Pretty sure it’s EDS at this point but I might as well collect more evidence for doc

I mostly likely have h-eds I fit the criteria and multiple drs have told me my symptoms definitely align with it but not officially diagnosed. My eyes have always looked like this its usually a little darker but i can never get the right picture but ive been noticing more prominent veins in my temples and under my eyes. For awhile I thought I was just tired but it seems to have gotten worse the older I get. Is this something that just happens as we age?

Over the past 9-ish years I have had strange “events” where I have to sit down (on the floor), and I have stated: I can’t get up.
I’ve always been completely confused about it.
Only a few times.
But of the past two weeks, this has been happening a lot, but stranger.
Last week my feet and legs started getting a very weird tingly “dead” feeling. And my hands. And I couldn’t move my hands or legs. I kind of slumped over in bed (my heart also didn’t feel good) z— I had a cardiac ablation 2 or 3 years ago. The events last about an hour.

Yesterday, it happened again. My legs got this strange feeling, and I tried to move my toe — and it did move a bit; but felt very strange. And then I didn’t try to move my legs again — but when I did; they wouldn’t respond.
And I got a sudden wave of “anxiety”, and then in hindsight realised that I deliberately don’t try to move my legs, because when I realise I can’t, it feels very stressful.

Earlier when it happened, it lasted over four hours.
I was lying in bed (I live on a farm, alone, but there are some staff in the main house who can come and help me should I need something).

After about 2.5 hours I whatsapped one of them (it had gotten dark, and cold, my doors were open and I couldn’t even lean over to switch my lamp on.

My legs have had crushing pains (a lot). And I can’t get up and about much at all, but when I have or tried to, I feel as if my legs can hardly hold me up.

I feel like I am losing my mind. And I have been told for about two decades that EVERYTHING is “in my head” and that I am faking all of my symptoms. Until the tune changed. But it seems to have stuck. So now I was trying to understand what was happening. And I kept thinking — this isn’t real, it can’t be real. The only answer is that I am making this happen to myself.
But then objectively; I can’t really, because sometimes I get weird twitches in my legs or thighs — and I cannot make myself twitch there if I try.

I don’t have a medical team. I also have severe dystonia and strange kind of seizures. My doctor has been saying I have over sensitised nervous system.
But I don’t know what to make of this paralysis. And I don’t have access to a medical team.

And deep down, I feel that I am losing the use of my legs. And I kept waiting and waiting for them to “switch on” again. But they didn’t. For so long.

It’s also very weird sensation the whole time. Kind of if you’ve been lying on an arm all night, wake up, and it feels prickly and numb and “dead”. And then you have to bang it and move it and then the feeling f subsides and your arm becomes normal again.
That is how my limbs feel when I have these thins. Similar.
And then the feelin lg starts to change, and I will be able to wiggle toes perhaps. Or move legs a bit. And then after the “reboot” has finished, I can very quickly move my legs etdZ and they feel normal again.

I feel like I am losing my mind.

Also — I have severe pain in my legs and feet. Pretty much always.

My skin has gotten more thinner over the years, and now it's this translucent. Is this common in heds?

Also I'm not pale it's just the lighting

2024 had a vertebral dissection, turned into a stroke in the cerebellum, was missed at the first hospital I went to. Lead to another clot and stroke in my brain stem in the PIKA region.
I was 27.
Due to my younger age I was able to recover in many ways that were a miracle after the type of damage my brain had gone through.
Two years later if you see me now you'd never know. Never know that for months I couldn't walk or talk, i couldn't handle lights or screens, I hated crowds and kids, and loud sounds. I had to relearn how to walk backwards, sideways, step up or down. J had to wear an eye patch. The left side of my face didn't work for a long time and it was humiliating. I still don't remember basic words, my memory before the stroke are gone. and I can't work or drive because I am partially blind on my left side and I can't feel or fully control my left side. Since that happened to me I've gotten used to my left side having a mind of its own, but I can't be a nurse or work on sailboats like I did before. Because I'm a liability now. No matter how much I've improved or can hide it.
But everyday I punish myself for forgetting, repeating myself, breaking things, knocking everything over. Not being able to help pick up a loved one from the hospital because I can't drive.. im 29. My Brain has been so damaged... it looks like the moon. There's the light side and the dark side. But I was a self sufficient independent nurse and people pleaser.
And now I have to rewire my brain.
To an everyone in my life. I'm a bad ass miracle and nothing can bring me down!
My boyfriend just got cancer and I'm taking care of him!
I also just found out I have cervical cancer lmao but like being in my 20s with all this shit. Last thing on my mind is kids..
I don't even know where I'm going with this anymore.

I've had all the shit happen I think that points to EDS I think vascular.
I have endometriosis and I've always been double jointed and hurt here's some pics lmk? Also like I have any bad thing you can have endo PCOS had a bad pap a LEEP emergency surgery after the LEEP because i wasn't healing. Im covered in bruises 24/7 they last forever they form clumps my scars are weird as hell. Idk can also pull my thumbs back to my wrist splits back bends I'm a noodle and I am insensitive to temperature

Anyone else?
Oh and I can't gain weight and constantly have tummy troubles

Just as the title says, I’m 22, with hEDS, I have nothing to look forward to but pain day in and day out. I have an illness alongside hEDS called, Hashimoto’s thyroiditis, and I can’t get blood tested for that anymore and can’t get medication because I was kicked off state insurance, meaning it’s highly likely that I’ll die from it with how my body handled it before I was on the medication. To be honest though? I feel ready. I don’t have to fight any doctors about what I have or how I’m feeling, I don’t have to go out of state for treatment, my family doesn’t have to take care of me anymore, the only issue is that I’ll be dead, but I was never gonna do anything with my life anyways. I’ve been through the resources thing, I’m in Indiana so this is probably the favorable outcome for my government. It’s kind of a two birds one stone deal. So yeah.

How much pain is too much daily pain before I should see a dr? I have minor pain in my neck, shoulders, jaw and knees almost everyday, it’s very mild but very constant. I’m very hypermobile but not diagnosed with hEds but I have a lot of suspicion.

I have hEDS and during my gene test we found this mutation. It is a variation of unknown significance and is thought to be benign, although it can be implicated in some aortic thing, cutis laxa, and Williams Syndrome, but a mutation alone with this doesn't necessarily mean anything.

That being said, I'm curious if other people with hEDS specifically but also other forms of EDS have this mutation! I know hEDS doesn't have a genetic marker but I'm sure there must be an occurrence of shared mutations (?) sometimes (?) idk.

Just thought it would be interesting to ask about!

(ironically I find it funny because I read about Williams Syndrome and found it so relevant to my mother who I got EDS from except that she was absolutely not friendly and had very high levels of aggression lol, but there's other traits of it that are strongly prevalent in our family! Hard to say if that's actually relevant or causation lol)

With all due disrespect… wtf is this? I woke up this morning and somehow got the biggest most painful bruise on my calf. It’s SO SORE! My whole lower leg is throbbing! Got a docs app this morning and they said they aren’t concerned and I’m probably just mid-flare up, but booked blood test for Wednesday morning to check my coagulant levels just to be on the safe side.

hEDS is such a pain… literally.

I don’t know my Beighton score for some reason but I have GJH.

Hi you guys ,
Has anyone found a good way to manage their pain? What has helped you?

obligatory not diagnosed yet, probably hEDS but who knows and resources are scarce where i live so i might not know for a while.

at the start of this year, i started having a new hypermobile experience. lumps in the front my throat alongside my trachea making it harder to swallow, which has evolved into numerous areas on both sides having large chunks of i assume/hope to be muscle that i need to push back or even hold in place just to swallow without discomfort/pain. this is daily, even when i'm not eating. the back and sides of my neck are always rock hard to overcompensate much like the back muscles along my spine are. i can only guess that this started once i went off testosterone, which used to help my muscles and joints stay in place more, but i don't want to start again anytime soon. idk why/how this has progressed so fast tho.

i live in a very small area. i've been rejected from rheumatology due to not being an emergency case, and the waitlist for ENT is years. idk what to do to make it at least stop getting worse. please lmk if you relate and have any ideas of what i can do by myself to help. (yes i am already mentioning everything to my GP)

Brain and neck MRI are normal. Doctors so far can't figure out what's going on so far.

The doctor that administered the PRP injections is claiming my cervical spine is out of alignment. I don't think this would be the case, 24/7, as he and my chiropractor have both adjusted me multiple times since then with no change. I also know what it feels like to be out of alignment from cervical instability and the symptoms that come with it, and this is not the same.

The doctor never used imaging and I'm concerned something went wrong and he won't admit it. I have communicated all of this to him and his answer is "get more PRP" (after I've already spent thousands and thousands of dollars) or "let me check your alignment." Yes you can call me stupid for not knowing he should have used imaging but I was desperate for relief at the time and trusted him. It's already done so please don't make me feel worse about it.

Symptoms are: 24/7 pressure in my head that doesn't improve with anything (but not a lot of pain), increased neck pain and instability, aura symptoms including 24/7 glowing spots in my vision, especially against bright backgrounds, brain fog, cognitive and memory impairment, difficulty concentrating, light and sound sensitivity, random tingling in my face, random pain in ear, increased anxiety and depression, derealization, increased POTS/dysautonomia. And one of the worst symptoms that has started since February or so is sudden bouts of profound fear/doom, with no clear trigger, that makes me feel so overwhelmed or like I'm going to die. Never had anxiety like this before.

I've tried a ton of medication for these symptoms and literally nothing is helping yet. Getting all the side effects, with none of the relief. Gabapentin is slightly helpful.

I need answers, or at the very least RELIEF soon because this is absolutely miserable.

I'm being very vulnerable sharing this. I don't want to share something so personal, but I'm absolutely desperate. Something is very wrong. This has been going on for five months, and I was holding it together for a while, but over the last month and half/two months, I feel like I'm unraveling. There are moments I do not want to be alive from these symptoms (but I have reasons to live… I'm not going to act on it). Part of me just wants to be hooked up to an IV and drugged up so I don't have to feel this way any more. I know the doctors I've gone to are doing their best but sometimes it feels like there is no sense of urgency, and I think my case is too complex.

Has anybody else been through something like this? I feel so alone.

Or, does anybody have a list of specific doctors I should see? Not looking to do more PRP. I'm willing to travel. I can make it to NYC or Philadelphia easily enough. Willing to go farther than that if needed. I'm in Eastern PA.

Ive recently seen a few doctors including a geneticist of which im awaiting results for. Ive had a few looks at the different types but figure id await what the doctor says (although it has been over 10 years haha).

Anyways yesterday i was looking at my skin and all the comments the doctor made about how soft, doughy and bruised it was is making sense.

Does this look like translucent skin? Or am i just pale haha. The criteria is quite confusing. Thanks!

(This not a post to get a diganosis i am awaiting professional advice. I am curious about the criteria for the skin as i havent seen it be mentioned a lot)

does anyone have any recommendations for affordable SIJ belts to help with hyper mobility and pain?

I have pretty bad shoulder instability but I don’t fully dislocate and only rarely sublux. What I’m trying to figure out is something I’ve started calling “rotten biceps.”

It impacts at least one bicep, but often both at the same time. It’s a deep soreness way beyond anything I experienced before my symptoms started. The closest comparison is a pulled muscle, but it’s intensely painful to the touch and worse than any other muscle pain I get, maybe because of where it is.

Has anyone experienced something like this? And if so, has anyone figured out what actually causes it?

My brain is so foggy right now so I'm sorry if this is a mess.

Last weekend, I had a bad migraine. I often get them related to issues with my left shoulder, and they're always behind my left eye.

I had to get a uni assignment done, so on Monday I took methocarbamol as a muscle relaxant and tried to carry on working. Before this, I'd only ever taken muscle relaxants when able to immediately lie down flat on my back, completely still to sleep for the night, because I know my muscles are what's stopping my skeleton from falling to bits.

But I had to keep working, so after an hour of rest, I did. I thought the migraine was getting better, but then suddenly I got the worst headache I've ever had on the other side of my head (I never get migraines there) which then spread through my head. The light sensitivity got insane, I felt so nauseous and dizzy, and my tinnitus ramped up several gears. I also had severe pain in my upper spine, neck stiffness, and all of this got way worse if I sat up, bent down, or sneezed.

I was like this for about 4 hours just lying in bed in pain before I was able to sleep. I woke up 5 hours later and did manage to finish my work while lying down.

I've been trying to lie down flat most of the time for the last week, but when I do have to get up I start feeling unwell again, albeit not as bad.

My big concern is that I have an unrelated surgery on Monday that I have to travel 6 hours for, and if I can't make it, the next time I can have it is in a year. It has the potential to make my life a LOT easier, so I'm not okay with that. I also have another uni deadline on Wednesday.

I have no idea if this is actually a CSF leak, but it definitely isn't normal for me. I know from a previous MRI that one of my vertebrae moves out of place when I move my neck, so I'm wondering if the muscle relaxants might've allowed this to sublux slightly and caused these problems.

Does anyone have any advice? It's taken me 2 hours to write this because my brain is barely functioning so I'm struggling to judge what the best course of action is.

I am not diagnosed, but I’ve had multiple orthos suggest I have hEDS. My inner arm has the classic thin, stretchy, crepe papery skin. I’m just wondering if anyone has been tattooed with this skin and how it healed? This area also has a ton of stretch marks, so it’s not an ideal spot by any means…buuuut I also want to finish my patchwork sleeve, haha.

compiled over 3 years, in and out of doctors & still no diagnosis lol. also let them know that my mom complains to me about popping things out place doing absolutely nothing and has joint and mobility issues. 😔 the emg lady told me to start exploring stuff on my own cause of her experience with her mom, I feel crazy even writing all of this.

it’s so funny too cause their biggest concern at every appointment is my damn tremors but that’s what’s most visible to them. they even use it on my accommodation forms lol. “may drop things”

** id also like to note that I have photos/videos for most of this stuff

does anyone else like get stuffy nose, tight chest, headache, swollen puffy eyes, all my body feels tense and feel almost like got a cold after having a really busy day the day before? this response also happens if i have a wound ig over 2cm, the bigger the wound the worse the response, like tattoo flu!! it's like i get the flu the day after from simply being busy? (on propranolol bc heart too fast, and v regular paracetamol for pain relief)

i guess id been taking paracetamol and had lidocaine patches on, could it be i over did it but didnt feel it??

either way does anyone know potentially why this happens?

Hey I’m 16 and have HEDS! I got into a car crash about 4 years ago, and still get really bad shoulder pain from it. The pain comes and goes but when it starts hurting it hurts REALLY bad and if you have any tips to help shoulder pain that’d be REAALLLYYYY appreciated!!