Probably Heds - Tumblr Posts

Any hEDS folk got any tips for subluxation?

I’ve never dislocated anything but just got told that I likely have hEDS and am realising a few things.

Sometimes my joints make a click sounds and hurt like a bitch and feel really weird. Kinda floppy but sometimes stiff depending on where it is. I didn’t even realise subluxation was a thing. Is this subluxation??

Usually I just wiggle the joint around a bit and wait for it to click back. If it’s causing loads of pain then I just ignore it and wait for it to go away, which is usually does when I accidentally move weirdly and then it clicks back where it’s supposed to.

I have a feeling that that’s not how you’re supposed to deal with it but don’t know any alternatives.

Any help?

Going to a disability shop tomorrow to get some compression gloves, ring splints and other stuff!!! Very excited XD

I have a drs appointment on Tuesday to hopefully get evaluated for hEDS yay. I Hope i can get a preliminary diagnosis from her i stg. It would explain so much and then maybe just maybe I’ll be taken more seriously by other docs. Like seriously it would explain SO MANY of my issues like nearly all of them I stg

Who the FUCK decided that insurance companies get to decide what’s medically necessary????????

Y’all, what’s the benefit of getting a hEDS diagnosis? Every Doc I’ve seen has brought up that I probably have it but none will actually evaluate me for it (based on the criteria to my understanding I definitely fit it) and I keep getting told there’s no point in actually getting the diagnosis so they don’t want to do the evaluation. They’ve offered genetic testing which is nice but that shits expensive and I know technically necessary for the diagnosis but if they won’t even do the in office evaluation what’s the point of it (I mean unless I have one of the other types)

Can I claim it for myself? I understand if not since I’m not formally diagnosed but I’m just curious.

Hello! I'm also an autistic disabled person and I've thought about getting a cane but I haven't pulled the trigger on it yet. What made you decide? Is it an every day thing or a some days thing? Idk I'm just trying to gather info ig.

Hey! It took me a while to decide to do it honestly but realizing that I don’t need to push myself is a big part of it. I’ve always been a person who has pushed themself to do everything perfectly and I’d get really frustrated when I couldn’t and to be honest I’m still like that. It wasn’t until recently (got my first cane back in January) that I realized that having a mobility aid or aids would help me be able to do what I wanted how I wanted was a big part too.

Also I came to the realization that people don’t think about/dream about how much a cane or mobility aid would help them if they don’t need or would not benefit from it.

I was constantly worried about how other people would perceive me and as an Autistic person I struggle with knowing how people perceive me so I’m always self conscious of that but ive come to realize that the opinions of others don’t mean Jack shit compared to my comfort. Additionally, I was really scared to be rejected by my family and loved ones and to an extent I have faced some ableism from them (my mother especially) the way my mobility aids have helped me way out weigh that.

Basically just coming to terms with the fact that I can’t do everything the same way as everyone else, realizing that people who don’t need it don’t think about it, and that I should prioritize my health and comfort over my fears of how others perceive me. The comfort and safety of my body is the most important thing so I decided to finally listen to the part of me that has been begging for help.

My body is trying to make up for the week of little to no pain by giving me the worst back pain imaginable. during a vacation with my family.

POTS and hEDS girly here!

electrolyte tablets or packets to put in your water are essential

if you can, try to get Celtic sea salt- an ER nurse recommended it to me when I went in for a POTS flare because it also has other good minerals in it

obligatory drink more water!! I use flavored electrolyte mix to help me actually drink the water (it’s called Mio, and comes in multiple flavors with different uses/purposes, some are caffeinated, others aren’t, some are just for flavor)

find ways to sit/rest throughout the day, whether it be finding ways to make your route around school shorter or sitting at a closer table/desk so you don’t have to walk as far

if you get really dizzy, GET CLOSE TO THE GROUND. if you faint while closer to the ground, you are less likely to injure yourself

you might want to bring up your concerns to you primary care doctor the next time you see them. Just be aware that if you menstruate they’ll probably dismiss it as anemia due to your period

as for the compression socks, they work best if they’re longer, like calf length, but I have ankle length ones that are nice as well

talk to your school nurse or counselor to tell them about your concerns- if 504s are a thing where you live, ask about getting one

Sorry this was so long, but I hope it helps!!

Potsies help I need advice

I'm not diagnosed but I very likely have POTS and I'm in a flare. I have no accommodations or anything since my parents don't really believe me.

I have to bike 30mins to my school, and we have mandatory exercise 3 times a week. How the hell am I gonna survive this?

I have sports socks that are kind of compressing, and I can take salt to school. Is there anything else I can do that might help?

Thank you so much.

Occasionally chronic pain comes with a side serving of being able to swallow 15 pills in one go.

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.

Its funny to get a diagnosis with something you thought you already had, but only to realize after you get the diagnosis about things that have been happening that links to your disability, but you just hadn't realized.