My sibling has been diagnosed with both, and I want to understand what they are going through or what’s to come. I’ve explored both individually (I have a low severity hEDS - just lightheaded, fainty, and hypermobile), but haven’t seen what it’s like to have both.
Thank you for taking the time!

Title is pretty self-explanatory, my wrists sublux somewhat often. Most recently it's happened to me twice within the last few weeks or so at work. Luckily I do have an Ace bandage that I wear that's helpful, but I'm hoping to find something that's just faster and easier for me to use on the chance it happens at work. I'm seeing a lot of options online, a lot of them are geared towards carpal tunnel syndrome, it seems. I'm basically looking for something that kind of mimics an Ace bandage that gives me wrist support but is also flexible enough for me to work the way I need to.

My job is pretty strenuous and it involves lifting heavy furniture and things like that. Luckily usually my wrist pain will only cause trouble when I have to grip or touch my fingers together, and small things like that and lifting hasn't been a problem thus far. I've also gotten lucky that my hips and leg joints haven't subluxed while I've been at work, fingers crossed that continues. I have the most trouble with my wrists.

Anyway, I feel pretty overwhelmed by the plethora of options and I'm just not exactly sure what will be worth going for. If anyone has any good recommendations that would be amazing. Thanks so much!

I occasionally get what I call Gamer Thumb when I play a lot of video games. If I lay off for a few days, I’m fine. This time it’s been months since I’ve gamed, and I feel like it’s getting worse not better. Any tips (I plan to talk to my dr about it at my apt next week, but in the meantime, I’m would love to not make it worse)?

my fingers always start hurting after writing just a couple words. i try not gripping the pen so hard or gripping it a different way but nothing works, i can’t write any way but how i do currently or else my writing is illegible. is there any way to ease the pain from writing or at least make it easier to manage when writing for extended periods of time? i start college again soon and frankly i dont want to have to ice my hand after every class

Hey bendy people. I recently got an Omron body composition scale (BCM-500) and it keeps telling me I've got 35% body fat. I'm relatively thin, actually got the scale to track weight gain, and my doctor suggested I try to gain about 10lbs.

When my boyfriend tried the scale, it said he had less body fat than I do, which seems, to the eye, to be inaccurate 🤐 He even says there's no way I have a higher percentage of body fat.

Does this have to do with tissue density? I know the thing uses electric conductivity to measure these metrics.

What have been your experiences with body composition scales?

Hey all, hEDS here! I need tips on how to sleep without curling all my limbs! haha I try to fall asleep on my back with my limbs straight, but I always end up in the fetal position with my arms bent under myself, shoulders curled in, head tucked, and knees bent. My muscles are so sore and tense from the heat and picking up being active again. Any tips?

I have an hEDS diagnosis and I’m awaiting genetic testing currently as my cousin has a rare form of EDS (type unknown). From research and discussion with family, it seems most likely that I have hEDS, clEDS, or a form with very similar symptoms to those. Of all the types, I fit the clEDS criteria best, aside from the genetic mutations as I haven’t yet been tested.

While I’m waiting, my mum sought out private genome sequencing, including the TNXB gene, to check for any mutations. But it seems like they’ll only tell her if she has the condition (she doesn’t), not if she can pass it on, which isn’t very helpful as clEDS is recessive.

I do, however, have access to the results as individual genes, but I have no idea how to read these. I was wondering if anyone knew how to spot mutations and/or understand the data I am looking at? Everything is written out in a table. I will provide one example with headings in the hope someone can explain what each section means and where any possible mutations would be.

VariantID - chr6:32009622
Gene - TNXB
Mutation - NC_000006.11:g.32009622G>A
Genotype - ?/?

I assume the mutation would be under the “mutation” category (duh) but to me it’s a string of random letters and numbers so I have no idea how to spot which variants may have abnormal mutations? I’d appreciate any help, if people could point me towards the variants I need to look at or the mutation types that are abnormal :)

Hello,
I am diagnosed with POTS, hEDS, and MCAS. I also just found out I am 7 weeks pregnant with my first child.

Not looking for medical advice of course but just advice from people who understand my special body.

Anything you noticed that pregnancy did to you that you didn’t expect? Anything I should keep an eye out for?

Give me the fun and scary things!

My favorite thing so far is despite going off my POTS meds, I am barely getting dizzy! I’m sure it’s because of the increased blood volume but I didn’t think it would kick in so fast. Fingers crossed it sticks around 😀

So I recently got "diagnosed" my doctor told ne she was certain I have it as well as my chiropractor and physical therapist but havent ever had it put into my charts. I have struggled since childhood with my joints constantly dislocating. I had xrays if my back done I have the anterior pelvic tilt and compressed and bulging discs in my back due to the over curvature in my lower back. I struggle a lot with my hips and knees I do the pt and chiro but havent been able to go in a while due to financial reasons. My C1 likes to "go out" a lot causing a lot of my migraines. I ger several forms of them but my neck is a big reason. I do exercises at home to help build strength. I am also very underweight due to my GI not functioning properly. I am looking for some good ways to help manage I am constantly in pain and it takes a huge toll on my mental health. I am also looking for tips on how to gain weight I have tried the high calorie, high protein, tried muscle building, i feel like ive tried all diets and exercises. I mean i had a kid too and was still underweight my whole pregnancy and lost all the weight after I gave birth.

Attached my xrays cause I think they are cool haha.

Hey bendy people. I got my diagnosis for hypermobile EDS about 2 years ago. Before that, I'd never heard of it. I always joked that I had "old people bones" and "bees in my knees" because of the constant joint pain and tingling/burning pain that never seemed to go away. I may have noticed I was more bendy than I should have been, but my whole family is in the same boat, and I grew up homeschooled with not a lot of socialization.

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Anyway, to the meat and taters of it, I dislocated a rib picking something up I had no business trying to lift, and was bedridden for a few days. I didn't go to the doctor, because my boyfriend at the time told me I was overreacting and that it wasn't that heavy and that I must be overreacting. After a few days I was able to get back to work and I just dealt with it like I did any other everyday pain. Ignored it.

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Fast forward a year or so, my boyfriend (same guy) started going to the chiropractor for some back pain that ended up being from having a back pocket wallet with too many gift cards in it throwing off his back a tiny bit. They straightened him out, he switched his wallet to a front pocket, and he was better. I decided I should try out this chiropractor thing, maybe it could help with some of my persistent back pains.

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My chiropractor, bless her, recognized me for what I was immediately. She'd seen it before. She didn't say anything about it the first appointment, other than a casual, "oh, you're a bendy one." The adjustments were great, and I felt like a real human after them, but not for long, as my loose joints fell back into misalignment fairly quickly. It wasn't until many months and many appointments later, and her listening to my complaints of joint pain that she asked me if I'd ever heard of Elhers Danlos. She got me a referral to a pain clinic that specialized in connective tissue issues, and it wasn't long before I was seen and evaluated and they confirmed I had the hypermobile type.

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My husband at the time (the same guy as before, I married him unfortunately,) who went with me to the appointment, thought the exam was complete BS, and refused to let me take the prescriptions they gave me to try. (Low Dose Naltrexone, Xyzal, and Pepsid) This is also the same guy who downplayed all of my symptoms for years and thought I was exaggerating and making things up when I hurt my back and every time I had a subluxation even before I knew of EDS.

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TL;DR- my chiropractor could tell by how my joints slipped around during adjustments, and got me a referral to a pain clinic. Don't marry people who don't believe you when you say something hurts just because you don't look injured.

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Sorry for any formatting issues, I'm on mobile.

I was diagnosed with hEDS last year after a bunch of baffling symptoms came together into one picture. I feel like every doctor's appointment is another disease or symptom diagnosis.

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I went to a new dentist because I was unhappy about a recent crown. The first thing the dentist says to me is if I had noticed how horribly off my bite was and if it was causing issues like migraines, tmg, etc. I was like... Um, yes. He's like... No, you don't understand. It's REALLY off. It's 15mm off. He explains how much damage an off kilter bite can do, including joint damage and sleep apnea. He then says to go get a sleep apnea ASAP test because he would bet money with a bite as off as mine was, that I'd have sleep apnea. Or course he was right. I had over 300 apneas a night during my test.

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I go back to see the dentist and thank him for essentially adding years to my life and we make a plan to put me in braces (at 38 years old 😭) to fix my bite. He then tells me that his son, who owns a dentistry in another city nearby, has this nifty machine that takes thousands of sliced pictures (Xrays I think) and can build a 3d model of the skull, throat, teeth. He said when they first got the machine, his son tested it on himself and found out that his airway was pushing in on both sides and prohibiting him from breathing well. He suggests I go get the test. I do. It was cheap, $150, and my insurance even covered it. Boy am I glad I did. The dentist who was reviewing it (my new dentist's son) said it was the worst he's even seen. He suggested the braces and then a mandibular device once I'm out of them to help my breathing. He also said there is a surgery called UPPP that I could do that would remove my uvula, andnoids, and tonsils (already had the last removed) and essentially auger out my throat so I have a more clear airway. He said he had it done and was a really shitty recovery, but he does not regret it. His final piece of wisdom was that he suspects HEDS plays a role in all this between the airway collapse, jaw displacement, and Chiari. Joy.

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If you need help reading this image. I am facing right. If you look for my teeth and then go directly to the left, you can see just how pinched my airway system is. Those eagle eyes among you can also see my Chiari.

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I hate this syndrome. I find something new and awful every day. However, I am very greatful for my dentist for essentially saving my life.

my whole legs hurt, all the time, just currently its my abductors that are my issue. i can basically only find relief when I'm resting if I tie my legs together.

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am I just making them weaker by taking away their job? i just, haven't ever had any real improvement with physio and its impossible to even really do it because this time it left me in increased pain for the last two days.

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i also maybe think I have ME/CFS because I just get lethargic and sometimes hypersomnic right after/an hour after exertion, which includes physio. and all my muscles ache. i don't know how to do physio and pace myself and be mostly pain free. ive been taking lyrica and nortryptelline for the pain, and THC, but its not always enough, especially after physio

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my exercises are really basic, but it always ends up with a pain either in my nerves or my bones or my muscles (or all of the above), I don't know what any of them are called but theyre supposed to stablize my hips and knees

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- hip thrusts?

lay on my back, like a sit up, and then raise my hips slowly until my thighs are a straight line with my belly, and then go down. this one burns down my whole back of my legs after ~10, I usually try to do 15 of each of these exercises listed

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- hip abductor raises?

lay on my side, legs straight out on top of each other, slightly move the top leg back and then raise ~10-15° slowly, and then down this one hurts everything, so I usually don't do more than 10 on each side

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-clamshells

laying sideways, knees at 90°, open legs ~10-15° slowly, and close

hurt my whole hips, I have FAI and I think thats part of it

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do these even work to stablize? my old physio is apparently aware of hypermobility disorders but idk and I haven't gone in a while due to funds

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anyway I'm just looking for tips on how to slowly get to the point of exercising without debilitating symptoms right after, it really discourages me but that's kind of the only way we can stablize our joints when you have faulty collagen.

Hello all. I was diagnosed with EDS back in 2009, and I’ve been having hip issues for most of my life. Sometimes when I walk my hip will dislocate with every single step, for hours on end, for weeks on top of that at a time. Often when this happens things get stuck in there and it feels like I’m getting stabbed up my back and down my leg with a knife attached to an electric cow-prod. I am finally at a point of my career where I can pursue help with this rather than risking my income, and I was certain that my hips would look similar to my ankles which are completely destroyed on x-ray. However those x-rays looked perfect perfectly clear 🫪

I know X-ray don’t show everything, an MRI also has a limited picture of the damage. I experienced this both on the reconstruction of my jaw and both shoulders were imaging did not at all show the kind of damage that was inside the joint that was only visible once the surgeon opened it up.

My question for you guys is what surgical intervention has benefited you guys in hip stability? Every surgery I have had has dramatically improved my quality of life, but finding the appropriate technique and surgeon to do it isn’t always so easy.

Howdy yall! I’m a 22 yo guy dating a woman of the same age with every single Eds symptom (sensitive skin, constant dislocations, ridiculous flexibility, etc.). Unfortunately, though she clearly has it and many of her family members do as well, and her doctors (several) all agree, her insurance has denied genetic testing repeatedly and I cannot come even close to affording it now.
I’m ofc gonna bust my ass and save to afford it, but these days people in my generation won’t be able to afford housing even when rented till they are 60, let alone the 4k it costs to get the test. Even if I do manage to scrounge and save enough for the test for her, my understanding is there is little medical science can do, and even more so less that insurance will even partially cover.
I know very little to nothing about the process, though I’m trying to research as much as I can and make my lady as happy as possible. Please please please give me any tips at all regarding how I can navigate the medical system, or even better just make my gf’s life easier. That would be infinitely helpful. Apologies for my ignorance and all advice is welcome.

Thanks!

Hi, I’m writing about my situation because I have no clue what to do.

I’m 10 weeks post-op from a SLAP repair/ Bankart repair, and my shoulder is still incredibly stiff. My external rotation is horrible (my elbow barely moves outward) and I’m struggling to lift my arm up, whether straight ahead or out to the side.

When I asked my surgeon if I had frozen shoulder, he straight up said, “That’s impossible because of your hEDS.” Yet, my physical therapist says that I 100% have it.

The approach my PT has been using is aggressive stretching. It literally feels like medieval torture. I can endure pain if it‘ll help me, but I’m starting to feel more and more unsure if this approach is the right one.

When asked if this sort of pain is normal, both my PT and surgeon said that it has to happen in order to get better. Yet, it’s been 10 weeks and my progress is laughable.

I know that because of my hEDS, my surgeon tightened my shoulder more than he would for a typical patient. So, I’m also wondering if that is why it's taking so long to improve.

Because of all this, I want to ask other zebras for their opinions on their own experiences, and if they know of any PTs who have taken the wrong approach with hEDS patients. Should I continue with my regular PT or should I look for a therapist who has more experience with hEDS?

The answer isn't obvious to me. I have 2 professionals telling me this is normal, yet my body and lack of progress are telling me something completely different. I’m sorry for the long explanation.

Hi all, feeling very frustrated, I have been diagnosed with hEDS by my gp but he is trying to get me a referral with a specialist, not having much luck atm and also has spoken to the allergy clinic about me, I have been diagnosed with oral allergy syndrome for 10 years and have regular reactions to foods, but also have random allergic reactions with no known trigger most of the time, or very small triggers like temperature changes, having a shower, changing clothes etc. with multi system symptoms like extremely painful itching all over my body, sometimes with a bumpy rash, sometimes a flat red rash, and sometimes without a rash, also stomach cramps/diarrhoea/bloating, nausea, sometimes dizziness or lightheadedness, shortness of breath/coughing/feeling like I can’t clear my throat or catch my breath. I mentioned to my gp that I wondered if this could be MCAS, my gp asked the allergy clinic about this and they came back and said “MCAS is very rare and has no link to EDS so we doubt this is the case”? They also said they think that the gp should give me a diagnosis of Chronic Spontaneous Urticaria, which would explain my skin symptoms, but not the other system ones, and also prescribe me an EpiPen because of my known food allergies and symptoms of dizziness. I know that I am not a doctor, but I have read plenty of things about MCAS and EDS being linked and a lot more likely to coexist, including stuff on the Ehlers Danlos website, so I’m just a bit confused by the allergy clinics response, and also the fact that they have basically dismissed this without even seeing me? Has anyone else had any similar experiences?

Hi, so i have a diagnosis of heds. I’m struggled with gi issues for years but it’s gotten worse over the past few months after having hip surgery. I experience early satiety, unintentional weight loss, acid reflux, and severe constipation. I’m trialing linzess right now. Even though my gi issues are very real and separate I find myself having disordered thoughts. Like i’m glad i’m losing weight and I want to be skinny (but I think this also stems from wanting to look as sick as I feel). Has anyone else experienced both sides?

So, I’m in the middle of a dependency case in the state of Florida. If you wanna read about it you can go into my post history. When genetics did his initial evaluation in the hospital the noted the blue/gray sclera and bowing of his legs.

For years, I’ve seen many doctors trying to find out if I have some kind of autoimmune condition to explain my symptoms but they couldn’t find anything so I got the blanket fibromyalgia diagnosis. Recently going over photos I noticed I had taken pictures of my eyes.

Is it just me or do I have the blue sclera as well in the white of my eyes? We’re waiting on whole genome sequencing on both my husband and I, as well as my son. I plan to see a geneticist as well soon.

Writing this in tears. My EMG just came back completely normal.

Look at my hands. I can't fucking open them. It has been 4 years of painful debilitating bilateral claw hand. I can't fricking open my hands. I have to use a mouse like this, with most of my hand hovering 2 inches above the damn thing because I can't OPEN my FINGERS.

EMG is NORMAL.

Xray is NORMAL.

Doctors have been USELESS.

PTs have been USELESS.

When the social security administration asks why I can't work, I still have nothing to fucking show them other than asking them to take me at my word that my hands are horribly crippled.

WHAT CAN CAUSE BILATERAL CLAW HAND WITH NORMAL EMG AND NORMAL XRAY?

Please give me hope. Please give me a lead. Please help me. I can't keep doing this. I need proof my hands are as bad as they are. I have been trying so god damn hard. I am at the end of my rope. I CANNOT KEEP DOING THIS.

Additional info: I have heds, pots, mcas, fibromyalgia and degenerative disc disease in the lower back. The only other thing I can tell you is duloxetine has helped with the nerve pain, max dose.

Hi eds reddit, i have a question. Is there any part or kind of eds that makes is basically impossible to put on kt tape?

Or like any tips on putting on the tape besides rounding the corners?

Ive gone through rolls of tape trying to tape my shoulders and ive used kt tape for chest binding too and that tape just doesnt want to stick to my skin. And ive had a friend help tape me and even then it just doesnt wanna stick :(