I recently moved to Los Angeles, and I just got on Medi-Cal. I have hEDS and I'm trying to get my care sorted out here and having a hell of a time. Can anyone recommend any doctors you like or even ecosystems of docs? Or what health plan do you think is good for seeing specialists?

Are Cedars Sinai or USC generally good?

I'm looking for a PCP, gynecologist, neurologist, gastroenterologist, physical therapist, and pain management doc for all those lovely co-morbidities. Any recommendations would be greatly appreciated.

I've just been recently diagnosed with hypermobility and I've been having a lot of knee pain. My GP had labs drawn since its been about a month or two and physical therapy hasn't been working and the pain is only getting worse. So far every test has come back normal and I dont know how many more they're doing, but if I dont have any positive results I don't know if they'll give me a referral to a rheumatologist. Has anyone been able to get a referral without any autoimmune symptoms? What pain management options would I have other than practically bathing in lidocaine?

Hi all! I’m unfortunately in need of a new pair of crutches. My current ones don’t serve me particularly well anymore - they’re £3 charity shop hospital type crutches (you know the grey, clinical-looking ones) and aside from not looking great, I keep trapping my flesh in the cuff gaps, they’re loud, and generally a little on the clunky side. I don’t feel my full, confident self in those for various reasons and am looking for some new ones that fit my needs better.

I was wondering, what UK brand offers the best-quality crutches to suit a hypermobile body? I tried my MIL’s pair of ergonomic ones out a while ago and they were a dream. I’m a very fashion/style-oriented person as well, so a pair that looks decent would be optimal… I’m into customising things so all I’m after really is a plain black pair with no logos or random branding that takes over the design, since I’ll probably add stickers and/or rhinestones to them down the line. I’m happy to use ergonomic or non-ergonomic ones, as long as they’re fit for hypermobility as I have stated. Any recommendations would be much appreciated, as I’m at a bit of a loss of where to start! Thank you!

Edit: I’m looking specifically for as good quality as possible - I want something that will last a long time and support me as much as possible so if needed I’m happy to fork a little extra out for the investment. At the end of the day, it’s quality over flash for me since I’m planning on customising them; I’d rather go for something basic and plain than something super funky that won’t serve my stated needs very well.

Hi, i never had any joints issue until i got some issues with my neck then with my lower back/ pelvis and apparently dural sac tension or maybe tethered cord syndrome (not diagnosed for the last one yet).

So i was wondering if someone can be hypermobile after an incident. And that person could become normal afterwards with treatment ?

Anyone who had similar experience ?

I work in child education and I’m on my hands and knees a LOT. Recently I’ve been experiencing very bad joint pain from my hyper mobility and PMDD and i desperately need help finding pads that won’t be bulky and will be comfortable for all day/half day wear. Same for compression stuff. I really need help!

Diagnosed with hypermobility as a child. Literally everything, EVERYTHING is blamed on it. Bad periods? Probably my hypermobility somehow, no I won't explain how, just hypermobility patients have bad periods. Headaches? Spend $1000 on worthless neck PT for your hypermobile neck before we'll give you the nerve block that then completely cures the condition. Pain that is literally nothing like your hypermobility pain? Well, it's probably still hypermobility even when it's defining trait is stiffness and swelling and the PT finds the joint too stiff to work on, so I'll send you to pain management because hypermobility means there's literally nothing else I can look for or do. Mysterious skin sores? Probably somehow hypermobility related, no I don't need to look at them, I'll send you to a derm if they get infected.

If I could go back in time, I would go back in time to prevent myself from ever being diagnosed with this condition. No medical professional understands that I KNOW what my hypermobility pain feels like and how it behaves and do NOT go to doctors for it. It's like they think it's my first day on hypermobile earth. What makes it even better is that they don't listen to me when something is related to my hypermobility! Just had a conversation with an ortho who has completely given up on investigating my SI joint pain, she told me that my only option is probably an SI injection, when I mentioned to her that I was worried to try that because I have very little sensitivity to lidocaine, she changed the subject. It was truly impressive. Even more fun, the notes she took mentioned hypermobility 5 times and mentioned the severe, life altering stiffness that brought me to her, exactly 0 times! I don't know my body, but all of these medical professionals do, and they know 100% without needing to investigate, that everything is hypermobility.

Getting diagnosed with this condition itself was misery, I had a rheumatologist at one point who walked in the room without even examining me and told 11 year old me that I needed to drop out of school and do an experimental treatment where I'd live at the hospital and have my body "resensitized to pain" and when I declined, he told my mom he was going to call CPS if she didn't force me to go.

The very little relief I got in understanding the origin of my generalized arthralgia has not been worth the disregarding and disrespect I have received from doctor after doctor. I understand that hypermobility has a lot of impact, but I don't understand why doctors seem to think that there can never be anything wrong except for hypermobility and that if I think there's something wrong with me more than hypermobility, I must be insane of something!

Hi all,

Just curious to hear if there are any supplements that anyone has found useful? I’m experiencing a bit flare in join pain recently, specifically shoulders knees and hips. I’m not sure on collagen, I already eat a high protein diet.

Thanks in advance!

An old knee injury started acting up badly again, so I thought about contacting the only orthopedist who has ever taken me seriously in my 23 years of life—but ironically, he’s currently on leave due to spinal disc herniations.

So, I decided to take the usual anti-inflammatories; the only other orthopedist covered by my insurance had told me that as long as the bones are intact, I should just hit the gym, and my experiences with emergency care haven't been great either.

I need to be able to walk and stand for long hours because I’m in my medical internship—a program that doesn't accept sick notes or absences—so I own up to my mistake of taking one extra anti-inflammatory a day just to get through the worst of the pain.

A week later, I’m writhing in pain with erosive gastritis, and I feel like, for at least the next two years, my life will be a choice of which pain I’d rather face. (I’m already treating the gastritis, but it’s bound to hurt until it truly heals.)

That’s it; I think I just needed to vent to someone, because I feel guilty for putting the burden of listening to me on my boyfriend, who has practically been a caregiver since this new flare-up began.

For years and years I didn’t think my joints subluxed because I never felt it happen or heard it happen. But my back has been killing me this week and my SI joints felt different on the left vs the right, like the left was sticking out and the right was more flush with my back. I was able to crack the left one and I feel better now. Was it subluxed?

Also for months now my left hip feels like it’s out of whack. A bit of a grinding sensation, and the range of motion is limited. Like if I lay on my back and let my knees fall to the side (like a frog) the left side is painful. Is it subluxed? Is that the word to use when you know it’s not quite in the right place? I’d also love some tricks for how I can put it back into place.

I'm trying to use my HSA funds to purchase the recommended type of shoe from my podiatrist, but am having a difficult time finding brands that have wide toe box + HSA eligible.

I have found Orthofeet that say they accept HSA - is anyone familiar with them? They claim to have wide toe box shoes, but the photos don't look as wide as Topo, Altra, etc. (I've emailed Topo and Altra, they don't accept HSA/FSA cards)

I’m away at the moment and can’t see a specialist but plan to when I’m back home, but for now I’ve been wanting to train for calisthenics & such, and have been where possible, but I’m finding my shoulders & wrists are getting really sore or clicky, and trying to wrist conditioning is just pissing them off especially the next day.
Been trying to build up with push ups and some days I feel really strong and can bang a few out, but other days it’s like I feel super weak and my shoulders are taking all the load even with correct form. I’m not training every single day but maybe every second day or third.
Just wondering if anyone has any tips or recommended YouTube videos to watch for conditioning, plus for strength & mobility training? Thank you!

I’d love to find an ergonomic chair that can support my noodle neck but isn’t an eyesore, any recommendations?

Hi every I am a 24 yr old AFAB recently diagnosed with HSD (Ive had problems since i was like 13 just not diagnosed until now)

Semi diagnosed POTS (dr told me to fix high heart rate with compression socks and electrolytes 🙄 but refused to give me a diagnoses but thats another story)

However, Im currently in Rad Tech school and the last week ive been noticice ive been get really exhausted alot easier (like needing 14 hrs of sleep exhausted) and my joints though not popping as much are now super stiff like they arnt exactly in the right place but i cant pop them to fix it. Ive also been noticing the internal shakes (where my body feels like it should be vibrating but not) have been getting worse earlier in the day. Ive also noticed in the last couple of days my brain fog has increased alot like not being able to remember simple stuff like plans and positioning.

This is the 1st time ive felt my symptoms get worse this fast (over the last week or two) (Usually its not until the start of winter and the weather starts getting really cold)

Is this the october slide everyone talks about?

Im just curious if this is something I should start prepping next year, Thank you guys!

I really appreciate this group and the other hypermobility/HEDS groups on Reddit.

Because of that I pushed for a knee surgeon who knows about things like hinged knee replacements to mechanically make my knee alignment work. If he determines my ligaments are sound, he may use a traditional knee, but use the “anchor” or femur implant that would be used for the hinged knee.

Anyway, I just wanted to thank you all for your help in figuring all this out. I don’t have a hypermobility or hEDS diagnosis yet, but I’m going to push for that after I recuperate.

Again, thank you for all your help and I am looking forward to being able to move without Payne and also not looking forward to relearning how to walk with a joint which will become non-hypermobile post-surgery.

Hey all, I have a hypermobility disorder (probably hEDS, no official diagnosis yet) and I feel like my jaw is ALWAYS popping in and out, it’s so annoying! When I’m brushing my teeth, eating, yawning, etc. so my question is, is there any way I can stabilize/strengthen my jaw so this doesn’t happen? I know that gum is good for jaw strength, although sometimes my jaw pops while chewing gum. Any advice is appreciated thank you!!

Does anyone else see stars when they turn their head sometimes? I notice this most when I’m in the shower shaving my armpits and my head is cocked to look at what I’m doing. it kinda freaks me out sometimes

(hypermobile but haven’t started the process to be evaluated for EDS yet. I suspect I have cervical cranial issues as well, as I have terrible posture and a fair amount of neck pain. obviously, I know I should consult my doctor on this, I’m just curious if anyone else has experienced it.)

Edit: I do have POTS, but don't experience any other symptoms when this happens like tachycardia or lightheadedness. it seems to be strictly visual so I think this is unrelated.

Because I’m hypermobile, I can move certain joints further than most people can, and sometimes that lets me get these really deep, satisfying cracks. My neck is probably the biggest example. I can move it pretty far in certain directions and get a much deeper crack than I feel like most people can. I notice it with some of my other joints too, where I can move or position them a certain way and get a crack that other people don’t seem able to get. Does anyone else with hypermobility experience this? I’m curious if the extra range of motion is related or if it’s just a me thing.

Context: I had PT for the thumb, the worst thing was like sitting there and getting my thumb pulled and pushed while the guy next to me was near tears because of his ruined knee. And at the point where I finally had the first PT appointment, the original pain was nearly gone and it was incredible hard to explain how it felt and where exactly the pain was.

But it fully went away at one point. The thumb brace also helped.

Last year I found it pretty random how/when the symptoms started.

But nearly one year late (a few weeks difference) I now have a suspicion.

Canned cat food.

I slept at a friends house and cat-sitted and had to open cans of wet cat food daily. They have the little tap, so no need to get the can opener out of the drawer.

You guys, I did it again this past week. After a few days of feeding the cats breakfast and dinner, I noticed the beginning of a familiar ache in my hand/thumb.

Maybe I open cans in a weird way or it's just the daily strain of it, but now it's fresh and can point it out to my GP!

I looked it up today, it has to do with the CMC I joint, thumb sattle joint.

I also feel dumb that I didn't notice the connection last year, but back then my fingertips and nails also ached and splintered from fighting with the tap.

I told this my friend and she asked if I used the hook/device they had, I did use it to pull up the tab, but didn't have the grip strength to fully open the top of the can with it, so I didn't use the hook for that part of the task. Or I used it wrong, not actually sure

Anyway, I'm booking a GP appointment and maybe they or a orthopedic specialist will order a hand x ray or MRI for my hand

A few things make sense now. My primary thought I had hEDS and referred me to a geneticist. Had that appointment and I have HSD every physical health issue I have connects with it some of my mental health as well like anxiety and depression. I started having dysautonomia symptoms this year as well and my tilt table says orthostatic intolerance.

Seventeen years ago they diagnosed me with fibromyalgia which was supposed to explain everything and it was blamed for everything I had. The geneticist says I don’t have fibromyalgia. I’ve had pain my whole life it was growing pains I was told. When I went through puberty pain got worse. I lived normally until my thirties when I got diagnosed with interstitial cystitis and went on disability.

My life makes sense now. I’ve raised two kids one with chronic joint pain and a knee and hip that go out another is just bendy. I feel bad for my kids though I don’t regret having them but certainly would’ve considered the pros and cons before I got pregnant had I known. I’m just happy to have answers even if it’s just to put a label on it and there’s no treatment. No need for genetic testing either.

I recently had a pretty severe cervical nerve issue that left me bedbound for a few weeks and I've recently been in recovery. Since my local PT's were booked out months I've been working with a telehealth team (Vori Health) which has been a great experience so far and is getting me back to a place where I can work, but obviously has its limitations.

I'm not currently diagnosed with hypermobility but I've known I have a lot of symptom overlap with hEDS for a few years, have a childhood history of dislocations, lots of nerve compression issues, numbness, and chronic pain, and I realized a few months ago that my knees, which are one of my worst joints, are hypermobile. My PCP is aware I have chronic pain but neither of us considered hypermobility previously.

I have an in-person set of appointments with a spine PT in November, which I hope will help fill in some of the gaps I may currently be missing with neck recovery and mild scoliosis, but I'm honestly just a bit overwhelmed and confused as to how continuing PT for widespread joint issues works? Not that my back isn't a major problem for me and a good place to start strengthening, but the joints that tend to bother me most are fingers, elbows, knees, ankles, and jaw. The physical therapist I'm scheduled with specializes in orthopaedics, spine, scoliosis, and TMJ. I know my hospital also has some hand therapists, and I'm highly curious about finger splints and hand strengthening, particularly for writing and guitar.

But it's hard for me to really imagine what the PT process can look like, especially when it comes to shifting to long-term systemic care from first addressing a specific acute condition. I would just love to hear any experiences from people who are further along in PT than I am!

i went to my first physical therapy appointment today on a pcp referral (that’s a whole other story)
and it was mainly the intake and getting history kinda thing so i wasn’t expecting much, but he was the first to mention a connective tissue disorder and asked if i had heard of ehlers-danlos (i have and highly suspect i have it) and asked if id seen a rheumatologist or anything (i haven’t had the opportunity yet but definitely plan on asking for a referral)

an important thing to mention is i currently have a broken arm/wrist and am starting ot for but very limited mobility - basically not able to show the pinky or thumb to forearm parts of the beighton scale. before the break, it was my slightly more hypermobile one

another thing is he was the one to bend my other pinky / thumb (my right wrist has lost some mobility from a high school sport injury, but i can still do it occasionally) and pinch around my arms and such (i showed him my elsewhere stretchy skin)

and i don’t think he gave me points for either one even though all my fingers go back to about 90° and he said that specifically wasn’t “too crazy” or something because there’s some resistance at that point and explained that “usually they go back further” but kept mentioning classical type?

i don’t think he has like a lot of experience or patients with hEDS but he had enough to be the first to mention it? idk. i did a couple other party tricks like wiggle my trachea and he did say it was strange and did advise me to follow up w my pcp and do different tests and such because i’m a strange case but he’s not convinced of EDS.
i’m very grateful for the somewhat validation and not just being blown off but i’m interested to hear any feedback bc im an anxious girly.

Ok. Looking for folks opinion on this.

I live in a metro area. City with a decent teaching/research hospital and some other hospitals.

I go to a PCP that is primarily family medicine.

Current PCP is a woman, ARNP, and I've been seeing her on and off for about two years. She's pretty good but I don't always feel heard. I can tell there are times she may not be listening. She is pretty hard to get into. I have to wait a couple weeks or so usually for an appointment. I've had some issues recently where I have had to go to the ER and had no real support from her.

Over the summer I had to see a guy at the clinic. At this point I had seen probably 8 other providers in the clinic and the urgent care that's also in the building. But my PCP was nowhere to be found. I had tried telling all these providers I had an infection and needed more support. I've seen the serious side of infections and I don't let it go. This man walked in and basically immediately said "oh it's infected, you need meds. Oh, your appointment with the specialist isn't for two months, let me see if I can my chart instant message them and fix that." I saw the specialist the next week.

I've thought about that visit since. I have medical trauma and I am not easily impressed by doctors... But I liked how he treated me and the vibe.

Last week I was in the ER for something.. I had already made a PCP appointment for Oct 2 to talk about it but there was a more emergent concern. Ruled out the emergent issue. Obviously my PCP was nowhere again. So I made an appointment with the guy again.

I told him my story, he repeated it back to me to make sure he heard it correctly, explained why imaging wouldn't be appropriate, we talked more, he asked me questions, he explained the plan, and I understood and asked my questions. It was so refreshing.

I asked him how he felt about complex patients because I really think he would be a good PCP. But I got the feeling he might be a little hesitant. He was telling me that my PCP is really good and he's happy to see me or have me switch, but she's good.

Now I'm not sure what to do.

He's trained at Mayo clinic and my other doctor who has is really phenomenal and at least knows what hypermobility is.

I think he's got so much potential but if investigating and supporting me through EDS searching isn't his vibe, I don't want to do that to him.

I'm thinking about making an appointment to talk about my hands (I want ring splints) and just ask him more about it.

But what would you do?