His kid had a christening. Dude apparently turned in a born again Catholic since last time I saw him and he kept asking how often I attended church and if I was praying enough because if I did that then God would heal my afflictions so if I wasn’t doing it enough I should do it more so God would perform a miracle.

That pissed me off so bad it nearly got violent. Like, I’m Catholic too but I’m not like that and fuck did it feel insulting to hear that. Like all this is my fault for not praying hard enough.

Like buddy I wished it worked like that but it don’t. This ain’t going anywhere whether through prayer or not. It’s not gonna suddenly make my collagen function properly.

Ugh I just can’t.

I’m 19F and was recently diagnosed with hEDS after struggling with it for years, and it’s only getting worse. It mainly affects my knees, and any physical activity prompts insane amounts of pain. My knees buckle and pop out of place when I walk, and I deal with debilitating chronic pain daily. I’ve recently been having more and more pain and discomfort from just standing! I’m only 19, and im really scared that in the near future I won’t be able to walk comfortably. I’ve done physical therapy, but none of it has helped. I feel so alone and so exhausted..

My wrists give me a lot of grief and I T-Rex really bad when I’m sleeping. All of this leads to awful pain in my hands, wrists, and forearms.

I’ve tired a variety of braces and prefer lightweight band braces for the day, but need rigid and comfortable support at night.

These affordable braces have been amazing. I don’t fuss with them when I’m sleeping, I don’t sweat or overheat, and am waking up pain free.

… and they come in a bunch of fun and cute colours!

Purchased from Amazon Canada 🍁
https://a.co/d/0dGuB5mb

I know APS is under diagnosed but I was wondering if this was common among patients with Ehlers Danlos. I've been diagnose with the hypermobile form but didn't get tested for the vascular form and other subtypes (EDS doc said it was unlikely) I also have severe endometriosis, Long Covid, MECFS, dysautonomia, POTS and MCAS.

I got my auto immune testing back and the anti beta 2 glycoprotein igM are slightly elevated (13U/ml) N= <7 and the igG is 8 which is also limit range. Last time I got it checked I only had igM of 11 and my doc said you don't get diagnose with only one marker and it was probably false positive. She's on a leave for the rest of the month so I don't have any interpretation yet.

I'm only 28 and APS is a scary diagnosis because I know nothing about it. I have no other auto immune markers and tested negative for Lupus and other conditions.

On my tik tok you can see in a video where my hands hyperextend. Someone messaged me on tik tok asking if I could send them photos, videos, etc, of my hands doing this. They asked I’m not joking like 10 times saying things like “I just want to make sure it wasn’t a filter” “Google doesn’t show anything” with me continuing to try and explain that it’s not good for my joints and I wouldn’t be doing that.

I know I shouldn’t have let the interaction go on as long as I did but I genuinely thought it was just someone curious about the condition and I love educating people about what we deal with every day but this just felt…weird. I ended up blocking them but has anyone else ever had an experience like this?? I kinda chewed them out for not respecting no or my bodily autonomy which I feel a little bad about but it was just so strange?

hii so basicallyy i’ve always had weird health/body issues my whole life BUT a few years ago i became disabled almost instantly after getting sick. i just recently got diagnosed with POTS & getting further work up for other issues too due to some unusual test results.

anyways one of the first things i was recommended (by a friend who has eds) is to look into getting tested for eds. i brought it up to my doctors who said they dont think i have it, mainly because 1. i’ve never had a dislocation and 2. i dont have the traditional bendiness.

so i kinda ignored it for awhile until i started going to physical therapy and my PT said she definitely thinks i should be pushing for further evaluation.

for my actual symptoms:

- my PT said there’s possibly CCI since i described my neck pain as constant for years and feeling like a bobble head
- my elbows and knees do hyperextend a bit (just not super noticeably)
- double jointed on all my fingers and most toes (they bend backwards at every knuckle pretty much)
- i can “pop” my hip out of place
- i can also kinda pop my shoulder out
- always in pain… like… everywhere

for my “non” symptoms (that my dr said i don’t have EDS because of this)

- i cannot touch my thumb to my wrist
- takes some effort to go full palms on the floor
- again elbows and knees just don’t extend noticeably enough

from what i’ve heard, pursuing a diagnosis can take years anyways but idk i guess im just conflicted on whether this even seems plausible or not?

also was wondering, i see a lot on social media about eds, but im wondering if theres any differences with how it presents in the asian community? im east asian and i know that some conditions present differently depending on race

edit: should probably mention literally 3-4 weeks ago my shoulder popped out and still hasn’t gone back (dr did xray which was fine) and then a week ago my hip felt like it popped out or something so the 2 problems at once is what made me wanna post about this cus i’m in so much pain rn and no drs have been able to help 😭

What are your favorite knee braces to prevent hyperextension? I work clinic all day on my feet and I am looking for something I can get on Amazon hopefully but I don’t want to spend money on something that won’t work for me. It needs to be able to fit under my scrub pants. I’m trying to be mindful about hyperextending at work but it’s hard to keep that in mind all the time with a busy schedule.

So I have hEDS and fibro. My fibro is really severe and I'm functionally disabled but unfortunately I still have to work. I work on the computer because I can't work on my feet anymore and it causes severe/wrist pain so bad I will go 3 days without showering or cooking dinner because I can't bear the pain after work.

After waiting for 2 months I finally started OT but I'm not feeling very confident in my treatment. She gave me three exercises to start with, one of which is forearm pronation and supination while holding a half full water bottle. My fibro manifested after I sprained my left wrist at work 2 years ago and ever since that joint has been extra unstable. I don't experience subluxations that I'm aware of but every single time I move from supination to pronation my ulnar side of my left wrist pops so loudly you can literally hear it across a room. This was happening in front of the therapist and she goes "Is that your elbow?" And I said no and showed her where it was coming from and told her its a problem area.

My thing is, I thought I'm not supposed to do exercises that make my joints pop? I specifically read that after I was diagnosed with hEDS. Should I be doing this specific exercise if it is making my wrist do this?

On a side note, she said I'll also be doing Graded Motor Imagery which has little to no clinical data backing it up as an effective treatment for fibro, so I guess I'm just feeling unconfident in my treatment overall.

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Hello zebras ❤️ Glad to find this sub. I've been in chronic pain since childhood and tried many painkiller even to the point of struggling with a opiate addiction in late teens (tramadol). I wasn't diagnosed yet but it's *very* likely eds and endometriosis. I occasionally use wrist braces and lean on things all the time, been thinking about getting a cane. I use ibuprofen, paracetamol,nimesil,dexoketum,algifen, heat therapy and other pain relief daily. Not together of course. I'm getting worse lately, just hit 25 yrs old and the pain seems to not care at all about the painkiller regime any more...I'm spending over two hours on the floor daily. I don't even have a job I'm taking care of a household. I currently can't go to a gp/specialist or afford more expensive devices because I'm moving countries. I know this is kinda a loose ramble,but any and all advice will be appreciated ❤️

Hi everyone I'm about to have surgery and want to know which pain meds worked for you without crazy side effects? Lidocaine, toradol, morphine, and opiods don't work on me. Dilaudid is the only thing that gives me pain relief but it lowers my oxygen and blood pressure/ heartrate to dangerous levels (I have POTS) and I always stop breathing and keep forgetting to breathe, even when they give me the lowest diluted dose. Is there anything similar to dilaudid that doesn't lower oxygen levels?

It happens. Not sure what I'm going to do.

I randomly deal with subluxations in my hip/leg when I sit down. Unsure if there’s anything to do to prevent it. Curious if anyone else has this weird problem.

This is a free event for those interested in HSD and hEDS research. (I'm so grateful when events are free and open to those living with EDS.)

The event is November 5.

More information can be found here:

https://thenorrislab.substack.com/p/youre-invited-norris-lab-research

I had a hip labral tear repair surgery in February and as per usual with me - had a hard time with PT. I wasn’t progressing or healing as expected.

I just had another MRI and it shows my labrum is retorn. It’s not the surgeon’s fault per se but I’m pretty sick of doctors not understanding EDS. I previously had two elbow surgeries that didn’t go as expected either.

Feeling frustrated.

Had my first day of actual physical therapy today. Not the evaluation day.. but the first session of full exercises and workouts. I then had to come home and work an 8 hour shift. After work I fell asleep within an hour and stayed asleep for about 12 hours. I've woken up feeling refreshed and not over tired as if I slept too much.

Would you consider this a normal response for us or was that too much? I don't feel sore, yet. That doesn't tend to hit until end of day 2 into day 3 after an activity of sorts.

I’m a med student and write like easily 30-50 pages of notes a day and I got a wrist brace to help with fatigue but it’s too bulky to comfortably maneuver my wrist to write eloquently. does anyone have any lighter support brands that don’t feel like a cast 😭

Hi there,
I would love to heard anyone’s experience with MCAS and pregnancy and anything I should know or be prepared for.
I was reading how anesthesia and epidurals can cause flares and how it can happen in post partum.
Before I was pregnant my MCAS was controlled for about a year plus and stabilized. Since I have been pregnant it has been acting up. I know I am in the first trimester but I have been in more pain than normal… I also have hEDS and POTS. I heard some people feel better during pregnancy? Is it in the second trimester? The first is super hard and I have felt really ill and because of being overheated it’s flaring my symptoms…. Is there any hope?

Has anyone had experience with finger splints/orthoses for EDS?

My fingers frequently slip out of joint, and lately they have become really sore and painful. I'm considering trying finger splints to help stabilise them.

For those of you who use finger splints, I'm wondering:

Have your fingers become less painful after wearing splints for a while?

Is there hope that the pain will improve over time with proper support?

What do you think causes the fingers to become so painful? Is it repeated subluxations, strain on the ligaments and tendons, joint irritation, or something else?

Do you wear your splints all day or only during certain activities?

Where do you get your finger splints from? Are there any recommended online shops or brands?

I don't have an official Ehlers-Danlos syndrome diagnosis yet, so I don't currently have access to prescribed assistive devices. I'd really like to get some finger splints to help with the pain and instability. Are there any good options I can buy myself?

I'd really appreciate hearing about your personal experiences, especially if you've dealt with frequent finger subluxations and increasing pain.

Thank you! 💜

Hello friends! I leave tomorrow for Poland. Time between boarding first flight to landing in Poland will be just shy of 15 hours. I have CCI for which I will be wearing a cervical collar. I have a history of bad flares even on short domestic flights. I also get awful rib subluxations. This will be my first long travel itinerary since I first experienced issues with my ribs and neck and I’m just looking for advice on how others may manage.

I packed a heating pad, and magnesium cream.

Oh, I’m also 20 weeks pregnant so relaxin not helping much and I can’t take Advil, Tylenol doesn’t ever help so I haven’t even bothered to try and take it.

Thank you all in advance for any recommendation on survival! lol.

hello fellow zebras,

I was diagnosed about a year ago with HSD (and then hEDS) by my rheumatologist. I was so glad to have an answer connecting the dots for me for a lifetime of GI issues, migraines, exercise/heat intolerance, pelvic pain, weird allergies, why I enjoyed dance but struggled with sports, W sitting and shrimp sitting, etc etc. This came right after being diagnosed w AuDHD a year ago too (ALSO revelatory haha)

my rheumatologist told me to research EDS, and naturally I made it my job to hyperfixate on it. I love reddit specifically bc it makes me feel so much less alone, and learning so many things I used to think were just quirks are shared by so many. I'm in therapy with a lovely disability / chronic illness aware therapist, and I also have a wonderful PT who works with HSD/hEDS patients. I'm so grateful for these resources but I am still struggling so much with the post dx grief and internalized ableism, especially the feeling of "I deserve to exist and be loved as I am"

half the time I convince myself I'm not disabled or chronically ill, because my friends and employers don't treat me as such (I am very open with my friends about my disabilities). usually, I find that they expect me to be able bodied, such as requiring me to be in the office for X number of days, or to be able to walk or exert as much as they can. I find myself feeling guilty or ashamed a lot, especially if I talk too long about my health or want to ask for something as basic as salt or to sit down. I'm learning how to ask for accommodations and to say no, but at a cost, because I'm already severely burnt out at work for pushing myself so hard (and I think I am going to be fired for using up my sick days and leave bc we don't have FMLA).

i love how supportive some of my loved ones are (one of them took an EDS training course for her job as an OT, and got me foam writing grip things 😭, and another will send me vids of like finger splints and be like "i thought you may like this!"), but most times I feel so helpless/hopeless. asking for accommodations at work is so difficult, and it's been distressing to realize how employers only care to the extent you can still perform your job for them (this may be the autistic brain talking but it just feels so dehumanizing). similarly my parents are super well intentioned but we're an immigrant family that struggles to talk feelings, so they say stuff like "if you sleep well you'll feel better" and "you're so young why are you like this?" even with friends, I still wear masks and I find it a very difficult conversation to ask if they can too / test if we hang

so I think it's made me feel very small / stuck in a shame spiral. even now I'm thinking why can't I just hold down a job, I'm making "my disabilities my identity", I'm just sensitive (like I've always been), or want too much. and yet I see the real impacts of my disability disabling me, I spend weekends sleeping or in pain, I can no longer grocery shop or run (though I want to), I have my lil medicine shelf and PT HEPs, and want to get knee braces and compression wear, I have to budget my energy (and money!!), eating/smelling the wrong thing will trigger a flare, I may not want / don't want kids. it's so much to think about!! exhausted! I love my body but I also feel so dissociated right now (im also burnt out from work and in the middle of a stressful move), with what is I am sure an ocean of grief underneath. my world feels very small (I love my dog, it's him and I at home), and like I'm stuck living for others and just want to take care of myself again and to feel again and to enjoy being in my body again. and to not feel wrong, or broken, just for existing and for wanting to be comfortable and safe.

chronically overwriting, thank you for reading!! wondering if anyone can relate or has moved through similar seasons of feelings? <3 I hope your pillows are extra supportive, and that your joints hold you lovingly in place (as best as they can hahaha)

I’m 38 and just got my official diagnosis yesterday (hEDS) and waiting on genetic panels. I’ve been partially subluxing my R shoulder since I was about 9. I fell last year and my PCP (God love her and her continuous self education) randomly asked me about EDS.
I also have MDD, Anxiety, cPTSD ADHD and Autism. Working up MCAS now. I’ll spare you all of the (wide-ruled page long) other characteristics/symptoms.
I divorced the narcissist father of my first born in 2016, swore I would never get remarried, and then realized that God has a sense of humor and found my now husband at the end of 2017. We had another child in 2021.

I managed to graduate nursing school after repeating a semester (when I got diagnosed with adhd in my early 20s). I have been fighting mild to moderate chronic pain and thing like plantar fasciitis, the classic chronic fatigue, general body aches and pain and clumsiness… literally as long as I can remember. I have been forcing my body to do all of the things that feel completely against my nature (physically, mentally and socially) in order to essentially sustain life for myself and my daughter and then my family. I’m the breadwinner. But I am so tired.

After my divorce.. if I hadn’t had my oldest I know that I wouldn’t still be here. The adult diagnosis of ADHD and not knowing I was autistic until my mid 30s has sucked the life out of me. Functioning in such a demanding world as inpatient nursing burned me out mentally and physically. And the physical toll of those 12 hour shifts on my body is making itself known loudly and clearly.

I am so tired. I don’t know how to keep going and I can’t just say this to anyone other than my therapist. I don’t know how to explain it to people because I SEEM successful. But it’s slowly killing me. My current office job has given me horrific varicose veins that I’m now having to wear compression leggings for every day. And I enjoy my job and I adore my coworkers. But I can barely convince myself to pick up the phone sometimes. I always feel behind. I feel like a professional imposter.

I even feel like a suffering imposter. I’m aware of how fortunate I’ve been to accomplish the things I have. Through family members dying, surviving narcissistic abuse and single motherhood, my father’s stroke, subsequent cancer and death. I’m proud of making it this far.. but I feel like it’s just been this long game of self- sabotage or something?

My husband is as understanding and supportive as anything I could have hoped for but I didn’t realize any of this (besides the adhd, depression and anxiety) before we got married. I feel like a liability. I feel broken.
I’m afraid of saying it out loud but I’m beginning to FEEL disabled. My symptoms have gotten so much worse this past year. And even with regular b12 shots, and consistent use of my cpap for my sleep apnea … I am WEARY. Like in my soul. And I feel alone.

And I just needed a safe place to say that.

I can't seem to find the right pillow for neck support no matter how many I try. What are we all using?

Coop: liked it at first but it goes flat no matter how much fluffing

Latex pillow: sunk to much and can't find one the right height

Helix memory foam: too firm

Purple pillow: loft either too high or two low on different heights

Buckwheat pillow: too firm

I am a petite frame, side sleeper. I have tech neck and weak core, so need something that is supportive, but also comfortable