#Ehlers Danlos Sydrome

[helenwhiteart-blog]

Cervical instability at the core of fibromyalgia?

I just want to pick up the thread of cervical instability and its relationship with chronic pain again, as written about just the other day in the context of covid (having found numerous suggestions that covid can aggravate or even instigate cervical instability). In particular, I want to look at how this one, often unnoticed, structural issue might very well be lurking there right at the very…

[thischarmingamy]

Frazzled & Gastroparesis

My body is so tired and my vision is blurry, but I’m wired! It’s not Red Bull or anxiety keeping me up. It’s steroids. I’m on a course of dexamethasone (AKA Decadron) to break up an intractable migraine that I’ve had since January. Decadron sounds like the name of a demon from Supernatural or maybe even a Transformer? The good news: the steroids are working and the migraine is finally ebbing.…

[fatal-blow]

growing up, my mum always told me, whenever i went to the doctors or any sort of health professional, that it was important that i told them that i was hypermobile. she'd done the tests with me (herself being hypermobile and disabled in large part because of it) and though she didn't know the details, she knew that hypermobility was important to have in my health record.

so it was to my great surprise and displeasure that, whenever i told doctors i was hypermobile, it was skipped over. never addressed, never touched on, not even a comment to belie what that meant for me. i myself didn't know the impact hypermobility could have on a person, but my mother had been insistent about that fact. it was important, so why did no one else seem to think so?

i grew up with kids in school who were on the extreme ends of hypermobility. i knew a boy in middle school who could put both feet behind his head. i knew a girl in high school with long, spindly fingers who showed me how far backwards her arm could bend.

both of them had health problems, which became more profound as they aged. i never knew the details, but it stuck out that they were hypermobile, and so was i, and with my own health declining there HAD to be a connection.

common knowledge gives the vague definition of hypermobility as extra stretchy muscles, of being double-jointed. it comes with warnings not to push your hypermobile body into the extremes. don't overextend, you will hurt yourself.

the warnings are warranted. the importance isn't overplayed. these things i knew, but i didn't know why. and without knowing why, they were warnings that i could never truly obey, despite how conservative i became with my movements in a vain attempt to protect what little ability i had left.

hypermobility is NOT stretchy muscles. muscles are supposed to stretch. in fact, it's important to their health (those conservative movements prolly hurt more than helped!). hypermobility affects connectives tissues, and lands under the umbrella of Ehlers-Danlos Sydromes (there are a few) which can range in severity from affecting skin and tendons to affecting blood vessels and organs.

severity is rare, and much easier to catch. this post is for the people who are "a little hypermobile" so that they can understand what makes their body different.

a muscle and its associated tendons are like a hammock. the muscle is the fabric you lie in, stretching to accomodate the load. tendons are the rope that attaches the fabric to the trees, providing a secure anchor for the muscle to operate.

so, what happens when the ropes on the hammock are also stretchy? well, you sit in the hammock and your ass hits the ground.

now imagine that the fabric of the hammock has the ability to clench like a muscle. a normal hammock doesn't need to work that hard to stop ass from meeting ground, because it has sturdy anchors. a hammock with stretchy rope, however, must exert several times more effort, because the more the muscle pulls, the more the tendons stretch.

in short, hypermobility forces your muscles to work harder, because they must first pass the threshold of stretch the tendons are capable of before it can actually do the task it's meant to do. the stretchier the tendons, the harder the muscle needs to clench, the easier it is to overwork.

this info reframed everything i was doing with my body. small tasks of strength required the effort of much larger tasks, and larger tasks ranged from extremely difficult to impossible. holding my arms up so i could work above my head required monumental effort. with an anatomical peculiarity of the feet, i needed to use several muscles in my calves and hips just to stand without losing balance.

so no fucking wonder i crashed and burned in my 20s, when everything i did took all of my strength to accomplish. no wonder i would contort myself out of shape, so flexible that i could anchor myself into extreme poses just to give my muscles a moment of relief, overstretching myself without ever realizing why, and what damage i could be doing.

so, some things to remember:

overextending isn't good for you, but it shouldn't be your biggest concern. instead, be aware of overexertion, both how LONG you are using a muscle without breaks and how HARD you are using it.

small, frequent breaks are your best friend if you need to do something for awhile.

when you take breaks, stretch the muscles you'd been using.

if you need to exert effort to maintain a pose (whether it's sitting, standing, etc) examine whether you need to be clenching those muscles, and why.

actually whenever you are using muscles, try to train yourself to use as few as possible. you can practice by sitting or standing, and relaxing as many muscles as you can before you tip over. finding a sense of balance can make your life so much easier.

become acquainted with what relaxed muscles feel like. chronic tension can distort your perception of this, and result in habitual tension.

so yeah. if you're hypermobile, that's important. don't let a doctor's dismissal make you think otherwise. take care of yourself and know what you are and aren't capable of.

[thedeafprophet]

for the trio and disabilitity:

Josephine has Ehlers Danlos sydrome, and deals with frequent joint pain and over extension. She uses splints and braces to help keep things in place and manage pain. She is also autistic and has a complicated history with masking that ties into her need to be overly perceptive in situations

Alex is autistic and has adhd, alongside dyslexia and dyscalculia and general learning disabilities. This effected his school years when he was younger, and impacts his communication and understanding still to this day. He learns best in his own ways.

Jamie has fairly severe ADHD symptoms, which heavily effects the way they function in the day to day. They also have some fairly bad undiagnosed mental health problems, which is a push and pull struggle for them and is a part of them that very heavily influences their story arc. I've also toyed with them being hard of hearing too but i still have to think on that a bit more...

[magnhild]

i've been meaning to make one since first watching into the spiderverse and now here they are!! a nonbinary lesbian spiderperson who's also a fucking furry and gets to have more muscles than i do irl 

they also have ehlers-danlos sydrome, not because of any inspiration from sun spider (though she is cool), but because i simply have eds myself. they also have adhd and are autistic, again, because me

[ao3feed-crimeboys]

We're Leaving The City, So This Is Farewell

by alastair_has_stairs

"Are you ready for a road trip?" Wilbur grins, watching Tommy slump against his door frame, dead on his feet.

"I hate you." Tommy croaks, rubbing at his eyes to clear his vision. Wilbur chuckles, stepping closer to pull Tommy into a hug.

"You can sleep in the car, sunshine." He promises, kissing the crown of his head. "I'm holding you to that." Tommy yawns, pulling away to stretch his arms above his head.

Wilbur rolls his eyes, fond.

Or; Crimeboys move out of the city.

Title from Respite on the Spitalfields by Ghost.

Words: 2727, Chapters: 1/1, Language: English

Series: Part 99 of Dadbur brainrot, Part 7 of Disabled Tommy fics, Part 22 of Cat shifter crimeboys, Part 1 of Blue Mountains

Fandoms: Dream SMP, Minecraft (Video Game), Video Blogging RPF

Rating: General Audiences

Warnings: Creator Chose Not To Use Archive Warnings, No Archive Warnings Apply

Categories: Gen

Characters: Wilbur Soot, TommyInnit (Video Blogging RPF)

Relationships: Wilbur Soot & TommyInnit

Additional Tags: Wilbur Soot Loves TommyInnit, TommyInnit Loves Wilbur Soot, Wilbur Soot is TommyInnit's Parent, Wilbur Soot Acting as TommyInnit's Parental Figure, Cat Shifter TommyInnit (Video Blogging RPF), Cat Shifter Wilbur Soot, Autistic TommyInnit (Video Blogging RPF), TommyInnit Has ADHD (Video Blogging RPF), Neurodivergent TommyInnit (Video Blogging RPF), Neurodivergent Wilbur Soot, Pet Names, Platonic Kissing, Wilbur Soot Calls TommyInnit Pet Names, Disabled TommyInnit (Video Blogging RPF), Chronically Ill TommyInnit (Video Blogging RPF), TommyInnit in a Wheelchair (Video Blogging RPF), Mobility Aids, Ehlers-Danlos syndrome, Postural Orthostatic Tachycardia Sydrome, functional neurological disorder, Author Projecting onto TommyInnit (Video Blogging RPF), Moving, TommyInnit is a Menace (Video Blogging RPF), TommyInnit is a Ray of Sunshine (Video Blogging RPF), Ambulatory Wheelchair Use, Tommyinnit Has Chronic Pain (Video Blogging RPF), Wilbur Soot is So Done, Soft Wilbur Soot, Good Parent Wilbur Soot

[mistressofallthingsgeeky]

I have Vascular Ehlers Danlos Sydrome. My joints are fucked up. I bruise like a peach. My back is in agony. I feel the rain coming in my knees and my fingers.

I'm 20-fucking-7 years old. And I'm always told I'm so young to be sounding so old, and it's like Fuck You Martha, I didn't ask for the fucked up genetic cocktail, they served it to me at the bar and said fucking deal.

Young people can have back pain. Young people can have joint pain. Young people can require a cane to get around. Young people can have memory problems. Young people can get migraines. Young people can lose their eyesight. Young people can lose their hearing. Young people can lose their teeth and require dentures. Young people can have neurological disorders. Young people can go through menopause. Young people can have heart attacks. Young people can have strokes. Young people can go through all kinds of things you think only happens to older people and they don’t deserve to be invalidated or bullied just because you have never heard of it.

[snapcracklepop-myjoints]

Fun new idea: every time that I tell someone I have POTS and they respond “you have pot??!??!!?”, a baggie of weed falls onto my head from the heavens. I think that would be really fun and I deserve it.

[tiny-doe]

when u dislocate ur shoulder carrying a 1 lb bluetooth speaker

pain and suffering

[mistressofallthingsgeeky]

I'm so sorry Rhi!

Chronic illness that can't be cured sucks ass, especially when it makes you hurt.

I still have to find a rheumatologist, but I just found out that I have the genetic mutation for Vascular Ehlers Danlos Sydrome, and most of the symptoms. Have you tried Arnica? My aunt sent me some Arnica lotion and it helps a ton when my hands and legs and knees ache.

So I finally saw the rheumatologist today and they are 95% certain all of my pain/fatigue is fibromyalgia. They've obviously done the "lose weight" line again (and I'm 13lbs down in a month, thank you very much, back under 200lbs) and increased my painkillers. I'm hoping the pregablin doesn't make my memory worse because apparently I'm forgetting entire conversations lately.

I guess it's nice to have some sort of answer to everything, but disappointed it's yet another thing that can't be fixed, only managed. Right now, I'm still sitting with it, I've got a few more tests to go through, and I suppose I'll figure things out from there?

[thischarmingamy]

My Christmas Miracle

Candy O. a few years ago This is my bestest old gal Candy. Last night, she couldn’t walk straight and was falling over. We took her to the vet ER where she was diagnosed with nystagmus (wonky eyes), a vestibular event, and a possible TIA. But we had a Christmas miracle and the nystagmus resolved! And then she was able to walk again. We need to keep an eye on her and if it happens again we’ll…

[autumnwoodsdreamer]

Some people get gossip from hairdressers; I get gossip from the receptionists at the cardiologist’s...

What even is my life?

[pinkyshadow-blog1]

New diagnosis!

Hey everyone so today I saw a new doctor for the first time and he is amazing! He actually knows what he's talking about which is new XD and he actually examined me and looked at every single issue I had and addressed all of them and he confirmed my suspicion of having POTS! I am officially diagnosed and it's such a relief to have it confirmed and to have a label for what I've been going through just like with EDS. I have high hopes for this doctor 😄. Anyhoo, have a dope ass day everyone!

[lumine-no-hikari]

Tagged by @verysmolspams

Last song: Either Hadaka No Yuusha by Vaundy, or Continue, by The Megas. I don't remember which.

Favorite color: Yes.

Currently watching: Re-watching The Zeta Project. It can be found on https://www.wcoforever.tv/

Spicy, savory or sweet?: Savory. Specifically, anything high in collagen, like chicken skin, bacon, salmon skin, pork rinds... I have Ehlers-Danlos Sydrome; my body does not produce collagen properly, so it wears out faster, thus I need more to continue making the cheap alternative that my body churns out.

Last thing I googled: Land O' Lakes Snowball Cookie Recipe

Thank you for thinking of me, @verysmolspams I can't think of anyone to tag who would want to engage, so I'll avoid bothering anyone.

𝔑𝔦𝔫𝔢 𝔓𝔢𝔬𝔭𝔩𝔢 ℑ'𝔡 𝔏𝔦𝔨𝔢 𝔗𝔬 𝔊𝔢𝔱 𝔗𝔬 𝔎𝔫𝔬𝔴 𝔅𝔢𝔱𝔱𝔢𝔯

Tagged by @0junemeatcleaver0 and @uncivilcivilservice

Last Song: Hoist the Colours (Bass singers version) by Bobby Bass

Favorite Color: Tough question, I like dark reds and blues a lot, but also may soft blues

Currently Watching: Just been watching crafting youtube videos ^_^''

Last Movie/Show: Handmade: Britain's Best Woodworker (this season wasn't as good as the last two imo)

Spicy, Savory, or Sweet?: can i have savory with sweet?

Last Thing You Googled: the name of the wood working show lol

Tagging (with no pressure to do it): @this-writer-needs-coffee @altocat @glamgoblin @fofoqueirah @complicitsacrilege and anyone else who wants to do this (I'm so bad with remembering people's names I'm sorry)

[rosalindrobertson]

Hysterectomy, four months later.

It’s pretty amazing what they can do now. I had a total hysterectomy/salpingectomy the day after Valentine’s day. The usual disclaimer stuff applies: this isn’t medical advice, just experience. 

It was laproscopic, so no huge scar but make no mistake, lots of stitches. Other fun things, your ovaries do NOT like to be forcibly relocated. They spent the first week more or less freaking out and pulling a variety of stunts, including some sweats so bad I need to replace bedding, and a sudden bloodhoundesque sense of smell that has still not abated fully. 

doing my best to break up the scar tissue and keep adhesions to a minimum. 

I asked they bring me out of anesthesia without pain control, that we titrate it. I have had them do a successful series of nerve blocks and gotten such good pain control I sobbed for hours and went into a depression knowing how bad my daily “normal” is in real life. So didn’t do that again. A bit of dilauded and a bucket of toradol (a powerful NSAID) and advil from there. 

Major mood swings. Change in pain patterns.

It feels like someone rearranged my living room without my permission and I can’t put things back and am tripping over them. 

But the hair is the weirdest. It’s the thing no one can explain, and my poor colourist, god love him... after a lovely colour about six days after (I was bored), my hair just... snarked. It won’t bleach/lift, it started to fry really fast, and the colour won’t stick. We tried three times, there was even a moment of “you might have to live with blonde until this settles” and I don’t know what he finally put on my head but it’s pewter again. 

Just a reminder, surgery is HARD. A hysterectomy is ROUGH and that’s if you don’t have my laundry list of medical weirdness and pain disorders. And when you’re sick, it’s the small things that matter. Like a good colour and a cut that just falls into place.

Hope the rest sorts out soon. xoxo 

(Cut, June Croken, Hairdresser on Fire, Colour, Rob Pizzuti, Hair Artisans)

[helenwhiteart-blog]

Is limbic retraining any use for structural chronic pain such as EDS? (Spoiler: yes!)

Is limbic retraining any use for structural chronic pain such as EDS? (Spoiler: yes!)

Its been a while since I’ve written for this blog because I’ve been deeply into the process of following the Gupta Program limbic retraining since February and wanted to give my all to that…ongoing. I’ve seen massive improvements in many area of my health management, far too many and particular to me to itemise and, of course, this doesn’t mean I don’t continue to have the occassional flare-up of…