I am finally remembering that healthcare offices want to see not only the reports of past imaging, but the actual primary source scan. I had to drive 2.5 hours away to have a vertical MRI, and my local ortho hasn’t received the images despite me requesting through the online portal. I might actually have to drive back there to pick up a physical disc of imaging since apparently they don’t mail them, snail or electronic!

A tip for all who are all over the place with scans and tests: if you request a copy of images while in office, sometimes they’ll give them right to you like they did for me today after X-rays. Yes, that’s a CD in the photo. Does anyone’s HCP upload imaging to portals yet?

I've been trying to get at least 10k steps in everyday before winter locks me inside for months and I'm maintaining that right now but my body is not happy about it at all. when I am actively walking occasionally I pull something in my abdomen, or sublux a joint especially around my hip and thighs and that's annoying and painful, but when I finally get home and sit it's like I contracted covid or something. It feels like I got hit by a truck. what is the deal with late onset exercise pain? does anyone else have this problem? it's like I float to my medicine cabinet the second I'm through the threshold of my door because my feet are screaming at me. I stretch before I leave and brace/KT tape according to my needs but damn it's bad the first hour when I'm home I'm glued to the couch in pain.

I’m a university student and my backpack’s killing me 😭 what backpacks or alternatives are everyone using?

Anyone else tired of just CONSTANTLY managing health problems. I had a low symptoms day (FINALLY) and so I managed to go out to a gymnastics open gym and first 5 minutes great. And then my wrists wouldn't stop popping out so I had to go and get some tape and taped one and went back to stuff, then my heart rate was super high like almost 200 high, then my other worst was bad so I had to stop what I was doing again, go up to the first desk and ask again, tape it, retape it, and then I could go back. I'm so tired of this. It's been about two hours since I've gotten back and the pain in my wrists and legs is getting unbearable. I would do anything to be a normal college student and be able to just be spontaneous. I'm constantly missing out on things due to being too symptomatic at the moment or because I know it will make me super symptomatic. I want to go out and do things and not be sick and disabled. I'm the only person in my friend group who has any health problems and no one understands me here. I'm rapidly declining and I fucking hate it

I’m being forced due to the cost of living to take any job I can. I know this will hurt, but do y’all have any tips to make it manageable?

I can't seem to find the right pillow for neck support no matter how many I try. What are we all using?

Coop: liked it at first but it goes flat no matter how much fluffing

Latex pillow: sunk to much and can't find one the right height

Helix memory foam: too firm

Purple pillow: loft either too high or two low on different heights

Buckwheat pillow: too firm

I am a petite frame, side sleeper. I have tech neck and weak core, so need something that is supportive, but also comfortable

But at least my dysplasia and arthritis are gone, right?? Its totally fine to be a hypermobile person with no piriformis

Emailed my surgeon today (one year post op) and he told me there wasn't anything to be done except for specialized PT. None of the hypermobility or hip PT specialists near me take my insurance. The wait for anything at the big hospital near me is so, so long.

I'm just so fucking frustrated. I had this surgery to alleviate pain and issues and now I have different pain and issues. I hate this. I'm only 32. I want to walk a mile without my hip exiting the building.

For now, I'm going back to safe and slow heavy weightlifting. Upside: ill have a phenomenal ass 😭

have you ever wondered if maybe the fancy shoes that cost hundreds of smackeroos might help your situation, but been unable to afford them? I am just popping by to say I found a pair of gently used hoka ones on depop for like $8 and am shocked, shocked I say, at how different and better they are. sharing just because doctors always tell me to get better shoes but they can never tell me HOW and i'm sure someone could use this tip. depop or similar is the way

I'm used to the usual when it comes to my EDS. Including the smaller issue of my skin. Spending actual years finding ways to not be covered in excema (including gathering skincare stuff, even soap, that doesn't trigger it) and trying to help skin damage heal better. But it seems like things are getting worse? My skin takes way longer to heal than it used to, scars more easily/worse, and I have had to change a bunch of skin products that used to be fine

I can't seem to find any papers on whether this is a normal thing or not (especially with hEDS). Do any of y'all have the same issue? What helped?

Bought a home built in 1895 that's in shittastic condition. Far more shitty than we expected or was disclosed. There's always something. Like I expected lead paint and shit but holy fuck. We closed on it and had over a month to prep (we move in this weekend) and I even took time off work as a substitute teacher to work on it every day. Dealing with contractors, ripping out bushes that were trying to eat my foundation and let carpenter ants in, buying stuff for the house, cleaning, all that shit. I just want a nice, safe home for my family, especially my daughter.

Then one day I decided that the lead-soaked woodwork in my daughter's room needed to go. Giant, thick-ass boards that were literally embedded in the crumbling plaster walls, covered in so many layers of flaking lead paint they could be used to build a bomb shelter. I'm tiny. I have hEDS. Ever since I pushed myself to finish that, I've been having problems with pain, tingling, numbness, and weakness in my arms. I've had some issues with golfer's elbow/tennis elbow/etc in the past, but nothing like this. It's constant. It's usually shooting down to my middle finger, but also my pinkie and ring fingers, but sometimes it's all of them. Just a horrible, tingling, burning, searing pain.

But it's not like I can stop. Lead paint needs to be painted over or stripped, shit needs to get cleaned, boxes need to be hauled, and at the house at least, I've had nobody to help me. My husband works for a living and we need someone home to watch kiddo when she's not at school. I don't have friends, at least not in the area, and I'm not close enough to any of my family to feel comfortable begging them for help.

Since now I've discovered that my daughter's room is pure poison from top to bottom (lead paint dust got into the carpeting despite my best efforts and under the carpet there's crumbling asbestos tile yay) I have had to speed-prep a different room for her to temporarily sleep in until I can have professionals come to deal with the tile, and I can get the rest of the shit sorted out. That room has lead paint too but at least the floor is vinyl. I just need to cover up the paint with oil-based primer and then some color.

Painting has made the pain even worse. I keep waking up unable to make a fist until I run my hands under warm water. I get burning pains down my arms while I move the paint brush or roller. Nerve glide exercises help a little, but holy fuck this hurts. I'm pushing through it to even type this right now. I can't sleep.

If I was stronger and not so much of a poor, friendless loser this house would be much better. If I had a real job, we could've afforded a better house. We shouldn't have bought it in the first place but we saw it as our last chance to actually get a house because prices just keep going up. Like this house was literally $70k cheaper when the previous owners bought it 5-6 years ago, and they mostly neglected the hell out of it. Everyone for the last few decades neglected this house. After breaking today and a tear-filled conversation with my husband, who didn't realize just how much this has been affecting me physically, he's reached out to his dad and friends for help who seem willing to help with the move this weekend. I don't blame him completely for not picking up on it, as I'm used to hiding my pain like a cat. I'm still worried we're not ready.

I want to fix it up, I enjoy fixing shit. I just wish it didn't hurt so damn much.

Does anyone know what on Earth is going on with this? I was on the phone and was told that they had a meeting last week and they are now not to discuss or do genetic counseling for anybody that is in the EDS catagory for post testing counseling.

Edit: I already had my test done and it came back. They are denying the counseling that comes with.

What are your favorite knee braces to prevent hypertension? I work clinic all day on my feet and I am looking for something I can get on Amazon hopefully but I don’t want to spend money on something that won’t work for me. It needs to be able to fit under my scrub pants. I’m trying to be mindful about hyperextending at work but it’s hard to keep that in mind all the time with a busy schedule.

I successfully finished the Muldowney Protocol with my PT a few months ago. It took about a year to complete it entirely. I “graduated” out of PT but now I would like to get to the gym and I don’t know where to start. In the past I’ve always gone too hard too fast and had continuous setbacks.

I have both EDS and two different forms of dysautonomia and I know that I can’t do anything crazy. Nothing hard so I don’t overcompensate, all low impact, no running, jumping, or overhead work. So, what do I do? Does anyone have a good workout plan?

My soon to be wife has HEDS and I what to know what I can do to help them. I know its an incurable disease but I want to do everything in my power to make their day to day life easier. Any advice is greatly appreciated!

Hi there! Looking to get a rollator for my EDS issues and have run into the issue of EVERYTHING IS SO EXPENSIVE AND NOTHING SHIPS HERE. Would appreciate any help haha

My favourites so far are the Nova Joy bariatric rollators in purple. Purple is a huge preference but I also will just get whatever's not too expensive and good enough quality I reckon!!

My budget is like $300-400 AUD at the moment... not a lot but it's what I'm working with. I'm thinking maybe I can get a pricier one if I have family and friends chip in around Christmas though!

35F. Like many of us, I've been in pain as long as I can remember. My neck and my back have been the primary source of my pain. My SI joint and my cervical spine. I've been to four physical therapists, I've been to chiropractors, I've been to massage therapists, I've MRIs, I've had X-Rays, I've been to see orthos, I've been to see a physiatrist, I've been to see four different neurologists, I've done yoga, I've done pilates, I've tried strength training.

And, of course, the imaging has shown nothing and none of this has helped. I am in fucking agony all day, every day. Ibuprofen and Tylenol haven't worked in years. I'm on LDN and am experiencing small windows of time without pain but it isn't enough. I am extremely sensitive to meds and at this point have no desire to be on anything that would create a dependency. I take my heating pad everywhere with me and my neck warmer too, and it mitigates the problem but it doesn't stop it. I'm not interest in steroid injections. I'm not interested in surgery. My EDS doctor has also very strongly counseled me against it.

The only time I'm not in pain is if I'm walking. I can't always be walking. I have to be in class. I've asked for accommodations and my teachers are supportive of me pacing or being on the floor as much as I need to be, but I also need to be sitting at my desk for certain things and the sitting is killing me. For my practicum two days a week, I have to be seated, and I cannot be pacing or on the floor. By the end of the day I am in so much pain I want to scream and scream and scream and never stop because I am in so much fucking pain. I'm exhausted from being in pain all the time.

I feel like I have no options. All the options fucking suck, or they don't help. I just stopped going to PT again after being in it for four months. As usual, it really didn't do shit. It must be said, the three other PTs actively made me do shit that hurt me. This one had a better understanding of EDS and so didn't hurt me, but also the PT didn't seem to be helping.

It's so frustrating. I want to fucking cry. It's not fair. Chronic pain is not fair. I look around at other people in my life and am amazed that they just live their lives without pain. What the fuck is that like? WHAT IS THAT LIKE? I don't want them to be in pain. I just want me to not be in pain. How much extra bandwidth, energy, positive mental health would I have if I wasn't just in agony all the time? I mean, on a scale from 1 to 10 my usual is about a 6 or 7. After sitting all day it goes up to an 8 or even a fucking 9.

I don't know what to do and I don't know how to keep living in this much pain. It fucking SUCKS.

Does anyone else have miserable misalignment syndrome? It feels so unrecognized that even my new PCP didn’t fully understand what I meant and seemed confused. I have it unilaterally too.

My doctor recommended I get elastic compression braces to support my joints and improve proprioception when I do sports or other activities (to avoid injuries/subluxations). However, the brands I've found in sports/health shops where I live don't do sizes that fit me. I have a petite build and standard smallest sizes I've found in stores are too loose on me to give adequate compression.

So does anyone have recommendations for brands that do elastic compression braces in small sizes (xxs/xs etc), preferably at reasonable prices? I would need them to be shippable to continental Europe. I'm sure someone else has also run into this issue so I thought I'd ask for help.

Thank you so much for any advice, I really appreciate it!

If TXNB is not the hEDS gene, with haploinsufficiency only occurring in less than 5% of hEDS patients, then why is it still hEDS?

Why don’t they reclassify it as something separate?

It’s frustrating that I’m going to have to still tell doctors I have hEDS, which currently has no genetic marker, when I only have one working copy of a TXNB gene. That means there is genetic proof for my symptoms, yet I’m going to be grouped in with people who currently do not, which is going to affect my care. My variant only occurs in 0.00002% of the population. I’m a carrier for ClEDS, one of the most rare forms of EDS.

A lot of my symptoms line up with ClEDS that I don’t see people with hEDS talking about often, like severe neuropathic pain. I feel like TXNB haploinsufficiency for people who have matching symptoms should be classified as something between hEDS and ClEDS.

Update: went back to genetics and they said they need to test me for ClEDS. Anyone with this type can you please weigh in as to what your symptoms look like and experience has been?

I've been through a lengthy complaints procedure with the NHS due to procedural failings within the rheumatology department at my local hospital, which ultimately resulted in a mischaracterisation of my symptoms. The first outcome was to be discharged completely with no additional help or information beyond a verdict of fibromyalgia, deconditioning, and benign hypermobility.

As hypermobility was discussed and part of the focus, the hEDS criteria were run through. During this, my Beighton score was incorrectly recorded, my dental records were ignored, no echocardiogram was performed, and both procedures for unusual skin softness and skin hyperextensibility were done completely incorrectly.

The rheumatologist's method for the skin tests was to lightly place two of her fingers on the outside of my upper arm, then gently brought them together with about as much force as you would to pick up a stray hair.

The outcome of my complaint was a scheduled echocardiogram and an appointment with another rheumatologist for a second opinion.

My Beighton score changed to a higher number, but somehow with different joints making the cut. Then, benign hypermobility was changed to HSD. Otherwise, nothing else was addressed beyond a discussion about what care and advice there would be moving forward.

While I understand that I'm not a medical professional to any degree, it's of my understanding that I do meet the criteria for hEDS. I've gone through the criteria countless times with myself, measuring everything from scratch every time, hoping that I could reach the same conclusion as the rheumatologist did so I could finally just forget about it all. But the result has always been the same.

Fundamentally, I am not particularly precious about which label is given to me, but instead I'm more focused on the data accuracy side of things in regards to the features and symptoms which were not accurately recorded. The side effect of that does also seem to happen to be hEDS. And if for whatever reason it wasn't, at least the features would be marked down correctly in my medical records.

So, back to the title of the post itself. Is there actually any point in pursuing this further? Is getting each of the features properly recorded worth it?

I worry that an incomplete record could make things difficult in the future, if any of the missed features could interact with future medical interventions such as surgery.

Hi all, i was in a relationship that ended about a year ago because she was burnt out from my illnesses and couldn’t handle them anymore. that obviously left me with a lot of issues and apprehension with dating again. i have multiple chronic illnesses that have left me unable to work or go back to school. because i don’t have to save my little energy for work, i will often push myself with activities and then pay the price for it (in other words, people seeing me out and about would have no idea how much pain and fatigue i am in).

Anyway, i started talking to this girl that i really like. I mentioned on the first date that im not working right now because of some health issues but it didn’t get much deeper than that. i guess im looking for advice of how much to tell her and how to explain why i can go and hangout with her for a couple hours but cant have a job. also, i feel self conscious for not having a job, i feel like people look at me like im lazy. when she asks how my day was, idk what to say because more often or not i didnt do anything other than lay in bed.

Sorry if this was all just kind of a brain dump, i appreciate any and all input!

hi all.
I don’t know where to start. issues since childhood, really big ones starting at around 19, made worse by an emergency hernia surgery + never returned to even my normal. diagnosed hEDS AT 30, dx pots at 24, (multiple surgeries for endometriosis (dx 20) + hysterectomy at 31 due to lynch syndrome) and fibromyalgia and CFS/ME AT 21 and stuff. anyway. pain was treated with narcotics (low grade norco) for about 12 years, through 2 states. then the pain doctor who diagnosed me with hEDS, his clinic shut down and I was sent to a spine clinic. they had me do a UA and sign a pain contract immediately, then never prescribed me even my non prescription meds. it’s been over 6 months, they did eventually give me my gabapentin back after asking twice but not the NSAID or norco. i’ve been doing steroid injections everywhere and have had RFA on my occipital nerves. I finally asked today if I could have medication as my quality of life has dropped dramatically. they told me I had to do more PT, more injections, RFA on my lower back and an MRI my insurance won’t pay for. I didn’t mean to but I started tearing up saying I didn’t know how I could do PT when I can barely do anything else. they gave me a “temporary prescription” after agreeing to do all of that plus a UA (which is fine obviously) and then basically told me nothing i’ve been diagnosed with should be causing pain like this and also that they wouldn’t have me sign a contract since it’s temporary but i’ve been in once since april? do I need a new doctor?

I get muscle spasm and my muscles in general get very tight. baclofen does seem to help but I don’t feel like my joints can stabilize well on it so I just kind of lay there. I don’t really trust myself to do much because my joints tend to wiggle around more on it and that hurts after a bit.