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.

The best I've ever felt was when I was doing yin yoga. I've been told by physios et al to stop with that kind of stretching, but I was having a really intensively bad pain day yesterday. I gave up and did a few of my old most helpful poses for a while, keeping joints within normal range and being mindful of how it felt.

And it helped? I'm walking more freely today than I have in ages.

Does anyone else have a mixed or positive association with stretching?

Just received a diagnosis with Dr Linda Bluestein.
And I’m so overwhelmed with so many mixed feelings. Validation a bit. Relief to put a name to it all. But also struggling with it, as we all know it’s a big blow.

My biggest feeling right now is anger and grief. Anger at all the medical providers who have failed me and gaslighted me. Grieving the last 25 years of my life, wondering what things might be like if I was diagnosed younger, received treatment younger. So angry that no one had EVER run an MRI on me to evaluate for chiari malformations and CCI. All these fucking neurologists, orthopedics, primary care, etc. No one has ever imaged my head, where my most severe a debilitating symptoms are and always have been. 5 orthopedic surgeries for subluxations before the age of 30. No one has EVER even mentioned EDS!!!!!!! I figured this out myself, and paid a ton of money to a local specialist to have this suspicion confirmed.

Sucks, this whole journey has sucked. Does it get better? Or only worse?

Hi looking for recommendations for comfortable thigh high compression socks. I have a pair off of amazon and to me they’re just too itchy behind the knee to wear comfortably all day. Any recs would be great ty!

I've seen many discussions about neck/back pain and sleeping issues in this community but I don't think the raised bed idea comes up often. A doctor first suggested elevating head of bed for managing acid reflux. Though it turned out my GI issues were not from acid reflux, I still tried raising my bed and I was surprised how much it eased my upper back/neck pain!

I used to have constant neck/shoulder/upper and mid back pain and every sleeping position was super uncomfortable for me. I had weekly PT + acupuncture/massage to keep me sane. Since I had my bed head raised by ~3 inches, I've had days without even noticing any neck/back pain and reduced my PT sessions to monthly. But if I travel and sleep in a flat bed, my neck/back pain would come back immediately. I told my PT about this and they said it makes sense as raising the head reduces the gravity forces on the upper parts of body. I don't understand why no PT/OT/MT ever mentioned this to me as I suffered forever with horrendous neck/back pain!

Acknowledging that our bodies are all different and the causes of our neck/back pain are different, it doesn't cost much at all if you wanna give this tip a try. I didn't get any fancy adjustable bed frame or mattress, just simple bed raisers for less than $15.

I have finally got my HEDS diagnosis today. The Rheumatologist also diagnosed me with fibromyalgia, which I was not expecting. I finally feel validated and believed. Unfortunately I had to go private but have been referred back to my NHS doctor for further physio and management. I felt like crying when they said what I've suspected for years. I'm still processing it all but feel so relieved.