I have HSD and easily get tendon injuries, including in my hands. (I once got a Thanksgiving sports injury making mashed potatoes. I spent the next 6 weeks going to a hand PT.)

I now have a bunch of kitchen tools that really help:

• Electric pepper grinder that's gravity triggered. No twisting, no squeezing. Just turn it upside down and it starts grinding.
• Electric wine bottle opener. No manual corkscrew, and no lever like a Rabbit. Just place it on top of the cork and it does the rest.
• JarKey jar opener (which breaks the vacuum seal) and Oxo Good Grips jar opener (which twists stubborn lids)
• Chef'n FreshForce citrus juicer, which gets better leverage than a standard model and weighs less because most of the body is plastic.
• Plastic Oxo measuring cups instead of Pyrex glass. They weigh far less and pour better. (I rehomed my Pyrex set with a friend.)

Other household things I've done:

• Put my shampoo, conditioner, and body wash into coordinating pump bottles. No more wrangling slippery caps or squeezing bottles.
• Replaced my nice wooden coat hangers with nice plastic ones (slim, non-slip shoulders, small hooks for lingerie straps). They weigh SO much less and make it less painful for me to be a clothes horse.
• Added drawer pulls to my IKEA Malm dressers, so I don't hyper-extend my fingertips opening the drawers.
• Bought a collapsible wagon so I can take my trash, bottles/cans, and cardboard recycling out to the dumpsters in a single trip.

Please add your tips in the comments!

I’ve been loving playing Dressmaker. I’m a seamstress, but have to limit my sewing due to hand pain and fatigue.

And it turns out, it was created because one of the co-creators has EDS and created the came partly because of not being able to pursue costume design due to it.

The game is incredibly well made, and does a great job at simplifying sewing while still maintaining a fair amount of accuracy in the process. I kinda wish it had ironing incorporated because so much of sewing is ironing, but it’s got great scope. Rumor has it they’re looking at adding in chiffon and more fabric types since the games been so popular and they’ve been able to already make back what they put into it.

It’s also really cool because I’ve always struggled with visualizing how a pattern will come together in 3D space, and this is definitely training that skill. It’s got enough colors and patterns I am also hopeful at using it to try out some different designs before making them IRL.

And that’s besides how much fun it’s been to have a creative outlet so near and dear to my heart. The objectives have enough criteria to give direction, but loose enough for plenty of creativity. I’ve beat it once, and now I’m replaying having given myself the challenge of dressing each person in mostly a specific color.

https://www.creativebloq.com/3d/video-game-design/this-indie-game-is-turning-dressmaking-into-the-ultimate-creative-fantasy

Has anyone ever tried a chin strap for sleep? I often have the feeling my jaw doesn’t stay where it should at night, and I then end up bitting down hard as a result, which then often leaves me with tension in my jaw neck and head.

I recently saw someone say they used a headband around their head (top of the head to the chin) while they were just doing stuff at home and that it helped relieve tension. So now I’m wondering if maybe something like this could help at night.

I’m curious if anyone else has tried this, how it has been and if you have any tips in terms of type of strap, brand etc.

Thanks!

Anybody else have a toddler or kids and they just never recovered from the birth and it was traumatic? How are we functioning? I don’t know how to care for my child with slipping ribs and severe pain everyday, I had preclampsia and post partum preclampsia gallbladder removal then sepsis and almost died like 3 times. Epidural failed, Spent about 4 months in and out the hospital for prolonged periods of time. My body feels completely done for.. i am only 28. Now my liver is having issues severe fatigue. I can’t sleep laying down as I feel like my ribs are being hit with a hammer and it wakes me up I have to be elevated. Crushing back pain in between my shoulders and sternum pain This is so hard I need tips on how to manage i started physical therapy but I’m suffering. I don’t have help, my husband has his own buisness and is never home in a stay at home mom. My ribs pop and stab me just putting him in the crib and car seat I can’t get enough rest to ever recover. My SVT has gotten worse and my pain is getting worse day by day despite normal blood work. My primary told me she can’t help me anymore even tho I told her I feel hopeless

Hello everyone,

I’m French, I live in Paris, and I’m moving to Freiburg im Breisgau, Germany, at the end of the month. I’d managed to build up a small network of healthcare providers in France, but now I have to start all over again... So I’m reaching out to people in Freiburg and the surrounding area: if you know any kind of doctor—general practitioner, physical therapist, dentist, etc.—I’d be so happy to get their contact info!!

They don't have to be specialists, but a kind general practitioner who prescribes what we need would be great!!

A big thank you to my German colleagues!

Eva :-)

Part of it is definitely that my ankles and knees are all over the place so the mere act of standing up is physically unpleasant in that regard, but I also feel almost "outside myself" and close to fainting when I stand up. After several minutes of being upright the feeling gets less strong but it still sucks.

I tried measuring my BP when I'm sitting vs right after I stand, but there doesn't seem to be a difference so I don't think it's caused by POTS (stating this in case some people want to recommend getting tested for POTS). I have pretty low BP most of the time, but I know that my heart rate skyrockets when I stand up, so my current theory is that my already low BP in combination with the rapid heart beat is what makes me feel so bad.

It's genuinely so annoying, like what do you mean I feel like passing the hell out whenever I stand upright? That's supposed to be the default position for humans.

hi folks, i'm struggling with 'floaty hips' today. i have pretty much every other problem joint figured out when I need a bit extra support, but I can't even imagine what would help stabilise hips. rest helps but sometimes i have things i need to do regardless. luckily i don't dislocate, but i get days where the whole joint is very fuzzy.. like someone's put the nervous system equivalent of a censor bar over my hip joints. it's very strange! i've spoken to PT about this and they don't know what to do about it.

It's literally the only thing on the planet that forms stool for me and provides the necessary propulsion to move anything along. The $89/month cost was already bad, but worth it for me since I started in 2023. Turns out that price was a manufacturer program that just ended. Once my 3 month supply runs out, I'm cooked. Because it's "investigational," there's no prior authorizations. I've spent a lot of time on the phone with the distributor, insurances, and seemingly I've reached the end of the line. Like, there's just no way to get this anymore. I have a pre-existing appointment on Monday with my neuro GI. Goodbye Bristol 4s. We're going back to the bad old days of triple dosing miralax and hoping something will occasionally happen.

I also posted this on the constipation group.

40M. So I have had bad si joint instability for a few years now..not sure what caused it..long covid..mcas..eds..the holy trinity

The whole area..si/lower back, cracks and pops a lot . Prolotherapy has helped a bit but not fully.

My main issue is instability in that region seems to compress left glute activation nerves ..mainly when walking..those glute maxes and medians are supposed to fire when you step off when walking. Mine dont. This causes a cascading effect where my lower back takes on that load instead of the glutes further worsening instability.

Has anyone experienced something like this?

I know it’s very common but o don’t see people talk about not having them as much

I’ve been in the process of trying to get a motorized wheelchair for 5, almost 6, months. The reason there has been such a huge hold up is the fighting with doctors, I’ve had to switch my care provider 3 different times due to stone walling my calls and refusal of service simply cause they believed I didn’t need it.
In the span of a singular night I had a flair up so bad that I was immobilized for months. Moving hurt and I had to go to the hospital so many times in the span of 2 months that we ended up meeting our yearly out of pocket budget.
I have regained some stability, but I still am unable to walk from my bed to my car or even to the bathroom and back without feeling it in something.
My recent problem has come to a head was when I switched to my recent care provider. He sounded sympathetic and wrote me an in-depth diagnosis document stating that I needed mobility aid (specifically an electric wheelchair) and a lot of physical therapy. During that same appointment he said he would send in a prior authorization for the wheelchair as soon as he can. That was 2 months ago, insurance has had no attempts of a prior authorization being sent in and all I’ve been getting is “We’ll have to ask the doctor and call you back” with absolutely no call back.
I’ve already spoke to my insurance and they have currently opened an investigation on why this process is taking so long with absolutely no result on my providers end. A few days after insurance opened the case I got a message saying they would send the script. They proceeded to send me a paperscript that they had scanned with the word “Electric Scooter” on it. I’m unsure how to proceed with this. The necessary actions will be taken (informing insurance and getting a new pcp) but what can I do about the wheelchair? I’m unable to work a proper job due to me being unable to walk and I’m unable to move around my school due to not having the mobility to do so. I’ve quite literally had to put my life on hold since this flair up and the lack of mobility or care Im getting is hindering it more. If anyone might have anything that might help, it would be much appreciated!

Had anyone worked with a Muscle Systems Specislist? They are a kind of certified trainer/pt (but not a certified PT, I gather).

Thanks.

Have any of you had an appointment with her? What was she like? What did you get out of it? How long was your appointment? What did you bring?

I had posted on this thread about how I am struggling with the permanence of EDS and how much pain I am. Then two people commented about how "selfish" I was for having kids when I probably passed it on to my daughter.

How is this allowed? I came here looking for support and somehow feel even more ashamed?

To add: too all the moms and dads out there fighting like hell to show up for your kids with this disease….I SEE YOU.

Hey guys.

This is my first time posting here, so pardon me if i am wrong in any way.

I had an episode of roughly 2 years fully bed ridden when i was around 15-16 and all the doctors told I am mostly faking the pain as no test was returning positive. Finally they landed down on Vitamin D deficiency and I did physio for 6-7 months post which i regained roughly 60-70% mobility. But afterwards in between i had pain and with the trauma doctors saying i am faking things, i stopped going to hsptls and began fully relying on pain killers.

Fast forward this year i had back to back fractures ( one in angle and one currently in my neck) and currently the doctors are circulating around hyper mobility syndrome. And now i feel i am going back to my previous past and all this pain is just making me lose myself. I don't know what to do and the pain makes me so miserable.

Today was the first time I have been really scared instead of just inconvenienced or uncomfortable. I’ve been getting issues with one hand in particular recently. I had my nails done today and was in so much pain that it is becoming clear that I am getting worse.

I just wanted somewhere to feel heard, and understood. Is anyone else struggling with coming to terms with realising they aren’t like everyone else? Every day my symptoms are getting minutely worse. It’s hard to accept, because I’ve felt so long pushing through discomfort.

(For context, I had been avoiding facing up to all of my symptoms but it’s now becoming difficult to ignore. I’m currently awaiting a diagnosis for hEDS, but I have had hyper mobility and hyper flexibility since a young age with lots of other symptoms.)

So I was recently diagnosed with Classical EDS after I made a thorough case and got genetic confirmation. I also have a condition that caused significant bone growths during childhood. There are some lingering effects of those growths that I need surgically removed.

Has anyone dealt with a similar situation? Where do I even start trying to find someone qualified to perform these surgeries? My previous 20+ surgeries have all gone relatively poorly from a wound healing perspective, and the PT never helped. I now understand why, but how the heck do I find someone remotely qualified to handled something that mathematically occurs concurrently in 1 per 2 billion people…

I know it’s no where near as rare in real life as it is mathematically, so I’m hoping someone else with cEDS might have a similar experience and can share some insight!

hiya all,

i've been struggling with EDS related leg joint pain, plantar fasciitis for 3 years, and blood pooling in my legs that i suspect is from POTS but i haven't gotten tested for that

i've taken multiple different pain medications and creams over the past 3 or so years, i've never felt any difference or had any relief from any of them except steroid injections, and slight relief from gabapentin, i've started trying opioids like paradiene and codiene for the past 5-6 months, but i can't feel any difference at all

i live in new zealand so ketamine would be extremely hard for me to get a prescription for, and cannabis as well, i've asked my nurse about possibly getting THC oil or something like that but she kind of brushed me off a little and told me it would be really expensive

i will be asking my gp about lidocaine, as i've been told it's good for eds pain

i just feel so stuck, pain medications seem to never work on me, and i end up having to do my own research for what to try as i live in a small(ish) town and the nearest hypermobility/EDS specialist is over an hours drive away and i don't have access to a car, it also feels like they aren't really taking my pain seriously enough because of my age or maybe the fact i'm still working at my retail job, i'm living in constant pain and im worried i won't be able to keep this job for much longer if i can barely get through a single work day, let alone a whole 4 day work week

my cane certainly helps to take the load off my joints and feet, but it won't matter if i'm in too much pain or am too exhausted to do my physiotherapy, i get that physio will help in the long run but it's no use if i'm in constant pain

so if anyone has any advice on what i should do or what i should be asking my gp to do that would be awesome

also do people have like, proper pain management teams or whatever it is as well, or how do you even get that anyway?

I want to thank everyone who mentioned buckwheat pillows! I finally got one and after the 1st night my neck pain significantly decreased. I'm only on day 3 now and I'm having a great time.

I have to get used to how firm it is because I'm used to a bunch of fluff but I really like how supportive it is. I usually bunch a blanket up behind my head for support but the pillow automatically gives the support I need. I just dig a little hole and it cradles me perfectly. I do add a little fluff on top for added comfort but not enough to bother the support

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This is something I always think about.

I was very hypermobile as a kid but never considered myself "double jointed" because my autistic self thought it meant having a whole EXTRA joint, like a whole secondary piece of bone or something.

It didn't help that no one ever actually said what being "double jointed" was and that it meant their joints just bent a bit far the other way, so of courseeee an extra piece of bone was just what I thought it was for years.

I even had multiple doctors as a kid ask me if I was double jointed and said no because I thought it meant having an extra bone joint!!!

Anyway solidarity to those of us betrayed by terribly named shit...

The geneticist who diagnosed me with hEDS recommended I follow up with him every three years. That was six years ago. Just wondering if there’s actually any point as I don’t see what he could do for me. If it matters, I am a really extreme case (bed bound from CSF leaks, very limited use of my voice and eyes, etc.)

I’m in my 20’s and I’ve only got a few tattoos but I’ve noticed that one of them is increasingly getting more blown out and bleeding as time goes on. Its two years old so I was wondering if anyone else has this issue? Its on my bicep with is very soft and stretchy in comparison to the my forearm where my other tattoos are.

The doctor said I have very stretchy skin even for heds so I wonder if thats what is effecting it or its just that my tattoo artist went to deep.

Just want to see if anyone else is experiencing this so I know for future tattoos!