#hypermobile ehlers danlos syndrome

[a-sassy-bench]

breaking news disabled people aren't using their disabilities as an excuse because it turns out it isn't an excuse it's a state of fucking existence

and existence is everywhere all the time no matter what even if you wish it wasn't

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[wheelie-sick]

I wish people going in for a hEDS diagnosis were more insistent about getting an autoimmune connective tissue disease work up

there are. so many cases where someone doesn't get autoimmune CTDs ruled out then they find out 5 years down the line that actually they had lupus all along and are now in kidney failure!

lupus and other autoimmune CTDs can be perfect mimics of hEDS, including causing dislocations (by weakening connective tissue) there's a reason you're supposed to rule them out. hEDS is a diagnosis of exclusion. so many providers lately have been skipping this step and it has put people in the hospital with preventable symptoms from an autoimmune disease.

[tired-cripple-punk]

Why are some doctors fucking useless

I was hoping that appointment would lead to something helpful, but I just got told to suck it up and go to physical therapy

I’ve had chronic lower back pain for almost 6 years, but the jackass didn’t bother to read the xray report so he didn’t see the notes

He was nice but didn’t listen to me, and dismissed my concerns

[kitshomeforwaywardsouls]

AUTISTIC JOY!!!

A lot of the disability stuff on here can be kinda bleak so I wanted to share the pure JOY I am experiencing today. I got my first pair of noise canceling over the ear headphones in years and they’re not only comfortable but work phenomenally!!!

Anyone with their own instances of disabled joy autistic or otherwise they’d like to share please feel free to flood me with them!

[sebs-out-of-spoons]

okay, so, apparently your kneecaps shouldn’t be able to be moved around a lot or side to side, and if it can do that, it can be indicative of instability in those joints.

i can and always have moved my kneecaps around whenever i’m bored or just randomly, especially side to side.

this is a very fun (not, but useful at least) discovery.

[currentlyfreebleeding]

texts i send as a hypermobile person

[salt-baby]

caught my younger sibling walking around with numb hands for weeks like that was normal so PSA theres some weak evidence that the following are common in POTS:

B12 Deficiency

- characterized by numb (pins and needles) hands and feet, which is persistent for days no matter what position your limbs are in

- take dissolvable B12 tablets once daily by holding them under the tongue for a couple minutes

- ideally those should be the like 2000000% DV ones, since B12 is water-soluble and near impossible to take too much of

- B12 shots can be prescribed for very severe deficiencies

- if this doesn't go away in like a week, See Your Doctor! these are peripheral neuropathy symptoms and that's something 1000% worth checking out ASAP

Magnesium Deficiency

- characterized by a tight kind of muscle soreness (for some reason always in my calves) that doesn't go away with rest

- others report tremors or being unable to keep the legs still

- either take a supplement daily or epsom salt baths

- be warned that oral magnesium works as a laxative, so start low and work your way up

Vitamin D Deficiency

- can cause fatigue and the "seasonal depression" kind of mood

- this is just really common in the general population, not just in people with POTS

- oral supplementation works fine, most daily vitamins have it

- in more severe cases your doctor can prescribe higher dose supplements

Also if you keep getting these symptoms all the time or it doesn't go away within a couple days of supplements, you probably need to see a doctor

[a-sassy-bench]

can't believe i have to say this, but apparently it needs saying: it's really fucked up to say someone deserves to be disabled. point blank. end of story.

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[crippledpunks]

actually- my chronic & mental illness does define me- it's a very huge part of my life. it can't be ignored. it can't be placed on the back burner. it cannot be "powered through". it is there 24/7 whether or not i want it to be. i have to constantly explain to people why i do things is because of my schizophrenic and autistic neurotypes, or that im in severe pain from one of my various problems that cause pain

trying to mock certain disabled people who have to talk about and seek care for their disabilities on a daily basis is unnecessary and violent. it's oppressive. my disorders literally define me, my schizophrenia and autism dictate most of my behaviors. my body is constantly in pain, my guts are constantly affected by my IBS. i am constantly anxious from my PTSD and constantly dissociating from my DID.

if you personally feel as though your illnesses don't define you, that is great for you. i'm not saying chronically ill folks can't feel that way, but what i am saying is stop punching down on those of us who have a lot of their lived experience rooted in their disorders, diseases and neurotypes.

things go into remission or make progress with healing, but most chronic illnesses never fully go away and it's just bullshit to make chronically ill people feel like they can never complain about their issues. it's not an inconvenience to you, it's us expressing what we're going through. stop acting like us talking about our lived experience is an attack on your person. i'm sorry hearing that someone else is in pain sucks to hear but it sucks FAR more to BE IN PAIN

[tired-cripple-punk]

I hate the fucking pressure drop

I’m glad that winter is finally going away, but I forgot how much rain affects me

I feel like shit, I can barely sit upright

[shitbagular]

One year.

It took one year of physical therapy,

It took one year of sports medicine,

It took one year of thinking this will all go away if I just do my exercises and go to my treatments,

It took one year of my physically active career down spiraling,

It took one year of pain every single day,

It took one year of doctors telling me it was in my head,

It took one year of missing out on hobbies I used to enjoy,

It took one year of tears,

One year of frustration,

One year of trying to tough it out,

One year of my cartilage and connective tissue deteriorating,

One year of not knowing what was wrong with me,

It took one year for a doctor to tell me “this is what you have. Pain will be your normal. This is your life”.

That my normal is my body will always work against me.

That my body is breaking down over time.

That I will always have to work hard to improve my body,

And that even when I’m doing everything I’m supposed to, there will still be pain.

I’m 24 and I feel like I’m in the body of a 70 year old.

I’m tired of trying to get better when my “normal” will always be this.

I feel trapped and that my body is a prison,

Deteriorating,

The walls and foundation falling apart,

But I’ll never be free.

I don’t want to give up,

I don’t want my life to be this way,

But at the same time, I’m fucking tired of trying.

This is my normal… Are you kidding me?

[rangerpippin]

Another thing about chronic pain or other chronic conditions that I don't think ablebodied people quite get is that even minor inconveniences can become terrible based on duration.

We all joke online about "crumbs in your bed and hot side of the pillow forever no matter what" and yet somehow fail to extrapolate the obvious.

Even something as small as, for example, your shoelaces being too loose but the knot being too tight for you to fix them. So you just have to keep slipping and sliding around with every step, dealing with the minor discomfort, hoping you don't twist an ankle.

That would really get under your skin if you had to deal with it for even a whole day, wouldn't it?

What if you knew your shoes would be like that, too loose and uncomfortable and unsafe and unfixable, every day for the rest of your life?

What if it was that way because it was your whole foot, and not your shoe, because you can't tighten ankle ligaments that are laced too loose?

What if you knew you'd just have to step carefully, and grit your teeth against the instability and discomfort of it, every step, sometimes better, sometimes worse, never ever quite right, for as long as you are going to be alive?

What if that was one of the most minor parts of your disorder that you could think of, the one that just bugs you, instead of being painful and exhausting and legitimately disabling?

When you're ablebodied you think that it must not be that bad when it's your reality, because you'd eventually get used to it.

It's true that you learn how to function around it. It's true that eventually it becomes routine and you aren't constantly thinking about it.

But the duration, and the knowledge of the duration, makes it worse, not better. We know that about everything else. We make jokes about it. Why don't we know that about the hundred little inconveniences of being disabled?

[kitshomeforwaywardsouls]

If I may ask, what's Hypermobile Ehlers Danlos Syndrome? /genq

Short version? Joints stretchy and hurty. :( (Buckle up kiddies this is gonna be long)

In all seriousness though EDS is a family of about 13 connective tissue disorders caused primarily by insufficient collagen. For example this guy if you’ve seen him before:

Is Garry Turner, he’s got a form of EDS usually referred to as “Classical” with things like extremely stretchy skin being a major indicator along with skin fragility and atrophic scaring (scar tissue doesn’t form right basically.) Along with joint hypermobility, instability, and chronic pain.

Now the thing about Hypermobile Ehlers Danlos is that it is specifically a form of the condition where -unlike Classical EDS- it has no genetic marker determining if you have it. So when I was diagnose for example, they took some blood and a tissue for a connective tissue panel to determine if I had Classical. Since I didn’t have the marker I was diagnosed with Hypermobile type.

You see in hEDS you get a diagnosis of exclusion, essentially every other option explaining your symptoms has been exhausted. One of the things they give you is called The Beighton Scoring System, it’s measured on a 9 point scale to test your hypermobility for adults you need 5/9 at minimum for a positive Beighton score and as a prepubescent child you need a 6/9. I, personally, maxed out the scale at 9/9 when I was 14💀 So essentially the diagnostic criteria boils down to this:

Hypermobility Present? ie positive Beighton score.

Musculoskeletal complications? This means soft tissue injuries or episodic activity related pain (like running really hurting your joints for no reason) or frequent dislocations. When I got my diagnosis I had already torn my ACL the previous year so soft tissue injury was a yes.

Comorbidities present? Things like POTS/Dysautonomia, gastrointestinal issues, chronic pain/fatigue, and even conditions like anxiety. (I have all of the ones listed unfortunately)

Skin and Tissue abnormalities? Abnormal stretch marks (not the normal one’s kids) soft “velvety” skin, hyperextensibility, or herniations.

All other explanations for symptoms already ruled out. Like checking for other types of EDS via genetic testing.

Essentially I got my diagnosis because I checked all of these boxes. Here’s an example of the kind of form you might have to fill out courtesy of The Ehlers-Danlos Society :) as well as a step by step for the Beighton scoring system (click for better quality)

Here is a link to their page too but please ask me any questions you have because I am legitimately stoked that someone is interested. I did a project on EDS as a whole the year I got my diagnosis and it took an entire class period to present, if that gives you any idea of how much I know lol.

Nothing is really too TMI for me unless it’s explicitly inappropriate so seriously shoot me any questions you have.

[a-sassy-bench]

i am so tired. i slept for 12 hours. i think i maybe recovered one whole HP.

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[wheelie-sick]

walk through the Bosque

[ID 1: a photo taken from the ground of a man with half shaved black hair leaning on a crutch with a river in the background. he has one hand on his hip. he is wearing a black crop top that says "dead inside," black booty shorts, and fishnet leggings.

ID 2: a photo of the same man taken from below. he is sitting on a large toppled cottonwood tree.

ID 3: the same man, this time sitting cross legged on the ground with a river in the background. he is sitting beneath two metal poles that form a triangular arch.]

it was a fucking struggle😓 I should have taken two crutches (a mistake I continuously make) and my legs have just been awful lately. they love to try to give out but I've gotten good at pacing myself. I didn't get totally stranded like I've done in the past.

[tired-cripple-punk]

I fucking hate storm season

It’s been storm after storm for the last few days, including the first tornadoes this season

I feel like shit, all my joints ache and I’m fatigued

Even trying to catch up on sleep, I’m exhausted