I could only do one warning, but there’s body conversation here too..

Hi all, I’m a momma of 3 - and some early miscarriages - and I love my body.. I’ve always enjoyed hatha yoga.. And being able to smell everything, even hearing everything is pretty fantastic for me (more than not).. but! I got a hernia in my abdomen, and bc I gained with each pregnancy, I can’t get it repaired yet. My abdomen muscles have always been my Waterloo- very little support, which makes my core sore especially around my L4-L5 (unsurprisingly my grandma also had an abdominal hernia , and her L4-L5 removed). But even with really good holders (I have one from HoneyLove), I don’t have the ability to maintain my stomach in so I can move the way I want. I’ve always been active and muscular (even soccer goalie, and blew my vein.. not knowing I had EDS. The bruise was impressive). I also have PCOS, so I build muscle easily. But I feel unable to move bc my belly just throws off the rest of me. What have y’all used to support abdominal muscles? Where can I find exercises to do in my back ? — I used to do a gentle yoga, in person, but kids — etc?

I had an appointment with my doctor to discuss my genetic testing results. I wasn’t shocked to hear nothing came up on the test as me and my doctor believe I align most with the hypermobile subtype. What came as a shock to me was that my doctor said we need to pause the EDS diagnosis because my EEG came back abnormal and I need to have a brain MRI as soon as possible.

I had a seizure in August that we think was caused by low blood sugar. I had been tracking my lows since and they definitely correlate with neurological symptoms. I had the EEG in November (normal blood sugar) but I’m not scheduled for my MRI until September of NEXT YEAR. My doctor is now calling my neuro and the hospital to see if they can expedite the MRI.

I’m honestly terrified that I have MS or some sort of growth on my brain. It would help explain the sudden onset of my POTS/autonomic dysfunction, various neurological symptoms and more. I’ve read online there is a higher prevalence of MS in those with EDS but not sure if anyone has more info.

Has anyone here with EDS had an abnormal EEG?

I will update this post as I go on. I broke down and bought the body braid because I’m in so much pain in my t-spine, I’m getting older, and doing a lot of heavy physical work around the house and yard. I have known about BB since it first came out and the price turned me off. After a couple glasses of wine I just did it and put it on a pay pal 4 installment plan to absorb the shock to my bank acct.

Background: BB is Canadian and I am a US resident, so I wasn’t shocked it seemed expensive by my standards. I am an occupational therapist and my partner is a physical therapist (physiotherapist) so between us we do know what we are doing. I am certified in kinesio taping and have used strapping like this for a decade (since I’ve been an OT). I’ve always just made them for the pediatric patients or used clinic straps for legs.

I bought the “extra support” core braid with the leg straps, I think called the “system” but they just changed the descriptions it seems. Anyways, it’s everything but the arm braid, which seems unnecessary unless you have a lot of elbow issues.

The extra support is VERY firm and you can’t take one of the layers off.

The device is literally 3” elastic with Velcro sewn own. I would have preferred they use loop-back Velcro elastic, which means the hook could attach anywhere on the strap.

Pros: Customer service is very good

They offer video sessions if you need them to help figure out how to put them on

Shipping was pretty fast to the east coast of us.

Cons: Even for Canada, even if they are paying wages of $50/hour, it’s overpriced. I could have sewn this in under an hour.

The design is not innovative. It takes from strapping science but it is not nearly as versatile.

You can only customize it in a couple of ways.

The strapping doesn’t have any silicone backing, so it slips and slides and goes up your crotch, slides around, etc. no matter how tight or loose it is.

It’s bulky and needs to be worn over clothes

Overall it’s comfortable but with even slight improvements (silicone backing) it would really improve the experience. It does seem to help with my posture but it cuts into my pits, and now that elastic is getting misshapen and folding over.

I may take some inspiration from the design, and create my own version. I will update.

It seems definitely meant more for sitting. If you work from home or sit at a desk all day it might be a better fit for you. You still would have to take it off partially in order to stand up, go to the bathroom etc.

I wish they would make the cost more accessible and could maybe get more feedback and improve product design. I kept meaning to make my own version but never got around to it. Maybe now I will, now that I know that the available options just aren’t great.

How on earth am I meant to be ok with looking like this?!? I’m 17 and covered in stretch marks everywhere. They’re on my thighs, arms, butt, sides, boobs and everywhere! Combine that with cellulite, swollen legs and big boobs that are already far too low for someone my age and you get a recipe for self hatred. My boyfriend doesn’t mind it at all but I notice it all day every day. I can’t even lose weight because I feel light headed so often and I cannot run at all because of my joints! Has anyone else cracked the code to not feeling like this?

So, ok I got diagnosed with articulation hiper mobility (? Not my mother language) in 2021 because of extremely pain on my articulations especially the legs one and I always have been hiper flexible feeling like it was normal since I used to dance until i stopped and still could do the moves and people were like OK HOW (and honestly that’s cool), always had trouble like my dad mocked me that at least once a year I had to go to the doctor and used plaster cast (my family bought cause how often I used, alongside with crutches) and sometimes actually casts. At the extreme i brake both sides of my ankle at once and well surgery, plate and surgical pin, chronic pains still, my friend one day just turned to me “oh u have ehlers-dalnos right?” And everything makes sense finally Sorry for the big intro, my point is: chronic pain still and it get worse when the weather changes randomly and it’s happening so much today i woke up beat up, all the articulations of my legs hurts. I imobilize like my knee since is on the middle (idk makes sense in my head) and put those gel bags, warm or cold and doesn’t solve it but helps a little but today is worse and worse so pls any tips on chronic pain in the articulations of the legs? (I just vent a little bit sorry)

So I have hEDS and despite that, I attempt to lift weights to help with strength/stability. Like most of us, I have a lot of issues with correct form related to proprioception issues, and just general difficulty getting the right muscles to engage and having things not hurt while I lift.

Specifically, I have hip issues and always struggle with leg workouts. I know you’re supposed to tuck your pelvis and engage your core for squats/etc so I always did that…

Today, I found out that my version of the above was actually somehow resulting in a rounded back (which is a big no no for squats and lunges and such). I found out that I need to do what feels like “arching” my back, which for me just ends up being a neutral spine position.

This helped me so much! It completely took away my low back pain that I’d come to accept as normal and really really helped with muscle engagement. I also know it will help for when I’m bending over to pick something up - I had been rounding my back for that as well evidently. Just wanted to share this small win!

It’s hard to describe but i’ll try my best.

My hips are extremely unstable. Subluxations happen every time i move or take a step. I usually notice them because of the pop but they’re not painful.

However sometimes any movement in the joint is painful, like i can feel the joint rubbing every time it moves. It’s been like this for 24 hours now and my rides on public transport yesterday were not fun.

I had a really good day today and got myself thinking “what if I don’t have EDS?” And then tried to lift a TV with my partner and subluxed my wrist and went “oh there it is right” 😂 That’s all, just found my train of thought funny lol

I really want to get myself a cane. I think it would be an excellent support need.

I’ve always been very affected by my hEDS growing up (I couldn’t fully walk until I was two, my leg joints couldn’t support the weight of my body), growing up I’ve experienced a lot of changes, and fluctuations, but lately it’s been worse. Daily subluxations and dislocations. Chronic pain. You all unfortunately know the deal. The only visible supports I’ve given myself are braces. I want to get a cane that I can use all the time, for extra support because my legs/hips are a particularly bad problem area.

When I use the cane, I’m not worried about how strangers will react, but my family. I’m only 21. I don’t want to deal with “you haven’t needed one before so why now?” “It doesn’t LOOK like you need it” “you’re being over dramatic.” Etc etc etc…

I just don’t know how to handle them adapting to the change or questioning me. In a perfect world they’re happy I’m getting myself something to support my needs. But they don’t really even take my issues seriously to begin with? It’s so weird because they’ve witnessed my major symptoms time and time before.

If you’ve experienced something similar, please share & tell me how you overcame it? How do you confront your family seriously that your disorder is getting worse, and you need to support yourself and prepare yourself for that? How do you help them understand the accommodations you need? That someday it might not be a preferred accommodation but a necessary one?

😕 I’m really anxious about the whole ordeal.

Diagnosed hEDS, I don't get dislocations. But wrist are a weak point.

I'm doing pilates but not upperbody weight exercises (is I can't hold my weight through my wrist/elbow shoulders).

But some reformer exercises I can't keep my wrists in the right position.

Does anyone exercise with a wrist brace?

Asking because I was cooking dinner tonight and my familys like that's NOT how you hold a knife 😅 but I don't have the wrist stability to use a knife ‘correctly’

Firstly: Not here to debate the "well actually"s of what a physiotherapist is and is not qualified to do, or semantics on "oh well actually [xyz]". Literally I am just here to complain. Sorry if that sounded rude at all, I genuinely don't mean for it to sound hostile, just I cannot stress how Not in the mood I am to be told I'm an idiot about something, yk? (/lh)

So recently (in the first half of November) I got diagnosed with hEDS and MCAS after being tossed between a bunch of specialists trying to find out what my deal was. And yk, it's great finally knowing what the sitch is because now I can, yk, work on managing things.

Part of this was, of course, physiotherapy. Initially looked in to it after consistent issues with my knees and ankles, but the focus is more on my upper back and shoulders, since they're, medically speaking: weak as fuck. The muscles in my general back-shoulder area aren't strong enough to support everything, so I'm told. If I'm sitting at a table I need to prop myself up on something or I will be in horrible pain the entire time. And, yk, that'd be all fine and dandy were it not for the fact my physiotherapist thought himself capable of un-diagnosing my hypermobility.

I was diagnosed with hEDS after being assessed (and having my medical history reviewed) by a geneticist. I have had hypermobility my entire life. Not unreal levels of hypermobility, but like. The standard stuff. I can bend my knees back pretty far (and that's generally my natural way to stand), elbows go backwards. I was able to fold pretty cleanly in half at one point in time, and was nearly able to during the assessment. All of my fingers go beyond 90 degrees, and while my thumb didn't quite reach my wrist, the geneticist felt confident in his diagnosis.
And again: I have had this my entire goddamn life.

So this physiotherapist decides to take it upon himself to test my joints on his own. And forgive me if this is hostile, or rude, but quite frankly; I am not going to take the opinions of what is, essentially, a glorified personal trainer, over my own lived goddamn experiences, and the thoughts from a doctor whose entire fucking job it is to diagnose this in people. Like, I'm sorry, but you're just fucking incorrect.
"If you were hypermobile, your fingers would touch the back of your hand" Do you even know what the Beighton scale is. It's 90 degrees, not 180. Also you bent my thumb in the wrong direction.
I'm not here to be un-diagnosed, sir, I'm here because I am in pain whenever I have to sit at a desk and I would like that to not be the case. Can you please stop trying to "Um actually" my own condition please before I start crying in your goddamn room.

Just. I don't think it's fair that I have to wait for years to have my medical issues taken seriously, only for fucking. "Nuh-uh" McGee over here to tell me "By the way, your lived experiences are wrong. I and I alone know this". Like sure man, if you think the geneticist was wrong, you're more than welcome to march yourself to his office and tell him. Please, for the love of God, stop pretending to be an expert on something you very fucking clearly do not understand. You got the Beighton scale wrong, I don't trust a single fucking thing you say. You are not me, nor my goddamn GP, or the geneticst; ergo: shut the fuck up. Jesus wept.

Quick lil edit cause I just realised this might cause a smidge of confusion: He didn’t undiagnose my EDS as a whole, just specifically the hypermobility. If he said “Erm you don’t have EDS” I wouldn’t be here, as I would have burst into flames the second he said that, lol. Again; my medical history was looked at. I wasn’t diagnosed solely with the hypermobility during the assessment, he did also look for stretch marks and the like. Figured it might be worthwhile to clarify a little bit.

I’ll probably look in to finding another physiotherapist, as has been suggested; but I really do mean it when I say the pickings are slim. I live in a rural part of Ireland, and unless I want to drive however many hours to get to the nearest city (which even then I can’t do; not able to drive), I’m stuck with whatever the assortment of small towns nearby can give me.

This was supposed to be an underpainting that I would add more colors over with a big squeegee but I like it so much I’ve left it as-is and just started a new canvas. I was diagnosed 10+ years ago with hEDS and use painting as a creative outlet for helping relax. It’s usually a good distraction but sometimes it can make for more stress.

Hey everyone, I’ve never posted on Reddit, nor have used it at all up until now, but I’m really struggling to find people who will listen to me regarding my ‘mystery disability’. Id just like some support and advice since I’m having SO much trouble getting diagnosed.

Here’s what’s up:

I’m 19, nearly 20, working class living in the UK and currently studying at university. After many years of back and forth with GPs, plenty of reading up on CTDs/EDS/autoimmune disorders etc. and meeting a few people along the way with adjacent disorders, I am like 90% certain I have hEDS.

Since about 10 years old onwards I’ve been experiencing some pretty intense chronic pain and fatigue. It started out in year 6 (10 years old) legs were basically not functional, I had super intense pain in my legs and ESPECIALLY my knees, LOTS of joint clicking, being “double-jointed” along with chronic fatigue. I was LIMPING on the playground bc of it, but it was of course all chalked up to “growing pains” and “being lazy” so I was never allowed to go to the GP about it.

Around 14 years old I’m getting real sick, all sorts of weird symptoms, HORRIBLE periods (ftm man he/him btw plz) lots of pain, dizziness, crazy fatigue, looking like a zombie. So my nan, diagnosed with fibromyalgia takes me to a few GP appointments. I see the paediatrics in the hospital that basically confirm fibromyalgia (at the time) but don’t diagnose me since my iron was also crazy deadly low. My iron gets sorted and I still feel awful.

So I kinda just don’t do anything about it until I start studying at uni at age 18, without ANY support from school, doctors and hardly any from family or friends, so it’s getting worse and worse. I finally start trying to do something about it, and it’s been over a YEAR since I’ve registered with my new GP and brought up the issues. They’ve ran so many blood tests on me, making mistakes and filing the wrong blood tests (which sucks for me bc I have super sensitive skin that’s easy to bruise and it’s a lot of physical and mental energy.) My most recent appointment, I’ve brought up hEDS, and essentially my GP said “there’s not much we can do.” She puts me on folic acid since my folate is a little low, and also prescribes me amitriptyline for my chronic pain. She wants me to check up in 1 months time regarding the amitrip. And 3 months for the folate. If neither of these improve my symptoms, she wants to take a more “holistic” approach.

Currently my symptoms have been getting that bad that I’m pretty much housebound, I’ve had numerous ambulances services called to my dorm by 3rd parties like first aid and security, my exhaustion is interfering with my breathing while asleep and loads of crazy shit like that. But until I get a formal diagnosis or SOME sort of doctors note, the financial and educational institutions will not help me, so much for a holistic approach. And obviously I don’t have the money for any private care rn so☹️

So yeah, that’s pretty much it, and I don’t really know what to do, I’m sure it must sound familiar for people here since medical gaslighting and negligence happens all too much with chronic pain disorders. I just want any advice at all please please please my body is so tired and sore🙏

I'm looking for my first car, and i can't test drive all cars ever because it would hurt me so so much.

i'm 18 years old and looking for a small car, 1.0-1.25 L, hatchback, i use a wheelchair (rigid) so preferably a good sized boot but i can store it on the passenger seat, automatic only.

i've been looking at a kia picanto (i think the one i test drove was a 2 model) but i went on a test drive and within 5 minutes i had pain that didn't go away until i could lie down at home.

i was wondering if anyone here has a kia picanto GT Line and has problems with the suspension.

i have no idea who to ask so i thought i'd come here and see if you guys have any suggestions for me

i think it has to be a smooth suspension but the issue is finding something i can afford that i can also drive in with little pain.

£7000, or something available on motability scheme under 25.

i'm HSD diagnosed, suspected CCI, but yeah just trying to find a good first car, i forgot to add but i think the issue is the vibrations of the car through my seat.

dear zebras, next week after six months of rehabilitation following a somewhat complicated shoulder surgery (second surgery after multiple dislocations over the past 17 years), I’ll finally be returning to do exercise. Now I’m debating whether to join a gym or do Pilates three times a week (I’m a 32-year-old man).

For the past 10 years, I’ve been going to the gym regularly, and I really enjoy it. However, I’ve always felt that while I strengthen my muscles, there’s “something” missing in terms of my proprioception and overall body control. On the other hand, I’ve heard that Pilates isn’t always recommended for people with hypermobile EDS, but the idea of focusing on core work and improving my stability and mobility is very appealing to me.

I know every case is different, but based on your experience, what would you recommend? What do you prefer? Thanks in advice!

1. ^(It went down like this - 4 months ago I heard about CTDs/EDS for the first time in my life. I FREAK -) ^(it is literally the biggest thing that's ever) ^(happened in my life. What do I do? I do what anyone who's discovered the answer to an at least 150 y.o. family "curse" would do - I contact EVERYONE I can think of. - by phone, text & email.)
2. I'm reading everything I can get my eyes on and decide to cross check of all my physical issues with EDS and they all come back as "more likely with EDS" - everything from Brachydachtyly (my new favorite word) to ectopic pregnancy. I ultimately ended up with 42 so I made a "book."
3. At that point I start mailing the 24 page thing to doctors, doctors and more doctors, friends, family and countrymen. I look up the address of one of the first people I wrote to (my former doc from 13 yeas ago) and find his obit - no cause of death is given. He wasn't dead when I emailed him. Did I mention he was an Ivy League educated psychiatrist I saw for 2 years and he'd diagnosed me with Somatization Disorder?
4. What would you do if you were in my shoes?

TW!

I'm so fucking tired. My body is failing me and falling apart no matter what I do. I can barely walk. I can't afford time off of work, I can't afford doctors, I can barely afford to feed myself. I wish I would have killed myself at 15 before there was people relying on me. I wish I would have tried harder. I'm so sick of everyone saying it will get better when it so clearly only gets worse.

I’m pretty sure the FMC(violet) has EDS but it could be another connective tissue disorder. I’m only part way through book 1. It’s amazing to see her overcome everything and get stronger(not cured so far but stronger). When I’m reading this I can relate to the FMC about a lot of her pain & suffering! It’s nice to see her be so strong because she lived a life of suffering. I’m calling witting about MCAS or dysautonomia because nobody would believe that is even a real disease lol.

I have debilitating pain in my legs and back, and as a result, I can't do basic activities or hobbies (cooking, gardening, laundry, driving, etc) and often times find myself bedridden for days at a time. I've been on opiotes for the past two years, and while they don't totally relieve my pain, they dull it enough so that I can get out of bed and engage in some of those activities and hobbies. However, I'm starting to build up a tolerance and am worried about increasing my dose yet again given the risk of addiction (I'm on a fairly low dose, taking about 60mg of narco/day). I've had some success with Methocarbamol for my back pain, but besides opiotes, nothing even comes close to addressing my leg pain. Some meds I've tried include Gabapentin, Lyrica, Low Dose Naltrexone, Nortriptyline, Duloxetine, and steroids.

Had anyone used opiods for multiple years, and if so, how hard has it been managing such a risky medication? Alternatively, has anyone had any success with medications other than opiotes?

Just in case it comes up, I'm not exclusively relying on medication for pain relief; I'm actively participating in physical therapy and rehab with an emphasis on strength training and I have custom knee braces and AFOs. My orthopedic surgeon has recommended bilateral foot & ankle reconstructive surgery, but I'm trying to hold off on that for a few more years since it includes multiple fusions.

Hello folks! My team at the chronic pain clinic are having me try out TENS for my reoccurring back- and neck pains, and I'm sitting in bed now working through the different recommended programs trying to find a good fit for today's "home after a long day out" aches.

I wanted to ask those of you who have tried or are using TENS for your pain, what are your experiences? It's interesting how much variation there is when it comes to chronic pain and what works for whom, and I'm very curious about how that variation presents itself in such a heterogeneous group of disorders as EDS and HSD.

I'll start out with what I've found so far:

• My frequent reoccurring pains in the back and neck vary a lot in placement and intensity, and sometimes in type as well. The effect of TENS varies a lot depending on these factors.
• It seems like when my pain is on the lower end of the spectrum, which it is the majority of the time, TENS will trigger it rather than help, so I haven't been able to use it nearly as much as we had hoped.
• When the pain is worse, the TENS is more likely to help, but it's still hard to find the setting that is effective for each instance
• I often can't really feel the electricity until I've raised the amplitude to the point where I get muscle contractions, which is too high. No idea what's going on there, but not a risk I want to take.
• When I'm active, like out running errands, TENS does seem to help me relax the muscles in the area that's hurting.

After years of putting off trying physio, I finally gave in and decided to give it a try. My pain and immobility had reached a point where it seemed like an absolute necessity. The appointment went horribly.

I came in with a long list of diagnoses and recent injuries on their intake form. After she reviewed all that, she unhelpfully tried to educate me about the "cycle of pain" including a heavily emphasized psychological component. I get that, but like multiple fractures etc. do in fact physically lead to additional injuries and pain.

She then let me know she works from a bio-mechanical perspective, and that she's not a therapist therapist. Like, OK - didn't think you were. After letting me know this, she starts asking prying questions about my social life, my family, my relationship, etc. and how much "support" I have. She says something along the lines of "when people have pain like this, they can get better but only when they have community and social support. If you don't have that, you WON'T get better". Like thanks, that's disheartening.

She then goes on without warning or consent to preform an adjustment on my hip/spine area, which I've read a million times here is totally inappropriate for an EDS patient. She did claim to be familiar with the condition beforehand, so that really surprised me. She then spent the rest of the appointment seeming totally perplexed and frustrated with my weird joints while continuing to interrogate me about how my relationship with my parter is.

I did not rebook.

It's taken me a while to even post this but I'm honestly still in shock about how badly it went in so many ways. Please tell me they're not all like this?

Anyone have a really good warm winter glove recommendation? I have tried so many from many brands (Columbia, Eddie Bauer etc,), layering multiple pairs, and switching to mittens, but I think it's time to invest in some really nice ones. I live in the Midwest where it can be -30 windchill or 20 degrees. Even at 20 my fingers turn to icesicles after 10 minutes. Really just looking to be able to walk my dog and not have my fingers burn ! I am allergic to wool and down feathers!

Hi, I just need to vent, I don’t expect anyone to reply and I don’t want anyone to feel sorry for me, that’s not why I’m posting. If you have advice I would gladly take it though. I want to start with saying I am happy this condition isn’t worse than it is for me, I know it could be worse, so please don’t attack me at all. It’s progressed rapidly in the last year. My hands have weakness and pain daily, sometimes I can’t even write. My joints hurt, I have dislocations sometimes, nerve pain, migraines, I can’t even stand in the shower anymore so I use a shower chair, I wish I didn’t have to eat cause of stomach issues, I’m tired, etc, the list is never ending. My knees are bad and I’m only 31. I feel like I’m going to break. I also have POTS, fibromyalgia, arthritis, among other issues. I’m trying to radically accept my health issues and I go back and forth with it but I’m so sick of this and I know it’s only going to get worse. I take meds, I do physical therapy, gym, I don’t know what else to do. I can tell my 6 year old inherited it and I feel terrible. I can’t work much with all these health issues so we are really struggling financially. It’s just my kid and me, no help from the dad (better this way though). Why does life have to be this way.

Kimahri is on the left and Rikku on the right. Husband not in picture but he was round the corner.

I’m not quite sure what it is, but mint flavor toothpastes burn my mouth and tongue. I’ve always had issues with regularly brushing because of this and I’m just curious if there’s anyone who goes through this too and who has any recommendations? I’ve tried kiss toothpaste… never again 😵‍💫 please don’t make me use bubblegum flavored or blue raspberry toothpaste… the texture and taste is rancid

im normally quiet silent on the fact I have EDS. I feel so strange every time I talk to other people who have it. everyone I have ever spoken to has been diagnosed as an adult and it makes me feel bad. I hate that it does but some past interactions on the internet has made me feel weird shame for being “privileged“ of having a diagnosis(this person’s words btw. never dm with a forum rando who was weirdly hostile as a depressed teenager). I was diagnosed as a kid, early 00s. i have dealt with so many issues due to my EDS in weird silence because well. Explaining it to others always got old. Bad encounters with other EDS zebras made it weirdly worse. I hate the weird silence I have had instilled in me but I also hate explaining it all the time. I hate the silent suffering I have done since I can remember. man, a lot of my early memories involve pain or just feeling tired. not to mention all kinds of other fun things. the amount of bowel obstructions I got as a child was obscene. Lots of time at doctors and PT/OT. on top of my EDS i have a heart issue (weirdly unrelated as it’s another fun genetic thing in my family.) i should be using braces more frequently than I do. I should be using mobility aids, so many doctors have told me to but I’m so weirdly ashamed of it. I’m in my mid 20s, I should be spritely but I’m really not. as I get older my muscles are angrier from years of me pushing myself despite it all. Keeping active never has a good balance. the muscle tension I get in my back makes it feel more like a turtle shell then back muscle.
Just does the weird shame of invisible illness ever go away or nah? Like it’s getting kinda old. Working through the shame is like.. so messy and it adds to the fatigue. I have already lived with it this long. I‘m just not very sure anymore. Is there anyone else out there who was diagnosed really young? i feel alone I guess. also guess this should also have the seeking support flair but I feel weird putting it.

Hello! My question is as above! I was wondering how these were measured since Silver Ring Splints doesn't have guidance for this on their website.

I know that for DIP and PIP overlap on other fingers, the top ring of the PIP splint is supposed to be sized up by one size.

The MCP splint, despite looking like a swan neck splint, uses a regular ring sizer instead of the swan neck sizers. Would the bottom ring of the IP ring be sized up instead? Do you just keep the true measurements?

Does anyone have this combination of splints? If so, how were they put together?

Does anyone have the ComfyGo X-9? I like the fact that it allows for recline and leg lift.

I hoped to find someone who has it to let me know how difficult it is to get into a vehicle.

Thanks!

https://comfygomobility.com/products/x-9-remote-controlled-electric-wheelchair-with-automatic-recline

Hello! Long time lurker here. Recently officially diagnosed.

One of my main hEDS symptoms is having trouble holding stuff. My hands are very hypermobile, very painful, and in addition, very small. They just.... bend backwards no matter what I try to do, and because they are small, most things aren't made for them regardless. My doctor advised that I should be using finger splints and recommended physical therapy as well. But for the time being; one of my biggest complaints is that I have trouble holding my phone. Pop-sockets aren't cutting it.

As silly as it sounds, I need help. I'm wondering if anyone else has this issue, and if there is anything you've found that makes your cellular device easier to hold?

Thanks in advance!

You can post about whatever you want during Off-Topic Saturday! All other rules are still in place during this day.

• Off-topic posts can only be posted on Saturday as their own individual post.
• Off-topic posts must be posted between 12:00 AM and 11:59 PM Eastern Time.
• Off-Topic posts must use the “Off-Topic Saturday” flair.
• Topics or pictures that could be triggering need to have a Trigger Warning in the title and must be spoilered.

Some ideas for posting:

Your favorite pet, relationship advice, new recipe for a fantastic dish you made, your most recently finished crochet project, or your enormous collection of PlayStation games.

--

Whatever you want to post about, do it today!

Posts regarding EDS are also allowed during Off-Topic Saturday.