#ehlers danlos questions

[sir-ghost-the-green]

A query to the joints go funky community: so. I was minding my own business, existing with my hip feeling funky for a couple days. like it hurt but i kinda got used to it after a day and a half so i was just uncomfortable and kind of unstable, like my leg could give whenever it felt like. To try and fix it, i leaned over like a dog who is pissing on something, and it gave the really loud pop like my knees or shoulders sometimes do when i wiggle them bc they hurt. it got way less uncomfortable after that. is this a subluxation?? I start PT soon and figure they’re probably going to ask if i get them but i don’t know.

[i-earned-my-stripes]

ALRIGHT EVERYONE WE CAN GO HOME I HAVE COMPLETE PROOF NOW THAT ABOUT ADHD AND AUTISM BEING GENETIC NO MORE QUESTIONS ABOUT IT!!!!

I'm kidding, I'm kidding, but seriously, my mom's side of the family lives several states away, and quite a few of them... dont get along with each other as far as I'm aware, so I don't really know most of them. My mom does, cause, well, she grew up with them. Well, today, I had a convo with my mom about stuff that's happening on her side of family, and you'll never guess what she mentioned!! Turns out, her whole family has ADHD and is on the spectrum. The more she learns about how her ADHD and autism affect her, the more she realizes that the reason she thought all this was completely normal is because it is COMPLETELY NORMAL for her family. We're talking 40+ people all directly related that all had the same experiences.

Now, we've already had a realization like this when we figured out that literally every woman on this same side of this family has EDS, but I can't stop laughing at this. It makes SOOO much more sense why it took so long for anyone to look into a diagnosis for anything, cause everytime anyone started poking around at the possibility that we weren't "normal" by society standards, they just point out how there can't be anything "weird" with us since everyone else in the family is like that.

[tea-and-spoons]

Hello, I was scrolling through your blog (which is super helpful btw!) and wondering if I could ask a question about OT. I have been having really bad joint pain plus other symptoms for a while now and after a bunch of tests my working diagnosis is HSD/hEDS. I’ve been sent to an OT to help deal with my symptoms because right now I can barely walk/stand for any time and barely leave my house. I was wondering if you could give some idea about what an OT could do to help with my situation? Ofc nothing specific without more info but I was wondering what OTs may do for HSD/hEDS? Absolutely no problem if you can’t/don’t want to answer though and thank you! :)

Hello! I'm so glad my blog has been helpful so far. It sounds like you were sent to OT because you're having a hard time with your daily activities, so the short answer is that OT will help you find ways to engage in said activities. The long answer is...

-Treat any injuries to your arms, such as a dislocation or carpal tunnel syndrome. This can mean exercises, bracing, ring splints, tape, massage- similar to PT

-Teach you strategies to protect your joints

-Teach "energy conservation strategies", which are ways of pacing yourself and making stuff like chores easier

-Help you explore options for non-medication pain relief

-Get you adaptive equipment (this can be everything from an adapted pencil, to a wheelchair, although not all OT's can do the wheelchair process)

-Figure out how to change the setup of your home/work/school to make it work better for you

-Teach you new, easier ways to do your daily activities. For example, I learned how to fold laundry in a way that took less energy and was nicer to my shoulders

-Work on strategies that support your mental health

-Come up with a plan to work on your overall stamina and balance, although if you're seeing PT as well, they'll likely take the lead on this

-Give you strategies to help with sleep, if you're having any trouble there. They might also touch on nutrition.

-Help you advocate for yourself

I obviously can't promise they'll address all these things, but these are all things we're trained to do, so definitely ask if you're interested. OT should be about what YOU want to work on. I hope they're helpful and that your pain eases soon 💙

[farewelln3verland]

all my singles, former abused, and too-sick-to-leave-this-valentines...y'all are mine this year.

happy valentines, loves :)

[gh0st-bf]

Does any of my other EDSers on here have to push back/cut their cuticles or otherwise it literally just, keeps sticking to your nail to the point your skin is getting stretched at the cuticle and covered in hangnails from it tearing ? No ? Just me ?

[my-person-suit-is-defective]

Had my 1st appointment with a top surgeon and he said he might not operate bc of my EDS and he wants to talk to my (none existent) rheumatologist before going any further. So I travelled 8 hours for basically nothing.

[houndsharkk]

quick disclaimer, I am not asking for a diagnosis or anything of the sort (since, while I love y'all, you are likely not medical professionals and also don't know me irl) -- I am working with a team of doctors to diagnose and treat me; I only want to use community resources to either quiet my worries or bring up as anecdotes while having a conversation with my doctor

okay !!! so

hello hEDS community. I need some help 😭 the resources available on the internet (at least that are easy to find) are not providing me with any like written or photographed evidence of physical symptoms besides the most extreme side of the spectrum so it's very difficult to figure out whether some of my symptoms are actually worth bringing up because I'm not sure if I meet the criteria or not

for some background information, I am a chubby teenager (16+) with diagnosed HSD (hypermobility spectrum), POTS, bunions, some mild developmental problems with my ankle tendons (they grew wrong or something?? i guess), diagnosed with ADHD and have a professional confirmation (not formal diagnosis, though) of autism, on testosterone (have been for nearly 2 years now), have a few mild skin conditions (eczema and keratosis pilaris), and have had untreated carpal tunnel for about 5 years

(I only mentioned all of those because I know some of them are comorbid with hEDS and some can affect the skin and cause similar symptoms so I don't want to confuse those for hEDS symptoms!!)

I am not really sure how to word this so I guess I'll just jump right into it?? the symptoms that i've been really confused and back-and-forth on are: not having any dislocations ever (possible subluxations but I'm not sure? nowhere says like.. what those feel like so I don't have a reference point), mildly stretchy skin only in some areas (around scars, stretch marks, under wrists, neck, some parts of stomach area), veins that seem to be more visible as time passes (not just in my hands/arms, but on my chest, neck, armpit area, feet, and very lightly in my legs), and very small rounded atrophic scars that seem to be showing up way more frequently (mainly on my chest where some stretch marks are, side/ribcage area, and back of my shoulders, but there are one or two on my arms as well)

I really have no idea if these actually meet the criteria or if my body is just a little bit weird but not hEDS weird?? I've found 0 sources that actually show symptoms like these 😭

symptoms I have that I know meet criteria are: heel papules, hypermobility, I think soft skin, stretch marks that seem to grow and become irritated despite my weight percentile staying mostly the same throughout my life (+ I don't gain enough weight in a short period of time for them to be as bright as they are), mild dental crowding that I had to get braces for, and chronic joint pain

any responses with like similar stories or confirming/denying that these count would really be appreciated!!!! my parents won't take me to a specialist because the rheumatologist I went to said she couldn't check for hEDS (which?? what..) and they took that as being a "you don't have that" moment so I need to wait a little bit to find one myself but I'd rather not waste my money on an appointment if it's not necessary

thank you!!!!!!!!

[salt-baby]

Medical IDS

I'm about to buy a new medical ID, so I figured I'd share how I get those and what I put on them.

There are some companies which produce custom jewelry-style medical IDs, but I'm a little scared of breaking those and my health changes too often for that to be a practical expense, so I personally buy dog tags. I let people who I spend the most time around know that I'm wearing a medical ID. Almost all paramedics check the wrist, and some will check for a necklace (where I wear mine). I wouldn't recommend wearing a medical ID anywhere else.

The following information is what I put on there:

Full Name - This doesn't necessarily have to be your legal name, but should be the name that your medical chart is attached to.

Medical Conditions - Specifically, this should be conditions which can render you unable to explain yourself, either because your condition can make you unconscious, too disoriented, or create barriers in communication. My conditions include hypoglycemia, allergies, and POTS. Other conditions that fit this criteria might include diabetes, seizure disorders, narcolepsy, some cardiovascular diseases, etc. It may be helpful to include something like mutism or being deaf, if it would make it easier to explain yourself in an emergency. This site provides a good list (although their EDS information better applies to other subtypes, I include hEDS on mine because it's short to write.)

Medications - usually, blood thinners and Epipens. Off the top of my head, I might also recommend immunosuppressants, anything implanted (ports, insulin pumps, CGMs, pacemakers), and any uncommon meds or meds with dangerous drug interactions.

Emergency Contact - This should be someone who lives within an hour of you, and who you talk to frequently enough that they can help fill in the blanks on what you've been up to recently. Ideally, this is someone who can say "they stopped taking their meds a few days ago" or "they've had a headache for two weeks". I would highly recommend discussing what you want this person to do in an emergency with them. You should list full name and number for this person.

Other - you may also choose to list here if you have a DNR. Some people also choose to list an explicit "Call 911". You can also choose to give instructions, like "Meds in Wallet" or "Epipen in Bag", but its unlikely these will be seen in an emergency. Realistically, a medical ID isn't for the paramedics - it's for the emergency room.

feel free to send me an ask if you have questions!

[autisticlee]

I somehow ended up on hEDS youtube and this video makes me go HMMMM. for a few years now i've had people ask me if I have hEDS or say they really think I do and should get reevaluated by a different doctor. I always have to say I don't have it because I failed the evaluation from the orthopedic specialist I saw for joint issues and chronic pain. she did the beighton test and gave me a 4/9 but you need at least 5.

after watching this, i've concluded she didn't even test me correctly? they say if you get a 4 but answer yes to things like could you put hands on the floor as a kid then it counts as a point. my hamstrings and back are so stiff and painful to bend forward, but I could do it as a kid. another is if you contorted yourself in weird ways to amuse your friends. I would always put both my legs behind my head at the same time to freak people out lmao. but according to my doctor, doing it as a kid doesn't count....and she didn't really evaluate anything else. she asked if I have the heart problems all the people in this video don't have, and if I had dislocations that specifically required professional medical attention....my parents forced my dislocated bits back into place as a kid. they refused to take me anywhere that cost them money lmao unless it was serious. like I wasn't allowed to go to the doctors when sick until I had bronchitis/pneumonia and could barely breathe. now I just get subluxation mostly which my doctor said I seem to get a lot of very often. that was it.

she didn't test for sketchy skin which I definitely have or those weird heel bumps I always thought were super gross and didn't even know had anything to do with this until now, or anything else from this video. also when she tested my knees, she grabbed one leg by the ankle while I was sitting and said my knee doesn't bend back, but they're all doing it while standing. i think my one knee at least looks like some of theirs from what I can tell, while standing?? but it doesn't do it while sitting because tight ass hamstrings. (don't remember if it's this video or a different one but having unstable hips and/or knees can cause extremely tight hamstrings and muscles apparently due to overcompensating for the instability which makes sense. my hips are so bad and knees pretty unstable too)

anyway. i had a lot of these things they covered on this diagnostic thing that my doctor did not go over and just told me I have "general hypermobility" and said it's not an issue and that my pain and and unstable joints are ~because I need to exercise more and exercising will cure it~ is what she basically said. not even concerned about the fact that I was there mainly because exercising fucked up my shoulder really badly and I told her how I fucked up my knee so bad once and couldn't even walk on it normally for months. also hips and wrists and etc. also my job is physical labor so.... exercise?? so instead of giving me things to help with my joints she just sent me to physical therapy to do shoulder workouts for one shoulder that I could only seem to do while the physical therapist was watching me and correcting me. once I did it at home, I hurt myself very quickly and could never finish the daily workouts 😅

I feel like there's a way better chance i'd have a higher score if it was done properly or I was evaluated with everything in this video, and not just denied right after scoring a 4 on the beighton test. but also impostor syndrome like what if i'm wrong....from what i've seen online in my googling, you have to have a 5+ in order to be allowed to say you have hEDS and self diagnosis isn't as accepted as it is for other things (like autism for example) because it's more specific and a "serious condition" so not sure if I can just say I have it despite it being very relatable. until I can figure out doctor stuff one day and see if I can pass a proper exam, I have to just keep saying I have "hypermobility issues with joint and muscle pain and other stuff and dont know why it's happening" whenever I talk about these problems....which is a mouthful (fingerful? if i'm typing it?)

unfortunately, I have no clue how to get a different doctor?? or if there's even anymore in my hospitals network, especially ones that know more about hEDS? I currently am not even sure what's going on with my primary. I was told he was moving offices and cutting down on how many patients he sees but would have his staff schedule me when he gets to the new place....that was over 2 years ago and im still waiting. I used to do checkups twice a year. idk what to do about it. I can't do phone calls. writing emails and stuff makes me anxious. when I contact them through the mychart app like refilling prescriptions, it comes up as a different doctor now. so not sure what's going on at all and don't know how to or feel comfortable asking???? trying to figure out medical stuff and communicate with medical staff is so overwhelming for me I rather lie down and cry instead of dealing with it lmao i need an adult! like a real one!!

if anyone wants to share info, related experiences, talk about your hEDS or hypermobility symptoms and problems, or anything else like that, feel free to share with a reblog or reply or go to my ask box!

[mel10hi]

Okay !!! A couple questions for the hypermobility havers !

So, that thumb to inner forearm test, right? So, can people who don't have hypermobility do it too? Or can ONLY people with hypermobility do it?

Also. Dislocation. Does that HAVE to happen for you to be considered to have hypermobility? Or does that not happen to some people?

Thank you for reading ! :3

[faraige]

My New Traumatologist, starting to move my arm gently: How often do your shoulders dislocate?

My New Traumatologist: Ah... It dislocated.

[salti-thelatediagnosedautist]

question for the hEDS + autism community:

I feel a lot of joint pain but my pain is never very specific in how it feels (thanks autism). For example I didn't realise I had a minor skin infection on my finger until I saw it. I didn't realise I have gastritis, I thought I just had bad indigestion/reflux. Etc Etc

Google articles suggest that the pain from hEDS feels like your joints are dislocating, grinding, etc. I just get general pain.

So my question is; Is that really how it feels? I've never dislocated anything (as far as I know) and so I have no point of reference. I just get really bad/intense aching. Like if I lie on my side my shoulder will start hurting really bad. Or if I let my knees hyper extend it starts to ache after a while.

Basically pls share ur experience of what the pain feels like if you are comfortable 🥲 I want to talk about it for a diagnosis but I'm not sure if I'd pass the beighton test

[ehditaan]

Hey fellow hEDS folks! Do you have this problem? I flossed tonight, which I do quite rarely. Partially because every time I do my gums and teeth hurt for hours after and it feels like my teeth are looser. I know I’m supposed to floss more but what the heck, it doesn’t seem to get much better when I do it consistently either. Advice?

[glowstick-knees]

I’ve come to the unfortunate realization that I need to start using a mobility aid in school. This is fucking terrifying.

Previously, I put off using my cane in school because 1) basic anxiety, 2) the one time I brought it (literally just to an after school function btw) people were very annoying about it, and 3) before I could work up the courage to use it in school, another student started using one, and my dumbass brain decided that THERE CAN ONLY BE ONE or something and that people would say I was copying them. (Which is…incredibly stupid but my anxiety still thrives … mainly cause my schools pretty small so everyone kind of knows each other, so there’s no way people won’t notice that we both have canes. I know how dumb that sounds but some irrational part of my brain thinks people will think I’m copying them. Again I know this is stupid but brain be braining. Also it’s funny cause we have the same condition (lol) so even if I was would it matter?id just be taking advice from someone with the same issues as me)

But my fatigue has gotten to the point where I have no choice. I can’t keep wearing myself out this much, I’m falling behind and I keep missing days cause school is so exhausting.

But god I don’t want to. Why is starting to use a mobility aid around people you already know sO MUCH WORSE than using one around people you don’t? I’m never insecure about my cane anywhere but school. I hate it here. I know I need to use it more but god I don’t want to.

[chronicillnesscaneffoffplease]

So I got a hEDS diagnosis, competent AND nice doctor, short term pain management considerations, long term pain management considerations, and further investigations to be thorough? All from the one doctor in one appointment? Which I got safety net rebate on? This disability pride month?

It’s more likely than you think.

[damelucyjo]

Job searching when you have very specific limitations and requirements is incredibly frustrating and disheartening, and always makes me want to give up very quickly.