed bedside. Uncomfortable? Hell yeah. Dangerous? No.

Surgical tubes are 1-2 incisions and a week of "ouch, fuck, dammit." Does it hurt? Yeah. Is it that big of a deal? No.

I don't understand the terror that doctors have around placing them. They keep this tool as the LAST resort for literally no reason. I know plenty of doctors who will wait until your organs are shutting down to even think about it. Mine did. And I have permanent liver damage because of it.

Starving is dangerous and serious and fucking terrifying.

A feeding tube is just a piece of plastic. Sometimes it rubs in annoying ways. You have to get it replaced. Some people get infections at the site. The tubing gets caught on door handles...

But none of them are being left to starve.

Truthfully, doctors withholding a treatment that is minimally invasive, with massive life-saving benefits to a person who needs it, is absolutely malpractice. That would be like refusing to give a heart attack patient treatment until their heart stops. The insanity is unreal.

[barksenji]

I am going to grab my colon and put it in a shredder, cook it and eat it like pasta.

I am going to put my uterus inside of a blender and use its remains as the fucking sauce.

The salt is coming from my tears because I. Swear. To. God.

I am going to cauterize my hemorrhoids with a clothing iron and then cut them off, there, you have the meatballs.

By this point my ass feels like anything but an ass and everything nearby looks like a car crash.