#dysphagia

[thelastwhimzy]

i really wish that ehlers-danlos syndrome wasn't basically just thought of as the "bendy" disorder. firstly, there are more than 13 types of eds, and they all have varying relations to and degrees of hypermobility. secondly, eds are a collection of congenital connective tissue disorders - connective tissue makes up a vast majority of your body and, because of this, eds, hsd, and other congenital connective tissue disorders like loey-dietz, marfans, stickler syndrome, and osteogenesis imperfecta are multi systemic.

having eds or another connective tissue disorder is SO much more than just some flexibility and it's especially frustrated that they're often thought of solely in relation to that one aspect of them because it leads a lot of people down the path of misdiagnosis.

as an advocate and educator regarding ctds and especially eds, i have spoken to SO many people who simply wrote the possibility of them having a ctd like ehlers-danlos off simply because they aren't flexible. it's such a dangerous misconception and really frustrating to see especially given the fact that the muscles of hypermobile people often overcompensate to make up for joint laxity, which can actually lead to a lack of flexibility/high tone/spasticity

so yeah, tl;dr: if you have a bunch of multisystemic symptoms that seem largely unconnected, look into connective tissue disorders. they're much more common than people think, frequently go under the radar, and can really wreck havoc on your body - ESPECIALLY when you aren't aware that you have one

[wheelie-sick]

hello world!!!

I want to talk to you about swallowing (not in a sexual light)

swallowing is supposed to be:

efortless

automatic

painless

and should happen without conscious thought

choking is supposed to be infrequent

if that does not sound like your swallowing experience you are probably part of the 5-15% of the population that has dysphagia. if your swallowing is bothering you then you can (and should) bring up your concerns to a doctor

swallowing is not supposed to be difficult!

[crippled-peeper]

Hey dude, I can't remember if you yourself use thick drinks, but some thick nutritional shakes just got recalled for listeria

https://www.cnn.com/2025/02/21/health/listeria-supplemental-shakes/index.html

Oh gawd let me go check!!!!

I’m pretty sure I’m safe but I will post this for others to see also

@wheelie-sick heads up friend !!!

[chronicallyillsoup]

My stomach when I eat even just a little: *slams big red wrong buzzer* you must now suffer

My stomach when I don't eat: *slams big red wrong buzzer* also wrong answer

[sadhoc]

i know lots of people are planning friendsgivings or holiday dinners this time of year so! if you have friends who are on a liquid diet, and you're planning like, a group dinner, or a party that revolves around food. here's my advice, as someone on a liquid diet for dysphagia, for making your friends feel included. obviously this won't cover everyone with dysphagia (some people have much more specific needs) or even everyone on liquid diets but! just some guidelines that work for me, as we head into the late fall/winter holidays

fun drinks! if my friends are taking me out to dinner somewhere, i always check the menu to see if there're any good looking mocktails or teas or juices on the menu! i can have just as much fun at a restaurant or something if there's like. sparkling yuzu lemonade, or a good coffee menu that goes with dinner (thank u italians), or something like that.

soups don't count as liquid if they have chunks in them. some people can have soft chunks (like potato or orzo), but a lot of people cannot! if you're planning a thanksgiving dinner or something, something like a pumpkin puree soup will go a long way towards making people feel included, and like. getting them nutrition

which leads into! let people bring their own food/drinks if they need them. some people are on oral sole source nutrition, where they cannot tolerate anything but specific formula mixes. some people need to have protein drinks multiple times a day to get their nutritional needs met. don't be a dick about people bringing their own food to your events.

also it's a good idea to familiarize yourself with the iddsi framework for food textures and dysphagia. if you know the person well, you can ask them about where they are (though some people might not know their exact level). i cap out at about level 4, though i can have anything lower than that, and will sometimes experiment with level 5 on good days. some people are also unable to do level 0 or level 1, and need thickening powder for drinks. it's all super individual, and it's a good idea, if you're planning meals for a party, to be aware of all this stuff, and provide a variety of textures, especially if you aren't personally close to the people who deal with this stuff. also provide straws, or let people know to bring their own!

please reblog so people planning parties this next month or two can be more informed!

[othellovr]

Listen I swallowed two pill today ✌ OK. TWO✌. In under 5 minutes. I consider that as today's win.

[voidbeau]

my gerd situation has been upgraded from:

Constant burning and very limited ability to swallow

to

Minor bloating and slightly ok swallowing!!

I can eat one whole slice of bread before I feel like i'm losing air!!!

[fibromyalgicaf]

"Fibromyalgia is a chronic pain condition which has recently been linked with eating, drinking and swallowing difficulties (dysphagia).

... there is evidently a need for clinical research into the management of this condition to develop patient‐centred care delivery options and to equip healthcare professionals with the knowledge and skills necessary to provide efficacious management to this group."

Fibromyalgia is a chronic pain condition which has recently been linked with eating, drinking and swallowing difficulties (dysphagia). Howev