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

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

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.

I've noticed recently I'm having more trouble letting go of items I'm holding onto, it's like the muscle only starts responding when it's too late and I end up jerking my hand away. Happens with drinks most often, sometimes leading to some spills.

Anyone else notice this too?

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?

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!

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.

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.

Any success? I was prescribed it for adhd but my psychiatrist hopes it'll aide in anxiety as well. I also saw some people saying it helped their pots brain fog?

I posted here bc neurodivergence and chronic ilness have a large overlap and if it had negative side effects that messed with your eds I wanna know.

My neurologist took a look at the results of my upright MRI I got done last Thursday. He said they were Abnormal (capital A included) but in a way he wasn’t used to. He wants me to see a neurosurgeon that specializes in CSI because the scans were wonky. The three options he provided included: a doctor about 1 hour away that doesn’t take insurance, a doctor 4-5 hours away that doesn’t take insurance and a doctor 2 hours away that takes insurance.

I called my mom and told her I might need surgery 2 hours from home. I just started laughing uncontrollably. I guess I hit the point where if I don’t laugh about it, I will curl into a ball and give up.

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I REALLY enjoy going to the sauna and cold-water swimming because it makes me feel relaxed and refreshed. For me, it’s a great way to unwind and feel good both physically and mentally. For those with eds is sauna bathing and cold-water swimming generally safe or are there any specific precautions or restrictions to be aware of? Does anyone else find it especially relaxing and refreshing

I haven't seen a post like this recently, so I was thinking there might be updated suggestions. I have a hard time using my current heating pad there. I'd love to be able to use it while I sit up and work at the computer, or when I lie down.

Anyone on BuSpar? I started almost 2 weeks ago and it’s working great however I am having extreme muscle cramping and ligament pain. I’m worried this is detrimental as I am already so very weak and now this is making it worse. Wondering if it will subside or if I need to lower or increase my dose. Is anyone on something similar that works for them? Thank you.

im 26 and ive suspected hEDS or HSD for years, symptoms have gradually gotten more noticeable as i get older.

providers ive brought it up to say getting diagnosed is not worth it, because they'd just send me to PT (which ive already been in for a couple years). another doctor doesn't see a reason to refer me for testing unless i have an acute injury. or they say they dont know anyone around who is taking new patients.

I'm really lost at what to do next as treatment for my fibromyalgia diagnosis has not helped my pain.

so did getting diagnosed help you improve quality of life? any advice on how to advocate for myself?

does anyone else remember the game manual samuel? where you had to control the characters every move, including breathing and posture. my struggle with heds feels very similar: i have to always be consciously aware of my joins and making sure they arent hyperextended CONSTANTLY. if not, im in bad pain. what do you guys think of this?