#hypermobile ehlers danlos syndrome

[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.

[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

.

[crippledpunks]

this is your daily reminder to stop being abusive and mean toward people with bladder and bowel issues.

im tired of hearing people mock those who struggle with bladder/bowl control, for people who can't tell when they need to go until it's too late or at all, for people who have uncontrollable voidings and leaking, for people who need to wear incontinence products around the clock, for people who need them influctuating amounts and need different kinds of products, for those who bedwet, for those who can't afford incontinence products so their clothes get dirty- to everyone with bowel and bladder issues.

we are human. we are still people. we are not gross, we are disabled. we are struggling with a disability. if you make cutesy posts about canes and wheelchairs, you need to include people who wear diapers, people who need plastic pants, plastic bedsheets and absorbent bed pads. you need to include people who can't tell when they need to go. people who need/use catheters. people who have colostomy bags. people with stained and dirty clothing. people who have to change their incontinence products in public.

you need to include autistic and ADHD and ND and disabled people who feel unsafe without diapers. you need to include people with spinal injuries and ehlers danlos syndrome and muscular control disorders with need incontinence products and feel safe with them. you need to include people who like their diapers and not just tragic stories where it's never discussed or doesn't negatively impact their life and livelihood.

please include all disabilities in your disability positivity posts, and please be kind and treat all disabled people with respect and humility, including those of us with symptoms you may find "gross".

[genderqueerdykes]

reduced prices on all jewelry items in our ko-fi shop!

hello, my name is Equinox- i'm a multiply disabled intersex trans lesbian who is currently working on paying their electric bill & for necessities. i deal with schizophrenia, bipolar disorder, gastro intestinal issues (hiatal hernia, IBS, delayed gastric emptying), hypermobile ehlers danlos, degenerative disk disease and other health issues. i am in the middle of applying for disability benefits, but my evaluation appointment was cancelled due to the fact that they did not reach out to my lawyer to tell me when the appointment was. i am currently waiting for this process to sort itself out- in the mean time, i have expenses to take care of

feel free to check out my shop, if you have any questions feel free to ask!

[wheelie-sick]

the misuse of the terms "subluxation" and "dislocation" by people with hEDS/HSD is egregious so here's a diagram:

[ID: a two part graphic. the left half is labeled "subluxation of elbow" it shows an elbow joint that is significantly displaced but the bones are still touching. the right half is labeled "dislocation of elbow" it shows an elbow joint where one bone is resting completely out of place, entirely to the left of the socket]

some terminology:

subluxation: a joint that is partially out of place, however, the bones still touch

dislocation: a joint that is so out of place that the bones no longer touch

subluxations and dislocations are not minor issues that you can just push through!

[3liza]

corset has become one of those things where I wonder why I feel so bleughhh and then I realize I'm not wearing it or haven't laced it up, stupid,

and then I do and instantly have blood in my brain again and start zooming around my house faster and thinking clearer. it's interesting how so much of this illness is purely mechanical. squeeze one part of your body to move fluids to another part of your body. apply pressure to an area that is sore and hurting and it feels better. idiot. moron

one of the lectures about POTS/EDS at the Dysautonomia Conference I think in 2022 ended with the presenter recommending corseting (she phrased it as "abdominal compression" because corset scary) by using waist trainer wraps for patients to immediately get some relief and restore homeostatic fluid dispersal to the parts of the body that need it. compression garments are recommended in the scientific literature for tons of stuff that doctors don't communicate to patients, including autism. not necessarily a corset corset with steel boning that looks like a fetish club item, but just general physical mechanical support for all these patients whose problems are either rooted in or comorbid with tissue laxity and bad orthostasis. if it's loose, add reinforcement. very simple mechanical principle we all understand intrinsically but somehow don't think of applying to our daily EDC of shit to handle our problems.

I have a friend with Problems Syndrome who describes the sensation of something being pulled downward uncomfortably from their chest and throat when they aren't tensing their abdominal muscles constantly. I do that too, it all has to be held in, held still, tensed and gripped or you feel like your body is collapsing like one of those string toys

anyway this is not to say "get a corset", because it's not the right thing for everyone obviously. also it's a lot of trouble to buy them and try them and break them in and not everyone wants to look like an extra from Sweeney Todd every day. I have that option because I'm a goth that works from home. I'm just blogging, don't take this as medical advice or even casual advice. I was just inspired to jot down my thoughts after thinking "why do I feel so shitty" today, lacing up the corset I had loosened earlier, and immediately regaining about 15% of my function.

[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?

[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

[lioncircus]

I love my aids

[sebs-out-of-spoons]

big appointments today! had to get up unbelievably early, and now we’re hauling (driving) our asses there. nervous as fuck. wish me luck and pray the medical system ain’t as fucked for me.

[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.

.

[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

[genderqueerdykes]

had an appointment with the disability determination evaluator- it got cancelled because I had missed the previous one while I was homeless and without a way to receive mail reliably. they didn't tell me, or my lawyer about that... i ended up going out there for no reason, they would not even attempt to see me despite the fact that i was present, and that i was not going to miss this one just because I could not give them an address to mail paperwork to.

disability in the US is a very long and arduous process. be patient with people who are applying. it's been 2 years for me now. we're almost done we just have to reschedule because they didn't tell us they didn't feel confident accepting that appointment due to previous missed appointments but instead i wasted my time going across town to ... not get evaluated. they didn't even help me reschedule. i asked if they could and they told me to call the number i had called to schedule. what number that is, i don't know, my lawyer did that, not me...

it's all a mess. for the longest time i thought they just dropped my case altogether. it's exhausting. be patient with disabled people who are in the process of applying for benefits- we want it to go by faster, too.

[wheelie-sick]

Basic dislocation/subluxation first aid

Keep in mind I am not a doctor, this is information I've gathered from medical sources and personal experience. I've done my best to link sources.

Some vocabulary first:

Dislocation - A bone is out of place to the extent that the bones are no longer touching

Subluxation - A bone is partially out of place but still touching the other bone

Dangers

When dealing with frequent dislocations and subluxations it's important to note that dislocating some joints is more dangerous than dislocating other joints. While all dislocations are medical emergencies some people choose not to go to the hospital for all dislocations and subluxations they experience however there are some that absolutely require emergency attention. In particular:

Vertebrae - Dislocating or subluxating a vertebra will cause a spinal cord injury. It's important that you seek emergency care to evaluate the extent of the damage and prevent further damage as severing your spinal cord completely can be fatal.

Collarbone - If your collarbone dislocates inwards it's important to seek emergency care to prevent further damage. A dislocated collarbone can cause life threatening problems with breathing and blood flow.

Knee - If your knee (not kneecap) dislocates it's important to seek emergency care as up to 40% of knee dislocations cause vascular injury that can threaten the entire limb if untreated

And while not all dislocations and subluxations are life or limb threatening all will damage your soft tissues in the surrounding area. A joint popping out of place is bludgeoning in all the surrounding structures in the process. That's why it's important to take care of your dislocations and subluxations correctly.

Improperly healing a dislocation or subluxation also poses its own risks. When dislocations and subluxations first happen the tissues holding the joint in are damaged making it easier to dislocate/subluxate a joint again. Not allowing these tissues to heal poses risk of additional dislocations and subluxations and can create a vicious cycle of tissue damage.

Reduction (Relocation)

Jaw

Vertebra - Go to the ER

Collarbone - Requires medical assistance

Shoulder

Elbow

Finger

Hip

Knee

Kneecap

Ankle

Toe

There were no available guides on reduction for wrists and ribs

What to do following a dislocation/subluxation

Reduce the joint

Apply a brace or splint to the joint. This brace will need to stay on for several weeks-months to allow the soft tissues to heal. This brace is more than a day-long commitment. Bracing is important because it stabilizes the joint while soft tissues heal and prevents further dislocations/subluxations.

Take weight off of the joint/avoid using the joint for 1-2 weeks. When people have been dealing with chronic pain it's easy to try to continue using a recently dislocated/subluxated joint. That joint needs time to heal and that healing will only happen with rest.

-> "I dislocate/subluxate joints so frequently that I cannot possibly do this"

I would make sure that what you're experiencing are actually dislocations/subluxations. A lot of people with disorders that cause subluxations/dislocations mistake ligaments and tendons popping for subluxations and mistake subluxations for dislocations. This causes people to think they are subluxating/dislocating many more joints than they actually are.

If you are truly experiencing that many dislocations/subluxations I would strongly recommend speaking to an orthopedist to discuss bracing and/or surgery for your joints.

If you aren't able to see an orthopedist it's still worth trying the above steps to the best of your ability.

[giraffe-showbiz]

I want to remind my fellow hEDS online community that the acronym EDS stands for Ehlers Danlos Syndromes, plural, not Syndrome, singular. It refers to all syndromes that are classified as being an Ehlers Danlos Syndrome. This is current terminology as of at least 2017.

I know this seems pedantic, but I feel like people who refer to hEDS as EDS or use the phrase “Ehlers Danlos Syndrome” unintentionally contribute to the erasure of the rarer and statistically more terminal versions of these syndromes.

If you are uncomfortable stating which of these syndromes you have or you are not sure which you have, an alternative phrase is “I have an Ehlers Danlos Syndrome” or “I have a genetic connective tissue disorder”.

I really do believe that phrasing matters in this situation. I think it is incredibly unfair to people who have an EDS that isn’t hEDS to have the term distanced from themselves by a community who has more online resources and community purely based on it being more common.

This user has Hypermobile Ehlers Danlos Syndrome and many of its comorbidities.