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#ehlers danlos and comorbidities

69ottersinatrenchcoat · 1 month

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officially got diagnosed with POTS today 😎

(and had another physiotherapist take a look at my joints and skin and go 'yeah that's... that's bad and looks suspiciously like hEDS but i dont have the qualifications to say for sure, sorry')

this comorbid disorder sh*t is a pain in my... well, everywhere, but t least i know i'm not misreading my symptom set :) that's a relief at least.

#another one bites the diagnostic criteria #my nose is bleeding as i type this #potsie #pots #pots syndrome #eds #hEDS #hypermobile eds #hypermobile ehlers danlos #probably heds #hypermobility #comorbid conditions #frick the comorbid conditions #posted by 🐚

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dsm-v · 11 months

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autistic people always going online like “hey do any other ActuallyAutistic people experience this clear symptom of connective tissue disorders or is it just me?” babe yes we all do

#autism and connective tissue disorders like Ehlers-Danlos syndrome are highly comorbid wake the fuck up!!!#you have ‘chronic muscle tension’ bc u probably have an undiagnosed underlying connective tissue disorder or something else similar!

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chxrlizexx · 1 year

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As a person with chronic pain, heat packs are a GODSEND!!

But not because they actually reduce inflammation or anything, that would be too easy.

I have reduced blood flow to my hands and and a stuffed up nervous system, so when I get hand pain, I just put a heat pack on it and my hands go almost completely numb! Problem solved! :D

#potsie #potsawareness #eds #chronic pain #when your comorbid conditions hate you but it sometimes works out #disability #disabled #postural orthostatic tachycardia syndrome #elhers danlos syndrome #temperature regulation #it ain’t my strong suit #ehlers danlos zebra

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0xo · 11 months

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i would like to remind everyone that most disabilities come with comorbidities. what this means is that, most of the time, someone who is disabled does not have just *one* condition that causes them pain or difficulty.

for example, i have crohn's, which is an autoimmune disease primarily affecting the bowels. i also have ehlers-danlos syndrome(eds), which is a connective tissue disorder. eds can make crohn's worse because eds can affect your intestinal lining. crohn's can make eds worse because crohn's can also affect joint inflammation, so loose joints become more inflamed than they otherwise would. both can severely affect fatigue levels.

these are just two things i deal with. there are other comorbidities and complications i deal with, like fibromyalgia, dysautonomia, nerve damage, and more; but eds and crohn's are the easiest to explain how they play off each other.

i don't think abled people realize that most disabled people deal with something like this. i see disabled people online being very open about their multiple diagnoses to raise awareness and understanding - and then i see abled people shitting on them because "there's no way you can have that many things wrong with you."

but this is the truth of the situation: being disabled is almost never a straightforward, one-and-done diagnosis thing. even if it starts as one diagnosis, many people discover or develop other problems as their health changes. or even develop other issues because of medications! the intravenous medication i took for crohn's causes arthritis in a significant number of patients, and is most likely responsible for just how severe my joint inflammation gets.

so if you're abled, and you've ever seen a long diagnosis list and thought maybe someone was exaggerating - please step back and rethink. this is a very common thing. i would dare to guess that more people are multi-diagnosis than single-diagnosis. you are not helping anyone by accusing someone of faking or exaggerating, you are just being ableist.

as a disabled person, it takes immense bravery to speak openly and publicly about how our lives are affected by our disabilities, and we do not deserve to be treated poorly for being honest about our realities. your lack of knowledge or willingness to learn should not become our additional pain.

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aroaceleovaldez · 1 month

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Nico Di Angelo headcanons?? (I hc he has cfs, that’s basically canon though)

He DEFINITELY has ehlers-danlos syndrome. Always cold? Poor circulation. Frequent fainting? Poor circulation and also poor nutrient/water absorption and etc. Weirdly pale? Semi-translucent skin + did i mention the poor circulation. Weird vitals? Can. Can you guess. (Poor circulation). Chronic fatigue? All his joints are subluxating constantly. He tends to stand/pose weird cause his joints all bend backwards/hyperextend and it freaks people out but he finds it kinda funny. Plus EDS has comorbidity with adhd and autism babeyyy it all works. somebody get this boy a pair of crutches.

Also Nico bruising like a peach is funny. He wakes up covered in bruises and just presumes ghosts are beating him up while he sleeps but no, he just has paper skin and glass bones joints.

The skinny jeans are strategical they're compressive and the only thing keeping his legs from dislocating constantly. That and the bone powers. The bone powers help a lot with the dislocating problems.

NICHE ROGUE DEMIGODS WORLDBUILDING THING: Okay so short version is something something i like to think rogue demigods go by nicknames often instead of their real names cause of the whole "names have power" thing. Some rogues pick their rogue name, others just kind of end up with one over time from people calling them something, whatever. Nico's main one is "Hound"/"Hound of Hades" cause he keeps wandering around with a pack of hellhounds and intimidating the daylights out of everyone. Also the rogues who are less scared of him joke about him being CHB/Camp Jupiter's dog, since he's one of the few rogues with direct loyalties to the camps. Nico thinks the name "Hound" is badass though so he rolls with it.

The jacket is both a sensory object (autism babeyyy) and because he is constantly mildly cold. He likes having layers.

In terms of sensory/clothing stuff, he prefers clothes that are too big or generally baggy on him. Because of this he is a notorious clothing thief when it comes to his friends. No jacket is safe from his clutches. His own clothes are big enough that the Argo II crew can steal from him right back though and it'll actually fit so it evens out.

He got all his emo inspiration from Thalia. She gave him her ipod in TTC for like 20 minutes to get him to shut up and that was a canon event that changed the trajectory of his life forever.

He regularly does little chores and errands for different deities and is generally friendly with a ton of them and will hang out with them and help with stuff. He may or may not have briefly been an Eye of Anubis, and may or may not have partially influenced how Anubis ended up goth (by transitive property, this means Thalia has made at least one god goth. There Will Be More). Other gods he often hangs out with (besides his dad) include Thanatos, Charon, Persephone, Demeter, and more.

He also has kept in touch with Eurytion and Triple G ranch to help out there sometimes and he dogsits Orthrus occasionally. Mrs. O'Leary and Orthrus are friends.

The idea of Hades/Pluto kids being allergic to mint because of Minthe is very funny to me.

#pjo #riordanverse #nico di angelo #headcanon #headcanons #ask #Anonymous #EDS nico

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noodle-shenaniganery · 5 months

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I think one of the big issues with autism representation is largely that we don’t get that many autistic characters in media. It’s impossible to represent the entire spectrum in one character. And oftentimes, even when we do get representation, it’s the same types of characters over and over again. The spectrum is broad! It’s chaotic! Almost any representation could hypothetically reflect someone’s experiences, so why keep using the same few archetypes repeatedly? There are so many ways an autistic character could be written. Look, here’s some:

- A nonverbal autistic character with the power to manipulate plants who often uses plants to communicate (e.g. grows cacti when upset, dandelions when happy, roses when they like someone/something, orchids when confused, etc.). They also use plants to move around, grab things, point, etc. due to significantly impaired motor control.

- A nonspeaking, physically disabled autistic character with strabismus who is the ‘tech genius’ of the group. They often can’t go on missions themself because of their disability, but are completely fine with providing the rest with the gadgets, advice, and the occasional Dad Joke™️.

- The ghost of an autistic person who keeps trying to make friends with the new residents of their home, but doesn’t understand social rules at all and keeps accidentally scaring people by appearing/saying things without notice. They also stim by yelling, singing, and moving (things) around, which understandably freaks people out.

- A blind, semispeaking autistic teenager whose special interest is music, and their life mostly revolves around music. They mostly speak in song quotes, and are trying to learn how to play as many instruments as possible. They switch between different mobility aids that help them get around (they are dynamically disabled from their Ehlers-Danlos Syndrome), from crutches to wheechairs. They could also try to be in their school’s music club and/or orchestra, while also dealing with high school shenanigans.

- An autistic adult who, after decades of going undiagnosed, is now adjusting to life knowing that they’re not broken, just different. They also have comorbid mental illnesses, partially as a result of their late diagnosis.

There you go. There’s some ideas.

(If anyone uses these, please tag me or let me know, I’d love to read some stories with these.)

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taidelmoro · 7 months

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spoonie penpal wanted!! 🥄

♿ looking for a chronically ill and/or autistic penpal!

Hey, hello! :]

My name's Tai, I'm 22 years old, from Brazil & I'm looking for a pen pal!

I'm specifically looking for a chronically ill, disabled and/or autistic penpal to share experiences only spoonies would understand - if you are not a spoonie yourself but u are supportive and respectful, you can still send a request if you're interested! ♾

🌼 About me!

🦇 I deal with multiple diagnosis;

Autism, Connective Tissue Disorder (currently investigating Ehlers-Danlos Syndrome), dysautonomia & autoimmune conditions (SLE) + comorbidities like IBS, food intolerances, mental disorders, etc).

All diagnosed, but we still have more questions than answers.

🦇 I'm an artist 🎨 [Tradicional & Digital] ;

🦇 I speak english & brazilian portuguese;

🦇 I'm kinda new to penpaling;

I've always loved writing letters & crafting gifts, but I'm new to actual penpaling, so you could be my first ever actual penpal! (I also researched a whole lot about it so call me experienced >:] )

🦇 I might need to take breaks;

I might take a bit longer to send letters or need to take breaks from time to time due to my health conditions.

☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆

🤎 Hobbies: All sorts of art, journaling, baking, gardening, listening to music (i love SOAD) & watching cartoons (i love OTGW);

🤎 Interests: Art, nature, halloween, animations / cartoons, minecraft, all animals!!, paganism/witchcraft, alt styles, etc.

☆ Special Interests: Commemorative dates & festivals, nature and studying about neurodiversity and medical conditions.

☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆

🤎 Ideal penpal:

• Snail mail preferably, but digital's also ok!

• Long term (preferably);

• Any gender, any location, any age above 18;

• LGBTQ+ friendly, trans ally, etc;

• If not disabled themselves, respectful towards disabled people;

• Likes getting creative / crafty w/ their letters, but is also open to share thoughts, ramble and build a friendship (i don't mind long letters!!!);

• Is someone who can be patient and understanding about my mental and physical limitations;

☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆

👻 What else to expect from me? 🖍

• stickers!!! • poems • tea • trinkets •

• pretty letters • pressed flowers •

• lots of drawings & doodles • existential crisis •

• we can talk about the extras we have / would like!! ♡

Anyways, feel free to DM me or comment if you're interested!

☆ e-mail: [email protected]

Lets chat for a bit :] ⭐

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basshole-astard · 1 year

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hey you, blogger. do you find yourself in incredible pain daily? even weekly? despite being in your 30s, or younger? despite doing everything that's ""supposed"" to help?

On top of being in incredible pain, can you or could you at any point in your life:

bend yourself into funny positions like putting your foot behind your head

can bend down without fanfare and put your palms COMPLETELY FLAT on the floor

do your elbows bend a bit backwards? how about your knees?

you can bend your pinkies backwards 90 degrees

you find your joints are incredibly weak and garbage; wrists often in pain despite doing stretches; shoulders/neck always hurting no matter how good your posture is; can’t get down on your hands and knees because doing so is Ow Ow Oof Ouch

you have gastrointestinal issues that you cannot link to food in any way (yes, for real,)

headaches/migraines – especially unexplained, but even if you do have an explanation (for real)

never had enough room in your mouth for your teeth

vision prescription gets better and then gets worse again and you find yourself very confused about how??? why????

have really bad allergies including “I can’t use x soap it gives me a rash for some reason” or other similar “coming into contact with certain things makes me break out” (it’s called MCAS, it’s often comorbid)

stand up and your heartrate spikes and/or you get dizzy (that’s called POTS, also comorbid)

Then, hi, you might possibly have something called Ehlers-Danlos Syndrome, or EDS; specifically the hypermobile subtype (hEDS), which doesn’t yet have a known genetic marker and goes wildly underdiagnosed in patients, partly because the things they test for hypermobility are pretty limited, partly because doctors don’t know what it is, partly because doctors would rather diagnose you with a different condition (if arthritis or fibromyalgia diagnoses/treatment didn’t help, well...!) because if it sounds like a horse it’s PROBABLY a horse (but it could be a zebra)

Of course having any one of these does not an hEDS diagnosis make, but if you have multiple on my above list? Multiple of the list I am including below the cut? It’s worth looking into. You can continue on reading to see my brief overview, or you can head to www.ehlers-danlos.com to do your own research; they’re a great resource!

"I have a lot of these but not all of them" that's still worth looking into! I've only got five on the above list, and i definitely still have hEDS! Even three is worth considering!

more symptoms and info below the cut, if you want to hear it from a fellow blogger who was diagnosed at 25 and found the diagnosis Extremely Eye Opening as to why i was always in pain and Various Other Issues

---

General hEDS info: EDS itself is a genetic disorder that affects your connective tissue, which in general makes your joints weak and your ligaments weaker. hEDS is the most common subtype, in which you have a lot of EDS traits AND hypermobility BUT none of the genetic markers for the 12 other EDS subtypes.

“Wait, but this thing I can do is normal, my whole family can do it!” or “my mother’s side of the family is all like this!” hEDS is genetic. It’s possible to have it if your parents don’t, but VERY unlikely. So unlikely, in fact, that having immediate family history of hEDS is one of the 3 main diagnostic criteria for it. (You can still get diagnosed if you hit the other 2, but they only ask for 2/3.)

“Surely it can’t be so hard to diagnose that doctors don’t notice it!” my sister did not find out until she was in her 30s, because one of her friends has hEDS, and when my sister was bemoaning how useless doctors were, her friend was like “....hey those sound like MY symptoms, have you considered you might have hEDS?” (Which, due to it being genetic, is how my mom and I found out we also probably had it.) Also, much like ADHD, doctors are wary of diagnosing people with it, afraid they’re just trying to get the “good” meds.

“What good does a diagnosis/research even do me?” 1) an explanation for why you’re in pain all the time 2) knowledge so you can avoid doing things that would hurt you (you have to be SOOO careful with most forms of exercise!) 3) it’s a disorder that warrants higher pain meds than what you can get OTC, so if you are seriously in a lot of pain all the time, and would like to not be...

I’m gonna put a more in-depth list of symptoms below. If you have any five of them, I highly suggest you poke around www.ehlers-danlos.com and do your own research, because even if you aren’t in a position to get a clinical diagnosis right now, even suspecting you MIGHT Have it is useful, either for an explanation for all the things that seem wrong with your body that couldn’t otherwise be explained, or to know that... hey, you should really be careful with what kinds of physical exercise you’re doing, because your risk of injury for some sports is WAY higher than it is for people who don’t have hEDS. More on that below, as well.

Symptoms list time:

*THIS IS ALMOST DEFINITELY A MARKER OF hEDS*

hypermobile joints

unstable/weak joints

joints that dislocate frequently

CHRONIC PAIN

stretchy and fragile skin (classic EDS marker, but can show up in hEDS): do you bruise easily? Do cuts take forever to heal?

your parent(s) are also like this (it's a genetic disorder!! Chances are you got it from one of them!!! Love to hear “oh my hips do that too!!! Didn’t realize it wasn’t normal” thanks mom.)

"my parents don't have hEDS tho" are you sure. like. my mom didn't know until my sister found out she did. this thing is *wildly underdiagnosed*. Mom’s in her 50s and had doctors diagnose her with arthritis and fibromyalgia, the treatments for which didn’t help her because it wasn’t what was actually wrong

*OTHER THINGS THAT OFTEN COME FREE WITH YOUR hEDS*

chronic fatigue

gastrointestinal issues (if you thought you had IBS, but hit any of the hEDS things, you should consider, well, an hEDS diagnosis; gastroparesis is a common comorbidity)

dysautonomia; i don't have this but it causes things like POTS or "heartrate spikes when i stand" or "i get dizzy when i stand and lose vision briefly"

headaches (and/or migraines!)

MCAS, aka really bad allergies. your nose gets offended at the slightest bit of pollen. the weirdest materials give you a rash. you can only use one soap because all the other ones make you break out. etc.

...ADHD. I’m not shitting you. It is so frequently comorbid that in the UK when you test positive for either ADHD or hEDS they will immediately test you for the other. Connective tissue exists in your brain, as well, so I guess if your connective tissue just doesn’t function properly...

HEY CAN YOU PUT THIS IN NON-CLINICAL TERMS FOR ME

sure! did you, at any point in your life:

- able to bend into funny positions like put foot behind head; especially as a kid (hi! that's me!) but of particular note if you can still do those things now

- stretches like butterfly or crossing your arm over your chest just... don’t feel like stretches? (my sister)

- could you bend and without effort place your palms flat on the floor? can you still now? apparently most people struggle - without regular stretching - to touch their toes, let alone put their palms *completely flat* to the floor. that's hypermobility baby!

- elbows bend a little bit backwards? knees?

- can you bend your pinkies back 90 degrees?

- consider yourself double-jointed?

- shoulders/neck always hurt? and like your muscles are SOOOO tight in your neck all the time? hey guess what: the thing EDS does is make your body produce less collagen, which makes your ligaments weak as fuck, and so your muscles are constantly spasming to hold your head up. this is why you're in pain. this is why working the knots out never helps and they always come back. no, this isn't because you’re on your computer too much. your body was just built differently (poorly)

- stretching never seems to help? stretches make you hurt more??? or even: most forms of exercise cause you pain? yeah, most exercise/stretches are meant for Able Bodied People, not people with an underlying undiagnosed hypermobility disorder. You have to adapt them to your needs, and also stretches will never be the be-all-end-all solution to back pain like those funny little infographics on the internet will try and tell you. Maybe it is for able-bodied people, if you have a genetic condition that causes chronic pain, well,

- “but my shoulders are soooo tight tho” POINTING ABOVE AGAIN. they are doing that because the muscles have to overcompensate for your weak ligaments. Stretching does not fix this; you may loosen your muscles, but they will simply tighten again later. The real fix is doing exercises to improve your shoulder muscle stability – I’ll talk about some exercises below.

- have you ever thought to yourself "what the hell, i'm too young to be in this much pain all the time??" you're right! it might be hEDS.

- struggle with opening jars? weak upper body strength? randomly lose your grip on things you’re holding with your hands? “are you serious” I’m serious

- can't crawl on your hands and knees because that hurts your wrists and your knees?

- tangentially: did your parents say you crawled funny as a kid? army crawl? started walking way earlier than expected? yeah.

- you can't squat or kneel because ow oof ow your ankles ow ow your knees? yeah.

- is getting up from the floor hard sometimes?? despite being 30 or younger???? yeah.

- despite everything, and not trying to be, you're still kind of really flexible???

- like, you could do the splits as a kid without having to train yourself to do it?? you can still do the splits now without any effort at all?

- do you seem to get injured really easily? joints especially, or, again, bruised really easily.

- are you in pain right now? think about it. shoulders? back? legs? did you see the part where one of the diagnostic criteria for hEDS is chronic pain? yeah.

i could probably keep going.

~here's some specific connective tissue disorder things; i've included only the extremely "normal" ones that haven’t already been listed above and/or are easy to check yourself. you can find a full list at https://www.ehlers-danlos.com/what-is-eds/hypermobile-ehlers-danlos-syndrome-heds/ under "how is hEDS diagnosed?"~

listed above: stretchy/fragile skin. By stretchy btw I mean: can you pinch your skin anywhere and pull and get even half an inch away from your body? Neck/back of hand is a good place to try. If you can’t pinch your skin at all w/o hitting Meat then you don’t have this (I don’t, even tho my sister does!) but it’s worth looking out for and alone is like THE thing EDS (all types) is characterized by, so if your skin stretches, that’s of particular notice (but your skin not stretching does not disqualify you from having EDS)

stretch marks (they hate to use this if you're afab, but,)

"Bilateral piezogenic papules of the heel" uh when you're standing are your heels kinda. lumpy. like they got balls in 'em. that's what this is. (this is one of the things i have)

dental crowding (lol!!!!)

can you close your thumb+pinky around both your wrists? (steinberg sign)

when you make fists, thumbs underneath fingers, do your thumbs stick out past your fingers? (walker sign)

“Hey, I’m not really hypermobile - is it still possible to have hEDS??”

in theory! I’m only mildly hypermobile myself, outside of the “foot behind head” trick from when i was ten and the “can even now at 25 bend down and put palms flat on floor with no effort” i have… basically no other signs of hypermobility. Though, I guess “things that should be stretches like butterfly or touching your toes are super easy and not stretches for me” also counts as being hypermobile, huh. It’s just really mild.

And, you know, maybe you just have a different EDS subtype. EDS as a whole is not super well understood, so the chances you got a doctor who didn’t know what it was / didn’t want to order a genetic test about it is still, like, high enough it’s worth looking into, I think.

Basically every issue my body has can be drawn back to hEDS, and that kind of knowledge is insane but also really liberating. There is a cause for this. I’m not just in pain for no reason – or worse – because I’m “bad” at taking care of myself. I have a genetic disorder that makes it so my joints don’t work right and also I’m in pain all the time. It’s not necessarily happy, but at least it’s an explanation, instead of sitting there and shrugging and going “I dunno” about it.

So, sincerely, if even five of the things I’ve listed above sound familiar to you, I think you should look into it. Maybe you’ll research and go “oh, that doesn’t sound like me at all, actually”, but on the chance you, like me, start researching and find yourself going “THAT’S WHAT’S BEEN CAUSING THAT THIS WHOLE TIME????” I think it’s worth looking into. That validation is sincerely quite freeing.

“Ok, you've convinced me. Now what do I do?”

first of all research some more!

https://www.ehlers-danlos.com/what-is-eds/ <-- EDS overview and EDS subtypes! Maybe you have one that isn’t hEDS

https://www.ehlers-danlos.com/what-is-eds/hypermobile-ehlers-danlos-syndrome-heds/ <-- hEDS specific page

https://www.ehlers-danlos.com/heds-diagnostic-checklist/ <-- hEDS diagnostic checklist

https://www.ehlers-danlos.com/assessing-joint-hypermobility/#1667831445611-fb40d58e-84a4 <-- the checklist opens on something called the Beighton scale, which is explained in more detail here. **IF YOU DO NOT SCORE HIGH ON THE BEIGHTON SCALE BUT STILL HAVE MOST OTHER HEDS ISSUES, PRESS FOR DIAGNOSIS NONETHELESS. ENTIRELY POSSIBLY YOU ARE HYPERMOBILE IN AREAS THAT AREN’T TRACKED BY THE BEIGHTON SCALE. IT’S IMPERFECT AND PROBABLY NEEDS TO BE REPLACED BUT THEY HAVEN’T GOTTEN AROUND TO IT YET.**

https://www.ehlers-danlos.com/2017-eds-classification-non-experts/ <-- EDS things in layman’s terms, including comorbidities, like what I was talking about wrt gastrointestinal issues, orthopedic issues, chronic fatigue issues, etc, etc, etc. if you have issues with allergies look at the Mast Cell Disorder one. if you have that “heartrate spikes or I get dizzy when I stand” issue look at the Cardiovascular Autonomic Dysfunction one.

(ngl, sorry if its gross, but learning that hEDS often comes packaged with gastrointestinal issues was what really sealed the whole deal for me being convinced, despite “your sister has it and your mom almost definitely has it” being EXTREMELY damning evidence, because. I have had issues with diarrhea my whole goddamn life. I can’t tie it to food. It just curses me daily.)

second of all: talk to your doctor! or, find a doctor in your area that specializes in EDS. book an appointment, see what they can offer you. they can probably hook you up with physical therapy options (to safely strengthen your muscles to compensate for your weak connective tissue) or some pain management options! If you find the physical therapist is making you do things that make you hurt more and they repeatedly do not listen to you and your body, fire them and find a new physical therapist.

https://www.ehlers-danlos.com/healthcare-professionals-directory/ <-- list of doctors.

Third of all: find a support group if you’d like? There’s FB groups and Reddit groups and probably even more. Links to some of them here: https://www.ehlers-danlos.com/support/

YMMV because hEDS sometimes gets shit on by people with the other EDS subtypes, but at the very least, if a fellow Zebra is bitching about a doctor, you’ll know who to avoid.

Fourth: Just… if you think you might have it, I want you to take a step back and reconsider the way you feel about yourself and maybe about the exercise you are/aren’t doing. I had a lot of compounded guilt about how I “wasn’t taking good enough care of myself” ; when you’re in pain all the time you sometimes start blaming yourself, especially if you, like me, find that exercise is difficult and painful and that stretching doesn’t ACTUALLY help, you quit doing it. But you don’t always quit thinking “well apparently if I did those stretches to prevent back pain that people always talk about, then I wouldn’t have any back pain!!!!!!” and that kind of mindset... sucks.

It's also not true. Like, not in general, but also especially not if you have hEDS. My back is in pain because my body was built different (poorly), NOT because I “wasn’t doing the right thing”.

So here’s my get out of jail free card, for you. You aren’t in pain because you aren’t doing anything to “fix” it. You’re just in pain. Sure, you can do some (specialized) (hEDS friendly ones) exercises to help combat it, or you could go take some painkillers, but... your pain is not a punishment for your decision not to exercise. Your pain just kinda... is.

Every generalized exercise advice you see online you need to take with a grain of salt anyway, because it was not written for people with a hypermobility disorder. If doing it doesn’t help, then you don’t need to push through the pain because “it’s the thing that’s supposed to fix everything!!!!” No no. There is no correct answer. There is no one-size fits all. If it doesn’t help, or if it hurts, then you shouldn’t do it.

I say this from a place of love. I spent several months trying to fix my wrist pain with stretches, and you know what never went away? My wrist pain. In fact, I’m mildly convinced the stretches made the pain worse. I kept pushing through it for ages, though, because I kept getting told it was supposed to help, and that it was IMPORTANT as someone who spends all day on the computer to TAKE CARE OF MY WRISTS via THESE STRETCHES WE HAVE HELPFULLY COMPILED ONTO AN INFOGRAPHIC FOR YOU!!!!! ...but that’s not how it works. The rules are a little different when you have a hypermobility disorder. You have to really look into exercises that are safe for you to do, instead of just assuming the ones that everyone passes around are going to help.

“Man, so even those shoulder stretches you see around might not help?” nope! They might not!

“What do I do then?” strengthening exercises... I’ll put resources / explain one easy one (for shoulders) below.

Also if you are someone with a job that requires sitting at the computer all day, and you’re worried about how that affects your health... Even if you just get up once every two hours and walk around / look at something else (even your bathroom!!!) for a little bit, that’s fine, that’s plenty, that’s more than enough. You don’t have to stretch your shoulders every 30 minutes. You shouldn’t stretch your shoulders every 30 minutes if that’s hurting you.

RESOURCES TIME

1) https://www.ehlers-danlos.com/resource/strengthen-your-hypermobile-core-a-home-exercise-approach-for-eds-hsd-and-hypermobility-jeannie-di-bon/ <-- webinar that covers at-home exercises you can do

2) and a whole playlist of at-home exercises (in reasonable sized video chunks) by one of the experts, here: https://www.youtube.com/playlist?list=PLp-oNOmoFdAMFZB7XfpUZyvg_xzE3S3Ue – DISCLAIMER I HAVE NOT WATCHED OR USED THESE, SO WHILE I CAN SAY I DOUBT SHE WOULD BE FEATURED WERE SHE NOT A REAL EXPERT, PLEASE JUST. Err on the side of caution. If even one of these hurts you, try not to do it until you can talk with your personal physical therapist, which, yes, I realize requires Acquiring one first..... worth poking around tho, this person has a ton of tips on how to be careful with your joints while doing chores and day-to-day tasks as well, it seems. Actual advice that might actually help you instead of “oh make sure to stretch every 30 minutes!!!!” (might not help) or “have you tried jogging? Its free and easy!!!!!” (sport that is more likely to injure you thanks to the weak joints thing)

3) You can also search “exercise” on ehlers-danlos.com and come up with a ton of other pages/videos/etc of EDS friendly exercises produced by the experts that run this site.

4) That One Easy One I Can Explain In A tumblr Post: Bridging

Meant for core stability, but also works towards strengthening your shoulder muscles as well. Bridges!!! You can probably look up guides, or the lady I linked above has a video that includes her doing bridges about 4 minutes in. here's the video (link).

The version I do involves going up for five seconds, then down for five seconds, repeating for a minute (time yourself). Each day add on ten seconds (so second day you do a minute ten, third day minute twenty, etc) until you are eventually able to do it for three minutes. You do not need to go past three minutes. You are recommended not to. You are recommended to work up to 3 minutes and then continue doing it for 3 minutes every day.

(It doesn’t have to be every day nor does it necessarily have to be 3 minutes every time; if I’m tired or in a hurry I’ll just do two minutes. If I’m really tired I’ll just skip it and do it the next day. No big deal!)

That’s all I got. Thanks for listening to me rant. Hope it was enlightening at all!

#disability bloggin #eds bloggin

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thebibliosphere · 2 years

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I guess count another person on the list of “today I may have discovered a possible diagnosis for myself on TUMBLR of all freaking places.”

Does MCAS have common comorbidity with anything else? I see that is can cause all sorts of issues from pulmonary to gastrointestinal to musculoskeletal to neurological. Well guess who has various issues in all four of those categories! (Un)Lucky me.

I'd apologize, but it's kind of my schtick talking about it ^^;

And MCAS is often comorbid with conditions like Ehlers Danlos Syndrome or POTS, which is a type of dysautonomia.

For some of us, it seems to be present from birth, while others seem to develop it later in life, usually in response to a viral or bacterial infection or some other sort of stress or trauma. (Rates of patients with MCAS and c-PTSD are very high due to how stress hormones affect mast cells.) Covid has been causing people to develop mast cell instability. This is why so many more doctors are learning about it in quick time, though whether these people will develop long-term MCAS is unknown.

There's also some ongoing research that hypothesizes that Fibromylagia might be linked to it as well due to neuroinflammation MCAS can cause.

Basically, there's a chance it's linked to a lot of things, but research and medical acceptance have been so piss-poor until recently when covid caused a bunch of skeptical doctors to go "oh shit" and start throwing money at the research they've been neglecting for decades. Fingers crossed we see improvements in diagnosis and testing because right now, all of the lab testing is better suited for mastocytosis, which is somewhat better established.

#chronic health tag #mcas

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arcadian-vampire · 2 years

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Also, last week I put on a hypoallergenic bandaid and had it one for like one (1) day, but the spot is STILL bugging me a lil, I can still see the outline of where the bandaid was -_-

Why is my skin SO fucked up,, Often when a nurse uses those. uh. half-asleep brain says 'sanitizing wipe' but that's Not the word I'm looking for. The uhh. sterilizing. sfuff. anyway I often turn Immediately Really Red and if it's a new nurse she'll be like um. are you allergic to this and I missed it when I read your chart... no ma'am, if it IS an allergy it's only sometimes! Just like everything else I wonder if I'm allergic to! Only sometimes, nothing is consistent, bandaids are either totally fine or mega fucked and give me hives. Even when they're the same brand and everything

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narcatsisst · 26 days

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ive been researching ehlers danlos syndrome for a while now because of the comorbidities (correlations have been seen between it, pots, adhd and autism, which i have all three of) and i also just enjoy researching illnesses, and i noticed that i had most of the symptoms of the hypermobile type, so i started taking note of them. this morning i was talking to my mom about it and showing examples of the symptoms on my own body if possible, and she kept going "wait, that isn't normal?" and turns out we have a ton of the same symptoms, and she also has adhd, probable autism and had something that looked a lot like pots when she was younger. we even have matching atrophic elbow scars we got in very similar ways 😭 i'm gonna ask my doctor about it the next time i have an appointment, and if i do have heds or something similar, i definitely know who i got it from...

#heds #ehlers danlos syndrome #hypermobility #hypermobile ehlers danlos #chronically ill #hypermobile eds #chronic illness

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doberbutts · 1 year

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I just saw your post about how testosterone has helped your disability tremendously, which if I remember correctly is hypermobile Ehlers-Danlos syndrome (but maybe I’m wrong). I’m agender and have been considering early menopause to help with my abundance of menstrual health issues, but if t helped your hEDS too that makes me really want to consider it further. If this is too private you absolutely don’t have to answer it but I’d love to know more as a fellow disabled person.

It's POTS actually :) though POTS is highly comorbid with hEDS and I *am* hypermobile, to a degree that I made my physical therapist wince with how easily I can assume positions that should noooooot be possible without pain when I was in recovery due to my car accident. She actually asked me if I have EDS and I said well I have POTS so... not officially but is it possible sure I guess.

So no, I do not have hEDS. But also yes I might have hEDS. Schroedinger's diagnosis.

No, testosterone helped my POTS symptoms disappear to almost nothing. This is at least partially because POTS does not get along with estrogen ans menstrual cycles, and taking testosterone lowered the estrogen in my body and also stopped my menstural cycle. Don't get me wrong, I still have some symptoms, but they are dramatically improved. I can do all sorts of things I used to not be able to.

There is... a bit of debate whether I have POTS at all. But I do have MCAS and, as said, I'm hypermobile, so very likely yes POTS is very likely. But with my NCAH diagnosis, it's equally possible that I *do not* have POTS, because NCAH also causes weird changes to your vasovagal response and your autonomic nervous system. In other words, do I have POTS AND NCAH... or do I just have NCAH?

Personally I don't really care because adding testosterone fixed the symptoms way better than anything the POTS meds were doing so w/e, if it works it works.

It's "makes you intersex and sometimes gay disease but also you faint a lot and your body *really* sucks at handling stress disease". To be fair the classic form of CAH can just outright kill you if not well controlled. Nonclassic CAH by comparison sometimes still tries really hard but is less likely to do more than give you some serious medical trauma.

So like. Am I fainting because my body doesn't know how to handle stress which triggers a response of my autonomic nerve and because my adrenal glands are too busy making androgens to give me some fucking cortisol to communicate with my autonomic nerve, the thing guesses wrong and I hit the ground as my body attempts the biology version of "have you turned it off and then back on again"? Or am I the unluckiest fucker on the planet and I have two annoyingly underdiagnosed but much more common than we thought disorders which both hate estrogen and make me faint a lot?

Or, bonus, since POTS joins PCOS in the "disorder named for a symptom that's not even diagnostuc criteria and no one actually knows what causes it" family, is what we're calling "POTS" actually a group of symptoms that has a wide range of causes and my cause for my own symptoms IS NCAH? Who knows 🤷‍♂️

#this is especially annoying because like #long covid is more or less just pots #ok ok ok it's kinda different but also it's kinda not #pots itself is often triggered by viral infection and brain trauma too #you got sick out of no where one day and now you're disabled for life because you faint without warning all the time #congrats! human bodies suck!#and since my body sucks at stress response guess who was always always always sick as a kid #I got pneumonia one day without being sick from anything else first #and a few weeks after that I started fainting

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aroaceleovaldez · 1 year

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we should do more with headcanons about demigods having conditions that have comorbidity with ADHD/dyslexia (”comorbidity” = conditions appearing together). and also general other lesser-known symptoms of ADHD/dyslexia, like messed up motor skills (both fine motor skills and gross motor skills), auditory processing issues (< this one shows up in the books! And it never gets talked about!), and rejection-sensitivity disorder.

Give me more Autistic demigods. Demigods with OCD. Demigods with Ehlers-Danlos Syndrome or Marfans. Demigods with diabetes. Demigods with Mast Cell Activation Syndrome. Demigods with tics. Demigods with fibromyalgia. ADHD has comorbidity with so much I can’t even reasonably list them all here. Everybody go wild with this please I need it in my life.

#pjo #pjato #hoo #riordanverse #headcanon #headcanons #i have already talked at lengths about how nico and leo are autistic-coded #re: the auditory processing thing - we see that in the books mostly with Percy actually!#and every time the fandom does mention it usually it's jokes about how Percy is ''dumb'' which is really annoying #like yes it is somewhat played for humor but it's an ACTUAL ADHD THING #scenes include stuff like ''Feast For Tuna?'' - that's Percy having an auditory processing moment #adhd

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