#ehlers danlos spectrum

[highhellkisses]

I am still relatively newer to the chronic illness/injury world in the sense that I've only had a diagnosis or debilitating symptoms for the past five years(give or take, and I know some people experience it for many more years. But I am still well seasoned enough in chronic pain to know that it is exhausting, emotionally draining, isolating, and horrific.

I've been lucky enough to have the past few months, even year, not suck for me. But, due to an inability to see my physical therapist for about two months, sadly I am back to a state of debilitating pain.

And even though I have experienced it before, even though I have first hand knowledge of how it feels to be living with it, even I forgot how tiring and lonely it feels to be in such pain.

So if you have never experienced chronic illness or pain please give grace to those around you that might be dealing with something similar. I know you don't understand. I know it can be annoying. But please reach out and ask how they are, how they are really. Push for how you can help. We don't want to be a bother but it's so nice to have people care and send a kind word. Even if you've been through it it's easy to forget how it feels in the moment(our brains are funny things, darn survival mechanism!)

Just be kind and give grace.

[stellaltumi]

my chronically ill best friend just said "I feel like the side effects part of a medication commercial" SO FUCKING TRUE BABE

[chronicsymptomsyndrome]

sometimes when chronically ill/disabled/neurodivergent people say “I can’t do this thing” they really mean “I can technically do this thing I guess, but not without pretty significant repercussions” and I really need more fully-abled people to understand the validity of that

[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.

[extreme-dyke-syndrome]

Non-hypermobile people will never know the pure joy that is being able to scratch literally anywhere on your back when it itches.

[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!

[choixsimple]

Hey you with the chronic hypermobility and/or orthostatic intolerance issues

If you have a menstrual cycle, has anyone told you how it affects your chronic illnesses?

Probably not so I'm gonna!

First here's a basic chart showing the large fluctuation in hormones during your cycle:

If you have hypermobile joints, the level of estrogen in your body will heavily impact the stretchiness of your connective tissue. During ovulation, estrogen has a huge spike, which will make you extra stretchy! You are more prone to injuries, subluxations, dislocations, and general joint issues during this time. There's also a smaller increase in the week before your period, which can also affect joint laxity.

If you have orthostatic issues (or even if you don't, tbh), you'll be interested to hear that both estrogen and progesterone affect your heart rate. Generally your resting heart rate will be higher in the days before your period due to rising progesterone levels, and then drop back to normal after your period starts and progesterone levels fall. Estrogen is also at its lowest level during your period, and with low estrogen levels comes a higher number of heart palpitations and potentially a higher heart rate, depending on the person.

This combo of low estrogen and high (and then low) progesterone, plus the whole bleeding thing, means you're extra susceptible to dizzy spells, presyncope, and fainting in the few days right before your period and the first couple days of your period (and if you have a heavy flow, this can continue longer). It also means you might feel a lot more stable, less dizzy, have less heart palpitations etc around ovulation due to the extra estrogen.

There are a bunch of other bodily functions, chronic illnesses, etc that are affected by hormone levels during our cycles, and there are some good resources online about what these hormones do — I didn't even talk about FSH or LH, the two other big hormones that are part of our cycle! But I didn't want to get too far into the weeds in this post.

PS there's a theory that the reason more AFAB people (even many without a uterus or menstrual cycle, AFAB hormones are Kind Of A Bitch) get diagnosed with things like chronic fatigue syndrome, hypermobile disorders w/chronic pain, POTS etc is because we have a built-in flare up every month (sometimes two, if you flare up at both your period and ovulation). So it's just much more noticeable in AFAB people because AMAB folks don't have to deal with those built-in flare ups every 2-3 weeks.

[your-fav-is-hypermobile]

Hao wen Yang from Ghost Story is hypermobile !

requested by @haowenyang :-)

[crippledpunks]

maybe i like the way that my ehlers danlos syndrome makes my skin abnormally soft. maybe i like the way it makes my skin fold and hang in ways that i don't see on most other people. maybe i like that my body is unique and one of a kind. maybe i like that i have been told by previous partners that i'm a luxury to hold and that i feel great to touch and am great to look at.

my disabilities suck ass, yeah, no shit. i hurt myself and sublux my joints often. but i'm also allowed to like the parts of it that aren't all bad. i have an extremely unique skin texture, and i think that's pretty fuckin cool. maybe i'm allowed to like that part of it. maybe cripples are allowed to try to feel at home in our own bodies, as they are, without needing to feel like they'd only be happy if they were 'cured'.

[justaminnow]

I think I misunderstood the song because my leg bone is NOT connected to my hip bone.

[stellaltumi]

ah yes, the age old question:

am I getting over being sick, or did my baseline get worse

[can1nezz]

me being kinda chill w being disabled and not being able to do anything and then i suddenly get flashbanged by the reminder that before this, i was playing 3 sports at a time, going on walks and runs regularly, working out, i was so good...what.happened?

like earlier this year, january 26th to be exact, i went to my first ren faire and i walked and ran and did quadrobics everywhere and now im thinking about not going at all to minimize the risk of a flare up. id fr only be able to go if i had a wheelchair (which i dont have, fyi)

i could go and bring my cane and take breaks and pack a flare bag (snacks, water, my meds, etc) but idk sigh. ill probably end up going.

[sebs-out-of-spoons]

i’m going wheelchair/cane shopping tomorrow at a local thrift store, so excited, WISH ME LUCK EVERYONE :3

[lokilysolbitch]

people with Fucked Up Connective Tissue Disorder™️: wait okay so wait...so if your hip joint feels like it clunked into an odd position and it felt like a nerve down your entire leg got jumpstarted....is that like......soreness from exercise?? or something???🤔

it's me i'm people

[squarebracket-trickster]

This is a real long shot but... any writers who see this who have hypermobility or a hypermobility disorder, please feel free to share your tips! How do you make writing sessions comfortable for your body?

Sincerely, a person with g-HSD whose pinky knuckles have a personal vendetta against touch-typing.

Non-hypermobile people please feel free to share this around<3

[problem-project]

Calling all individuals with hEDS:

I'm starting to think there's a possibility I have hEDS, but the doctor brushed me off about it before I could really explain why I even think I could have it. I'm going to add on this post,my current evidence I have that makes me believe I could have it, but there is more I haven't fully documented.

My first reason for believing I could have hEDS is because I've had joint pain my entire life, including as a small child. I had to wear a knee brace throughout middle school because my kneecap would move too much during gym class, and I was in intense pain. Going onto high school, I ended up needing to be dismissed from gym all together because any type of running would flare up a migraine, which turns out was because I had undiagnosed Idiopathic Intracranial Hypertension at the time (can often be comorbid with hEDS.) Now I am slowly getting to a POTS diagnosis which can also be comorbid with hEDS. I also still experience growing pains in my hips, knees, and ankles as an adult, which is not normal. I also get chronic ankle pain from driving, and I have severe lower back pain nearly every day. Now, onto the symptoms you can see:

1. Hypermobile joints

2. Thumbs can touch my arms

3. Stretchy (?) Skin

4. TW feet lol but visible fat pads/papules in my heels

Now this is just what I've compiled so far, and I'm sure I can add more in the future, but does anyone who's been diagnosed with hEDS think I should keep pushing my doctor? I don't know if I could just have a mild form of it or if I'm just looking too hard for an explanation to my symptoms and pain? I want advice on what I should do and if I should keep pressing for someone to look into this. I just want an answer for my pain.