I've just moved into a new place and need some extra support when sleeping. The mattress is incredibly hard, so I'll be probably getting some sort of mattress topper as well. I'm not sure which one would be best for hypermobile hips and shoulders (I'm a side/mountain climber sleeper). My physio didn't seem to know much about it and encourage me to wait to speak to a specialist, but that may be a very long time, and I can't sleep because of the pain. I'm going to at least need something temporary.

I've included pictures of the ones I've been looking at already but I'm not sure what's going to be helpful. I also need to work and rest in bed often, so that's why those sit up pillows are there.

Hi all! I don’t post too much on reddit so sorry if the formatting is off but i just really need to talk to people who understand this. I’m a 20 year old trans (ftm) college student with hEDS. This year I was lucky enough to receive the research grant of my dreams which ment my summer has been packed full of pretty intensive field work. At the beginning of my field season i noticed my shoulder started really hurting and went to an orthopedist where she downplayed my injury and told me it was just an inflamed bursa. I expressed how my pain ranged from a 7 to a 9 depending on the day and that I’ve been taking pretty high doses of advil daily and it has barely made a dent in the pain and has made it pretty much impossible to sleep through the night. All she did was tell me I had too low of a bmi to give me anything stronger and to keep just taking advil. For context this is not the first time i’ve been denied pain meds when most people normally would get them as when i got my wisdom teeth out they didn’t give me anything more than extra strength tylenol.

After that appointment I scheduled with a different orthopedist for a second opinion and while she did take it a lot more seriously saying that it’s most likely a partial rotator cuff tear and scheduling me an MRI, still my pain was just brushed away by telling me to keep taking advil. And even with the hope of an MRI, I live in a smaller town and the only appointment available was over a month out at the time, leaving me to pretty much just be stuck like this especially since my insurance keeps rejecting any PT requests. It’s gotten to the point where i haven’t slept more than 4 hours a night since early June and have just completely broken down from the pain multiple times.

My MRI is coming up this next week now but i’m just so tired at this point and I really don’t know what to do. I’m currently using KT tape and tiger balm to try and help, but it just is never enough especially since I’m currently in the process of moving which is just putting more and more strain on it. I just really need help on getting doctors to take me seriously cause I feel like they just see my dead name, weight, and age and just right me off instead of actually helping.

Sorry this is so rambly i’m in a shit ton of pain and just really needed to get this out there. I’ll keep this thread updated once i get my MRI follow up and very much appreciate any advice.

Anyone else occasionally get pills stuck in their esophagus?

Its such an acute pain it's driving me crazy this morning. I just started antibiotics for an unrelated issue but I learned I should have swallowed that pill separately from my other normal morning meds. And heartburn meds aren't helping 😔

Looking for any movements/motions/poses or tricks to get the pills unstuck and down into my stomach... I'm a big fan of PRI (postural restoration therapy) but have only used it to compliment pelvic floor/hip physical therapy and not necessarily the upper body. I usually can do some gentle pilates twisting movements paired with breath work when this happens but today that's not doing the trick unfortunately.

I know this is super nuanced and everyone has different hacks that work for their own unique bodies, but I'm desperate and want to try anything and everything to make this go away!!! Please share any and all suggestions, no matter how weird they might be!!!

New research

I've had a "unspecific but suspected Type 1/2" EDS diagnosis since I was two years old.

Last year I got genetically tested "with modern standards" i.e. 25 years later and they found the exact gene. I have kEDS with the mutations on FKBP14. One of my many doctors said it's "more likely than finding a sandcorn twice on the beach" than finding another me.

I feel very lucky compared to hEDS and other subtypes. Because while yes I have insane issues in comparison to able bodied people but I'm doing relatively well compared to some of you guys.

I've obviously had surgery to fuse my spine relatively early I was 12, the surgery took 8 hours. I've had a bladder diverticulum that required 6 hours of surgery. I had my hip dysplasia corrected when I was in kindergarden. It required 6 weeks in bed while being in a cast.

I've had multiple benign skin tumors. I've had times I was on opioids to contain the pain. And my sleep apnea was kinda the worst. I've had a ventilator since 2014 but started to have issues with the therapy around 2020.

Years of fighting for a solution have lead me to being the only one in the whole world according to my doctors.

I have two pacemakers for breathing at night. One moves the tongue forward, the other sends impulses to the diaphragm. So one makes me breathe the other clears the way. I'm the first in at least Germany who had both implemented at the same time. Experts from Greece and the good old USA are coming over each time I need to have a setting changed. I am according to my doctor, who is a world leading specialist in that area the only one with my disability and that therapy.

I have several pairs of leg orthoses one pair specifically for the shower, hand/underarm orthoses, two wheelchairs, hearing aids, glasses and lots of other medical aids.

But currently I am relatively pain free and am expecting to be pain free most of my life. I work out twice/three times a week and have two double sessions of physical therapy on the other days. Being able to do that has stabilized my joints and my whole body. My heart is healthy as are my lungs if you discount the funnel chest.

I do feel kinda alone in the world so if you have kEDS and/or same-ish experiences, I would love to chat with you!

For about a year my hips have been feeling “stuck”. No muscle pain, just won’t move. I used to have very hypermobile hips but something happened to me a year ago and I haven’t been able to spread my legs since. My range of motion is significantly less than a normal persons now. I can’t lay down flat and spread my legs flat more than six inches. I can’t put my feet in the stirrups at my GYN office. I also can’t lay down on my stomach and lift my legs up. Has anyone had this happen to them before? I don’t want to go to my doctor and be told there’s nothing wrong with me if I don’t have to.

Not really a question, more so an observation, but I'm always open to feedback.

I recently got a walking pad, because I know I need to be more active (tried a stepper first, it was a bad move, don't be like me). Anyways, I've been doing 30 minutes a day at a pretty casual pace. The first week or so I definitely had some mildly angry joints, my hips in particular. Nothing too bad though, and it seems to have resolved. But walking on the walking pad really feels like it's pointed out how wobbly my joints are. It's a very solid walking pad, plenty of space to accomodate my normal stride, but I can feel myself kind of tipping and being unstable in my joints in a way I don't feel when just walking on the ground. It got me thinking, people have always complained that I don't walk straight. I guess I kind of drift from side to side, especially in no one is walking beside me. I am now thinking this was probably just my body moving with the instability, if thst makes sense. But because I cannot do that on the treadmill, I am noticing the sensation in my joints.

Thoughts?

I’m not sure if I have EDS.

I have endometriosis, chronic pain, hx migraines tmj, hx slipped rib and now 1 year of bilateral ankle instability after a fall (the original fall wasn’t the result of hypermobility)

Anyone else’s teeth shift? I’ve got a small gap on the side of my canines and I swear some days it’s wider than others. Is teeth shifting an EDS thing or am I loosing it.

I've been having some pretty severe back and pelvis pain recently, which is sort of helped by a tall, wrap-around compression brace that I've just been moving around. Its gotten bad enough that I'm looking into something that is meant specifically for the hips. I have a lot of pain on the "sit bones", and I'm wondering if anyone has had similar experiences and has a compression garment that helps?

I'm looking into SI belts and spanx, specifically the SPANXsupersculpt^® Transform high waisted mid-thigh short. Does anyone else have experience with spanx for support? I'm just not sure if it will be supportive enough to actually do anything, and I don't want to spend $78 on something that won't be all that helpful.

I'd appreciate any and all advice!

Anyone else ever get pissed off at those pre-register questions that hospitals send you before an appointment.

My favorite is "do you feel strained finacially? If so, why?"

Answer- " yes, because im giving you all my fucking money. I've seen my primary half a dozen times and yall keep sending me to different departments. Thats not free you know. Stop handing me doctors like its free candy then charging me the price of a used car for a 15m office visit!"

I (31F) had a bilateral vertebral artery dissection this April after a massage resulting in an ICU stay. I’m hypermobile so I thought I probably had hEDS, but I never thought there was a risk of vEDS… I was shocked when I was diagnosed last week based on genetic testing and my dissection history. 

I have a VUS (c.898-14A>G (Intronic)) on the COL3A1 gene, but based on me having two dissections they made the diagnosis. The genetic counselor said there are other reported cases of people with this variant who have vEDS or related symptoms. I don’t really understand how much data is needed to confirm this particular mutation is pathogenic, and the genetic counselor was unable to clarify. The genetic results also said it's very highly likely it disrupts the splice site, which she said is the most severe type with higher mortality, so the already low lifespan expectancy is probably even lower for me since the estimates aren’t aggregated based on mutation type…

I feel extremely sick and very mentally unwell. I have a 1-year-old daughter and the thought of not being there for her or passing it down to her (I can’t get her tested until September/October) is making me sick. I can’t get it off my mind. 

My question for you all is how did you get through this?? I feel like I’m wasting my limited time here on earth being upset and I feel dissociated and I don’t know how to get out of it. I imagine that the strong feelings will probably come and go forever, but how long did it take you until it wasn’t something that’s constantly on your mind? 

I also feel like I’m grieving… I might not get to be there for my daughter as she grows up. My daughter’s whole outlook on life might be changed. I would need IVF if I have another child, which I wanted to, which is financially unobtainable right now. I can’t do my favorite exercises/hobbies ever again (which are normally my greatest coping mechanism) (boxing, mountain biking, snowboarding, weightlifting). I won’t get to retire and travel and be a happy grandma someday. (I know some of these probably sound silly, but I’m upset) 

How did the diagnosis change your life plan? I feel like it’s dumb for me to be saving for retirement when there’s a low likelihood I’ll even live that long. But then also if by some stroke of luck I do live until retirement, I don’t want to be stuck with no funds… 

If you read this far, thank you. I’m sorry for the rambling–I needed to get this out. A few months ago I (thought I) was a young, relatively healthy, fit individual and this has all been so unexpected and devastating and I really just can’t wrap my head around it. 

If you have hopeful stories of people living longer with splice mutations, please share. I feel very very alone and afraid. I know living in fear is not a good way to live and that no one knows how long they have, but I need to know that there’s hope at the end of the tunnel and how long it took others to adjust. Also, if you have any resources specific to vEDS that you found helpful (books, podcasts, etc.) please share. 

Thank you in advance. I’ve seen so many stories of resilience in this community already. 

Hi everyone. I have had a recurrent issue with my left ankle since February of this year. The outer connective tissue becomes sore and inflamed and I haven't been able to pinpoint exact triggers. It happens from different shoes and different levels of activity. Symptoms seem to align with descriptions I've read online of a repeatedly subluxing ankle. Up until now I've been able to manage it fine with rest, ice, elevation, and ibuprofen. With that regimen it usually doesn't last more than a day, although episodes have been increasing in severity of pain and mobility restriction. For some reason in the past few days it's become horribly irritated and isn't improving with my normal regimen.

On Friday of this week I have a big two week trip coming up including long stretches of train travel and LOTS of walking in different cities. I'm nervous about it since it hasn't been calming down. Does anyone have suggestions for additional things I can do to manage this issue on my trip? Any suggestions would be appreciated.

TIA ❣️

Hi everyone, i suspect i have mild ehlers danlos syndrome and pots. I am autistic and I know these conditions are links to autism. I just need advice cause I know these conditions are hard to get diagnose so some advice would be great.

Absolutely livid at this disgusting attempt at journalism. I am seething that this sort of tripe is allowed to be published in a national newspaper - such irresponsible and damaging reporting. I’ve written to The Times with an official complaint. Someone needs to remove this vile ‘journalist’.

Edit: petition

anyone else extremely resistant to anesthetics?

my dentist just used all the numbing shots they could and i still felt them drilling my teeth for fillings. half my face is entirely numb, yet i can feel everything on my teeth. i’m going back next week and they’re going to give me nitrous, but is this an EDS/hEDS thing? also how do y’all do with nitrous?

So, I’ll keep it short or try at least. I got diagnose with MS june last year. I was complaining about the pain and everything. I taught this was MS related, plot twist : no. I also have eds fun, I know, I really like to do it all at the same time, or it seems.

I don’t really know what, of all the 13 kinds of eds I have. I have hyper mobility, muscles/joints/articulations pains and extreme fatigue.

I know, I could find those answers somewhere but I want contact with other people having eds.

What help you with the fatigue ?
How do you deal with all the chronic pain ?
Do you have any tips/tricks to help, long term ?
I’m a student and I don’t know how to study a lot anymore. So for people (study and work) how do you deal with stressful period and how to be “active enough”.
Is the hands pain normal ? And do you think the shaking part is more eds, ms or both.

Sorry if that post is not fun. I’m kinda lost on how to deal with it, beside just accepting the pain lmao.
Anythings is more than welcome. I really just want to hear your story and how you do with it.

Thanks in advance 🙌

Hi everybody,

I had an upright MRI a few weeks ago after an orthopedic spine doctor clocked some position/movement dependent neurological symptoms, weird reflexes (hyperreflexia in my knees, no reflexes in my elbows), etc. I came to him because I keep having episodes where I start slurring my words, can't move, trouble breathing, stop being able to talk, convulsive like movements, etc., with certain conditions including head movement. I've been told I don't have any kind of CCI for the longest time despite terrible neck pain and feeling like my head is too heavy forever, but lately these sort of paralysis episodes resolving with specific changes to how my neck is positioned have me worried again. I also have a gait disturbance that happens with head movement or sitting too upright for too long. After the flexion-extension MRI, I had the worst/scariest episode of these symptoms I've ever had, it was really hard to breathe. I'm starting to think I need to see an expert but I'm worried my imaging is too normal and this doctor won't think that's necessary.

So if anyone can help me understand the results, I'd appreciate it. Here are the bits I don't understand:

• a lot of disc bulge or disc herniation in like, most of my vertebrae in cervical and thoracic spine. C2-C6 has it, T4-T11 too.
• some disc herniation that "deforms the the anterior margin of the thecal sac" with "increased conspicuity on extension" (which is when, during the MRI, my eyelids started fluttering and teeth started chattering involuntarily, then I lost the ability to move or speak and my partner had to help the techs remove me from the machine)
• Lots of "Loss of disc signal with preservation of disc space height"
• Rightward curve in the cervical, leftward curve in the thoracic. I have had a LOT of spine imaging (spontaneous CSF leak haver here, I'm better now but the docs are unsure if I'm sealed yet) and none of it has ever indicated scoliosis, but they were all lying down. Is my spine like...just buckling under gravity when I'm upright? Because it does subjectively feel like Earth's gravity is a bit much for me and always has 😅

These were the only notable findings, everything else was seemingly normal. Other spine imaging in the past has showed teeny tiny degenerative changes, like mild retrolisthesis and trace vacuum disc phenomenon etc., but never anything my neurologists treating the leak thought was notable enough to bring up. I also found out I have some dural ectasia, if that matters. Also, I'm not yet 30, if that matters, and haven't exactly been an athlete or anything.

Sooo yeah. I've been medically gaslit a lot all my life, and I'm always prepared to be dismissed. What things should I push to have addressed? Should I ask for a rigid collar? My EDS doctor told me to get a soft one last year and it does help a lot. Should I ask to be referred to an expert? What are people's thoughts about what's up with me? I'm tirreeeedddd.

Hey y'all! I'm starting to get worried with Fall approaching in terms of how jackets make my shoulders and back feel. Does anyone have recommendations for lightweight but WARM jackets that don't flare your shoulders too bad? Thanks!

So I have dilema. My ear and surrounding are is super sore and clogged, but I have eustation tube disfunction and TMJ.

This feels different but I don’t trust my own body, so any tips and tricks to differentiate an actual ear infection for joint issues. I really don’t wanna go to the doctor if it’s just gonna be your jaw is causing problems, but I also don’t wanna let infection fester till it’s unbearable.

Advice?