#benign joint hypermobility

[thedeafzebra]

Venting

Medical rant ahead: I can’t get actual help for my EDS. My primary care has been trying for a year to find a connective tissue clinic in MA that will take me. She just wants to see if they have any suggestions as to how to help me. The first clinic she contacted said no. They will not take me because I have hypermobile EDS. Clinic #2 says they will not accept hypermobile EDS patients right on…

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#benign joint hypermobility #connective tissue disorder #ehlers danlos syndrome #heds #hypermobile ehlers danlos syndrome #Hypermobility

[astralechoes]

probably gonna have to look into getting some wrist splints cause trying to do even simple tasks like washing up is getting difficult nowadays; also gonna try and see if I can get an appointment with a rheumatologist so I can have some kind of answer about my joints issues.

#out of sync #but also would be good to like rule out early onset arthritis #while it is likely I'm gonna end up getting it eventually cause it does run in my family #I am only 31 years old #and I have been diagnosed with hypermobility it's just a spectrum of things and I'd like to know if it's benign joint hypermobility #or if it could be hsd or heds

[chronicallycouchbound]

Rating names/terms for Ehlers Danlos Syndrome:

Ehlers-Danlos Syndrome: 10/10 Lawful neutral, it’s the official terminology, lets you know what’s up

EDS (in all caps): 9/10 Sometimes confused with other unrelated conditions and acronyms but usually works

EDs (‘S’ is lowercase): 2/10 Usually refers to erectile dysfunction or eating disorders, which causes a lot of confusion.

Ehlers Danlos: 8/10. Good shorthand while still knowing what’s going on.

Earers Daniel’s Syndrome: 1/10. I have only heard this once, from an ER doctor. He said it to me as he turned away from his screen (which was pulled up to the Web MD page for EDS) and proceeded to mansplain my condition to me inaccurately. At least he tried.

“Eyers Dan—“ *waves hand around*: -5/10 I’ve heard this one a lot from medical professionals. I just know I’m about to be malpracticed and am already planning the quickest way out of the situation.

Zebras: 6/10 I like the imagery, I like mascots, I like the story (when doctors are in med school they’re told “if you hear hoofbeats, think horses, not zebras” but them zebras are missed) however, I have two criticisms: a) more rare conditions are out there, and zebras technically refers to any rare diseases, not just EDS b) I feel sad when I think about how it basically calls EDS the “I was medically malpracticed disease”

EDSers: 8/10 a cute lil shorthand for “people with EDS”. Easier to explain than the zebras thing

hEDS/vEDS/cEDS/including subtypes: 7/10 I like the idea of being able to know what your subtype is and find people in your sub community, HOWEVER my only concern is that it can feel (and used for) invalidating people without a genetically confirmed subtype because of inaccessibility. I haven’t had gene testing because I can’t afford it— but I have clinically diagnosed EDS, which has been confirmed at multiple hospitals by multiple specialists. I score a 9/9 on the Brighton, meet all major criteria, and meet almost every other minor criteria for EDS on top of that. But I don’t know my subtype yet. I don’t hate/dislike people who use this term and I don’t discourage it, but I do encourage mindfulness about genetic testing accessibility and privilege of access.

Bendy disease: 10/10 a silly goofy joke I say with friends “I cannot walk up stairs on account of my loosey goosey bendy disease” which is always funny to me. Even with my serious things like “my life threatening cardiac conditions are rapidly progressing” you add “on account of my bendy disease” and bam theres my coping skill.

Ehlers: 3/10 a step in the right direction, but it sounds like “yellers” and dismisses half of the team that described the condition

“Double jointed”: 1/10 I was told my whole life until I was 18 that I was just “double jointed” for starters, it’s medically inaccurate. You’re hyper extending, subluxing, or even dislocating joints whenever you’re “double jointed” in a joint. There is not two joints there (unless you’ve had x rays and for some reason genuinely do have two joints in that spot). I honestly hate this term and it’s incredibly dismissive of the pain that happens with EDS while also making it seem like a super power that we’re encouraged to do

Contortionist: 1/10 [NOTE!!! some contortionists DO NOT have EDS and can just bend like that. Some have benign joint hypermobility. But many contortionists do have EDS.] In the context of people with EDS, I hate this term. It’s often the first thing people jump to when I explain my condition. They see my crippled ass in my wheelchair/powerchair or limping around with my cane/crutches/rollator, usually in multiple braces/supports (and thats just external noticeable-to-everyone things, let alone if you hear any aspects of my daily life) and their first thought is: “wow!! So you can entertain me like it’s a freak show!” And not “holy shit dozens of dislocations per day and countless subluxations per day must be excruciating”. I did contortions when I was younger to get praise and due to peer pressure. Fuck that noise I will not be your ugly law era freak show creepy cripple p0rn. Fuck everything to do with that actually.

#chronically couchbound #cripple punk #cripplepunk #ehlers danlos syndrome #ehlers danlos life #ehlers danlos awareness #ehlers danlos zebra #ehlers danlos #ehlers danlos problems #hypermobile ehlers danlos #ehlers danlos type 3 #eds problems #hypermobile eds #heds #heds tag #probably heds #double jointed #contortionist #freak show #cripple problems #cripple pride #angry cripple #crip punk #crip theory #disability #disabled #cripple posting #cripple life #cripple shit #sick crip

[dissociacrip]

this is okay to rb i think, especially if you have anything to add or any insight. idk. i'm tagging this the way that i am because i'm seeking community/connection(tm) or something

hypotonia is not like. a rare thing. not really. but i do remember my OT googling what it was.

low muscle tone/hypotonia may technically be a symptom rather than a diagnosis (barring benign congenital hypotonia, which afaik is controversial) but it's the closest thing to a "diagnosis" i've been given for some of this stuff because the potential cause of it hasn't been investigated and i guess it's not exactly urgent since my particular case isn't severe and doesn't seem progressive (hypotonia can be progressive & is involved in some progressive and degenerative conditions.)

but i wish it was talked about more and i wish more was known about it works and how it affects bodily function and i wish what we DO know about it was more accessible to the public when it comes to those who suffer from it. it's also kinda hard whether to KNOW you have it or not since its "signs" have so much overlap with other conditions that aren't related to muscle tone. it ranges a lot in severity too. and there's two different types (central and peripheral.) it's linked to dozens of diagnoses too which is why i say it's not uncommon.

but also i guess due to the complexity of how it affects the body and its lack of distinctiveness with most of its symptoms makes it kinda...hard to talk about? and i imagine w/ some people it's hard to distinguish the effects of hypotonia vs. their other problems. issues with chewing, writing, breathing, speaking, posture, coordination, etc. can be due to so many different things ranging from mental to physical. but it's not always something that can be lumped together w/ those other things because there's "my muscles don't work" in a terms of chronic muscular pain vs. "my muscles don't work" in terms of, like, they lack the ability to adequately support the body and bodily movement. if that makes any sense.

which ranges from someone like me where having to hold myself up sucks + mild motor skill/coordination impairments and mild developmental milestone delays, but others never meet those milestones or need assistance with things like breathing and ingesting food.

it's not a diagnosis but it can affect the body in complex ways like muscle shortening and stiffness due to our bodies having to compensate in weird ways for the lack of adequate tone (esp those of us who grew up with it), tibial torsion and femoral anteversion, flatfoot and knock-knees, reduced cervical lordosis sometimes leading to bruxism and occipital headaches, etc. PT centered around muscle strengthening to correct my "improper" movement and stuff.

and there's other stuff that can come with it that people like to consider """gross""" like drooling, constipation and other gastric, and pelvic floor dysfunction which can result in incontinence/problems with bladder control. muscles are involved in a lot of things. wild.

i'm rambling but i just wish more people talked about it. all i really have is that one interview that surestep did with meagan veracha, who has hypotonic cerebral palsy, about living with hypotonia as an adult.

maybe i wouldn't care all that much if i had a diagnosis that would "explain it" but "i might have gHSD/hEDS" doesn't rly do that for me because ppl in those communities obviously focus a lot on the joint dysfunction aspect (because those 2 conditions center around hypermobile joints so that's just natural, it's not a bad thing per-se, barring other problems that those communities have) but for me my case of symptomatic generalized hypermobility is secondary in how it impacts me vs. my muscles being bad at their job and my hypermobility might even be secondary to my hypotonia anyway.

dyspraxia/DCD (some people with it have hypotonia but not all - i thought i had it before i was told i was identified as having hypotonia when i was a kid...over two decades late) is another guess but again that centers more around coordination than things like "anything other than lying in bed is hard on me because my muscles don't support my body like they're supposed to."

maybe muscle tone is a complex medical concept that shouldn't really enter the public lexicon but i have no other language for it.

#hypotonia #cripple punk #cpunk #physical disability #physically disabled #j

[thebibliosphere]

Okay okay so, a fellow hEDS friend and I were talking about how doctors initially wanted to diagnose us with Benign Hypermobility and we got sidetracked complaining about the term because like. Even if we didn't have EDS the hypermobility still causes Pain which doesn't feel Especially Benign. So I'm wondering—do you have any clue what the "benign" in "benign hypervisiblity" refers to? Is it just that it's not indicative of another condition?

Benign hypermobility syndrome is an outdated diagnosis that no longer exists. The new classification is Hypermobility joint syndrome of HJS, which is not classified as benign because it can cause a lot of pain and injury.

Any doctor still trying to use BHJS to deny patients access to care is using out-of-date criteria.

[trans-cuchulainn]

god i was discussing diagnoses with someone earlier and complaining i got diagnosed with "benign joint hypermobility syndrome" at 17 (benign my ass, i was actively disabled) and they were like damn they didn't even call it HSD and I was like. well. they hadn't invented HSD yet. this was 2013 they rejigged it all like 2-3 years later

and then they were like "I was still in primary school in 2013" and then added "i started secondary in 2016" and I was like. what the fuck

anyway that's how i found out they were 19

#BABIES!!! I AM SURROUNDED BY BABIES!!! #personal

[niuniente]

I stumbled upon above image from this blog and went “Huh, that’s exactly how my fingernails grow. I know it can be a sign of a severe health problem but doctors haven’t found anything and my fingernails have looked like that for my whole life”. (I’d like to grow my nails long but I can’t because the pressure of the curving is too much and painful.)

(and here’s a pic of healthy nails, growing as they should)

I checked the origin of the photo and found the blog I just mentioned. It’s run by an English person who was diagnosed with BJHS - Benign Joint Hybermobility Syndrome. I read all the person’s experiences and symptoms and yikes! That’s me! (with overlapping IBS and iron deficiency which can’t be treated)

“Benign meaning “it will not kill me,” not that it’s all fluffy-kittens-and-sunshine. Joint Hypermobility meaning my joints move too much in the wrong ways (yes, “double jointed,” though of course I have only a single set of each joint). Syndrome meaning that this problem creates a cascade of other issues throughout my body. BJHS is a connective tissue-based disorder. Somewhere along the line, my genetics have made it so that I don’t either produce enough of, or don’t process completely, the protein collagen. Collagen is like the scaffolding for every connective tissue in  your body. Connective tissues include: skin, muscles, ligaments, tendons, hair, bones, eyes, blood vessels, spinal discs, cartilage, the intestines, the heart, the liver… basically, everywhere. In fact, I can’t actually name a part of the body that doesn’t contain it.”

Here are the blog person’s experiences VS my experiences

Insomnia: did I mention the hyper-wired, jazzed-up, over-talkative, never-shuts-down nature of my brain? That I get more hyper the more exhausted I become? That I used to sleep so lightly that my roommate in college could wake me up by writing in her journal? Did I mention that, without the right meds, I probably get one or two nights of truly deep, restful sleep… a year? Me: Yup! I sleep so slightly that when I had a flatmate, I woke up when she touched the handle of her door. Though my insomnia isn’t as bad as this persons, I do regularly need melatonin to sleep normally. Otherwise I can’t fall asleep until 8am, even if I was super tired during the day. Otherwise I sleep well.

Liver metabolism: I have serious problems processing medications, as I have a liver that is slow to metabolize chemicals. I cannot take a very long list of drugs, including most pain killers. This also includes naturopathic treatments… even my own hormones! I get side effects (or no effects) with everything I take. As my naturopath likes to say: “You just walk by a chemical, and it affects you.” Me: My shiatsu healer said that my liver is not working properly. I have hormonal problems. Even with the IUD I still get them monthly, though IUD has improved my health tremendously.

Complex PTSD and anxiety: like the stuff combat veterans get, only not quite. Caused by excessive exposure to stressful situations that one cannot escape, like, say… a bully at work (not saying that was my situation. Just as an example…). Though I received great treatment, people with BJHS are prone to stuff like this: fight or flight, remember? Me: I’m getting better but I’m 24/7 anxious more or less. I hope I can continue having anxiety medication for “bad things” like traveling. Do you know how annoying it is that you love traveling and have traveled the same journey for 10+ years and your anxiety still says “Okay but this time, something bad CAN happen!!” I was also pretty much mute for 12 years. My muscles are tense 24/7 due hyperactive nervous system and anxiety.

Heart palpitations: yucky, but harmless Me: Sometimes they happen, ugh...

Irritable bowel syndrome Me: TELL ME ABOUT IT QoQ The IUD has helped with this, too, as apparently I also have endometriosis which causes IBS to some.

Sinus problems and severe allergies (go immune system, go!) Me: YUP! Just got finally an allergy medication after sneezing daily, 20 times a day for 30 years. I new life has began! My nose isn’t running! I don’t need to have a truckload of tissues everywhere!

GERD (bad acid reflux) Me: And it gets worse with hormonal changes... I’ve got 4 different medications for this.

Poor balance and an inability to fully understand where my body is in relation to everything else. Me: Not really my issue but I do get clumsy with hormonal chances. It’s a common joke between me and my sister by now.

An inability to regulate body temperature, including both freezing extremities and excessive sweating, sometimes at the same time Me: This is genuinely THE WORST! It’s -30C outside, I go there half-naked, walk for 3 minutes and I’m sweating like a little big. All my clothes are trenched with sweat in 10 minutes. I’m inside and it’s 23C and I need wool socks and wake up with a sore throat because it’s too cold. I also “catch” the temperatures easily and shower (or sauna) is then the only option. If I catch “cold”, I will not warm up no matter how warmly I dress and sit in front of a heater. If I catch “hot”, I will not cool down even if I sat in front of a fan naked with ice-cubes on my body.

Hair that breaks easily and nails that are bent and curl off the tips of my fingers, as well as fingers that wrinkle like I’ve been in the tub for days Me: Yes. I need to use hair oil daily and baby oil for body and my eyes are like Sahara desert. Nails curve and my fingers are always wrinkly.

I have painful big toe joints, so no high heels for me. Walking long distances can be a disaster, so good shoes are very important. I suffer from plantar fasciitis, which means the bottoms of my feet hurt, especially in the morning. Me: Same. I went to doctor to complain how my toes hurt but they couldn’t find anything. My soles hurt extremely easily - like 5h walking and I’m already in pain. Doesn’t matter if I’m 45kg or 100kg in weight, it still hurts the same. Fingers hurt all the time.

My immune system is hyper-active as well, mounting elaborate, full-scale mucus or lymph node or other responses to mild colds and viruses. I’m sick a lot longer than normal people, and a lot more seriously, yet it’s not due to a poor immune system, but rather one that’s too strong. Me: Same. Last time I was sick was in 2017. It was just a normal cold but it took 4 weeks from me to recover. I was bedridden for a week. I’ve not gotten covid and despite my shitty bowl I don’t get sick easily. I don’t remember the last time I was sick prior 2017. Probably in 2007? With a bit runny nose though.

Loose connective tissues mean joints that move too easily, which means pinched nerves and pain. Think about how it feels when you throw your back out, or get carpal tunnel syndrome. Now imagine this feeling all over your body.  My nerves get pinched, causing several types of pain. I get back pain, obviously. I get numbness and mild paralysis in my thighs and hands. I get weakness in my legs and arms, and sciatica/restless leg sensations if I sit too long. Worst of all, I get parasthesia in my fingers and toes (that’s the tingling, painful sensation you get when you sit funny and your foot goes numb, then starts to wake up). I have this sensation, in varying degrees, all the time. Me: I’m literally in pain all around my body from neck below, for 24/7. Only the level of pain differs. I get easily numbness to arms and legs. I’ve started to suffer of restless legs and middle body with heavy jolting, especially if I’m tired. If I’m stressed and go to sleep, my nose and lips switch a lot.

#niu's life #over the years I've tried to figure out what's wrong #but it seems - also by docs - that there's plenty of wrong #I guess whoever assembled my body must have done it on Monday #after a rough party weekend with eyes closed

[morphomixz]

Eclipsed in Paris Pt 4 Miraculous x Reader

9:26:36 AM Thursday, April 18th Paris, France

After the first hour was up, we had maths. The teacher assigned a group project, leading to me "working" with Chloe and her minion Sabrina. By working, I mean Chloe telling Sabrina t do all the work while she gushed over Adrien Agreste, her childhood friend. Aside from Chloe, the only person who's tried to interact with me has been Sabrina who ultimately said to stick with Chloe.

Anyways, apparently, this class is learning the French equivalent of Algebra 1 in the U.S which isn't terrible. The girls I sat next to in Ms. Bustier's class have been glancing over here and whispering to each other since. If the people here are as judgemental as they are in America I may be better off returning to the U.S. The only thing that prevents me from believing this at the moment is the old man from earlier. Hopefully, he's gotten where he was trying to get to. For now, I guess I'll just look out the window.

10:39:10 AM P.E Class

I finally got away from Chloe and the two glaring girls long enough to take a breath. P.E is not my favorite class in the world, but it may grow on me since it gets me away from, well everyone who seems to have a problem with my existence. Today is just the flexibility test for the school year. I actually suffer from benign joints hypermobility syndrome so this shouldn't be too bad, well at least not until my doctor sees me next. She keeps telling me to reduce how much I push my joints so that I don't put myself in pain anymore. 

Anyways, it's partnered so I actually have a chance to talk to someone other than Chloe. My partner is a girl from my class, I think her name's Alix.

"Uh, hi. I think we're partners." I awkwardly said. 

"Yeah, just don't slow me down." was her response. 

It wasn't exactly the nicest response, but it also didn't seem to have any animosity in it. 

" Alright class, get into the sit and reach position. Your partner will push down on your back as you stretch with LIGHT pressure." came the first command from the teacher. 

Alix and I actually worked fairly well together. We talked a bit during the exercises about the school, who's who in the class, and Alix's favorite sports. I told her about New York, part of the reason I came to France, and it seems she came to a conclusion about me. Hopefully, it was a good one. 

11:45:27 AM Lunch Break

We're supposed to go to lunch at home or in the cafeteria for an hour. Chloe had something brought to the school for her, and I headed to the cafeteria with Alix. She invited me to sit with her, a guy named Kim, and his friend Max. I ended up with a tray with a fruit salad, orange juice, and a questionable-looking pear for lunch. 

"So, you're Y/N Bourgeois? The idol?" the guy who Alix called Kim asked. 

"Yeah, that's me. Though I'd appreciate it if you didn't make a big deal out of it." was my response.

"And, you're Chloe's cousin?"

"Yep. Though she and I only reunited recently. I've been living in America since I was six."

"So, you have been influenced by her very little?" was the question, Max asked. 

"Under her influence, yes. Her mother is a different story." I replied.

"Alright, alright guys. We're here to eat lunch, not dissect her traumatic backstory." Alix said, setting down her tray, to which I smiled at her. A true genuine smile, not one of my practiced model smiles. 

By the time lunch was over, I already had three friends and a permanent place to eat lunch if I wanted to.

12:53:41 PM Science

My next class had me a bit worried. Apparently, the teacher isn't the best with new students... or old students...or students in general. 

Anyways, in this class, I'm sat next to a very tall guy. According to the teacher, his name is Ivan. He seems intense when you look at him, but I'm sure he's a sweet guy when you get to know him. In fact, he seems very shy in comparison to everyone else. We were only taking notes on chemical compounds today, so it wasn't a terrible class. The teacher didn't put up with anyone messing about, but I made eye contact with Kim and couldn't help the small giggles that left my mouth. Chloe's been blowing up my phone all of the class. Apparently, Sabrina doesn't quite get chemical compounds and she thinks I may. be able to explain it to her, so she can do Chloe's homework. I guess I'm doing a slight tutoring session after school. 

2:16:36 PM Art Class

A little under three hours left of school, and I finally reached a class I can get into. I can technically do whatever kind of art I want in this class so I went over to the drawing table. Alix is doing so form of street art with spray paint, the girls from earlier are using alcohol markers, and Chloe's in the corner on her phone like always. I guess I better start working on designs for my new line like Auntie would want me to. I started with a fitted bodycon silhouette and shaded it in with a variety of reds, adding layers of black around the bottom to form a filled-out skirt.  Apparently, my presence finally got to the two girls from earlier because one of them came over and just stood in front of me.

"Can I help you?" I said, rather peeved that she was blocking my sunlight but also because she likely already assumed my personality. 

"Yeah, you're Y/N right? Chloe's cousin?"

"That would be correct. And you are?" I could feel my left eyebrow arching.

"I'm Alya and my best friend over there is Marinette. We were wondering if you were the Y/N Bourgeois who owns the fashion label "Serpentine" and does all that idol work?" 

"I am. Is that all you wanted?" I replied. 

I know my tone was rude but these girls have done nothing but glare and whisper about me all day. 

"How about you come to our table and sit with us? Marinette does some designing herself and I think you guys could bond over that." came Alya's reply. 

So I went over and joined them. Marinette apologized for the glaring. She apparently assumed I was just like Chloe but after seeing me interact with Alix, Kim, and Max she decided otherwise. She needs to work on that. It will be her fatal flaw if she doesn't. 

The two of us exchanged numbers and began showing each other our designs. Her designs are exquisite. Auntie would be impressed for sure. However, she seems awful shy about showing them off. 

3:30:57 PM History

I have 1 hour until school is over, and my last class is history in Ms. Bustier's again. I sat at the back of the class next to a girl named Lila. She immediately pulled out her phone and asked for a picture as well as my phone number. She's the only one who's made a big deal about my status all day. However, I took the picture to be polite and she tagged me in it. My Instagram began blowing up with the comments under it. Apparently, this Lila was the one I was rumored to be hanging out with. Anyways, today's lesson was on Ancient Rome, including mythology. Lila kept trying to distract me with a conversation but I wanted to remain focused on Romulus and Remus. She began blowing up my phone with texts which made me immediately regret giving her my number. 

4:30:15 PM Outside the School

Well, I made it through my first day of school without a major incident. Now, Chloe and I were waiting for the limo to show up. She's been talking to Adrien for the last 10 minutes, and he looks particularly uncomfortable with her clinginess. The limo finally pulled up, followed by another one, which I assume is Adrien's. When we got into the car, then came the beratement. 

"You shouldn't hang out with Marinette Dupain-Cheng or her friends. It's bad enough you're hanging out with Alix and Kim."

"Chloe, if I wanted your advice on friends, to which I've never been allowed to make that discernment myself I would have asked. I'd appreciate it if you dropped it because I want to be able to make decisions for myself for once in my life."

Okay, a little harsh, even for Chlo but did I lie? My first boyfriend was even chosen for me so I should get to decide who I hang out with at the minimum. At least she dropped the conversation. I headed up to my room and dropped my stuff on the couch located at the center of the room.  However, there was a strange box left on my coffee table. 

I opened the small box that had a necklace, and a small light came out of it. When it disappeared, a small bat-like creature was floating in front of me. 

"I'm sorry to say this but, who are you?"

#adrien agreste #alix #chat noir #female reader #kim #luka couffaine #marinette dupain cheng #miraculous ladybug #x reader #Eclipsed

[wheelie-sick]

sometimes I feel like everyone talking about hEDS in my notes forgets that I have it

I get people explaining how hEDS can affect people and it's like 😐 I know. I have had numerous other complications from hEDS that have considerably disabled me. I am well aware of how hEDS affects people please shut the fuck

and then I also get people saying "people saying they have hEDS just have benign joint hypermobility" and it's like 😐 I am right here. my issues are not "benign joint hypermobility" please shut the fuck up

[astraltrickster]

The more I dig into how to adapt the more I realize just how Much my hypermobility is...

But what I realized today is where it's not.

I mean, it is, but it's WAY less significant than most of my other joints, especially in my hands.

My thumb IP joints have only SLIGHTLY more range of motion than normal.

You know, the joint where some 25% of people have benign hypermobility.

I feel like I'm being pranked by the universe itself.

#personal #disability #like when i do the thumb-to-forearm test i can push the ENTIRE thumb side of my HAND into my wrist #i can do the typical thing of hyperextending my PIP joints while flexing my DIP joints #i can cross ALL my fingers AT ONCE #im trying to find adapted exercises so i can hopefully avoid wrist and elbow surgery for my nerve entrapments #but instead i just keep finding...more and more information on how FAR from normal i am #so my need for a nice set of ring splints only grows more apparent... #but. there is one joint i probably dont need them for lmao

[ofdinosanddais1]

I get surveys after each visit for me to fill out and I filled it out with a description of the experience with that doctor. I can accept, after a thorough investigation, if it's just benign joint hypermobility. But that was NOT a thorough examination. I reject his deduction. He did not give me a thorough examination. He twisted my words. He ignored my pain. I know some people have more extreme problems than me. I can do things other people can't. But this is a fucking illness. This is not a "trait", it's an illness.

And to think the doctors were learning. To think I could finally get help.

#medical trauma #joint hypermobility #medical gaslighting #bad doctors

[potsiefaerie]

Subluxed my thumb trying to screw on a water bottle lid two hours ago, and even after an advil and trying to be careful, I still couldn't lift my kettle just now, so I taped it.

That's like. Four pounds.

I'm glad my spouse was home.

But tell me again how this joint hypermobility is "benign"... 🙄

(I still think it's probably eds, considering the rest of my cluster, but I need to find a rheum who actually gives a shit)

#spoonie #chronic illness #joint hypermobility #eds #subluxation #thank gods for athletic tape and YouTube tutorials #my life #personal

[plaguedocboi]

oh hey, similar hat i think! i saw your tags on the "short people can fit places" post, about having a connective tissue disorder, and i can relate. i have benign hypermobility, so i can subluxate stuff with no pain or anything,

(unless i put a whole lotta weight on it, bc its not built for distributing weight in a position that its technically not supposed to be able to be in to begin with. then it can hurt a little)

and a few times ive dislocated joints (due to external circumstances- anyone wouldve experienced a dislocation in those situations) and probably wouldve had to go to the hospital if my skeleton was normal, but instead it just popped back in and was sore for the next while but like, otherwise fine, no medical attention required

(ive got some scar-bruises from my skin not being able to take it in stride as well as my bones, which is. something i did not realize could happen)

it does make me a bit extra wobbly tho, since like. its harder to balance a slinky straight upright than a can, its just got more potential to bend over sideways since its inherently more flexible. but its not a big deal, and honestly i think the, yknow, dislocating-and-then-just-walking-it-off more than makes up for it, for me

anyways, since my hypermobility disorder doesnt require a "cure" or anything, theres less research on it, because its more important that folks with like, degenerative connective tissue disorders get the medication they need-

mine (benign, just born like this) doesnt hurt, but theirs (degenerative, their body isnt Supposed to be like this) does. but i think as a result of the less urgency, less research, and less visibility, people with my situation are less likely to get diagnosed in the first place

so its not often that i see another person with something (that i believe is) somewhat similar to what ive got! so i thought id pop in and say hi, so uh. Hi

Fellow floppy boi solidarity

#asks

[tashabilities]

Instagram does it a fuckin gain

The hypermobile Ehlers Danlos they don't wanna say I have,

When I'm autistic and I have 4 out of the 5 main symptoms of Ehlers Danlos,

And Ehlers Danlos is an autism comorbidity,

But since I didn't have all five of the main diagnostic criteria, EVEN THOUGH I ALSO have a few of the secondary criteria,

They said i just got a benign hypermobility?

I just read a post, posted yesterday, from this IG account called thehypermobilechiro talking about why GI issues are so common among people with hEDS.

Bitch.

Nausea, bloating and acid reflux have been issues with me my ENTIRE LIFE.

You mean there's research connecting my gut to my flexible, loosey goosey ( (c) Brandon) body and muscle pain?

My connective tissue disorder--which is prolly a remix of the degenerative joint thing my dad, my sister AND my brother have--messes with my digestive system.

I wonder if this rhomboid is really an injury or if it's muscle inflammation from the Ehlers Danlos they don't wanna say I have.

[practicalsolutions]

Benign joint hypermobility!

It's not EDS. We're good!

#ooc #except for the joint pain #it's called benign but it can still cause problems #but if i fix my posture i could probably start seeing a difference

[consolecadet]

The genetics person told me that if I don’t have hEDS, they might diagnose me with benign joint hypermobility, but that “benign” didn’t mean they were trying to act like my pain wasn’t real or a problem, and that in fact the main symptom of it was joint pain. I thought that was nice of her.

#just pre-validating me to avoid invalidating me #I guess? #boring text posts #medical