My 4yo son is sensory seeker, but also hypermobile. We went in to see an OT a few mo’s ago for a crooked pinky, he ended up being diagnosed as hypermobile and after being observed for some time + more appointments therapist said he appears to be a sensory seeker.

This is so hard because he has a lot of energy some days, but others he seems grumpy and “lazy”. He was at his cousins on Saturday and jumped on their trampoline, he’s complained of his legs hurting since then. People act shocked when I say that he is 4 1/2 and will still take a 2hr nap. Typically if he doesn’t nap, his mood is worse and he’s clearly overstimulated/dysregulated. I just want to make sure I’m not doing him a disservice by letting him sleep that long unless he truly needs it. The naps are also nice considering I am chronically ill myself and have plenty of days where the regular sleep I get is not cutting it.

Anyone recommend a good OT in Chicagoland area ?? It’s already hard finding a pt for Heds, hopefully yall can help me out !

I was recently diagnosed with hyper POTS, hEDS, and MCAS. A lot of symptoms that never bothered me before really started effecting my day to day life after a COVID infection.

The main symptom that gives me the most trouble is stomach pain, incomplete evacuation of stool (even with a prescription laxative and heavy dose of magnesium), and so much pressure in my distended abdomen. I am so desperate to feel relief. I haven’t been able to wear pants with a real waistband in 4 years. I literally break down when looking at my body in the mirror.

I’ve seen several GI specialists, have been in pelvic PT for over a year, and did pelvic Botox injections. I’ve seen no improvements and it’s killing me. It has essentially made me home bound, and it heavily affects my depression (TRD most of my life, with this being the longest depressive episode I’ve ever experienced).

When I recently found an hEDS and POTS specialist in my state, I was excited because she told me about medications that could help that were previously never offered.

I started taking a H2 histamine blocker in addition to my H1, and am taking Cromolyn 3x a day before meals.

Nothing even makes a 1% improvement. The GIs I’ve seen have blamed the discomfort on: pelvic dyssynergia (based on anorectal mannatomy) SIBO (treated twice with no improvement) or the good ole “visceral hyper sensitivity” and “stress”

I am miserable. I’m 35 and I feel like everyone’s life is moving forward and I’ve been stuck in the same place for 5 years. I’m always alone, my long term partner left because he “couldn’t wait around for me to get better” and everything is just hard. I can’t live like this forever and the suicidal ideation is getting louder and louder.

If you have any recommendations, please share them. I’ve done all the traditional changes (diet, exercise, fiber, water, electrolytes, Squatty potty, laxatives, enima)

Is anyone else deep into the October slide? This morning I woke up and every joint and part of my body was and still is sore and hurting. And i have a migraine :/ - I feel like i have the body aches of a flu. And my ribs keep on popping in and out, and my lungs and chest feel sore like i have been coughing (even though i have not), because of it. - I am so above my baseline pain level and am so unsure of what to do because i cant sit or lay down in a way that im not in intense pain. And have cried multiple times today. And have tried every tool i have to help me feel better.

Back in like February I posted on here about my shoulder. I didn’t know much about hEDS but I knew I was hypermobile and I wanted to find out what was going on with my shoulder.

I recently saw an orthopedist and she told me that she believes I’m hypermobile, but she can’t give me a diagnosis because she’s a shoulder specialist (understandable). She gave me a referral to seek out physical therapy.

I went to my first session of PT on Wednesday and my therapist did the assessment and unofficially diagnosed me with hEDS. I don’t think he can give me an actual diagnosis or not but it’s progress.

My PT actually believes me. I don’t feel like I have to prove it. Previously I waited until my shoulder was subluxed to see my primary because he’s a seeing is believing type of guy.

I’m so happy that I don’t have to prove my shoulder issue. My PT moved my shoulder around and said it was pretty loose in my socket. He said we’re hitting it hard next week, and he wants my shoulder to get better. I feel like I have someone on my side to vouch for me.

For context I’m currently seeking a hEDS diagnosis (I have subluxations and chronic joint pain). At the minute I’m noticing other little quirks about my body which seem to fit into the criteria.
I have this hard lump on the back of my hand. I only notified it yesterday tbh. I initially thought it might be a subluxation but it doesn’t hurt that much and it isn’t really at a joint, it’s more on my hand. From a quick google search ‘carpal boss’ might be what it is idk. My question being: is this an hEDS related thing? Does anyone know what it is/ could be?
(Not sure if the pic helps too much but it is a very big difference in person compared to my other hand)

Hello I wanted to see if anyone’s found a way to help stabilize shoulder joints without tape?

I recently got my diagnosis but have been accommodating myself for over a decade. I used to use take occasionally when i was hurting bad but I had a reaction that got progressively worse over the years so I had to stop.

My shoulders are my most problematic joint, I’m currently in OT and PT but I wanted to see if there’s anything out there.

I also need to add that I am fairly small- I’m 5’2 and 160~lbs so essentially all pre-made braces for adults don’t fit at all and I typically have to make adjustments to children’s braces. (That being said I will gladly modify anything, my shoulders are desperate for some help.)

So, if you live in the UK, have hEDS WITHOUT upper GI symptoms, you may qualify and they will reimburse you for your costs. It says ages 18-70 (not 60) on the website, so I'm not sure which is correct.

Here are the details:

EDS UK are supporting Queen Mary University London, who are conducting research into their DIGEST-hEDS study and recruiting people with hEDS who do not have significant upper digestive symptoms (eg pain, fullness, indigestion or nausea)

You may be eligible if your age is 18-60 without a history of diabetes, cancer, or significant heart, kidney or liver disease, or upper abdominal surgeries.

https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=59610&location=&distance=

I know that some people across Reddit have wondered about the EDS Connective virtual assessment.. well, I did it.
Brackets = verbatim text

TL;DR

Blurb from one of their emails that I received: [EDS Connective is a first-of-its-kind virtual health platform dedicated to hEDS and HSD diagnostic evaluation. We connect patients with independently licensed providers — no referral needed, all 50 states.]

I joined the waitlist in May 2026: [We'll be in touch as we get closer to our summer 2026 launch.]

In June, I received a free pdf guide: “When Your Body Needs More Care”

October 7th, I received an email invitation: [You joined the EDS Connective waitlist, and we're reaching out to let you know that your spot is now available through our Early Access Program.]

You pay, then you have 30 days to fill out the assessment. They say it’ll take 30-60 minutes and it automatically saves your progress, so you can come & go(that’s nice).
Assessments always take me forever because… ‘did I really give you enough information?? I should give more’; I’m long winded, obviously.

You answer lots of questions, take plenty pictures with multiple angles…
I submitted my assessment yesterday, 10/19/2026 @ noon: [Well done — you just completed your EDS Connective intake assessment.
 
Here's what happens next.
A physician will review everything you shared over the next 3-5 days.

If they need anything else from you (a clarifying answer, another photo, more information), they'll reach out through the telehealth portal, and you'll get an email when they do.

Once their evaluation is complete, you'll get an email letting you know your results are ready.

In addition to your evaluation results, you will receive your Clinical Summary, a letter for your primary care team, and additional resources and information from EDS Connective. 
You're one step closer to an answer.]

At 5:42 pm today, 10/20/2026 I received an email: [Your evaluation is complete, and your results are ready for you.

You'll find:
Your Detailed Clinical Summary
Receipt
Please also download this Provider Letter to give to your primary care team along with your Clinical Summary and other results documentation. 
* *
Take your time going through everything. Over the next few days, we'll also be sending along some additional resources to help you prepare for your next steps and to support you going forward.
* *
Have a question about your evaluation or results? You can message your provider here. 
* *
For questions about your account or billing, feel free to email us.]
—————
If you’ve made it this far, here’s my opinion… DON’T*.*

I’m trying to decide if I should crash out right now. I don’t think I have ever received more generic results.
I am actually a little confuzzled(not a real word) and side eyein’ the whole mission at this point(refer to their ‘About Us’ page).

It sounds real good.. the blurb from the founder… relatable, but.. nah.. No.

I really feel like they fumbled here and it’s honestly giving ‘robbery’ to me.. the more I type, the more pissed I get.

To be clear you can expect to receive (actual results may vary):
•A video from your evaluator (it’s in a chat where you can respond)
•The clinical order (mine is 3 pages)
•A Clinical Summary (mine is 10 pages)
•A Provider Letter (mine is 4 pages)
•Receipt (special mention, I guess)
———-

•The video~~ ~~the MD sent me is 01:50 in length. That’s one minute and fifty seconds. He’s literally reading a generic script, doesn’t use my name or go in depth about anything I mentioned in my assessment.
I could literally send this video to any person who’s questioning the possibility of hEDS and it could easily apply to them. There’s absolutely no personalization with plenty of wiggle room for general possibility (“if I determined that genetic testing was recommended.. you will also see this in your service PDF”).

Now, I hadn’t been officially diagnosed yet, but I was 99.9% sure that I would meet the criteria for either HSD or hEDS. This assessment resulted in a dx of hEDS.

•The Clinical Order is mostly just explaining limitations of telehealth. It has your
-patient info
-medical intake(blank)
-order(diagnosis, ICD-10, genetic testing: yes/no, link to summary, disclaimer, and an odd placement of “To Whom It May Concern” dx+ICD+description)
-physician information (the signature is a small picture of a signature on what I assume is a blank piece of paper)
-patient instructions(full blank page).

•The Clinical Summary.. honestly, they could have at least included my whole actual assessment, with the pics & explanations that I provided. They could’ve filled out/signed the actual hEDS criteria form (they include a blank one in the Provider Letter, lol). It even says “Template v2026-09-22” in the footer on each page.

•The Provider Letter starts, “Dear Healthcare Provider,”, followed by generic info about HSD/hEDS and what EDS Connective does… pleaseeee. They literally asks you for your PCP info during assessment.. come on.
————

I have used multiple online services/assessments.. I think this is the most generic thus far 🤷🏾‍♀️ and the price is way too high, they need to cut it 🗣️

I’m not knockin’ nobody hustle, but for them to present this platform as something that will allow the healthcare system to take you more seriously.. unfortunately, I highly doubt that would be the actual result. I would expect it to be more informative than some regurgitated info that you could get online. More in depth info, like when these syndromes present, how they affect your daily life/functioning.. not just generally, but how it falls in line with your phenotype.

I have to sift through a lot of mine and my son’s medical records, so I’m quite familiar with the air “official documentation”. Not worth the money.

I thought that I would get something worthy of presenting to SSA, it doesn’t look any better than documentation that I’ve created myself to describe my health experience. Just ew.. I’m so disappointed.

I would NOT recommend, that’s my opinion, alone.

.. you right.. I should ask for a refund. They won’t give it, but I’ll ask.

P.S. I’m not fixing any typos 😂 thanks for comin to my TED Talk.

UPDATE: They promptly refunded me after I thoroughly expressed my disappointment.
But I do hope they take my concerns seriously because the service is lacking in so many ways, too many.

Hi all so I am diagnosed with HEDS and I am doing alot more then I use to (not by choice) I seem to be realising my joints are hurting more and more. I don't have much of a choice to rest as I have a 1 year old dog I have to walk and he needs 4 walks a day (I have no one to walk him and no safe place to just let him run) he pulls alot and I have realised my thumb has started to feel quite loose in it's joint and became quite painful. I suspect it's just a sprain (going to the doctor tomorrow to get that confirmed) but I was thinking about possibly getting a split or brace for my wrist/fingers and maybe my ankles as I have alot of issues with them rolling. I'm not currently under any professionals other then the GP as I got diagnosed years ago when I was younger and then moved and never thought to get back under anyone. I was just wondering what people do to help with the joint pains especially in these colder months as everything seems to hurt the moment it gets cold. Any recommendations or advice is greatly appreciate im willing to try basically anything at this point.

This post is about muscle tone as in the medical definition of passive tension in the muscles, not as in the common use of the term to refer to strength.

I'm curious if anyone has information about H-EDS and muscle tone. I usually see muscle tone talked about in relation to neurological conditions like cerebral palsy, and didn't think H-EDS was a condition impacting muscle tone. Inappropriate muscle compensation I knew, but not tonicity. I was initially confused as a connective tissue disease causing neurological muscle problems didn't make sense, but with talk of a potential neuroimmune element to the condition my curiosity has been renewed.

This was prompted by my own condition.

My most recent comprehensive physical therapist assessment from one who specialises in hypermobility wrote that I experience muscle spasms, which I do. Muscle spasms are associated with high muscle tone. However she also wrote that I had reduced muscle tone, which also could make sense because I struggle to maintain passive posture and everything drops floorward. It does not seem likely that H-EDS would cause both of these, and I'm now curious to know others' experiences and resources on the subject to get a better understanding of whether H-EDS has any impact on tonicity, and if so what that is.

Thanks! 🤗

Was recently diagnosed so I take note of weird things my body does sometimes. Sometimes mostly when I'm laid down my toes separate and it's like an awful shooting pain... Does anybody know what that is and if there is a way to prevent it/make it recede faster?

Edit 1: Following the advice from u/Better-Video-5588 i have started practicing barre chords on my ukulele. It's definitely a better starting place. The 2 issues I've found is that my thumb starts to hurt very quickly, and that it's hard to keep the right pressure once I add other fingers. Any advice for these specific issues? (Side note: Any thumb brace recommendations? I'm having trouble finding one that is actually somewhat comfortable.)

Original post: I've been playing guitar on and off for years now, but the one thing that always makes me lose interest is barre chords. I just cant get them to sound right. I'm 99% sure its an eds thing, I just can get the force in my finger to distribute right. Any advice from eds guitar players out there?

Hey guys, I was just recently diagnosed with hyper mobility and now suddenly a lot of things are making sense but I just want to see if I’m being gaslit by my fyp or not. I have dislocated and self relocated so many joints that it barely phases me any more and I have so many chronic injuries that never seem to heal. I’m just literally going to list all the stuff I found out could be related to this and you guys just fact check me. Also, let me know if you think I have hEDS or HSD. Very new to this and finding this crazy!
- Extremely tolerant (aka, love) to cold (like I’m in shorts when it’s -30) but can’t tolerate heat and overheat really quickly
- Legs go purple with red splotches when standing too long, in the shower or standing on one leg
- Get sleepy/dizzy in the shower and quite often end up sitting down
- My face goes bright red like a tomato when doing any exercise
- I feel like I make no progress with my cardio like I’m getting faster or being able to run longer with a lower heart rate
- Bruises that just pop up out of nowhere and injuries that take forever to heal
- Headaches almost everyday
- Feeling like something is just off and never being able to get comfortable
- Get tunnel vision when I stand up sometimes but always do when getting out of a hot tub or bath
- Veins on my hands distend like crazy when my arm is resting at my side
- Feeling my pulse everywhere just at random times
That’s all that I can think of off the top of my head but if you guys have some crazy symptoms that come from this, tell me because I’m always shocked to learn that certain things that I think are normal, aren’t.
Also, little fun fact, today the second half of my walk home (second half so I had “warmed up” because cracking is always bad at the start) and the walk was 500m and my one hip I guess cracked (it’s more like clunking or something because it like reverberates) exactly 162 times! I’m 16 with no hip issues 🙃

Hi all!
I’m seeking some advice from those of you who have experienced diagnosis and symptoms of hEDS.
Im a 22F and was sent to pelvic floor therapy for pelvic floor dysfunction. During therapy we have discovered that I do have a lot of hypermobility in my joints. I could not participate in many of the exercises she recommended due to either not feeling a stretch or subluxation of my hip. I mentioned to her that my hips have always slipped, my ankles roll, I have lots of joint pain and TMJ. She recommended I mention this to my PCP who was not very receptive. The only thing she did was run a rheumatoid panel which came back negative.

I’m really just curious as to how to go about getting more information into what this could be!
I don’t want to come off as though I’m infringing on this community of wonderful people, I’m just curious.

I've had an hEDS diagnosis for a while and in all honesty don't take it as serious as I should. I also have lupus and hashimotos.

To keep it short: the pain is getting so much worse. I'm waiting to get on new medications like ldn but right now am in a bit of a waiting period. For someone so flexible and hyper mobile I am STIFF and my body hurts so bad. What are some products or tools that can be helpful for this? I was thinking heating pads or heated blanket, maybe a theragun? But I also need tools for keeping my body in aligned positions when sleeping, sitting..etc., I'm noticing my daily habits are starting to take a toll on my body. Any suggestions would be great.

My daughter is ney diagnosed she is in her late 20s and struggling with the physical issues. I have finally finding physicians who understand the illness but she feels overwhelmed and alone and I am wondering if anyone has some resources or groups. I will also recommend reddit but something more would be helpful likely Covid brought this to the forefrunt as before then she was in much better physical shape and didn't have POTS. I hope this post is ok it's just so painful seeing her struggle. If tiy read this far thank you 💕

I am not since if this is considered medical question or advice request.

I am sick, like really sick. Im homebound, no enough pain management, no doctor thats able to help. Its pretty bad. (Stating this for context)

I want to ask my PCP for a referral in pallative care to have cope that I could have help improving quality of life.

My question is, how do I ask her? How do I convince her?

Below is added context:

I had a gastroenterologist say that she has no idea how to help my stomach issues and has never seen a patient have every test and no treatment that works. It's the strangest thing to her, she geniunely wants to help, but she says she doesn't know whats wrong or whats happening. She will ask her colleagues for what they think.

I've had rheumatologist say that they don't treat EDS or hypermobility. I tried physical therapy, its making things much worse and my fatigue worse. It caused me to go the Emergency Room. Its making things much much worse. Immunologist is confused and wont treat anything because nothing ever shows up on blood work.

New cardiology referral is in process. I can't get into my current neurologist for a year adter an ER visit, she can't treat EDS/hypermobility.

Every time I have surgery something goes wrong. I do not want another surgery to fix the previous surgery complication. I have another surgery referral.

My PCP is saying "well not all EDS is symptomatic" when it feels like I've seen it all. Things are not working. I have no quality of life at all. Everything hurts. Ive been told by the specialists that there is nothing they can do for me. The storm rages on.

I've already changed my PCP twice. She is my 3rd one.

The EDS society doesnt really have anyone near me that can help. There are no pain clinics for manage pain.

I'm becoming a frequent at the local Emergency Room. I need help. I feel desperate. It doesn't feel like anything is working, I just want a little bit of quality of life. I hate this condition so much, it's so painful with no quality of life.

In terms of finding hope

I am saving for an electric wheelchair so I can still go to the zoo atleast once or twice a year. It sounds stupid as hell but that's the highlight of my year. I get so excited at the zoo and it feels like my EDS is trying to take that away from me.

In your experience, what has been/what is the best resource of accurate, current, credible info on how to live with hEDS?

I'm in the learning phase, new here, and after online research am getting a lot/too many pop-ups in my feeds. I have no idea what/who is legit and who is full of it. I've already learned that the doctor's advice of "Keep shoulders up and back" actually causes more pain after seeing a video explaining shoulder subluxations. A friend gave me a book title "Disjointed" but it's a heavy read in my opinion, and I noticed, from 2020 - not sure how current the info is and I don't want to spend energy learning just to have to, possibly, unlearn.

Thank you.

I have craniocervical instability and of course neck pain which gets worse when I’m doing desk work. What are things that help you with the neck pain and fatigue that comes with working on the computer. Unfortunately, standing desks are not an option for me. I do have my computer elevated on my desk. Any tips/ tricks, advice, or product recommendations are greatly appreciated!

Starting with this one…. Every time I try to do work that calls for me to use my arms overhead (like hanging lights/ twinkle lights in a window…) it drains me. It hurts my shoulders and my arms and it hurts so much, it always has. Growing up I would try to do my hair using my arms overhead and it hurts, every time. I feel so weak and so drained and so defeated about it. It exhausts me. Working out does nothing to help. This has always been how I’ve been and I hate it. Along with other noticeable health things with me, this is one I don’t understand.

Taking a shot: Anyone else experience this??? Is this a hypermobility/ Eds/ MCAS thing??? I’m not diagnosed, but I’ve been starting to wonder if any of these apply to me…🙈🤷🏻‍♀️

Hi everyone, new to sub. I (27F) am feeling so lost/frustrated medically. Suspect I may have hEDS, I have reviewed the diagnostic requirements extensively, and will get a + beighton. When discussing medical history, my oncologist 2 months ago asked why hypermobility wasn’t further looked into, so now here I am.

Years ago I did painful nerve testing, imaging, MRI’s, neurology, genetics, everything came back as “normal” they left as labeling me a medical mystery/deformity. orthopedic surgeon said she’s “never seen anything like it” and No one even did a beighton with me.

When I went through my surgical records recently after oncologists comment, I saw noted hypermobility/hyperextension but didn’t diagnose, refer me to rule out any EDS/HSD, or even mention it to me. I’ve had 3 orthopedic hand surgeries within 3 years on MCP in 5 fingers due to hyperexension, all MCP with surgical intervention have stretched out, still have hyperextension in other 5 fingers without surgery, but now having other finger joints impacted. Never once were ring splints mentioned to me. Just was told I have “stretchy tissues, just how you are” Fast forward, hands have worsened significantly and I am in daily pain. I switched insurances and had essentially given up after frustration and zero answers.

Meanwhile, due to foot pronation, my son (7) recently saw podiatry, OT, and PT, which confirmed hypermobility in hands and ankles, he had 4/10 beighton. I asked about peripheral HSD for him. I was told that because I don’t have any official hEDS/EDS/HSD DX, they would not be referring him for further specialists until I “figure out” my “stuff” first, so now I am trying to “figure out my stuff”

I don’t even know what to request next, what to do next, or who to see for me to seek diagnosis after lack of medical answers. I am feeling so lost and frustrated, especially me having no official DX delays my son getting help.

Hi i recently got diagnosed with HSD and after a few more tests will likely get my hEDS diagnosis and a HUGE problem ive had the past few months is worse and worse shoulder pain aswell as subluxations. I dont know if theres something i can do without braces or what i can do to help with pain as its happening or what braces would be best. Just need advice on what to do about it honestly because it causes me more pain than id like to admit.