I have times where I have what I call "full body retching" where my body kind of shudders but I'm not actually nauseous. I've been wondering if it's actually that I'm in so much pain that my brain isn't actually registering it, hence "painless" pain. Has anyone else experienced something like this?
Okay, this is really embarrassing to talk about, but doctors have been no help and I was wondering if anyone can relate/share how they worked on this?
When I was a teenager, I had this sudden onset of a weird need to burp, like, all the time. It hit a point where I was very withdrawn and would excuse myself from conversations with friends and loved ones. Doctors gave me bacteria tests, checked for ulcers, that kind of thing, but no luck.
It's not as bad now, give or take a decade later, but it gets really bad particularly after eating. I get this feeling that there's air stuck in my stomach and have to push it out. I don't know if it's mental (I have OCD and it might be a compulsion) or physical (I've heard a lot about hypermobility and gut motility issues).
I've been treating it as OCD-related for a while, as it pretty much disappears when I'm in the moment and my mind is occupied, but the fact I even CAN consistently do this and make myself sick by pushing at my GI system has me wondering if the connective tissue is disordering.
Any help appreciated.
I work hospitality as a manager in a pub, i've noticed in say the last few months as my hours and length of shifts increased i am not recovering physically at all, i've finally caved to knee braces and other wearable supports. the problem is i am extremely good at my job and in a good place financially/socially, i don't want to give it all up but i cant keep losing all my days off writhing in pain because my body has finally relaxed. and i have adhd and i take elvanse for it which probably hasnt helped my sleep/recovery. its even worse when sitting down or standing still is objectively more uncomfortable in the moment than running around a bar but running around/walking about 17k steps daily is absolutely obliterating my joints even with custom insoles knee braces and a pretty serious painkiller regimen. its just all so tiring i dont understand why i was dealt this hand. especially being one of the only fairly strong guys there i end up dealing with the barrels and racking ales etc (average cask weighs about 52kg, and kegs about 70kg, 20 when empty) so its weird cause i can do these things and i have always been stronger than i appear for my size/weight, but i have noticed i physically struggle more with these longer hours especially the 14hr shift i get every week that kickstarts my week.
I may be about to accidentally start expensive shopping habits for myself, but I'm curious: what health tracking devices are you all using? I have hEDS, dysautonomia/POTS, and MCAS, and currently use an Apple Watch, which I like, but I'm fascinated by all the different ways people track symptoms, pacing, heart rate, sleep, HRV, activity levels, crashes, etc.
Tell me about your watches, rings, chest straps, ECG monitors, symptom-tracking apps, spreadsheets, colour-coded notebooks, or whatever other system you've developed in your quest to collect data on your weird little meat vehicle lol. What's been genuinely helpful, and what's just been interesting data?
Did anyone else have horrible pains in their calves as a kid that was just chalked up to “growing pains” ?
Hey everyone, I'm looking for some community-sourced wisdom! I got overly optimistic about my knees at the end of May and as per usual when I feel good, I ignored warning signs and overdid a workout... and messed up both my patellar tendons.
So for the past month, pretty much the only thing I can do without making the pain worse is lay in bed, but because of my spine/neck/elbows I cant even work on my laptop / do anything "manual" when I'm laying down.
(I also quit my job a few months ago to try to focus on improving my health so I don't have work to distract me and I'm just losing precious time/resources, hehe)
So, I've been a bit down in the dumps cause I love summer and I have so much free time now but I'm just lying in bed and getting weaker and it's getting to a point where I feel like I'm annoying all my friends and family cause I'm struggling to be my usually positive ironic self and I'm just sad and frustrated and not fun to be around. I'm trying not to put pressure on myself and at least enjoy this mandatory rest, but there's only so many TV shows I can watch before I feel like screaming lol.
So my question is - does anyone have tips how to stay mentally okay even when things are kinda crap? How do you frame things in your mind and stay, if not hopeful, then at least not outright depressed and, oh my god, how do you pass the time?? Any and all tips are welcome!!
Thank youuu and may your connective tissues be kind to you today <3
Heeft er iemand veilige oefeningen die je kan doen om zowel je benen te kunnen trainen maar ook niet belastend zijn voor je knie? Ik probeer nu stabiliteitsoefeningen om de spieren rond de knie te versterken. Vanaf het moment ik een squat wil doen meet een gewicht heb ik onmiddellijk een steek in mijn knie waardoor ik moet stoppen. Super vervelend, ik weet ook niet zo heel goed wat hypermobileit allemaal inhoud. Ik weet enkel dat ik het heb en dat mijn armen en polsen goed onder controle zijn en vrij sterk. Maar mijn knie lijkt na al die jaren nog steeds instabiel te zijn. (heb ook steunzolen voor ondersteuning en ben 26 jaar)
Hey y’all! I have TMJ and I am hyper mobile, so jaw popping isn’t abnormal. However, I was existing and talking on FT and boom! Popped into a lovely subluxation. Usually it works back into place pretty quick, but it hasn’t gone back and it keeps getting stuck randomly, I’m worried about it locking or dislocating. What would y’all recommend? It’s not very painful rn so I’m trying to fix it before it hits that point.
Additionally, I have a bite guard I wear to sleep for teeth grinding/TMJ.
I recently was diagnosed at 35 with hypermobility after years of having to see chiropractors to keep everything in line. I am starting to experience more joint pain in my knees, elbow, and hands. I also am having more issues with my neck and hips. For some reason my left side is more effected than my right even though I am right hand dominant. My insurance goofed up and dropped me due to an error but I have to wait 30 days for an investigation right when this is becoming more severe. I am wondering what anyone else has done to help alleviate symptoms. When I try to work out I always end up injuring myself. I’ve tried turmeric and fish oil for inflammation also.
Hey folks! I have some hyper mobile joints and sleeping hurts. I’m looking for some recommendations or advice on ways to help.
My shoulders are the main culprits. They don’t do what I tell them to do, which leads to them wibble wobbling all over the place and subluxing way too often. They go way to far in like every possible direction. The side of my neck is killing me as I type this as a result of overcompensating for my shoulder.
This problem is worsened by me being a side sleeper. I have tried sleeping on my back, I really have, I just can’t do it. I can’t get comfortable that way and then I don’t sleep.
So I sleep on my side, which makes my shoulders want to go every which way. This often gives me coat hanger pain and I have woken up to subluxations. (My family doesn’t believe that my joints subluxate, they claim I would showing more pain, but that’s a rant for another time)
Anywho, I just want advice on how to make sleeping easier on my messed up shoulders. What do I do?
UPDATE: Thank you all so much for the suggestions. I started using more pillows at different spots to help support my joints and it has helped a lot. It’s not perfect, so I might just have to suck it up and learn to sleep on my back, but it is still helping. Thanks folks!
TLDR: 24 f, my symptoms are chronic stiffness yet also everyday joints & body aches/sharp pains and feeling too loose everywhere, mild? slipping rib syndrome on both sides for ~2 months now, where should i go from here for tests/answers and symptom management? and where to start between a rheum referral, OMT DO, or sports medicine clinic?
- not hyper mobile afaik (only beighton score i meet is touching my toes)
- but i also can do almost the full splits on my right side without warming up (and i think ive basically always been able to do this since i was young), left side not as far but still way farther than the average non-dancer person
- ~past couple months been having aches and sharp pains every day and noticed my body started feeling noticeablely more loose and like my joints dont have enough “stuff” around them to support them well
- mild slipping rib syndrome started at least 2 months ago a lower left rib and then a couple weeks after i noticed a rib on the right side is also affected
- it’s not on the beighton score but the only other thing that seems unordinary is my toes are really flexible (can squish them into a c shape)
my flexibility doesnt seem to be an issue and my general strength is good when it comes to lifting and bodyweight exercises but my joint areas are probably lacking support/cushioning/strength etc???
anyone else have a similar situation, and where did you go to find answers?
my dr recommended me to look into seeing someone who does osteopathic manipulative medicine for the rib thing, also gave me a rheum referral, and my mom (a pediatrician) keeps recommending i go to a sports medicine clinic in our area.
right now im leaning toward starting with rheum to see if anything comes up in testing or something and trying to do strengthen exercises at home. is there anything else i should look into that might be helpful for my situation? i kinda went down a rabbit hole recently with learning about connective tissue disorders related with adhd havers as these issues starting increasing but i cant tell if theyre connected for me or just a confidence
Hello all, I’m undiagnosed yet even though I have been to countless doctors from different specialties and none of them have connected the dots. I have traveled to get treatment for these pains that I had ever since I was 2 years old, and the only reason I found out that I was hyper mobile was a couple of Instagram posts that described my exact symptoms: pain, restlessness, fatigue, elastic skin, flexible joints, etc.
Ten years ago I discovered leg compression wraps and I’ve been using (1) on my legs, feet, and hands as I needed. I didn’t t understand why it made me feel better so I mentioned it to the doctors I had visited but this was dismissed for some reason.
I’m now looking to make my office life easier, I bought leg compression sleeves and hand compression gloves but they help to a certain extent only and they once cause me knee pain after a full day of work. I have bought the only finger splints I found on Amazon to try them out but they don’t seem to help. So, I’m would like to know what you guys recommend for an office job, whether it’s compression accessories, splints, or pillows. And please excuse my ignorance, this is all new to me.
Hi all! Over the past couple of months I’m slowly coming to accept that I’m likely hypermobile and that a lot of my chronic pain is caused by my hypermobility.
Today I went to the Fourth of July parade and my knees, ankles, and feet were killing me. It felt like I was sinking into my knees and ankles and my feet started feeling like they were burning. The only way I could get relief was to roll onto my toes or roll onto my ankles. Now that I’m sitting and lying down, my knees and feet are still achy.
Does anyone know what causes these sensations? I’m trying to keep better track of my symptoms so that I can present them to my new PCP but I don’t feel like I have the language to describe them accurately. Thank you!
Hey,
im from germany, 20 years old and was hoping to get some other povs on the things i experience.
to clear things up from the start; i have no official diagnosis of heds or eds or anything of that sort but i have an official autism and ocd diagnosis, as well as endometriosis and my therapist suggested that i show signs of fatigue.
i experience regular joint pain, especially my knees, hips, fingers and wrists and i do definitely overextend my knees, fingers and wrists.
i also experienced what i wouldve called a (sub)luxated hip multiple times by now. i know about snapping hip syndrome but this just feels different for me and i do know what a dislocation/subluxation looks due to my girlfriend, who can subluxate her shoulder on command ever since she could think. the feeling i get when i "subluxate" my hip, literally feels like my thigh bone is slipping down inside my body (this only ever happened when sitting) and it hurts immensely, like close to crying (even tho i have a very high pain tolerance usually). then i have to very carefully "puzzle" my bone back into my hip and i can feel it "pop back in". during those "subluxations" i cant move my leg (except like my feet but the pain is too much to even think about that in those moments anyways) and have to use my upper body and arms to make things right/work again.
(purposefully put stuff into quotation marks here, to indicate that thats only how i describe it, since no professional has agreed on that yet)
since ive been young i had very bad back problems (also mainly due to my big chest) and when i experienced excruciating pain when i was 14, i made an appointment at the orthopaedic doctor for the first time. the waiting time was six weeks and by the time i had my appointment, the pain was already gone (it was about two weeks of not being able to put my body upright without crying in pain, i could barely bare the ´way to the toilet, let alone sit to eat or drink something). the doctor then told me i was too young for back problems and sent me home with the words "just take pain meds next time". mind you i was overdosing my pain meds and it did nothing against the pain.
this event happened a second time around the age of 17 but i was too traumatised from the medical gaslighting i experienced to go back to a doctor and just bared it at home.
so finally i decided to get a boob reduction a few months ago and for that i needed to see an orthopaedic doctor again. i went there, told him about all my problems, about the medical gaslighting i experienced in the past, how that plus my autism scared me of attending a doctors appointment again, how i struggle with communicating pain properly etc etc. he took a look at my pack, diagnosed me with scoliosis without mentioning it to me (i only saw it on my papers afterwards) and then wrote me a paper for my insurance (breast reduction) and some insurance payed strength training for my back.
i asked him to please also check my knees and hip because i have regular pain and my knees overextend (showed him that). he made me lay down and he then moved my knees into every direction except the one they overextend to (idk if that is normal but it seemed odd). he also only moved my hip and knees about 70% of what they are capable of moving into all the directions (again idk maybe this is normal) and then said my hips and knees are fine because i didnt complain about any pain while he did that. i felt misunderstood and explained what i described as "my hip slipping out" and he continuously said that hips cant slip out and that there is no way of me experiencing that. (my girlfriend also subluxated her shoulder in front of him and he seemed extremely unimpressed, just said "ok") he made me feel like i didnt know what i am feeling in my body and that my pain isnt real, so i started crying and tried to explain to him how i know the difference between snapping hip syndrome and a subluxation and that all i can tell him is that its definitely not snapping hip syndrome. he apparently felt very attacked in his job/knowledge and went "ok we are making an xray of both your hips".
when i came back from the xray he just showed me the pictures and said "see your hip is in the socket, its fixed in there, it cant dislocate, thats impossible". i just nodded, i was so done at that point. then he said it must be my sacrum hurting and that the pain is radiating to my hip and it apparently just feels like my hip is slipping out.
at that point i was fully believing him that hips dont slip out, that its physically impossible...when i arrived back home i tried to research and found a lot of proof that it does happen but still i feel unsure what to think of my experience and also the doctors appointment :/
i felt so down i tried to replicate what i experienced in my hip in the past and couldnt fully do it, what i achieved tho is that i (as a non professional, so idk maybe im seeing nonsense) can see my hip weirdly "popping out" and it "removing" my hip dips fully, like i can feel the bone wiggling "in and out" a bit (this is under less pain then what i meant to describe to the doctor tho but still somewhat painful and connected with immobility while in that state).
my bad for this incredibly long and probably clunky to read post but i really hope to get some new input on here
thanks to everyone in advance <3
Hey! Does anyone else suffering hypermobility get a desperate urge mostly at night that they need to stretch toes/fingers or just random parts of the body, accompanied by an inner dull ache? I'm trying to workout if it's something else causing this or just another gift from hypermobility 🫣
Hi! I just want to see if any of you guys deal with inflammation in the joints? I’ve had constant inflammation in my finger joints for about a year and a half. They hurt, are red and swollen. Some days are better than others. My doctor says the inflammation comes from constant micro trauma around the joints because of the hypermobility. He suggested ibuprofen but I don’t feel any improvement, and I’m hesitant to take too much anti inflammatory medication due to it being harsh on the stomach. Do any of you deal with similar issues?
Edit: I’ve read every answer, and I’m so grateful for all the wise words and advice, thank you so much!! I’m gonna respond to each and one of you as soon as I can!
istg if i get one more referral that just sends me in a circle im going to loose it. First I got to sports med because well I am an athlete. They say its growing pain and leaves me alone. I then go to my GP who sends me to rheum who sends me to PT who sends me back to rheum who sends me BACK TO SPORTS MED. No one looks at the whole picture. Everyone just focuses on the fact I have joint pain and am “very hypermobile.” No one asks about any other symptoms. No one will be able to find the right diagnosis IF THEY DONT LOOK AT THE WHOLE PICTURE. Its so annoying. The only referrals I probably need are GI and cardiac and well I don’t get those BECAUSE NO ONE ASKS. They walk in and immediately start talking about joint pain just because the little questionnaire doesn’t have the boxes for my other symptoms. Im so tired of this. At least sports med can get me proper bracing
Does anyone else relate to a lot sort of accumulating and happening to their body, but not having the money or resources to help myself?
I'm looking for other riders who suffer from hypermobility!
I was officially diagnosed this year in my mid 30s, and it's shifted completely how I understand and view my body.
In riding, trainers have always gone back and forth with saying I'm too floppy or too stiff in the saddle. I now know the stiffness was my muscles taking over where my tendons and ligaments weren't supporting me. Suddenly lifelong struggles in the saddle make more sense.
I am curious how other riders with hypermobility compensate to keep yourself steady but soft in the saddle. Do you use braces or sleeves regularly for your most problematic joints? What tips or tricks have helped you in the saddle?
I work out outside of the saddle with a fitness trainer who focuses on equestrians, and he's been very helpful at adjust my workouts to fit my body and riding challenges. It's a mix of mobility and strength exercises. Personally I found after a point yoga and pilates did not translate into gains in the saddle. I've also worked on and off with PTs, especially for my knees. What has helped you the most?
Finally, is it possible for a hypermobile rider to move up to the top levels? It feels like certain basic position concepts come so easy to most other riders, while I have to actively learn that sort of body control. What do you think?
ETA: thank you so much to everyone sharing their experiences! It's so nice to know we aren't alone, and I really appreciate everyone sharing their strategies!
Hello! I was diagnosed with ADHD last year and recently I found out it can manifest physically in different ways, like joint hyperextension. My elbows hyperextend (a lot actually), and so do my thumbs/fingers. I can also bend down to touch the floor in the way directed on the Beighton Scoring System. Not really sure about other areas/joints.
It makes a lot of sense now that I'm thinking about it. As a kid I was really flexible and could lay on my stomach and bend my legs back until my toes would touch my forehead. I also used to get sharp pains in my knee as a kid, but when I went to get an x-ray nothing showed.
In the past 5-ish years, my knees have been getting swollen every 4-6 months, but my knee pain is pretty persistent. Last month it was swollen for 2 weeks. I tend to lock my knees when standing and I have pelvic/sciatic pain, mostly because I sit criss-cross for prolonged periods of time or sit on top of one leg (because I can't sit still and rock back and forth as a way to self-soothe or bounce/swing my legs).
I thought this was a result of my pelvic pain, but maybe my knees have been hyperextending this whole time? I'm not really sure and can't tell because of how my thighs look compared to the pictures I saw online. Anyways, any help and advice is appreciated!! Thank you if you read this :))
Ok I just realized I typed all of this out but the subreddit doesn't allow pictures? 😭
I'm not really sure what to do anymore then 😞
Edit: I just noticed the typo in the title. I meant "help in" not "helping if" ahhh