Incoherent rambling .

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General hEDS info: EDS itself is a genetic disorder that affects your connective tissue, which in general makes your joints weak and your ligaments weaker. hEDS is the most common subtype, in which you have a lot of EDS traits AND hypermobility BUT none of the genetic markers for the 12 other EDS subtypes.

“Wait, but this thing I can do is normal, my whole family can do it!” or “my mother’s side of the family is all like this!” hEDS is genetic. It’s possible to have it if your parents don’t, but VERY unlikely. So unlikely, in fact, that having immediate family history of hEDS is one of the 3 main diagnostic criteria for it. (You can still get diagnosed if you hit the other 2, but they only ask for 2/3.)

“Surely it can’t be so hard to diagnose that doctors don’t notice it!” my sister did not find out until she was in her 30s, because one of her friends has hEDS, and when my sister was bemoaning how useless doctors were, her friend was like “....hey those sound like MY symptoms, have you considered you might have hEDS?” (Which, due to it being genetic, is how my mom and I found out we also probably had it.) Also, much like ADHD, doctors are wary of diagnosing people with it, afraid they’re just trying to get the “good” meds.

“What good does a diagnosis/research even do me?” 1) an explanation for why you’re in pain all the time 2) knowledge so you can avoid doing things that would hurt you (you have to be SOOO careful with most forms of exercise!) 3) it’s a disorder that warrants higher pain meds than what you can get OTC, so if you are seriously in a lot of pain all the time, and would like to not be...

I’m gonna put a more in-depth list of symptoms below. If you have any five of them, I highly suggest you poke around www.ehlers-danlos.com and do your own research, because even if you aren’t in a position to get a clinical diagnosis right now, even suspecting you MIGHT Have it is useful, either for an explanation for all the things that seem wrong with your body that couldn’t otherwise be explained, or to know that... hey, you should really be careful with what kinds of physical exercise you’re doing, because your risk of injury for some sports is WAY higher than it is for people who don’t have hEDS. More on that below, as well.

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Symptoms list time:

*THIS IS ALMOST DEFINITELY A MARKER OF hEDS*

hypermobile joints

unstable/weak joints

joints that dislocate frequently

CHRONIC PAIN

stretchy and fragile skin (classic EDS marker, but can show up in hEDS): do you bruise easily? Do cuts take forever to heal?

your parent(s) are also like this (it's a genetic disorder!! Chances are you got it from one of them!!! Love to hear “oh my hips do that too!!! Didn’t realize it wasn’t normal” thanks mom.)

"my parents don't have hEDS tho" are you sure. like. my mom didn't know until my sister found out she did. this thing is *wildly underdiagnosed*. Mom’s in her 50s and had doctors diagnose her with arthritis and fibromyalgia, the treatments for which didn’t help her because it wasn’t what was actually wrong

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*OTHER THINGS THAT OFTEN COME FREE WITH YOUR hEDS*

chronic fatigue

gastrointestinal issues (if you thought you had IBS, but hit any of the hEDS things, you should consider, well, an hEDS diagnosis; gastroparesis is a common comorbidity)

dysautonomia; i don't have this but it causes things like POTS or "heartrate spikes when i stand" or "i get dizzy when i stand and lose vision briefly"

headaches (and/or migraines!)

MCAS, aka really bad allergies. your nose gets offended at the slightest bit of pollen. the weirdest materials give you a rash. you can only use one soap because all the other ones make you break out. etc.

...ADHD. I’m not shitting you. It is so frequently comorbid that in the UK when you test positive for either ADHD or hEDS they will immediately test you for the other. Connective tissue exists in your brain, as well, so I guess if your connective tissue just doesn’t function properly...

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HEY CAN YOU PUT THIS IN NON-CLINICAL TERMS FOR ME

sure! did you, at any point in your life:

- able to bend into funny positions like put foot behind head; especially as a kid (hi! that's me!) but of particular note if you can still do those things now

- stretches like butterfly or crossing your arm over your chest just... don’t feel like stretches? (my sister)

- could you bend and without effort place your palms flat on the floor? can you still now? apparently most people struggle - without regular stretching - to touch their toes, let alone put their palms *completely flat* to the floor. that's hypermobility baby!

- elbows bend a little bit backwards? knees?

- can you bend your pinkies back 90 degrees?

- consider yourself double-jointed?

- shoulders/neck always hurt? and like your muscles are SOOOO tight in your neck all the time? hey guess what: the thing EDS does is make your body produce less collagen, which makes your ligaments weak as fuck, and so your muscles are constantly spasming to hold your head up. this is why you're in pain. this is why working the knots out never helps and they always come back. no, this isn't because you’re on your computer too much. your body was just built differently (poorly)

- stretching never seems to help? stretches make you hurt more??? or even: most forms of exercise cause you pain? yeah, most exercise/stretches are meant for Able Bodied People, not people with an underlying undiagnosed hypermobility disorder. You have to adapt them to your needs, and also stretches will never be the be-all-end-all solution to back pain like those funny little infographics on the internet will try and tell you. Maybe it is for able-bodied people, if you have a genetic condition that causes chronic pain, well,

- “but my shoulders are soooo tight tho” POINTING ABOVE AGAIN. they are doing that because the muscles have to overcompensate for your weak ligaments. Stretching does not fix this; you may loosen your muscles, but they will simply tighten again later. The real fix is doing exercises to improve your shoulder muscle stability – I’ll talk about some exercises below.

- have you ever thought to yourself "what the hell, i'm too young to be in this much pain all the time??" you're right! it might be hEDS.

- struggle with opening jars? weak upper body strength? randomly lose your grip on things you’re holding with your hands? “are you serious” I’m serious

- can't crawl on your hands and knees because that hurts your wrists and your knees?

- tangentially: did your parents say you crawled funny as a kid? army crawl? started walking way earlier than expected? yeah.

- you can't squat or kneel because ow oof ow your ankles ow ow your knees? yeah.

- is getting up from the floor hard sometimes?? despite being 30 or younger???? yeah.

- despite everything, and not trying to be, you're still kind of really flexible???

- like, you could do the splits as a kid without having to train yourself to do it?? you can still do the splits now without any effort at all?

- do you seem to get injured really easily? joints especially, or, again, bruised really easily.

- are you in pain right now? think about it. shoulders? back? legs? did you see the part where one of the diagnostic criteria for hEDS is chronic pain? yeah.

i could probably keep going.

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~here's some specific connective tissue disorder things; i've included only the extremely "normal" ones that haven’t already been listed above and/or are easy to check yourself. you can find a full list at https://www.ehlers-danlos.com/what-is-eds/hypermobile-ehlers-danlos-syndrome-heds/ under "how is hEDS diagnosed?"~

listed above: stretchy/fragile skin. By stretchy btw I mean: can you pinch your skin anywhere and pull and get even half an inch away from your body? Neck/back of hand is a good place to try. If you can’t pinch your skin at all w/o hitting Meat then you don’t have this (I don’t, even tho my sister does!) but it’s worth looking out for and alone is like THE thing EDS (all types) is characterized by, so if your skin stretches, that’s of particular notice (but your skin not stretching does not disqualify you from having EDS)

stretch marks (they hate to use this if you're afab, but,)

"Bilateral piezogenic papules of the heel" uh when you're standing are your heels kinda. lumpy. like they got balls in 'em. that's what this is. (this is one of the things i have)

dental crowding (lol!!!!)

can you close your thumb+pinky around both your wrists? (steinberg sign)

when you make fists, thumbs underneath fingers, do your thumbs stick out past your fingers? (walker sign)

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“Hey, I’m not really hypermobile - is it still possible to have hEDS??”

in theory! I’m only mildly hypermobile myself, outside of the “foot behind head” trick from when i was ten and the “can even now at 25 bend down and put palms flat on floor with no effort” i have… basically no other signs of hypermobility. Though, I guess “things that should be stretches like butterfly or touching your toes are super easy and not stretches for me” also counts as being hypermobile, huh. It’s just really mild.

And, you know, maybe you just have a different EDS subtype. EDS as a whole is not super well understood, so the chances you got a doctor who didn’t know what it was / didn’t want to order a genetic test about it is still, like, high enough it’s worth looking into, I think.

Basically every issue my body has can be drawn back to hEDS, and that kind of knowledge is insane but also really liberating. There is a cause for this. I’m not just in pain for no reason – or worse – because I’m “bad” at taking care of myself. I have a genetic disorder that makes it so my joints don’t work right and also I’m in pain all the time. It’s not necessarily happy, but at least it’s an explanation, instead of sitting there and shrugging and going “I dunno” about it.

So, sincerely, if even five of the things I’ve listed above sound familiar to you, I think you should look into it. Maybe you’ll research and go “oh, that doesn’t sound like me at all, actually”, but on the chance you, like me, start researching and find yourself going “THAT’S WHAT’S BEEN CAUSING THAT THIS WHOLE TIME????” I think it’s worth looking into. That validation is sincerely quite freeing.

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“Ok, you've convinced me. Now what do I do?”

first of all research some more!

https://www.ehlers-danlos.com/what-is-eds/ <-- EDS overview and EDS subtypes! Maybe you have one that isn’t hEDS

https://www.ehlers-danlos.com/what-is-eds/hypermobile-ehlers-danlos-syndrome-heds/ <-- hEDS specific page

https://www.ehlers-danlos.com/heds-diagnostic-checklist/ <-- hEDS diagnostic checklist

https://www.ehlers-danlos.com/assessing-joint-hypermobility/#1667831445611-fb40d58e-84a4 <-- the checklist opens on something called the Beighton scale, which is explained in more detail here. **IF YOU DO NOT SCORE HIGH ON THE BEIGHTON SCALE BUT STILL HAVE MOST OTHER HEDS ISSUES, PRESS FOR DIAGNOSIS NONETHELESS. ENTIRELY POSSIBLY YOU ARE HYPERMOBILE IN AREAS THAT AREN’T TRACKED BY THE BEIGHTON SCALE. IT’S IMPERFECT AND PROBABLY NEEDS TO BE REPLACED BUT THEY HAVEN’T GOTTEN AROUND TO IT YET.**

https://www.ehlers-danlos.com/2017-eds-classification-non-experts/ <-- EDS things in layman’s terms, including comorbidities, like what I was talking about wrt gastrointestinal issues, orthopedic issues, chronic fatigue issues, etc, etc, etc. if you have issues with allergies look at the Mast Cell Disorder one. if you have that “heartrate spikes or I get dizzy when I stand” issue look at the Cardiovascular Autonomic Dysfunction one.

(ngl, sorry if its gross, but learning that hEDS often comes packaged with gastrointestinal issues was what really sealed the whole deal for me being convinced, despite “your sister has it and your mom almost definitely has it” being EXTREMELY damning evidence, because. I have had issues with diarrhea my whole goddamn life. I can’t tie it to food. It just curses me daily.)

second of all: talk to your doctor! or, find a doctor in your area that specializes in EDS. book an appointment, see what they can offer you. they can probably hook you up with physical therapy options (to safely strengthen your muscles to compensate for your weak connective tissue) or some pain management options! If you find the physical therapist is making you do things that make you hurt more and they repeatedly do not listen to you and your body, fire them and find a new physical therapist. 

https://www.ehlers-danlos.com/healthcare-professionals-directory/ <-- list of doctors. 

Third of all: find a support group if you’d like? There’s FB groups and Reddit groups and probably even more. Links to some of them here: https://www.ehlers-danlos.com/support/ 

YMMV because hEDS sometimes gets shit on by people with the other EDS subtypes, but at the very least, if a fellow Zebra is bitching about a doctor, you’ll know who to avoid. 

Fourth: Just… if you think you might have it, I want you to take a step back and reconsider the way you feel about yourself and maybe about the exercise you are/aren’t doing. I had a lot of compounded guilt about how I “wasn’t taking good enough care of myself” ; when you’re in pain all the time you sometimes start blaming yourself, especially if you, like me, find that exercise is difficult and painful and that stretching doesn’t ACTUALLY help, you quit doing it. But you don’t always quit thinking “well apparently if I did those stretches to prevent back pain that people always talk about, then I wouldn’t have any back pain!!!!!!” and that kind of mindset... sucks.

It's also not true. Like, not in general, but also especially not if you have hEDS. My back is in pain because my body was built different (poorly), NOT because I “wasn’t doing the right thing”.

So here’s my get out of jail free card, for you. You aren’t in pain because you aren’t doing anything to “fix” it. You’re just in pain. Sure, you can do some (specialized) (hEDS friendly ones) exercises to help combat it, or you could go take some painkillers, but... your pain is not a punishment for your decision not to exercise. Your pain just kinda... is.

Every generalized exercise advice you see online you need to take with a grain of salt anyway, because it was not written for people with a hypermobility disorder. If doing it doesn’t help, then you don’t need to push through the pain because “it’s the thing that’s supposed to fix everything!!!!” No no. There is no correct answer. There is no one-size fits all. If it doesn’t help, or if it hurts, then you shouldn’t do it.

I say this from a place of love. I spent several months trying to fix my wrist pain with stretches, and you know what never went away? My wrist pain. In fact, I’m mildly convinced the stretches made the pain worse. I kept pushing through it for ages, though, because I kept getting told it was supposed to help, and that it was IMPORTANT as someone who spends all day on the computer to TAKE CARE OF MY WRISTS via THESE STRETCHES WE HAVE HELPFULLY COMPILED ONTO AN INFOGRAPHIC FOR YOU!!!!! ...but that’s not how it works. The rules are a little different when you have a hypermobility disorder. You have to really look into exercises that are safe for you to do, instead of just assuming the ones that everyone passes around are going to help.

“Man, so even those shoulder stretches you see around might not help?” nope! They might not!

“What do I do then?” strengthening exercises... I’ll put resources / explain one easy one (for shoulders) below.

Also if you are someone with a job that requires sitting at the computer all day, and you’re worried about how that affects your health... Even if you just get up once every two hours and walk around / look at something else (even your bathroom!!!) for a little bit, that’s fine, that’s plenty, that’s more than enough. You don’t have to stretch your shoulders every 30 minutes. You shouldn’t stretch your shoulders every 30 minutes if that’s hurting you.

RESOURCES TIME

1) https://www.ehlers-danlos.com/resource/strengthen-your-hypermobile-core-a-home-exercise-approach-for-eds-hsd-and-hypermobility-jeannie-di-bon/ <-- webinar that covers at-home exercises you can do

2) and a whole playlist of at-home exercises (in reasonable sized video chunks) by one of the experts, here: https://www.youtube.com/playlist?list=PLp-oNOmoFdAMFZB7XfpUZyvg_xzE3S3Ue – DISCLAIMER I HAVE NOT WATCHED OR USED THESE, SO WHILE I CAN SAY I DOUBT SHE WOULD BE FEATURED WERE SHE NOT A REAL EXPERT, PLEASE JUST. Err on the side of caution. If even one of these hurts you, try not to do it until you can talk with your personal physical therapist, which, yes, I realize requires Acquiring one first..... worth poking around tho, this person has a ton of tips on how to be careful with your joints while doing chores and day-to-day tasks as well, it seems. Actual advice that might actually help you instead of “oh make sure to stretch every 30 minutes!!!!” (might not help) or “have you tried jogging? Its free and easy!!!!!” (sport that is more likely to injure you thanks to the weak joints thing)

3) You can also search “exercise” on ehlers-danlos.com and come up with a ton of other pages/videos/etc of EDS friendly exercises produced by the experts that run this site.

4) That One Easy One I Can Explain In A tumblr Post: Bridging

Meant for core stability, but also works towards strengthening your shoulder muscles as well. Bridges!!! You can probably look up guides, or the lady I linked above has a video that includes her doing bridges about 4 minutes in. here's the video (link).

The version I do involves going up for five seconds, then down for five seconds, repeating for a minute (time yourself). Each day add on ten seconds (so second day you do a minute ten, third day minute twenty, etc) until you are eventually able to do it for three minutes. You do not need to go past three minutes. You are recommended not to. You are recommended to work up to 3 minutes and then continue doing it for 3 minutes every day.

(It doesn’t have to be every day nor does it necessarily have to be 3 minutes every time; if I’m tired or in a hurry I’ll just do two minutes. If I’m really tired I’ll just skip it and do it the next day. No big deal!)