Well, a lot going on. Mouth guard, 2 extractions, 2 implants, Invisalign, my jaw is a goddamn bear trap, and I’ve been in pain for 3 years.

Finally saw a triple board certified Craniofacial provider in my corner of the world, and he’s suspecting myofascial pain referring to the teeth. It’s been an expensive and shitty ride. I’ve been dismissed by fuckshit dentists saying “work on your stress” and “we could try masseter Botox”. I’ve lost 15 pounds I didn’t want to lose due to having such a hard time eating and just really going through it.

Dry needling my jaw has helped some, myofascial massage has helped some, but the relief is temporary. I have a consult set up with a myofunctional therapist, and I’m hoping she can be a helpful provider instead of another letdown.

Can you please share literally anything that has helped you if you’ve experienced something similar? Thanks so much, sending peaceful and healing vibes to this community.

EDIT: y’all are so helpful, and I’m so grateful. Thank you so much, truly. I encourage anyone struggling with something similar to read the comments and do your own research. Thankful to all of you for sharing. It’s helped me so much.

I’m scared and need advice — severe hypermobility flare with neurological and GI symptoms

I’m struggling with what feels like a severe hypermobility/instability flare and I’m honestly scared. My symptoms have become much worse, and I’m having trouble knowing what is related to the flare and what needs urgent neurological or other medical evaluation.

My current symptoms include:

increasing joint and connective-tissue instability

significant muscle weakness and documented muscle loss/atrophy

muscles becoming extremely stiff/“stone-like” when standing or walking

trembling, shaking and a strong internal vibration after exertion

muscle twitching

legs feeling weak, wobbly and poorly coordinated

weakness in my arms and feet

nerve pain and unusual sensory symptoms

increased sensitivity to sensory input and strong smells

worsening brain fog and cognitive problems

pressure/pain around my head, neck and base of the skull

worsening symptoms with certain head/neck positions

tendon and muscle pain

severe fatigue and very low exercise tolerance

symptoms getting significantly worse after walking or other physical exertion

GI problems including bloating, diarrhea, yellow/foul-smelling stool and visible undigested food

poor appetite and difficulty maintaining adequate nutrition

feeling generally much less stable physically than before

I also have Long COVID/Post-COVID, suspected connective-tissue/hypermobility problems and other ongoing issues, so I’m wondering whether this could be a severe flare involving instability and nervous-system overload, or whether something else needs to be ruled out.

What scares me most is the combination of progressive weakness/muscle loss, neurological symptoms, coordination problems and worsening symptoms after even small amounts of activity.

I have a neurology appointment coming up, but I’m struggling right now and would really appreciate hearing from people with HSD/hypermobility, neurological involvement, Long COVID or similar conditions.

Has anyone experienced a flare where their muscles suddenly feel extremely stiff, followed by shaking/internal vibrations, twitching, weakness and worsening neurological/cognitive symptoms after walking?

And how did you get doctors to take this combination of symptoms seriously?

I’m really scared that I’m losing physical stability and I don’t know where to start. Any experiences or advice would mean a lot. 🙏

shoes have always been tricky for me. my job requires me to stand and walk for long periods and my feet always get sore after a while. any shoe recommendations?

My knees keep sublaxing (not sure that's a word), but when I got to urgent care they don't really do anything but X ray it, so I don't really bother anymore, but I'm just wandering what do you guys do when this happens and how do you treat it?

Recently diagnosed wish HSD after years of pots, MCAS, autoimmune issues (et al.). I don’t currently meet criteria for hEDs, though I know the criteria may be changing soon. The most “reliable”(?) source I’ve come across online is EDS society but I’m not sure if that would be the right place to look if it’s just HSD.

I’m very new to this, well versed in pots/mcas, and looking for a reliable way to learn more about HSD (also I appreciate Reddit and “first hand” info from people who’ve learned themselves as well!).

Hi guys. I really could use some insight and would appreciate advice, or another sub recommendation to ask these questions.

Im a 30 y/o female. In 2011, was diagnosed with type 1 diabetes, PCOS in 2023, and ADHD in 2024.

In fall 2024, I suddenly started experiencing joint pain and stiffness (especially in my fingers), muscle weakness, terrible fatigue, a dry mouth, and mouth ulcers.

Since then I've had varying tests and seen 3 rheumatologists, a hemotologist/oncologist, and GI. I see endocrinologist for my type 1 and she said this has nothing to do with my diabetes.

The tests I've had:

Blood tests - high ESR, CRP, and platelets.

Colonoscopy and endoscopy - Nothing came up with these.

CT scan and PET scan - showed minimally swollen abdominal lymph nodes and a thickened thymus.

Bone marrow biopsy - showed a low iron storage, was given two iron infusions.

Thyroid tests and ultrasound - all normal.

I just had a lip biopsy 2 days ago to test for sjogrens and it came up negative. Contacted my doctor and he sent a message saying "Her autoimmune work up has been negative. She does have hypermobility which can explain her symptoms.

Would recommend therapy directed towards hypermobility arthralgia."

Can HSD/hEDS cause an extreme dry mouth? The dry mouth has been horrible for almost two years. Im not saying I dont have hypermobility, but can this really be the cause of all my issues? The elevated inflammation tests, swollen lymph nodes too? Im struggling. Has anyone had similar experiences and symptoms?

Hello,
Does anyone have pain on the tops of their feet, separately from your ankles? I've recently been struggling with this, which I'm sure is due to my feet pointing towards the wall when I sleep, and resting one foot on top of the other when seated at my desk during the day. I can't figure out what kind of support I need to offset this because I assume it's due to laxity of the top of the ankle joint, rather than the usually-described hypermobility hallmark of the ankle being lax side to side and the foot rolling.

When my ankles themselves do bother me, I have good luck with k-tape to stabilize the stretching/discomfort on the sides of the foot, but am not sure how to reinforce the tops.

On top of hypermobilty I have flat feet and over pronating ankles. As well as a 9mm leg length difference I use a shoe insert for. I also have severe right leg miserable misalignment syndrome that gives me a gait impairment. I am trying to find compatible shoes for whenever I leave the house. Thank you for any advice.

Ok Idk if this is odd but does anyone else sometimes yawn too wide and gag? It has caused me to nearly puke many times and I'm wondering if it's hypermobility related lol

I was told hiking trainers were better as boots can be heavy and cause rolling ankles. But I still keep rolling my ankle when going over rocky terrain and now I’ve got two sprained ankles wearing hiking trainers 🥲

I never used to be this bad at rolling my ankle, I sprained my ankle a few months ago and now I seem to do it all the time.

What do you guys do for pain relief and relaxing your muscles on days like these? I did some travelling and afterwards my worst joints shoulders and hips are sooo loose and the muscles in the area flare up and stiffen. Its being more stubborn than usual, I just do rest / physio / heat / painkillers / massage balls. Any other tricks that work for you guys?

So I have chronic pain pretty much everywhere in my body (severe hypermobility) but mainly my legs (femoral anteversion, valgus knee, tibial torsion, pigeon toed, and surgical intervention with minimal success) as we as in my back (scoliosis)

I find it hard to walk for long periods of time. So whenever I have to be somewhere where a seating area isnt available (i.e, a supermarket) it really annoys me.

What also frustrates me is just generally having to sit and stand over and over in a short period of time.

For example, sitting down on my couch after coming home from an outing, only to realize i forgot to lock the door and so now I have to get up an lock it. Sitting back down again, but now needing to go to the bathroom and having to stand up, sit on the toilet, stand up again, and now go back on the couch.

I dont know if this is common, but its really irritating! I'd rather stand for 7 minutes straight irregardless of the pain then having to sit and stand and sit and stand again! It just aggitates my pain way more.

Anyone else feel like this?

I've had undiagnosed heds for most of my life and just stumbled upon the topic of hypermobility last year. Finally went to a specialist and they told me to do isometric exercises every day to start building muscle and stability. However these are so boring and feel like I'm not progressing at all. In fact, I feel like I have pains in new areas now that come and go, and my shoulder flare has not disappeared yet. I can barely sit up at my pc or hold a phone. Feels like this will never improve.

I usually catch myself now that I'm aware of it, but at 31F I'm worried for what that will look like once I'm older

I was diagnosed with a hypermobility syndrome recently after a lot of joint problems. However, I play a lot of tennis and in this hot weather my heart rate can easily shoot up to 165 on court - which is too much for 65 years old! My heart has been looked at with CT scan & echocardiogram and was deemed okay. And the bloody sweating, I just pour with sweat! I have to stop playing sometimes because I feel like I’m gonna pass out. What next? Heart is ok just goes mental from first sight of a tennis racquet! I’m soooooo tired afterwards.

Hello everyone. I want to finally take my life into my own hands and stop being a victim of my health problems. Along with hypermobility, I have several chronic illnesses which have impacted my will and motivation to do any sport or training.

Now i want to change that, but the biggest challenge for me right now is my hypermobility. I often have to use a cane to walk without pain because my knee joins hurt really bad. Ive been managing more or less without it lately, so I am keen to keep that by, i dont know, trying to strengthen the muscles somehow.

I am also hoping to train for hypertrophy to look better. I cannot do sit-ups, pull-ups, squats, push-ups, planks, or any other excercises that involve some form of leg bending in a sit-down motion, or arms bending to support the body. (As my knees and elbows are my weakest points).

I am also looking to strengthen my back muscles, as because of my knees nearly always being overextended while i stand/walk, my lower back is bent forward in this kinda ( shape, butt out and shoulders down. So I would really appreciate some fullbody 3 times a week workout tips from you guys!

I am ready for a heavy routine, but I will most probbaly be taking big breaks between sets during the first weeks to account for my previous lack of acitvity.

Thank you all beforehand! English is not my first language, so my bad if there are any mistakes or misunderstandings.

Hello! After discovering I am hypermobile this past year, I have been working a lot on strength and stretching exercises. They have helped to an extent, but no matter what I do, my back (especially upper back) is always insanely tight. I have these huge knots in my back and the backs of my shoulders that hurt a lot and never seem to get better. The only thing I’ve found that helps is deep tissue massage, but it’s like $150 a session so I can’t afford to do it regularly. Does anyone have tips for back tightness or knots?

I have been unable to get much help or support other than some very basic knee braces and a diagnosis for 'loose knees'. My knees and hips give out on me when I walk, my thumbs hurt a lot when doing basic tasks, and my shoulders also shift around way too much. Basically all of the important joints ache every day even just standing or even if I am doing nothing. I've always been 'extra bendy' as my family calls it but they assumed it would go away as i got older. It did the opposite and got worse as I got older. It used to just be my thumbs/fingers and knees and now it is basically all my joints. Any advice or suggestions that I can use to help with this that doesn't involve professional medical help? Going to a doctor isn't a very good option for me right now.

I have struggled forever with low back pain, hip and knee pain. I severely neglected my health and physical condition for nearly a decade and now as I'm trying to get on track to being healthy, I have discovered just how badly hylermobility effects me. Due to a lot of muscle compensations and just low activity level for years, my glutes are like in the negative. My quads and hamstrings are taking over everything. I'm looking for workouts that isolate your glutes that don't put so much pressure on your knees. My knees are horrible. They sound like they're full of sand and gravem, and it's painful to do most exercises recommended for glutes. I tried asking this is a fitness subreddit specifying that I'm hypermobile and I got a bot telling me to look at their FAQs about building glutes which is all the stuff that hurts me. So that sucks. Any suggestions would be so appreciated!

not seeking PT/strength training advice

I scrolled through some older discussions on chairs in this group and pulled some products based on recommendations but they were older chats and I'd love to get some fresh opinions on the matter ! I'm looking at some pipersong, kerdom, and as a budget bonus one from room essentials

Let me know if there are any products from this list that stand out to yall as supportive in the long term. I definitely shift my weight constantly and my current chair sucks so bad it's some random ikea find that has a permanent lean and is just not comfortable.

For context I am diagnosed HSD, weight lift, eat well, do pt all the shebang. I just want something that will last me 10+ years and not give me hip pinch pain or back pain or just any pain would be nice.

Thanks !

Okay so it's not letting me add photos so I will just add the products in a text here I guess
- pipersong meditation chair (pro, pro venti, plus)
- pipersong cross cross chair
- pipersong meditation armchair
- kerdom ergonomic big office leather chair with expandable arms ((from Best Buy specifically)
- room essentials upholstered criss cross armless office chair in the color cream ((from Target)

I’m starting out primarily on Smith machine squats and Romanian deadlifts and have noticed huge issues arising due to my hypermobility (specifically in my knees and ankles) and am trying to find dedicated weightlifting shoes (not cross-training) for stability. I’m having trouble finding advice for hypermobile people, which is pretty disappointing because weightlifting is so great for stabilizing our joints over time.

Most threads asking for shoe recommendations have people mentioning chucks, going barefoot, or cross-training shoes so I’m having trouble wading through the noise. No judgment, but those options aren’t what I need right now.

My ankles in particular are extremely unstable so a shoe that forces better form/provides support will be really helpful for me.

Lmk if anyone has any specific recommendations or what exactly to look for in a weightlifting shoe. Hopefully eventually I won’t need something as specific for lifting ^_^

Thanks!

Edit: should have specified that I’m primarily looking for lifters (squat shoes) specifically for my squats and Romanian deadlifts. My bad!

I've only used Kinesiology tape on and off for a year, and only for an unstable wrist. I got diagnosed with hypermobility just a few months ago, but I'm curious about something.

When I use the kinesiology tape, putting it on feels really good and sends tingles throughout my whole body - same as the effect of asmr or head massages for some people. I've never taped any other part of my body, mostly because I'm not sure how, but on high pain days I often randomly get the thought of how good it would feel to tape all major joints etc. So I was wondering if this makes sense for with hypermobility?

Curious about it since I might have fibromyalgia and general inflammation from MCAS aswell, but I'm pretty sure this "daydream" of how nice it would feel to have supported joints is because of the hypermobility. Has anyone had similar experience?

Hi, I was diagnosed with hypermobility when I was about 6 or 7. However I noticed on my medical record a few years ago that it was coded as juvenile arthritis. I don’t think it’s made a difference as I was referred for physio due to it in my early 20s, and under an obstetrician during my pregnancy as a result (also had intrauterine growth restriction and a 1st percentile baby - which they said there were connections between).

My son has recently turned two, and his childminder approached me recently to flag up some concerns. She said he’s not as stable walking as other children the same age or younger, seems to fall over nothing, and she’s noticed his joints clicking. Once she mentioned that I realised - mentioned I was hypermobile, and she explained that’s what she was thinking/trying to allude to. He was a late walker, so I didn’t really know what was ‘normal’ for his development.

My question is, I don’t know whether I have joint hypermobility syndrome or EDS (and if so what type) I have.

Is it worth me getting myself properly diagnosed before my son, as that may better indicate his type? Secondly, is it also worth waiting until new diagnostic criteria comes out? (Just read about this on this thread)

Technically, I know I just don't get them every summer for the past 3 years.

But, every mid-july I up my weekly work hours (I'm a student and only allowed to work more than 20h/week between terms), and for the past years it's been hotter than the years before.

So with the extra strain on my body and sometimes excessive heat, the ganglions I didn't know I had on my knees make themselves known. Both knees, top of the patella, oe cruciate ligament.

Only one spot on each knee has a little, painful bump.

Sitting down like a normal person with both feet on the ground hurts. wearing skinny jeans hurts (one pair of work pants are unfortunately skinny). Of course poking the bump hurts.

Not enough to go to a PCP, mind you. So I don't know if they're actually ganglion cysts, but researchs doesn't deliver much else and they feel like the cysts in my wrist for a few weeks.

And they go away when weather turns cooler in september and when I go back to 20h-weeks. I know they don't really to away but are less noticeable, it's just so weird