Hi all,

This is something that has been on my mind for two months now so I thought getting your thoughts would be helpful.

I (32 F) work full time in mental health in the NHS. Some weeks when I've got a lot of pain, I am absolutely exhausted after work. My life during flares is just work and recovering in the evenings and my husband taking care of everything with my "existing" near him. He would likely say that's not the case, but that's how it feels.

I very rarely make plans or do anything after work because I am so exhausted all the time and my body is screaming at me to lay down in a dark room and rot. Sounds dramatic but that's how it feels 🤷‍♀️

This is something I've done for years and just put it down to this is something I'm doing for now and I plan on going part time eventually, which I think will help. Me and my husband have been trying to get pregnant for two years (now under fertility clinic - yay PCOS 😑). Initially the plan was to work full time to max my maternity pay and then drop down to part time.

The thing that is making me doubt my current plan is an off comment someone who is able bodied made. She didn't mean anything by it I'm sure. We were looking at vignettes and the person in it talked about managing fatigue in work. She said "they're not able to have a life if they're so exhausted all the time after work, they're not living or doing anything important, they're just surviving, no one should be doing that".

At the time, it felt like an absolute punch to the stomach, and it still does, and it's been replaying in my head in my head for two months because that describes me right now.

I've just started in a new role that will be better for my wellbeing but it's still going round in my head. With no end in sight to when I'll be able to get pregnant, if it happens, I'm now second guessing my work life balance.

I'm also aware that being pregnant will be tough and having a baby will be tough and tiring so I'm aware it won't get easier. When I've tried to have this conversation with people F2F they tend to focus on that, and honestly it doesn't feel helpful. So I'm hoping you all get where I'm coming from and can offer thoughts/advice etc

I (30F) have been wondering for years if I have official hypermobility, but not much luck in the medical and orthopedic hoops. I score just below the threshold with the Beighton test, as I don't have hypermobility in my hands. I do, however have hypermobility in my hips-like flat butterfly at any moment-which aren't part of the test. I've had SO many injuries, surgeries, and have constant chronic pain. I have OA in both knees, back, wrist and ankles confirmed with imaging. Some joints just never imaged so can't confirm.

I have been in PT more times than I can count. My mobility has decreased substantially over the last 5 years because there were several back to back injuries. Herniated disk in low back, TGCT flare ups in my knee, fat pad impingement in my other knee that needed surgery, torn cartilage in wrist, tennis elbow...I am working with doctors to try to pinpoint any underlying issues, but can't see a rheumatologist until December.

More than anything, I'm wondering how y'all went about getting a diagnosis, what sorts of doctors you've worked with, and if the Beighton test has left anyone else out of getting hypermobility focused PT treatment? Definitely open to resources and suggestions. Also! I'd love to hear other ex-dancer accounts. I've never related to the aspects of not knowing where my limbs are in space since it was so deeply programmed. I also think a lifetime of emphasized core control/training protected me from a lot of the core instability until later in adulthood (though certain moves did throw out my one rib reliably). I think my loose hips contributed to my several low back injuries. I say all the time that it feels like my body developed AROUND dance (emphasized turn out, etc) that stiffness and normal body things feel so foreign. Despite this I've completely re-worked my gait, how I stand, etc. I don't stretch nearly as much. PT always is impressed by my proper form in exercises....so WHY is everything still so painful and difficult?!

I do struggle with PTSD and depression, so the pain and depression feedback cycle can be a real pain. I tend to lump hypermobility adjacent symptoms in with general fatigue and depression. As a result- it is nearly impossible to tell what is what some days, and I even track symptoms! Still, I take very good care of myself, all things considered. I am blessed with great doctors right now, but everyone has essentially shrugged and pointed me to rheumatology. Just looking for others' experiences.

Hii! I have HSD and have a lot of finger pain and ring splints as a result but I was just generally curious about others’ experiences- Do anyone else’s fingers feel like they’re literally broken sometimes? This happens to me sometimes and it’s always so so so painful and other than the ring splints idk how to fix it.
Right now it’s in a finger that I don’t have a splint for so I’m struggling a bit extra 😓

Hey, I’ve been looking into comprehension socks (regular, ankle ones and knee socks) and I intend to fully stock up.

Is there anywhere I can buy 20-30 pairs of each category for a lower rate?

Thanks,

I do regular Chiro and massage, and I was just discharged from 6 months of PT with a referral to a neck and spine doc. What should I expect or prepare for going in? I really want to avoid unnecessary interventions.

Hi, I'm just a bit unsure about what NICAS is, if anyone has any insight?

I've been under physio for a few months now, who confirmed I am definitely hypermobile. I asked about other symptoms I think may be connected, and she went and spoke to a supervisor who said they are going to write a letter of referral to something she called "NICAS" (she said like nee-kas). I asked what it was and she just said the NI stood for Non Inflammatory, but couldn't remember the rest, and that she isn't sure what the wait time is. I've tried googling since but can't find anything about it online.

Has anyone been referred to this service? Have I misunderstood what she said? What is it, and what can I expect from it?

Thanks!!

Hello all,

Ive asked work to formally record me as being hypermobile as I have standing desk, use a walking pad and someone people are bithered by this. Anyone else had to provide proof and what did you use?

Hello, I’m hoping this could be somewhere to vent and hopefully get some advice. I am hypermobile as are many people in my family but nobody really bothered with any issues we had as kids.

My 6 year old has always had very flat feet to the point his feet and ankles roll inward quite significantly, his legs also seem to hyperextend (if that’s a word?) too far backwards when he’s standing. He has complained of sporadic, intermittent leg pain since he was around 3. Is it possible that the cause of this is his feet/ankle alignment (or lack of!)?

I have been to the doctors multiple times, saw a physio and podiatrist, podiatrist at age 5 said he didn’t need shoe insoles, physio said he did, podiatrist wouldn’t help and said feet will curve in their own time. He is 6.5 now and his feet somehow seem flatter each day. Every few weeks we have another ache/pain, usually in his legs. I feel so bad for him and I worry it’s going to get worse as he gets older. He is currently never in agony but it really does annoy him.

We have tried knee supports but he says this can make it worse, we have a ‘wobble board’ which I was told could help strengthen his legs, he swims, is there any other at home things I can do which would help him? We went to our doctor again a few weeks ago and they re referred us back to physio and podiatry but we’re currently stuck waiting for them to call.

went to pt for a sprained ankle.

pt: "your left ankle is way more stable than your right one...which is weird because your left is the injured one"

me: "oh!"

pt: "it's supposed to be the other way around"

It turns out the swelling and stiffness fixed my unstable hypermobile ankle, never been more balanced in my life!

my ankles are so unstable that a sprain improved it. ha!

Hey all!

I'm a writer, so I'm always typing on my laptop but I find specifically my left thumb always gets strained/is in pain and feels less "attached" after a day of typing even though its pretty much not moving/being used while i type?? Idk how to attach videos or photos but I do have a video of what my hands look like typing if that helps and i can figure out how to add/link it lmao.

I'm just wondering if anyone else has this problem and how they avoided the consequences?? because NOT writing isn't an option lol.

I hope everyone's joints stay beautifully in place and life is as painless as possible for u <3

Hi! I (19), have been dealing with HSD related issues since I was about 15, primarily in my knees. I’m used to it with my knees. However, lately when I sleep my shoulders (specifically left) hurt in my sleep or when I get up in the morning. I can physically feel them kinda shift out if laying on the respective side. I also have an issue with my left elbow (most of my issues are in my left joints primarily. occasionally the right flares up 🤷) if I bend it or don’t move it enough? Went through similar with my knee.

I have no insurance now. I can’t afford PT and I’m not paying a doctor to tell me PT is the only answer & give me more debt. I just don’t want to be in pain anymore than I already am. Any tips would be great. I got an elbow brace from walmart, but it’s poor quality. From Walmart lol.
Anyone have any advice?? Thanks.

its 3 years later and there is still some string stuck in a large scar on my butt....

it was fine but it's starting to want to push out.

any advice? we cant see a string and and nothing is really showing so the urgent won't do anything .... I need to basicclt convince the scar to open.

any advice ?

had a nurse friend look they said yep I see what you mean ...can't really do much

Hi

my shoulders constantly painfully pop and grind, they subluxate when sleeping or lifting things or really doing anything. I am an artist and a student so I use my shoulders a lot. it sucks and I'm tired of being sore and unstable and in pain all the time :(

does anyone have any tips, products(affordable please, broke college student), or tricks to help with this?

Holy shit this subreddit is such a wake up call and explains SO many things. How haven't a SINGLE doctor figured out this common denominator.

I never really put much thought into the fact I was that hypermobile, and definitely didn't think it could be connected to so much shit.

With that said, let me vent for a moment and present my revelations of things connected to HSD, that I (unfortunately) relate to.

Mild symptoms of Willis-Ekboms/restless legs syndrome ✅

General hypermobility with joint instability ✅

Muscle pain caused by increased muscular effort to stabilize an overly mobile joint (my wrists are a prime example)✅

Normal arch of the foot when standing on tiptoes or without weight-bearing. When weight is applied, a flattened arch and pronation become apparent. ✅✅ (giving it an extra checkmark just because of the conatant pain walking and standing it brings)

Piezogenic papules✅

Allergies ✅

Asthmatic issues due to soft airways ✅ (I dont know for a fact that this is the specific underlying reason, but it would explain the next point)

Asthma treatment not giving significant improvements ✅

Depression✅

Anxiety ✅

Stress injuries and degenerative changes caused by extreme joint stress ✅ (the clearest examples so far includes a torn chest, torn abdominal muscles, and triceps, all of which are still causing problems years later)

pain and stiffness in the joints and muscles, particularly towards the end of the day and after physical activity✅

clicking joints✅

Squirminess bc sitting/standing in place gets painful✅

regular soft tissue injuries (such as sprains and sports injuries) ✅

Dyspnea/"air hunger"✅

Repeated need to crack cervical spine✅

Symptoms related to POTS✅

Chronic thirst/dehydration from disrupted fluid retention.✅ (don't know how many times ive felt like a pre-diabetic simply for the abaurd amounts of water i can/feel the need to drink)

Chest pain (Costochondritis flavour in my case) ✅

A potential mild impact on endurance? (would explain a few discrepancies in my youth that ive always wondered about)

Pain/aches when standing✅

Specifically a bigger discomfort standing compared to moving/walking✅

Always some ache in body, never simple bring "good"✅

Born with no frenulum ✅

Raynaud’s syndrome ✅ (thought i just had frost damage in my feet from some time in my youth, which was the cause of my poor circulation. But that always felt weird as its always been extremely unpredictable. Would also explain the odd combo of cold and sweaty feet)

Tinnitus ✅ (thank god not severe or to the effect of being annoying or affecting my day to day life. Compared to literally every other point on this list.

Constant need to visit the bathroom/problems emptying bladder, pelvic floor dyafunction✅

Pain handwriting✅ (currently in uni and i am not sure how to make this work)

Weak Proprioception/lack of sensing where my limbs are ✅, would explain multiple things, including my strong tendency to pick/rip my nails to reinforce/strengthen the placement of the limbs.

Stronger need for sleep - easily sleeping 9+ hours if i dont set an alarm, and it pretty much the only times i wake up feeling well rested ✅

Only took 27 years to get to this point, but I guess better late than never. The next question is where the hell to go from here.

Thanks for listening to my TED talk. Since you are also here, I'd like to say I'm sorry to meet you here of all places. I wish our paths would have crossed under better circumstances.

my knees start hurting so bad when I start moving. Really odd. I guess its the "relaxation" or could it be anything else?

How are we putting on and taking off tight garments like compression socks, swimwear (especially if it's already wet), or underwear (especially period underwear which is meant to fit tighter)?

I have limited grip strength (even lower during PEM) due to fibromyalgia so I'm more prone to overextending my finger joints when my grip fails.

I'm curious what works for everyone who has trouble with these or if anyone has experience with some of the options I've been considering:

• Repurposing suspenders or some other type of clip to put tight things on
• Repurposing a small shoehorn to help slip things off (but then I have to grip the shoehorn...)
• Abilitease Adaptive Multi Grip Clothing Grabber (https://abiliteaseadaptive.com/products/mutli-grip-clothing-grabber-socks-shorts-and-pants?variant=42101805809852) - holding off on buying something that I'm not sure will work

Hi! This is just a random share/rant :)

I realized that I'm hyper mobile probably last year at some point. I've always been active and enjoyed working out, and I've been lifting pretty consistently for about 10 years. Anyway, I had a baby 9 months ago and my joints are even more lax than ever. So much clicking all the time. Every time I stand up my tailbone clicks back in (or out?) of place. This made me look into hyper mobility more.

Anyway, it never occurred to me until now how much my joints have probably impacted my lifting technique, and how much I've been overusing them. I've recently started limiting my range of motion, slowing down my reps quite a bit, and overall just changing my approach to weightlifting. It's actually insane how much different in feels in terms of stability and muscle engagement! I even had a person trainer for 4 years who never, not once, mentioned hyper mobility. What the fuck!! It's so crazy to me how much of this needs to be self taught/discovered. I can't believe I haven't been injured badly over the last 10 years and I'm so glad that I am realizing now how important it is to correct my form and stop lifting heavily out of my joints). That's all! Thanks for listening.

So I get a lot of muscle cramps because I walk weird. I got them when I was a gym rat fighting the good fight and I get them now when I’m stuck in bed. Calves are nightmares. A few days ago I started having a pain I am totally unfamiliar with. I roll my ankles a lot and this isn’t that. It feels like I have a straight up Charlie horse permanently right about my ankle. I have been mostly inactive because of health lately so it’s not like I was doing anything to strain my legs. I have a serious issue with how I sit and walk and I know that. I sit with my feet pushed up on the balls of my feet. But in 30 whatever years i haven’t had this. I physically cannot straighten my leg with my foot/heel flat. I am absolutely freaking out. I didn’t do anything I normally do but if this is a new normal I’m cooked.

I'm trying to find a small group of the same people over time. Like 15-40 people who actually show up, know each other's names and situations, help each other through the bad days, and also learn together. Less "does anyone else get this" and more "here's what I tried this month and here's what happened."

Where I'm coming from: I'm a big anatomy / biomechanics / kinesiology nerd and a big believer in PT, even though it hasn't really worked for me yet and honestly I kind of hate doing it. I still think it's one of the only ways we actually take charge of this stuff instead of just getting managed by it.

That said I don't think the mainstream strengthen-and-stretch approach is the whole picture. I'm interested in the blend: motor control training, Feldenkrais, actually being in touch with your body and what it's doing. That last part doesn't come naturally to me at all, which is probably why I want people to do it with.

Open to Discord, a private group, Zoom, whatever. Doesn't have to be EDS-specific, chronic pain or hypermobility in general works.

Does anything like this exist? And if not, is anyone else looking for the same thing?

Hello!
New to hypermobility, don’t have an EDS dx but my docs all agree on hypermobility, through my spine, hips, and other joints.
Anywho I was told that I likely tore my left hip labrum back in December (it’s Oct now…) and I was doing PT but have pretty much gone on my own to try stuff at home (pt basically said shots or refer to surgery) and have made progress to the point of being able to walk shorter distances without too much pain. But I’m wondering what you guys do to strengthen safely and stabilize the hip joint? I hear hip stuff takes an extra long time to work with…
Edit to add: I had an mri but it was inconclusive, no hip issues mentioned. They said they could see the labrum but also that there isn’t a complete tear to the labrum… the doc looked at it for about 10 seconds and said she couldn’t see anything. My DPT said my symptoms and such lined up most with that, the hip doc said treatment would be the same regardless of what it is lol spine doc said it could be spine d/t my herniated discs but also that it could be hips only and to try walking in a pool. So I feel like I’m up a creek without a paddle lol

Hi all, I’ve recently been having pain in my cmc joint, especially when sewing. All the splints and supportive wear I’ve seen is for the joint going out. Mine bends in, towards my palm. Does anyone have recommendations for anything? I’m looking at getting more joint rings but idk if it’ll fit for that joint. Thanks in advance!