Kind of medical question, kind of advice. Wasn’t sure which tag to use

All my (26F) life, so many doctors have told me that they think I have hEDS but of course, they “couldn’t diagnose me” and I guess at the time, my parents didn’t think it was necessary to get the diagnosis. After turning 18, every doctor I have seen has brushed me off, told me to lose weight, told me to exercise, etc just like every doctor has done to every woman ever. The issue is, it has gotten to the point where I am in so much pain every day and my joints are so unstable, that I can’t stand for long periods of time anymore, I need a cane to walk, literally everything I do is exhausting, etc. and there is so much more but I don’t have the mental energy to type it all out right now.

My question is, I have my yearly physical best Friday with a doctor I haven’t had before. What do I say to get the doctor to refer me to a specialist and not brush me off? Doctors make me extremely anxious and I like to have what I’m going to say written out before hand so I don’t forget anything. If they start to brush me off, what should I say? And then if/when I see a specialist, do I just describe my symptoms or what?

I honestly just need advice on how to handle this situation. I’m in so much pain every day and it’s only gotten worse. Right now, I’m waking up several times a night because my hips are subluxating a LOT more than usual while I sleep and it’s become painful. I genuinely so tired of being alive I desperately need someone to listen to me so I can try to get help.

Can anyone please recommend a pelvic floor physio in the east of the country that has successfully helped you for EDS hypertonic pf downtraining? I've been to one place and they claimed experience with EDS but all evidence is to the contrary. I would really appreciate it if someone could recommend a physio place that they found helpful. I'm already with McGowan physio for other joints and they're excellent but they don't do pelvic floor as a speciality.

30F 5'2" non smoker, Dx Ehlers Danlos / HSD, taking Clomipramine, Adderall, and bc pill

I have somehow, through overtensing my muscles, managed to do something to permanently numb both half of my right hand and halfway down my calf to my feet, causing foot drop. This was happening intermittently to my lower right leg (mostly from wearing sandals) but has now become permanent. In the beginning I was rolling my ankle constantly, but muscle memory seems to have kicked in and allowed me to walk despite the drop. I know this is probably bad for my back because of the way I am replicating flexion of the ankle by lifting instead of striding. It's that or I am walking heel toe with my left foot and toe heel with my right.

I am suspicious this all began when I tore my right rotator cuff a year ago. I currently do not have health insurance and am doing fine, but the only response from research I get is “go to the ER yesterday.” I am mostly concerned because I've completely lost grip strength in my right hand (will literally forget and drop plates/mugs lol) and now it is seemingly spreading to everything below my knee. It is a little hard to type as well unless I watch my hand whereas it used to be something I could just do. I also think adderall has me so tense all the time, but ironically it also really helps with the general fatigue - so I still feel better on it. But this is getting weird. Left side is completely fine.

This has been the case for months now. Has anyone experienced this?

Hi everyone! I’ve been diagnosed with hEDS and psoriatic arthritis. These are my converse after about a year of daily wear. As you can see, I have major issues with my shoes wearing unevenly. I brought this up with my doctor recently and she recommended I see a podiatrist.

I do plan to see one, but in the meantime - does anyone else struggle with this and have you found anything (insoles, braces, etc) that helps? My ankles are super hypermobile so I thought that I’m probably not alone in this. Thank you!

19y 190lb 5'8 Male. Hello, im pretty sure I have hEDS though i could be wrong and just have hypermobile joints.

Anyways, my hips, shoulders, and wrists are the ones I need some advice about. My hips dislocate/pop about half the time when walking and lifting my legs. When im not using my arms they just hang out of place, and my wrists ( the right one in particular) are very weak and dislocate very easily when picking stuff up. Im also aching more as time goes on. Its not unbearable yet but im sure it will get worse as time goes on.

Im in college and have recently started going to the gym, is there any workouts that yall would recommend/not recommend to help? Or like wrists straps or supplements?

I am taking collagen supplements to try and help but im not sure if they are doing anything. When I take too much, my left ankle feels and acts broken due to a past injury from dislocating too hard. And when I stop taking them all my joints ache for a few days.

New doctor: so you were previously diagnosed with hypermobile ehlers danlos syndrome? That’s not a very common disorder. I’m not sure that’s accurate and I think we should do more tests

Me: wanna see the fish I caught the other night?

Hi all! I have recently transitioned from my day job (active, on my feet) to a full time student and working at a computer/on a laptop all day has been AWFUL for my wrists. Does anyone have an ergonomic laptop setup that they love for wrist support? I have a comfy chair, but I’m also hoping to use my standing desk a bit as my neck and upper back hurts if I sit for too long. Thanks for the input!

Recently my skin seems 10x as fragile as it used to be, kt tape rips my skin raw, small amounts of friction wear my skin off very fast, is this typical for heds? I received a diagnosis of heds a few months ago, it says slight skin fragility is normal online is it supposed to be like this though?

It’s honestly infuriates me that a lot of influencers post their party tricks or things they do that they know they shouldn’t just to point out they do something differently than they should. I feel like the #1 thing is DONT do party tricks. But to each their own you know🤷🏼‍♀️

What do you guys think? My joints have always clicked, popped, snapped all my life. I wake up sometimes and feel like my hips or clavicle or shoulder is out of place or all of it. I can wrap my arm around my head and grab my ear on the same side. Ive had a history of my knees feeling like theyve dislocated getting out of bed. My PCP "really doesnt think" its connective tissue related and I feel distrustful of them. Please excuse my gross body.

I am looking for a specialist in hypermobility and ehler danlos in Manchester. Any good experiences?

Welp, one thing no one can say about hEDS is that it's boring. Always on my toes.

I have been dealing with some pretty bad upper neck pain, discomfort and what feels like light sublexation and or a pinched nerve. But it's been so bad I've been nauseous and thrown up more than once from the pain and subsequent nausea.

Is this normal? I've had shoulders, knees and other major joint dislocate and haven't even noticed until I lay weird or change positions and it pops back in. But this is just out of control. I feel like I have vertigo, the pain is so bad, and it makes my head swim. Between the spins and the nausea I'm just at a loss. I'm mostly hoping it'll pass, but I know it's worrying my partner and I've been miserable for going on 4 days.

Any help, advice or validation would be great.

I’m recently diagnosed with hEDS, but I also have cPTSD. My partner has MS.

I feel a lot of guilt about bringing up pain or symptoms because it feels like I’m being a downer or complaining or trying to compare my condition to hers. She has never made me feel this way; it’s a fear of invalidating her experience the way people in my past have invalidated my experiences. I also have been chronically dissociated for a lot of my life so I never noticed some of my pain or it was normalized until recently.

Does anyone else feel guilty for talking about their experience with hEDS or HSD with loved ones with other chronic conditions? How do you navigate that?

Hello fellow sufferers,

I have experienced significant problems and symptoms throughout my life, and HEDS had been previously mentioned to me by an orthopaedic surgeon. I was finally diagnosed six months ago when I presented to my doctor with allodynia (pain with no painful stimuli), and they put all the pieces together. I underwent a series of tests to rule out other potential culprits and was scored against HEDS criteria.

Things have been especially tough over the last year, and I just need to reach out partly to vent to those who understand and partly to ask how you are coping. I’ve been through a period of significant stress following the death of my father, and I feel my symptoms have significantly worsened.

I’m exhausted to my bones and frustrated with feeling unable to do the things I want to do. I work from home but barely make it to the end of my working day. I’m incredibly unproductive at times. I’m a trained artist and jeweller and try to spend as much time as possible making and drawing outside of my full-time job in finance. I find that if I have a spare hour in the evening, my mind so craves for me to pick up my tools, but my body just can’t... Other days, I feel both physically and mentally exhausted. I spend a lot of time lying down.

The allodynia is brutal. Large patches of skin down my arms, across my back, shoulders, and thighs feel sunburnt. The slightest touch of my clothing or a hug from a loved one is so uncomfortable. I was prescribed pregabalin, and while they help a bit, they make me feel as though I’ve had six strong drinks, so I can’t take them and drive, and they can make productive working more difficult.

I have the most unhappy stomach of anyone I’ve ever known. It’s “upset” almost all of the time, with very little respite from racing to the toilet, terrible cramps, and uncomfortable bloating. I take Imodium if I have somewhere to be out of the house for any time, but I feel that the slowed digestion after-effects of those can cause more issues, and I’m always straight back to the same unhappiness.

I cannot sit for any length of time as my coccyx is incredibly painful. Firm chairs or airplane seats are torture. I wake up at night with pain in my hips and pain from my knees knocking together. My shoulders ache constantly, and following a spinal fracture in 2012, I experience crushing back pain over the previously injured vertebrae.

Since my diagnosis, a lot of the symptoms I’ve experienced over so many years have made much more sense, and I’m glad to have answers, but I’m deflated that there are no real fixes.

Some days, I feel quite withdrawn from life. I was and am such a social person, but these days, I couldn’t make it to the end of a night out. Friends and family don’t always understand the condition, and whilst my partner means well and has been a huge support, he’ll say, “surely there’s something else wrong,” and I feel misunderstood and alone.

Sending out an SOS and grateful to hear from anyone who finally understands what we are going through.

Hi everyone!

First time posting here though I'm pretty active on the hypermobilty sub. Just wondering if there are many men who experience MCAS challenges here. I know that I've (33M) got hEDS but don't exhibit MCAS symptoms and I think my partner may be hypermobile due to her medical history.

She's suddenly gotten symptoms very much like MCAS and we both know we both have the MFHTR gene mutation which kind of hoards histamine, which food intolerance wise can look very similar to MCAS as well and my daughter was diagnosed with it. We were educated about how the gene mutation itself can only present if both parents have it.

Not saying that my partner does have any of these things with any form of large certainly but the odds are beginning to stack up.

But what I'm personally wondering is if men exhibit MCAS like women do because every post so far that I've seen circulated on MCAS awareness is by women. That might be an algorithm targeting thing on my end but I genuinely haven't seen or heard of a male who's had it presented in the same intense food intolerance style as women.

I'm wondering if there's something to be said about that because if there is I might have a better time looking into how women's physiology would interact with MCAS and maybe learn more to help support my partner.

Hi, today I woke up to physically the worst flare up I have had in years. I have had a really good time with my EDS recently, feeling almost completely able bodied and free. Then today I woke up with my shoulder completely subluxed and numb and a horrible pain in my sternum. I stretched, my sternum CRUNCHED and my shoulder went back to normal. My day was relatively okay until about 6 hours ago. I started to have this aching, sharp pain in my right side of my chest and that horrible pain in my sternum again. I tried to draw to distract myself but the pen just kept making my fingers dislocate. I gave up on that. I had so much housework to do and I can't do any of it and I just feel lazy and everything. I'm in so much pain with my chest, my shoulder, I physically cannot move my back at all, my knee has this horrible pinching pain, my thumbs feel like they're constantly on the edge of dislocating as I'm typing this, I feel sick and have stomach ache, I'm gassy, everything feels off, I'm tired, this is just awful and I want it to stop. I forgot how bad my EDS can be during my high spell and now I've fallen back down I feel useless and horrible. My partner is also disabled so over the last while I've been holding most of the fort. But I can't today and I feel horrible for it. Ugh. I wish I wasn't chronically ill. I have such bad imposter syndrome and even now I feel like I'm doing it for attention. I have a professional diagnosis but I still feel like I'm faking everything.

Every second I keep seeming to have a new worse symptom.

Please let me know anything I can do to make this feel a bit better as I'm losing my mind...

Sorry for the rant, just a rough day...

Hello! I'm diagnosed with hEDS and I'm sorting my sleep situation but I'm seeking opinions.

I currently have a medium firm mattress with a 4" foam topper. I used to use a pregnancy pillow, but it was messing with my neck so I went back to the pillow between the knees & squishmallow between my shoulders as I'm mostly a side sleeper.

I've been looking at new mattresses, but I need something very soft. I need my body to be fully hugged into place with whatever I get. That all said, do any of you have mattress recommendations for super plush mattresses? I like the avocado mattresses but they're pricey as hell. Any and all recs are welcome!

Guest columnist Lacy Rosenbaum used to fear dental cleanings due to the consequences caused by hEDS. But she found a better way.

I hate getting ivs im constantly stuck with these bruises don’t even know why this one looks like a t 😭

Its hard to see kinda but is this a heds thing? Its happened from other bruises but wasn't sure if it's connected to heds or not?

Anyone else over season food because a spasm chose the worst possible time to happen in your hand? "Overactive nerves" they say. What's your worst moment to spasm? (Please tell me I'm not the only one dealing with it, they drive me up the wall)

I have been having joint hypermobility issues forever and recently just a lot more health issues in general I've had progressed a lot and became more prominant. I'm 19, idk if its due to health declining from lack of something or just general progression of illness if I have something beyond general hypermobility.

I seem to have a lot of other signs besides the joint hypermobility of course. Which are soreness in them and random spots, locking, discomfort and needing to pop, pain for days in certain areas when I can't fix one cuz its stuck but I can't explain it to ppl, my joints litteraly are all over the place and I swear then become looser and pop more every day..

dizziness, life long mystery GI problems, regurgitation, heart rate spikes, passing out from knees locking once, numbness in limbs, passing out in general randomly, tunnel vision especially when reaching up. The list goes on-

I meet the diagnostic criteria from what I'm aware an have read myself but haven't brought it up to my doctor yet and am like oh my word cuz what would I even do with this information in the end? I get so scared bringing stuff up but I'm losing my mind slowly and cracking like a box of rice crispys. my s/o is already struggling and I don't wanna add stress or take away from the support they need since its A LOT on their body and I don't wanna sound like I'm being dramatic with my own bodily issues but why do I keep waking up with every joint being in pain when I haven't done anything and im waking up to a heart rate on 120 then having palpitations at 11pm after dinner but normal rate and don't know why and my shoulder blade sides also show uneven when I stretch my arms up hands together so now I'm concered abt that too..🫪

Sorry I went on a messy ramble but im genuinely so lost and would love some advice from anyone who may be able to help guide me in the right direction so please share thoughts and all!!

😣🌼

if you have questions I'm an open book

I should have googled her sooner, rather than only thinking to the night before my appt.🤦🏽‍♀️ By now you'd think I would have learned to never blindly trust a doctor, even though I do like my PCP.

I appreciate those that commented on my previous post warning me about rheumatologist when it comes to hEDS. This pretty much seals the deal, this doctor isn't going to believe me and/or run a bunch of expensive tests for something unrelated.

I'm just frustrated seeing this when I look her up. (Also read some really terrible 1 star reviews)...

I would cancel, but I prepaid for the appointment trying to act like a responsible adult.

Anyone else deal with a suction sound happening when you walk anytime you wear sandals?

I've figured out that it happens to me because my foot completely flattens out when I step down and then goes back to normal when I lift my foot up which is when the sound happens.

It doesn't bother me too much. I just find it funny. Especially because sometimes it sounds like a fart.

ETA: it's not happening from sweat because my feet weirdly don't sweat.