#ness chats

[mybendyplaces]

anyone else with hEDS feel like a bunch of loose bones in a ripped up rite aide plastic bag

[unspecified-joint]

i’ve been having such awful lockjaw its been stopping me from eating properly. i’ve been living off of breakfast essentials and cheerios for a few days now 😭. any recommendations?

[mybendyplaces]

my doctor: do NSAIDs work for you?

me: no

him: have you tried them before?

me: yes

him: which ones?

me: naproxen, ibuprofen, aleeve, and tylenol.

him: and they didn’t work? they should work for young people like you

me: they don’t.

him: well. keep doing physical therapy. we don’t want to prescribe medication to young patients who can do things for preventative measures

sir. my joints already suck, nothing is being prevented anymore. just give me pain meds/management.

[mybendyplaces]

I am in mourning for the student I was before my chronic illness.

[mybendyplaces]

i just got diagnosed (and by just i mean literally yesterday) with ehlers danlos syndrome. can anyone who’s had it please share some recommendations for at home things i can do? i know getting braces might be a good idea, but idk much else! thank you guys 🦓❤️

[mybendyplaces]

hey! you asked for tips with dealing with eds, and I'm sure you'll have heard the standard 'hot water bottles/pain killers/braces' etc, so I thought I'd send some more niche ones that really help me?

my rheumatologist told me to stop crossing my legs when I sit on a chair. obvs it's hard to do as it's something so natural, but it makes your body asymmetrical which, for someone with eds, can cause a whoooole bunch of broblems

symmetry in general is key! try not to lean on one side/leg when standing, sit in a symmetrical position etc

ankle boots are great for holding together loose ankles

muscle tone is one of the best things for helping people with eds as it quite literally holds your body together - if you wanted to go to the gym, aim for small weights but high rep (which is the opposite of what most ✨gym people✨ go for but it's far better for us bendy folks in the long run)

yoga seems to be every non-disabled person's suggestion but with eds it's really not good... the whole culture of (western) yoga has become so much about being the person who can bend the most in this pose and lean back the farthest and whatnot, but with eds it's literally one of the worst things you can do because it encourages you to overstretch. I personally used to love yoga, and I do it far less frequently now I know I have eds but whenever I do I make sure to basically only do half the poses. It's hard to ignore what the instructor or even your brain is telling you, but you can still get the meditative benefits from it without doing damage to yourself!

insoles! a lot of problems can actually be caused by poor posture from walking and the lack of collagen in our bodies can cause flat feet too, so insoles can help even things out. cheap ones will do, but if you've got the means it's great to see a specialist to get ones made purposefully for you

I hope these help? Obviously every person with eds is different and there's no 'one size fits all' solution, but it is a manageable condition and it gets easier to live with if you know your body well. Feel free to message me with questions or if you want to chat!! :)

omg this is so helpful!! /srs thank you so much

[mybendyplaces]

Chronic Illness Survey!

Time: less than 5 minutes

Spoons required: 0.5-2 spoons

Hello everyone! I’m doing a personal research project on chronic pain and it’s relationship to trauma. If you have the time and the spoons, please fill it out! I am hoping to write a paper on this and, in the far future, help make some breakthroughs in chronic pain issues!

Here’s the link! It is completely anonymous!

[mybendyplaces]

sometimes chronic pain/illness is such an oxymoronic situation.

like, i need to get a new bed frame that’s accessible even when i’m having flare ups, so i’m doing something to make my life easier. but in order to do that, i have to move a ton of furniture around my room which is sending me right into a flare, making my life harder.

sometimes it feels like i just can’t win.