#Ehlers Danlos Syndrome

[thebibliosphere]

Does anyone know of any good resources for diagnosing EDS in people of color?

I know I’m normally the resources person but I’m struggling to find anything that isn’t other people also looking for resources.

Do any of the medical people following me have an insight?

For context I have a friend with symptoms identical to mine but they’re “failing” the skin test section and I suspect the doctor involved is basing it purely on the “pale skin and visible veins” criteria and completely neglecting to look at skin texture and scarring.

I’m not hopeful there’s a secret not racist manual out there, but I’m asking anyway just in case…

[juno-28]

Crocheting all night, then afterward, my whole body cracks like a glow stick.

Anyone else with chronic pain ever get really absorbed in a project and dissociate from your body while you're working but then you finish and you come back to your body and you're just like AAAAAAAHHH! WHAT'S WRONG?? oh yeah. The horrors. Never mind

[affectionatepanda]

Hi friends, amazing news, I GOT A PRESCRIPTION FOR A WHEELCHAIR. Now we move on to fulfilling it and dealing with… Insurance. *boss music starts playing*

[genderqueerdykes]

Hi! I've seen you mention pots and eds a few times, do you have any advice on finding a doctor who can diagnose things like that? I've personally been stuck in a cycle of doctors refusing to do any real testing besides a basic blood panel, or telling me the usual, "drink more water get more exercise" spiel.

I'd appreciate any tips. :)

hi there! that's a great question!

i'm not sure on POTS because I don't have it, however, i do have hEDS. i got diagnosed because i started going to physical therapy for my lower back. when they had me do stretches in my intake and when i started doing exercises, all of the therapists who worked with me independently asked me if had ehlers-danlos because of the way that my joints bend and over extend. they noticed how easily my knees over extend, and also how flexible i was during the intake exam. i had that one handed to me on a silver platter, that is a very, very rare circumstance. i didn't have a diagnosis before that because i was on a waitlist to see another doctor for it, so i just kinda got one handed to me by multiple therapists who confirmed it after seeing how my body moves

so your doctor is gonna be totally fucking useless for hEDS or POTS. they honestly usually can't do jack shit except order blood panels and a few other simple tests like you said. but, what they can do is write referrals and that's your ticket. so what you'll wanna do is try to figure out which types of other clinics can do the testing you need instead. you should see if you can get a referral for rheumatology, as they will be the ones who know about hypermobile ehlers-danlos, and any other joint or connective tissue related issues. i would say something like "would it be possible to get a referral to a rheumatology clinic for my joint pain?"

if you have any injuries or severe pain or anything about your mobility that prevents you from functioning normally, you may be able to get a referral for physical therapy, however that may require imaging tests (x ray, CT scan, MRI, etc.) before they'll accept you. it'll depend. but that may have to come later down the road after they know what's going on. physical therapy is extremely helpful and i recommend it. you may also be able to get a referral for a pain management clinic if you're dealing with a lot of pain

i get how frustrating it is to deal with GPs sometimes. they're helpful but also completely fucking useless sometimes. it's mind numbing

i'm not sure what type of clinic helps with POTS, if anyone can let me or this asker know that would be awesome! and any other suggestions as well!

[zombiezinmydreams]

Chronic illness is so scary due to uncertainty of what the future may hold.

I genuinely fear that I will never get to be a criminal psychologist purely due to my illnesses. I am in tired and in pain and it’s terrifying to think that it may get worse. Even just recently my symptoms have gotten worse and it genuinely worries me that someday I won’t be able to achieve what I want to due to that. I’m only 16 and I should be hopeful, but I can’t be.

I want to be able to look forward to the future and my dreams but there will always be the fear that my future will not be what I hope for. I’m afraid that one day I won’t have the energy to do what I dream of, or that I won’t have the mobility due to pain, or just anything really. It’s scary to know that the future will never be certain with chronic illness.

[talkethtothehandeth]

Wild concept that shouldn’t be wild and the coldest take ever: disabled adults are *adults* and not just children trapped in adult bodies

Disabled adults have sex

Disabled adults do drugs

Disabled adults curse

Disabled adults get piercings and tattoos

Disabled adults can make adult decisions and act and behave like adults because we are adults

It’s just so weird for people to constantly infantilize me all because of my mobility aids when I’m not a child!!!

[teacupbug]

My controversial opinion is that I think chronically ill people should be able to fight one doctor a year

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[janeacular]

can they invent a mobility aid that helps with the joint pain & also does NOT cause different joint pain in a different area from use

[thebibliosphere]

In the never-ending quest to alleviate my migraines, I bought a special angled pillow that lets you sleep on your side while your arm just kind of hangs through a whole in the middle. I did this because I’m a left-sided sleeper, always have been.

Until my neck subluxated and now I can’t sleep on that side without compressing some vital nerves and blood arteries. I also can’t sleep on my back right now because the pressure compresses my occipital nerve. Basically sleeping has been a nightmare recently, but that’s not the point of this post.

The point was I brought this up in physical therapy to talk about how great this pillow is because I can now sleep on my right side without the stupid thing going numb or waking me up because it hurts. And my PT was like wow, great! How did you sleep on your left side for so long without it being an issue?

And I said, oh that’s easy. I just tuck that shoulder out of the way.

And she said, ...what?

And I said, yeah, I just tuck it out the way. Not like my right shoulder. That one doesn’t move as well. It just hurts, I think there’s something wrong with it.

And my physical therapist asked me to demonstrate what I mean when I say I ‘tuck my shoulder out of the way,’ and haha, you’re never going to believe this, turns out I’ve just been casually pulling my left shoulder out of the socket for, oh, let’s see, 30 years? And then napping on it like hmmnm yess comfy.

Anyway. I looked up from my demonstration and my physical therapist was making this face:

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[chadepitanga]

there's something so raw and soul crushing about spending your late childhood+teen years suicidal then growing up and actually wanting to live, after an ungodly effort, only to see your health deteriorate because of chronic illness.

[stuffieautism]

if you didn’t realize, ableism is actually bigotry and systemic ableism and inaccessibility are really oppression and it’s not something disabled people brought on ourselves by having bodies&minds that you think are inferior and therefore not worth fighting for. disabled people’s lives and wellbeing matter. we don’t have to earn our worthiness by doing “enough” to deserve a good life. nobody does.

[talkethtothehandeth]

This is a reminder that you can still serve cunt while using a mobility aid, hope that helps