#ehlers-danlos

[weaponizedhorse]

I see a lot of post from people with chronic illness saying like "we have a right to be angry and pissed off cripples etc" that focus a lot, a LOT on being angry, at the world at God etc and it makes me worried because while yes you do have a right to be angry if you are angry all the time it literally is only gonna harm you in the end.

If you spend so much time being mad and angry and acting/being pissed off it only hurts you and the people around you. I spent years being angry at the world, God, everyone around me, at my body, and I took it out on everyone around me and it just made me and everyone around me miserable. It was the worst time of my life. I had to actively and consciously change my behavior and thought patterns, to break out of the cycle of anger and it was the best thing that I could have done.

It just makes me really concerned the amount of posts I see about people wanting/being pissed and angry. Idk if any of this makes sense but yeah.

[autumnslance]

Saw this on another, non-FF14 Discord earlier; ring finger splints!

ALT on images, but to reiterate the note:

Even if you don't have EDS and cannot relate to wearing ring finger splints, it is totally fine to use this mod for the looks and the aesthetics. Normalising disability aids and making it a casual wear is something positive. For my EDS soldiers, you are not alone, I hope this mod can bring you joy and happiness even if it stems from pain and surviving. It personally makes me very happy to see my characters wearing the same aids as me. You are loved & cared for.

[whatshouldwecallchronicillness]

When the doctor’s qualifications don’t necessarily mean anything to me...

[houndsharkk]

quick disclaimer, I am not asking for a diagnosis or anything of the sort (since, while I love y'all, you are likely not medical professionals and also don't know me irl) -- I am working with a team of doctors to diagnose and treat me; I only want to use community resources to either quiet my worries or bring up as anecdotes while having a conversation with my doctor

okay !!! so

hello hEDS community. I need some help 😭 the resources available on the internet (at least that are easy to find) are not providing me with any like written or photographed evidence of physical symptoms besides the most extreme side of the spectrum so it's very difficult to figure out whether some of my symptoms are actually worth bringing up because I'm not sure if I meet the criteria or not

for some background information, I am a chubby teenager (16+) with diagnosed HSD (hypermobility spectrum), POTS, bunions, some mild developmental problems with my ankle tendons (they grew wrong or something?? i guess), diagnosed with ADHD and have a professional confirmation (not formal diagnosis, though) of autism, on testosterone (have been for nearly 2 years now), have a few mild skin conditions (eczema and keratosis pilaris), and have had untreated carpal tunnel for about 5 years

(I only mentioned all of those because I know some of them are comorbid with hEDS and some can affect the skin and cause similar symptoms so I don't want to confuse those for hEDS symptoms!!)

I am not really sure how to word this so I guess I'll just jump right into it?? the symptoms that i've been really confused and back-and-forth on are: not having any dislocations ever (possible subluxations but I'm not sure? nowhere says like.. what those feel like so I don't have a reference point), mildly stretchy skin only in some areas (around scars, stretch marks, under wrists, neck, some parts of stomach area), veins that seem to be more visible as time passes (not just in my hands/arms, but on my chest, neck, armpit area, feet, and very lightly in my legs), and very small rounded atrophic scars that seem to be showing up way more frequently (mainly on my chest where some stretch marks are, side/ribcage area, and back of my shoulders, but there are one or two on my arms as well)

I really have no idea if these actually meet the criteria or if my body is just a little bit weird but not hEDS weird?? I've found 0 sources that actually show symptoms like these 😭

symptoms I have that I know meet criteria are: heel papules, hypermobility, I think soft skin, stretch marks that seem to grow and become irritated despite my weight percentile staying mostly the same throughout my life (+ I don't gain enough weight in a short period of time for them to be as bright as they are), mild dental crowding that I had to get braces for, and chronic joint pain

any responses with like similar stories or confirming/denying that these count would really be appreciated!!!! my parents won't take me to a specialist because the rheumatologist I went to said she couldn't check for hEDS (which?? what..) and they took that as being a "you don't have that" moment so I need to wait a little bit to find one myself but I'd rather not waste my money on an appointment if it's not necessary

thank you!!!!!!!!

[feedtheriver]

if you can't make your own collagen, store bought is fine (kt tape)

[mosscaller]

I need to get some sleep..

Desperately need to get more than a few hours of uninterrupted rest, because I'm being slowly driven insane by being constantly woken up due to the severe pain in my legs, hips, and lower back.

It's even begun to crop up in my ribs and shoulders. I don't know what's going on, but I'm trying to wait until my rheumatologist appointment because maybe I'll get the answers I need.

If not, it's another round of appointments.

However, my roommate/partner thinks I might either have EDS or Fibro. ( She has EDS, and did the test her Doctor performed on her. It's safe and just the Beighton Score. Nothing invasive. )

Whatever has been plaguing my body is stressing me out and worrying my wife, because I'm spending most days curled up in bed due to how rough the pain has been.

For her, I am trying to get dressed, be social and not avoid being a human.

But I feel like I'm failing.

[be-kind-to-all-kind]

What's the most unusual effect of EDs (ehlers-danlos syndrome) you have that's not as known?

Despite it being a rare condition and practically unknown by the general population, as time passes, people (and we all, and doctors I guess) are learning more about it, people who know about it know about the flexibility (of the hypermobile kind, hEDs) and joint problems and chronic fatigue and such, but there's still ones that are less familiar, I think, and that I don't even see other zebras mention, such as grey hair.

So I'm starting a thread; fellow zebras, what's the less-than-obvious, lesser-known manifestations that you experience?

I'll start:

Teeth randomly snapping in half

It happened at least once and I was eating something soft!

grey hair!

I've had it since my (early?) 20s, though it's mostly white but now it's more peppery (because I was blonde until a point in childhood then it went dark brown so some hairs go straight to white due to the blonde start hair colour and some go grey due to the brown change later which is interesting considering I still look like a teenager, which is also another effect of it also with the smooth wrinkle-free skin, but as long as I still get carded, I'm good xP

reddit post about others who have this too

What about you?(:

[violet-phoenix-nebula]

I almost never mention my kids here anymore, but I'm a mommy to the sweetest little zebra.

[thebibliosphere]

In the never-ending quest to alleviate my migraines, I bought a special angled pillow that lets you sleep on your side while your arm just kind of hangs through a whole in the middle. I did this because I’m a left-sided sleeper, always have been.

Until my neck subluxated and now I can’t sleep on that side without compressing some vital nerves and blood arteries. I also can’t sleep on my back right now because the pressure compresses my occipital nerve. Basically sleeping has been a nightmare recently, but that’s not the point of this post.

The point was I brought this up in physical therapy to talk about how great this pillow is because I can now sleep on my right side without the stupid thing going numb or waking me up because it hurts. And my PT was like wow, great! How did you sleep on your left side for so long without it being an issue?

And I said, oh that’s easy. I just tuck that shoulder out of the way.

And she said, ...what?

And I said, yeah, I just tuck it out the way. Not like my right shoulder. That one doesn’t move as well. It just hurts, I think there’s something wrong with it.

And my physical therapist asked me to demonstrate what I mean when I say I ‘tuck my shoulder out of the way,’ and haha, you’re never going to believe this, turns out I’ve just been casually pulling my left shoulder out of the socket for, oh, let’s see, 30 years? And then napping on it like hmmnm yess comfy.

Anyway. I looked up from my demonstration and my physical therapist was making this face:

[weaponizedhorse]

So my other post has kinda died in terms of traction so here is a new one! Hi my name is Sierra I'm 27, bisexual, mixed race, very physical disabled, mentally ill and I need help to get my teeth removed and to get new teeth! Here is everything super condensed! I have a connective tissue disorder and am unable to work, along with this came chronic nausea, vomitting, and cyclical vomitting which had completely destroyed my teeth. It's incredibly hard to eat and is so embarrassing I do not leave the house without a mask if I leave at all. I'm going to regret this but under the cut you will see any actual photos of what my teeth look like today Any help you can give would be so so appreciated! Including reblogs! They help more than you know!

Here are other places you can donate! c@$happ: $sierrarose111

Ven!mo:sierrarose111

P@yP@|:sierrasvimeoemail@gmail.com

Thank you so much for reading! If you wanna help your local disabled headed of the big titty committee I would really appreciate it 😊 If you are unable to donate reblogs are appreciated just as much!! I am definitely going to regret this but photo of my teeth is under the cut. Viewer Discretion Advised and all that

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[whatshouldwecallchronicillness]

When I realize I’ll have to be dependent on others for the rest of my life...

But then I realize that EVERYONE is dependent on other’s their whole life to some extent...

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[uniquelysamantha]

My Trauma Is My Trauma

Daily writing promptWhat are your biggest challenges?View all responses It’s Not The Wheelchair . . . I’ve been diagnosed with complex-PTSD, Borderline Personality Disorder, Bipolar Disorder, and anxiety. My biggest problem hasn’t been the diagnoses, but the lack thereof for my first 25 years. Trauma is a funny thing. Like EDS, it’s different for each person. It’s caused by trauma, but the…

[moosenaround2448]

Dr says we're gonna do some tests and look for markers of fibromyalgia, see if we can or cannot rule that out as the driving factor behind my joint pain. We have ruled out rheumatoid arthritis. She also says Ehlers-Danlos syndrome is a possibility. It'd be nice to know definitively, whether it's something genetic or something wrong with my hardware so to speak. I'm pretty certain what's supposed to be cartilage in my knees is just absolutely fucked, but why that is idk, I'm in my mid 20s lmao

[box-prairie-pansy]

My Journey to Ehlers-Danlos, Where did it start?

Latest blog post, Journey to Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome symptoms usually begin in early childhood, but are often dismissed or overlooked, labeled things like growing pain. One the first red flags that no one thought much of is having frequent debilitating migraines that started in the first grade.  My migraine always starts the same way, I start to smell oranges, next I see twinkling lights and shooting starts in the upper…