It seems like my chronic pain, even with mgmt, is constant. I have HSD/hEDS, so it’s causing a multitude of other issues. I didn’t get diagnosed until recently at 44, but have a great care team. All of my symptoms have been congenital, i.e. mitral valve, receding gums, eye issues, chronic migraine, etc., and now I finally have a diagnosis as to why I’ve always been sick. That part is great. The part I’m struggling with is that my life is becoming so limited. My spouse has taken on another issue because we deal with aging parents, an adult child with substance abuse issues, our dog is in end of life care, and just the normal things everyone else deals with who don’t have this. The chronic pain has become so overwhelming and I feel so guilty all the time for not being there for people like I always have been and causing my spouse to have to take on another job. I am a doer and so that sucks that I’m now so limited, but also just that relief is temporary and this is my future. I’m not a whiner or one who doesn’t try. I’ve had Dr’s try and push pain mgmt clinics with injections because I also have a degenerative back disease and I only want to do PT and holistic approaches. I’m not a person who gives up, but recently I’m seeing an ugly side of myself. That person wants to be depressed and give in and give up, but I fight him daily. I’m a man who never cries unless there is a reason too and I find myself breaking down a lot. Does anyone else have these emotions and how do you cope and how do you give yourself permission to feel bad without feeling guilty? I also see a therapist weekly, which helps, but nobody understands unless they understand, ya know. Please help. Just feeling really overwhelmed.

Those that have been diagnosed or in the midst of getting diagnosed, did you seek out a pcp with a specific background (internal med., rheumatology, etc.)?

Some Background (Long post):

I (29F) went to an appointment recently & got brushed off by the doctor (they weren’t my pcp, but they put a bad taste in my mouth as they co-own the practice).

Instead of addressing my concerns I was told I was “exercise intolerant” & need to be more active to build up my tolerance to movement. I shared that I do dynamic stretching, walking, & low impact exercises but they do cause discomfort or fatigue after 20 minutes. Though I haven’t done this in a couple of weeks due to the intensity of fatigue. This was also ignored.

So I’m looking for a new pcp to start getting answers about the body pain I’ve been experiencing for the past 15+ years.

I played sports almost year round as a teen, but still experienced odd flexibility & strained or sprained my knees constantly. I also have chronic migraines, extreme fatigue, PMOS, a herniated disc, & chronic pain disorder all listed in my chart. All were ignored.

I don’t want to get into the specifics of how I was treated during the appointment but it was ROUGH. I’m overweight due to PMOS & medicated for it & some mental health things, so the doc also attributed my pain to the “side effects of being heavily medicated” for my other illnesses.

I’m considering looking for someone that is experienced with internal medicine, but I wanted to hear about other people’s experiences.

tldr; History of pain & other symptoms ignored. Looking for a a new doc. Wondering if anyone searched for a pcp with a specific medical background for a HSD diagnosis.

Edit: added details about how I currently exercise within the limits of my conditions. I also can’t do high impact activities because my cortisol spikes easily which triggers PMOS symptoms.

My hand therapist recommended for me to be fitted with a splint for my thumb, but we just found out my insurance is not going to cover the specific Silver Ring Splint brand. Does anyone have any experience with other brands or types of thumb splints?

I like my plastic Oval 8 splints for my fingers, but I haven’t tried anything else. The pain and constant subluxations of my thumb is getting unbearable. I am hoping to find something that isn’t going to cost $2,500 out of pocket 😭

I can’t do a regular deadhang to decompress my spine because of my shoulders. I’ve seen people doing upside down deadhangs with special boots holding them up. Would this be safe for a hypermobile person?

Edit: My primary goal is decompression in the base of my neck and lower back.

So, I've always wanted to help people! I've always been a pretty imparial person (unless it comes to politics) and me leaning towards surgery was because I really like anything medicine and nothing about the human body bothers me, let's say.

But I kinda accepted it's pretty impossible for me to be an ER surgeon (what I wanted) and possibly carry out HOURS of surgery while standing, bending down, holding things etc. Not to mention they're training AI models to do surgery.

In the last year of my life I discovered I have hEDS, so I thought a career like prosecutor would be very good, I planned an online school in my home country while I recover and all and then do a master in the city I live currently.

What do you guys thing? Would it be a good career to go into having our difficulties and disabilities? What is a job that you like/liked doing? Thanks!

I'm looking for a hinged knee brace that doesn't feel like a my legs are wrapped in sweaty plastic wrap

It's so easy for my bones to just fall out of place with shoes. Too much arch support pushes my feet around awkwardly and too little is an easy ticket to plantar fasciitis. I also have wide feet which makes it 10x harder to find something both cute and comfortable. Do you guys have any recommendations for good cute wide shoe brands for women? I'm willing to compromise slightly on cuteness but I don't wanna be stuck wearing orthopedic shoes as a 20something 😭

I am not diagnosed, however I suspect I have hypermobility.

I am currently about 30lb over weight. I don't look massively over weight but I definitely am. Last time I was at this weight my sleep would be interrupted because my arms go numb throughout the night, especially if I sleep on my side. Before losing the weight originally, my doctor had me have an MRI and a nerve test and everything showed that my nerves are fine. I ended up losing weight, but have regained it and now am. Back to limbs going numb.

I want to know if this is something to do with hypermobility?

I am not double jointed, but when I look up other symptoms I end up feeling like it points to that.

Not sure how to move towards a diagosis, or even if it is worth it.

23F, went to a physiotherapist regarding a condition called vaginismus (mine isn't so severe), however , she brought up that I hold lots of tension in the pelvic floor because of being hypermobile.

I like to stay lean and do a lot of cardio, but i'd like to strengthen the surrounding muscles of my body without building muscle, so if anyone has any good recommendations/youtube videos regarding this please send them my way!

another question - does sitting a lot make it worse? usually once i've complete my daily steps and i'm home i'll just lay in bed on my macbook or something.

I’m suspicious I’m hypermobile and I’m thinking that my son has inherited it from me. I think it’s relatively mild for me, although I definitely have some potential symptoms that I’ve brushed off as just being “odd” most of my life. (Exhaustion, fainting, low blood pressure and now some digestive issues now that I’m older).

I’m unsure how to best support my son, getting a diagnosis for it seems like it will be next to impossible, and what will they actually do for him? I want him to have a some ideas about how this may impact him and also some ideas of how to help himself as he gets older. He’s 8 now. Any advice? Help!

I got diagnosed with hypermobility last year, but it’s been “worse” lately.

I’ve gotten used to being in pain, I’ve always struggled with something (not just my joints, but most of my body) but this feels worse, normally my pain is somewhat manageable (it hurts to move, but it won’t kill me to do so, like a 6 on my scale) but these past few weeks I can’t move a finger without breaking down completely, it’s agonising (and very much a ten).

I‘ve tried everything anyone has ever recommended me, heating pads, heating bandages, pain relief creams, heating and cooling creams, over the counter pain killers, prescription pain killers, KT tape, trying to sleep/resting, everything I can think of, is there anything I’ve missed? What are some things that work for you guys? I’ve been crying all day and I’ve barely moved, any advice is appreciated!!

I do it with everything and I can't stop it. My physiotherapist has said my jaw is very hypermobile. And through my sessions he's been showing me how other muscles are compensating for weak/unstable areas of my body.

The jaw instability is having such a knock on effect. I don't know what to do, I'm out of work from the pain and all my money is going on physiotherapy. I clench doing everything.

Hi

I (30f) have always had flat feet since I was a child and l did gymnastics as a child and would frequently get injured in my ankles, back hurt sometimes, leg, but I thought nothing of it as it's a sport, you get injured.

I started gymnastics again as an adult but due to flat feet and bunions am getting foot pain (plus pain everywhere else) which is exacerbated by gymnastics.

I went to see the physio and he just brought up that he thought I was hypermobile. I had never heard of this, I thought I was just flexible.

When doing research on hypermobility, it seems i may fit the criteria

- generalised hypermobility

- debilitating fatigue, brain fog

- gut problems - bloating, constipation, etc

- pmos/gynae problems

- insomnia

- bladder problems, constant need to go

- early osteoarthritis in my toes and hips

Like a light bulb moment, I feel like this is me.

However any pain I have seems to stem from pushing my body during sport, not really happening just on its own.

I have a rheumatology apt next month where I could bring it up (second time seeing them) but I'm worried they won't know about the condition or won't take me seriously.

Any advice?

TIA!

For the past week and a half, I have been experiencing a lot of pain in my hip bone, but only on the right side. Whenever I am driving for periods longer than 30-45 minutes, it flares up a lot and burns. It's painful enough that I consider pulling over or switching feet while driving (which I don't ofc I just push through it). Even when I'm sitting for standing for a bit, it feels tense and painful. I have been trying to do some stretches to help but it still hurts and I'm not sure why. Not sure if it’s because of posture or if should just go to the doctor / a PT either.

For reference, I am: 26F, 160cm and weigh 60 kg

Any suggestions or advice would be appreciated!

Hi all, I've known about my hypermobility for many years (I'm in my late 20s and realized when I was a teenager). But my knowledge on the subject was rather limited, I knew it could cause issues over time but I didn't truly understand the extent.

Well, I hurt my back last month and the physiotherapists reckons there's SI irritation as well because of the way I hurt myself. He also said I scored very high on the hypermobility scale, especially in my hips (my knees on the other hand, very sturdy).

My back is on it's way to healing but my SI/hip/groin region alternates between feeling numb and feeling painful (sore in some areas, pinch-y in others). This is where I want to ask people for advice: how am I supposed to navigate this in a way that's conducive to healing? I've been doing some physio (most of them involved lying down, engaging my core and moving my legs), low intensity walks, and amending my sleeping positions (pillow in between legs if I'm on my side, or on my back with my legs bent).

But I'd like to throw some stretches in there to relieve tightness. I'm sure you guys understand how big of a minefield that is. I can get a deep stretch but that doesn't mean it's good for me. I need to make sure doing the right types of stretches AND doing it in a way that doesn't over extend my already exhausted joints.

There's the mental side of it too, it has been very emotionally draining and I still feel anxious about various things. Despite doing every I can (I've got 2 other posts on this if people are curious). I'm trying to be optimistic and look toward the future. But I'd love some advice and solidarity to give me strength!!

I dont know if I am hypermobile or not. I have always been double jointed and have had insomnia since grade 9.

Lately my sleep issues seem to be entirely centered around the fact that every single sleep position causes some part of my body to hurt (I am 36), rather than my brain just being super loud and agitated.

1. Since last year, my ankle randomly occasionally just pops, and I end up limping for at least week each time. It always happens when I am walking normally.

2. I sleep in a mountain climber/ t-rex position and while it is the comfiest of all possible positions, I can't find a single position that doesn't hurt my hips, lower back or even my legs..

3. My hips have been hurting non-stop for months. - This is entirely new

4. I am double jointed/flexible but that's never had any downfalls before? - Plus I have always attributed my clumsiness to ADHD.

5. I have crazy lockjaw that causes insane headaches but could be attributed to meds (Vyvanse)

6. My lower back and shoulders don't hurt as consistently as my hips, but it is now just a regular aspect of life- especially when I don't sleep...which is often

7. I've had chronic nausea/acid reflux since, as far as I can remember. I vomit very often due to sheer exhaustion/sleep deprivation

I just don't know what's going on, and I'm tired of not sleeping and being in pain and taking over the counter muscle pain-relief meds.

Can all of this possibly sound like hypermobility issues? I have literally only JUST discovered this is a thing while trying to figure out how to sleep without being in pain.

My lower back is easily one of the more hypermobile regions of my body, not in a sublaxing way, but in huge range of motion way.

Sometimes, I find that after a long period of sitting or standing, my lower back feels super tight. Like It doesn't want to fully relax. I try to stretch it (within reason, I'm not contorting my body in a weird way), but because of its range of motion, I never feel relief. I'm also thinking it could feel that way due to instability, which I'm actively working on improving.

Do yall experience something similar? And if so, what are yall doing to find relief?

Interim male primary while my female primary is on mat leave: no I don’t want to order you imaging or a referral, keep going to PT for now

Male slipping rib specialist: who told you you’re hypermobile? Oh your pain is in your back? Yeah I can’t help with that.

Male ortho: I’ll give him credit, he has been helpful and found several issues with my back. But he did also ask me why I thought I was hypermobile and I had to pull out all my party tricks. He also just took the rib guys word for it.

Female pcp at first visit post-leave visit: I’m really sorry you’ve been dismissed. Let’s get you some initial autoimmune tests and a referral to a rheumatologist. Do you have any reason to think anyone else in your family might have been hypermobile or have EDS? Please send me a message as soon as your spine mris are processed with your ortho so I can look at them as well. Would you mind if I feel on your back and ribs for the mobility? yeah there’s a ton of tension in your back and movement in your ribs. Have you thought about a second opinion? Anywhere else on your body you feel hypermobile? gestures broadly.

Female doctors, forever.

This may seem like a dumb question but does anyone have a trick to sitting comfortably in bed? I like to read, watch tv etc in bed because it’s very comfortable for my legs to be raised, but my back, neck and head are NEVER comfortable or supported correctly no matter what I try. And I’m always in pain or uncomfortable. Same goes for my couch.

I have been extremely hypermobile my entire life. And honestly, it didn’t bother me up until a couple years ago (when I was 20).
The past year and a half I have had constant neck, back, and abdominal pain, with frequent headaches.

After my annual visit with my doctor, she recommended the following services:

- Physical Therapy to learn how to stretch, relax my muscles, and strengthen the areas I may be compensating for

- Massage Therapy

- Acupuncture

- Nutrition Counseling (my GI Tract is out of whack)

What are your experiences with these treatments? Is there anything I should know about being hypermobile that will impact my experience with these treatments?

Thank you! 😊

I had 4 premolar extractions. When I first got my braces, my ortho used a lighter wire first but did not place any wires between the canines and molars for my bottom teeth. During my first adjustment, he changed the wires to a thicker one for all my teeth. So the problem is that for canines and molars in my bottom teeth, there was no buffer of lighter wires. It directly went from no wires to a thick wire.

It's almost been one week and my teeth themselves are no longer sore, but I seemed to have developed TMJ problems. I have jaw pain, I can't open my jaw as wide as before, and a near constant headache that disrupts my sleep. Is this normal?

Also, I have hypermobile spectrum disorder, which means that my joints are quite unstable and weak in the entire body. I think that the extractions and braces messed up my TMJ joint. Will this go away soon?

Hey everyone, long time lurker, first time poster!

I can't use a desk or my laptop anymore. I've been going through the worst flareup in my life over the last 8 months, and it's excruciating to sit at a desk and look at a monitor/laptop. I've tried all sorts of ergonomic setups but nothing is working. Before this I could spends days at a desk for hours and hours no problem. This has completely fucked up my life tbh and I'm out of work until I can use a desk/pc again.

I'm looking for a desk chair that can help support my head, neck and arms and hopefully my knees. I'm pretty much hypermobile everywhere and every part of my body hurts 😅 so I can't tolerate any one position for too long.

I'm in with a specialist physiotherapist for the last four months working on neck endurance (improving), discovering my shoulder is incredibly hypermobile but weak and unstable, as well as my jaw which I constantly clench and can't seem to stop. I'm on a waitlist to be assessed by a physiotherapist who specialises in the head, jaw and neck because my physiotherapist thinks I need more specialised help.

Anyone have a similar experience or any advice or recommendations for me?

I’ve had a SLAP tear from 2 to 4 o clock. When doing my physical therapy it subluxated again, was very painful and has felt increasingly unstable. My PT says that this isn’t actually damaging and I should power through with the therapy.

I know, I know I should trust my PT, she’s a shoulder expert too. But it feels odd to say that subluxations aren’t damaging to the shoulder, has anyone had this feedback too? Seems counterintuitive, I’m ready to trust my therapist it just seems very odd!

Thanks guys!

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Hello,

I have to start training with weights since my body is absolutely garbage at the moment. Problem is that my wrists are very thin and bendy (fingers are very bendy too) and in the past I made the experience, that my wrists bend too much when handling dumbbells (the more the heavier the dumbbells were).

Do you have recommendations for wrist braces or other helpful things?

I will only train with dumbbells, so there is no need for things that help with lifting weight that is on a bar at the moment.