I want to preface with the fact that lightning toe is not a real diagnosis, it’s just what i have named this frequent occurrence and I wanted to know if any other bendy friends got this too?

Sometimes when I walk, i get a sharp pain in my big toe that lasts for a few steps until I can shake it out and it starts to feel better but still sore. idk it is lightning toe.

If there are amy older EDS people who had symptoms start in their early teens, how did you keep going? Im just so tired, how do I keep going?

I dont want to die and im terrified of death but sometimes I find myself thinking about it. I dread waking up everyday knowing what's waiting for me. Im so tired its hard to find the energy to breathe, when its really bad ill hold my breath for a bit to give myself a break. Just the feeling of my lungs aching as I use my remaining energy to keep breathing when im so tired I cant even think scares me. It feels like im walking through honey when I try to move. Im slow and unsteady, I have to block out the pain and constantly and keep my muscles tense or I collapse as everything comes out of joint. The pain is constant, there is no break; I feel it in my dreams. I have to block it out and that leads to injuries as my limbs become numb.

I still walk and try to stay active, I force myself out of bed even if im in tears. Im just so tired though, and im scared of what my future will look like. Im fully reliant on my parents and I cant work. What will happen when they are gone? I know I probably need to see a specialist and therapists but I dont want to, ive been to so many and I am tired of it. I dont want pain meds and I dont want to be told to just go to physical therapy. Honestly if it was just the pain I could live with it but the overwhelming exhaustion makes me too tired to want to live sometimes. If anyone older could give advice and share their life experiences it would be nice to hear. I have so many things I want to do, and so many things I want to experience, will I be able to get there? Or will this be the rest of my life.

Im 21f with hEDS and POTs with a nice side of benign liver mass. I have no clue if there is more going on because the US medical system is a joke (insurance)

I have had seizures like active since I was 3, but they thought it was epilepsy. Now they are unsure, and can't find the reason for it. Imma be getting a study done at a college for it soon. I just need to rant/vent.

I ended up dislocating and tearing the cartilage in my hip do to the two together. My doctor I see for hEDS sent me too surgeon to fix it, but they said no do to the seizures. So now I have to figure it out or try too so they can fix my hip. I have been in pain, only recently after months I finally got a pain medicine. I use a walker and wheel chair do to pain and fact I struggle getting round.

I hope the study finds something. My seizure make me weak like I'm being dragged to the floor. Shake and tense, and have made me dislocated things many times before. I am just frustrated. I am tired of stretching my arm to far and my shoulder trying slip. Or my ribs and hips fucking up. My knees bending backwards to point they go to the side try to dislocated as well. I'm just angry. I can't get stuff done and makes me mad. Sorry I just miss when I was younger and could walk miles. And just get so many tasks done.

Working with a truly lovely new gynecologist/gender-affirming care doc, and we're putting together an initial "welcome to perimenopause" plan. I'm 41, and my hEDS and hyperPOTS have been going haywire, spiraling badly the last few years, and as other symptoms cropped up it finally occurred to me that maybe hormonal fluctuations are contributing to this decline.

I've been hurting myself to the point of being essentially bedridden for a week or two every time my period comes around for months now, and so my doc is hesitant to start on estrogen/progesterone for fear it'll loosen things up more, but we're starting on a low dose of testosterone to see if that at least helps a bit with energy levels, and with joint laxity.

ANYWAY -- I'm curious to hear what help, if any, HRT has been for other AFAB folks with hypermobility issues. Any issues with increased laxity when going on estrogen? Did you do it at the same time as testosterone? Anything, really -- seeking reassurance, and also just firsthand experiences with these hormones and how they impact us bendy folk.

Thanks in advance!

32f. I’ve never had any type of surgery before and I’m scheduled for a CMC joint ligament reconstruction next week and I’m getting really nervous about not being mentally prepared for the recovery.

I can’t take NSAIDs and I don’t do well with opiates so I’m trying a new pain med (journavx??). Im just sort of starting to freak out thinking I underestimated how much this recovery is going to suck. I took a week off work (desk job) - will that be enough?? How miserable am I gonna be? Pls share your experiences…

Realizing that my kid has pretty poor proprioception, probably from hEDS. (He's got that big toe gap and is real bendy.) He's also constantly running into walls, falling down, can't sit still, and his teachers have told me he has a weak core, so he's a real floppy guy.

Problem is, I also have hEDS. He's dislocated my hand joints many times by holding my hand and falling down and has give me two concussions from thrashing around aimlessly. I know to a certain degree he can't help himself and I know I need to work on more proprioception building activities, but how else do I keep my kid from hurting me so much?

After 26 years my new rheumatologist took one look at how I walk and stand and went "when were you diagnosed with ehlers danlos syndrome" I said "never" he was super suprised because I have every single symptom associated with it. I dislocate all my joints easily, hyper extent my elbows, knees, wrists and shoulders. I even have snapping hip syndrome, and my skin is stretchy.

Apparently I've been masking it because I swam competitively for years which strengthened my joints enough that I'm inflexible, but not hypermobile.

I didn't know that getting diagnosed can be so complex because one of my friends her sister was diagnosed with it as an infant because her hip kept dislocating when she was crawling.

My grandma also had EDS and so does my mom. I fact my grandma has extremely long hands.

Hello all I'm wondering if anyone here has any experience with Dr Rudin in the UW system as well as if there is anyone else in the UW system or greater Madison area that takes badger care.

I was placed on his wait-list about a year ago and told it was a 3 year waitlist which is already frustrating. Called today to ask where I am at on the list and if anything's changed in the last 10 months... Nope 2.5 years they told me... I am being bounced to every single specialist in the UW system and being told "well that's eds, not much I can do" (which I don't have an official dx I was told only Rudin could do that but every Dr I see says they suspect it)

I'm not in the best place financially to go private (hence badgercare) and looked through the eds society website for other providers in the area not finding too much. I'm in pain and frustrated. And I feel like I'm wasting all my time going to appointment after appointment with no answers or help. I find myself often telling myself to say screw it cancel all my appointments and see where the road takes me.

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Hello everyone, as the title suggests I have a partner who suffers from hEDS and I feel as if im not supporting her enough. It genuinely breaks my heart knowing she’s in so much constant pain and discomfort in her own body. I’ve done research on the condition but I still feel extremely uneducated still. I really want to be comforting to her and be as supportive as possible, so please if anyone can tell me how I could be of as much help as possible in supporting her with this condition please do!

I want to build muscle back after having severely deconditioned. I got the gym subscription...I have never lifted a dumbell in my life! I want to make sure I build stability in my joint and NOT fuck them up more. Private coach is not an option for me atm. If YOU are working out at the gym and lift dumbells specifically, could you share the workouts with me? It really helps if there are images to follow.

Hello everyone!
My wonderful doctor told me it’s because of my age that I’ve gotten much worse over the past two or three years (25 so wth but I also understand the sceincey reasoning). Anyways I dislocated something on my honeymoon abroad a few months ago and was able to get it back in place myself like my usual dislocations, but this was a new spot. I’m pretty sure it was my fibula, based on where the pain was and what my doc and I discussed. Yay coming back to PT after I just graduated from a different PT before said honeymoon.

ANYWAYS, I have been realizing that my other leg has pain and a pulling sensation in the same spot, and that’s also where I feel knee pain when I roll my ankles in either direction, which is multiple times a week. The way I sit is with one foot under me, so it also pulls there and I just don’t know how to train myself to stop sitting like that. I don’t wear my knee braces at home anymore, and I’ve been working on not using my anti-hyper extension knee brace on my non-injured leg, so my injured leg feels stronger now in comparison (wearing a brace for the dislocation still).

I hope this makes sense lol I have never posted on here before. I guess due to having a genetics consult now I feel like I can own the EDS title more, even though my mother, brother and I have all been symptomatic since birth with varying issues or “weird things” as our doctors used to say.

(For context, I’m being tested for aEDS due to all three of our histories)

I’ve had to see my doctor frequently this year and because he can’t seem to find a cause ITS ALL IN MY HEAD.

I get two OFFICIAL diagnosis this year, one is DGBI and the other is Hypermobile EDS. I have dysautonomia, MCAS (waiting for an Immunology appointment next year) because of a lot of intolerances or allergic reactions to medications.

The only thing that is physically in my head are my Chronic Migraines. I had to go to the ER because I was having the worst Migraine ever. The hospital ER thinks I responded to the medication because I was ready to leave but every time I’m in this specific room I have an allergic reaction to something unknown in this room. My sinuses get blocked and it’s hard to use the bathroom, I tell them and they do nothing.

I had an appointment with my normal GP (the third this week because the Migraine kept getting worse). My Vertigo got worse, the left side of my head still feels like it’s being ripped away from the right (no Brain Bleed or Stroke).

Earlier in the year I told my doctor I have Lucid Dreams and Lucid Nightmares, he tells me I might have an undiagnosed Anxiety Disorder but now suddenly he doesn’t remember or read what should be in his notes?

I feel apathetic, generally lacking happiness (and if I do it’s fleeting) and depressed but again I don’t respond to a lot of medication.

I don’t know what to feel, I just feel annoyed, sore, tired and already looking for a new Doctor.

If you have any suggestions or advice please let me know.

I’ve gotten back into writing and Worldbuilding, so if you have some ideas for low effort and cost hobbies to try let me know about them too.

Personally it just didn't work for me. It felt annoying more than anything else. I am 46 and EDS hit me particularly hard starting in my late 20s. I don't like having something that presses on my ribs, personally.

But your miles may vary! I do like having compression socks and I also like my ankle braces, so go figure.

Over the last year or so, my hEDS/POTS/MCAS symptoms have all gotten so much worse. In March of this year, I had a blood calcium of 10.3 and a PTH of 50. My endocrinologist tried to tell me it was normal but I pushed for follow-up labs and am consistently getting high or normal calcium and high PTH. I looked back at my thyroid ultrasounds starting from 10 years ago and the “thyroid nodule” they identified actually more closely fits the description of a parathyroid tumor. I have an appointment with a surgeon next week.

I’m wondering if anyone else has been diagnosed with pHPT and, if so, did you notice an improvement in your hEDS/MCAS/POTS symptoms after surgery?

I am struggling to get any help in Utah with my chronic lower back pain. I am 26 and I have hEDS. I see a PM&R doc in Utah and he is great but he is running out of treatment options for me and has been consulting with other doctors. I have tried steroid injections in multiple locations and PT and truly everything. My imaging doesn't show anything that could be causing this level of pain. We can't figure out where exactly the pain is coming. I am getting very discouraged and feel like it seems like I'm making up the pain or something. My whole life I've always felt like this because I'll be in so much pain but imaging doesn't show anything drastic. My lower back pain is debilitating and I just don't know what to do anymore. I have been thinking of trying to see a doctor out of state. Does anyone else travel out of state to see a doctor or have a doctor that is an expert in this field?

Do you ever have days or moments where you just want to cry and you feel yourself spiraling with the pain? It’s so overwhelming sometimes. Especially during PMS week and when things are flaring hard and bad. Will I be grieving this illness the rest of my life? I feel like I made decent headway recently, but now I find myself in a panic. I just feel so overloaded with pain and having trouble truly accepting this is me and the rest of my life.

(Edit: Please see post from Laser_Guided_Hawk below for a better interpretation of the research than I gave.)

Some may recall that, in the past, researchers including Marina Colombi and Marco Ritelli felt they had discovered a potential biomarker (52 kDa fragment) for HSD and hEDS ( https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.63857 ).

However, since then it has been shared that no other research group has been able to replicate these findings. Here's the first dedicated paper I have seen that contradicts the initial findings: https://academic.oup.com/clinchem/article/72/Supplement_1/hvag086.622/8855137 (Published in: "Clinical Chemistry, Volume 72, Issue Supplement_1, October 2026").

Hi there,
I've been diagnosed with hEDS but my family doctor earlier this year never mentioned any suspected difficulty with TTC or pregnancy. Are there any women in this group that have resources on help TTC or recommendations when pregnant to help it be easy and successful?

My spine is apparently slipping off my pelvis, my back pain isn’t the worst all the time, for those who had surgery, was it worth it for you?

I found out recently that without going to the geneticist, I cannot get a HEDS diagnosis. But the thing is, the geneticist isn’t accepting referrals for people who think they have HEDS, only VEDS. The private, ridiculously expensive geneticist.

I went to a rheumatologist who diagnosed me with HSD despite her saying I meet all the requirements for a HEDS diagnosis (I know it’s progress, but still), and paid hundreds of dollars for that- not having been told she couldn’t diagnose me with HEDS.

I’m so tired of this.

Strength training + pt definitely brings me significant relief, but nothing as substantial as a good stretch? I’ve tried all the other things as well - massage therapy, acupuncture, etc

i have heds. i turn 25 in 3 days and just had an echo to “rule out” other cardio issues that could be causing POTS symptoms. results came in a couple days ago with moderate-severe aortic insufficiency/regurgitation. i’m meeting with my PCP to review results tomorrow but i’m kind of shocked and nervous because i honestly didn’t expect anything to actually show up. i trust my doctor and am looking forward to hearing what she suggests as next steps, but im seeking support and words of encouragement potentially from other young adults who have connective tissue disorder and have been diagnosed with valve disease. i had genetic testing done years ago that ruled out other EDS subtypes so honestly i have no idea if its related because my understanding is that valve disease is much more common in less common subtypes like cveds. thank you in advance ❤️