I've been wanting one for ages! I got the yellow colour "Rubber Ducky" to go with the cute EDS Zebra strap! I've never felt so stable when walking! Until now I've only had the metal, size changeable canes from the drugstore, this is a game changer🥹 My fiance and I walked to Spoons. I definitely feel this will give me more freedom 🫶🏼 Couldn't recommend them enough!

💛💛💛

I was wondering if anyone has any suggestions for outlets/hobbies that help release big emotions (mainly anger) that are NOT physical (or can accommodate). I’m 95% bed ridden, entirely housebound besides appointments and occasional outings a few times a year if I’m lucky. I’m a wheelchair user. I have POTS, ME/CFS, MCAS, hEDS to name a few. 24 years old. I would LOVE to run it out or work it out, but unfortunately that’s not available to me. So- what do you guys do when the anger is super big, but you can’t physically release it? (I already meditate and go to therapy and they help a tiny bit but my anger about my situation feels so big)

I felt a tear at my upper abdomen right below my ribs. I said “I think my ribs moved [I already had known bilateral slipping rib syndrome managed with physio] and somehow tore my abdominal wall, and I think my transverse abdominus has a defect, I can no longer engage it [despite two plus years clinical Pilates and regular exercise- I was in the best shape of my life].”

3 years later, countless imaging studies that reported normal, and I finally have a complicated answer, of which literally every single thing was brought up by me as a concern (at the same time as I felt the tear, I slowly began feeling like my colon and organs were moving around and affecting my digestion - I had lost 85 lbs at the time everything started).

I live in Canada and was turned away over and over again. I requested second opinions of my imaging and was refused (my PCP has been incredibly supportive, it was the specialists that continuously refused me). Referrals made to appropriate specialists, all refused or the specialists I saw had decided I was a basket case before even meeting them.

I travelled to the US and now have a thoracic surgeon for costal margin reconstruction and a complex abdominal wall surgeon to concurrently assess my abdominal wall defects and visceroptosis of several organs.

To add insult to injury, I have been an RN for 10 years. All of the dismissal and outright gaslighting happened in the system I have devoted my life to making better. At the time I had to stop working to go on LTD, I was running a primary care clinic with a focus on a marginalized urban population (ie. lots of addictions, mental health and communicable disease work).

At the time my symptoms started, it would have been a relatively simple fix. I am now looking at 2+ years of surgeries and recovery, at which point I will have been off work for over 5 years. I am 39 now. I’ve likely lost the time to bear children, and it’s not advisable after my surgeries anyways.

I am so so angry and sad at the system I’m supposed to go back to work within, and while I believe in universal healthcare and think everyone deserves equal access, the system I’m working in clearly is broken and needs to be fixed. I am heartbroken. I lost the love of my life through this process and I don’t think I will ever be the same person again.

I didn’t know where else to say these things, and I’m sure there are people here who can relate.

These are the things that I explicitly expressed concern over during the course of my illness:

**•** Transverse abdominus defect, bilaterally (this is a spigelian/semilunar hernia) - dismissed bc “people don’t get hernias there,” “it’s impossible”  
**•** Increased severity of SRS, rib dislocation causing tear in abdominal wall and small tear in diaphragm- dismissed b/c “if you had a diaphragmatic hernia your lung field would be filled with abdominal contents.”  
**•** Concern for redundant/mobile colon causing intermittent Volvulus- multiple times sensation of colon twisting/untwisting associated with immediate relief of bowel obstruction/mass evacuation (was previously having daily, regular type IV bowel movements), when colon felt twisted, also had occasions of severe localized sharp abdominal pain that felt ischemic (throbbing, hot, feeling like someone had stuck their fist in and grabbed a handful of colon and twisted it) - was told if I had Volvulus it would be an emergency and obvious on imaging - told that chronic Volvulus didn’t happen (despite literature stating otherwise)  
**•** Concern for nephroptosis (kidneys moving) - almost never pee after I’ve been upright, flank pain that worsens when kidneys are hanging in wrong place, aversion to drinking fluids, on the worse days, putting edema up to my armpits d/t fluid overload, severe HTN when symptomatic - was told it was impossible despite my left kidney clearly visualized at the front of my abdomen on several CT’s and sensation of kidney moving clearly visible on dynamic ultrasound

My newest doctor, the general surgeon who specializes in complex abdominal wall issues, wrote me the most incredible note to bring home and it is damning. These are snippets of what he documented and what we discussed in person:

**•   Abdominal wall:** thinning along the right semilunar line, and scalloping of the transversus abdominus on both sides (ie. an interparietal hernia with bowel in between muscle defects), worse on the left and possibly containing a loop of sigmoid colon. He wrote that I definitely have a gap in the left semilunar line — and when he examined me in person, he confirmed the right side too, palpating my right semilunar line and telling me that was bowel he was feeling. He recommended abdominoplasty to address this, as well as my diastasis and redundant skin.  
**•   Ribs:** heterotopic ossification at the cartilage attachments of the 8th and 9th ribs on both sides, with scarring on the left at my prior rib fixation site and a possible hernia there. He agreed that I need costal margin reconstruction bilaterally. And suggested that he do a diagnostic laparoscopy to directly assess my diaphragm, colon, transversus abdominus integrity and semilunar lines. During surgery, he can repair anything found intraoperatively.  
**•   Diaphragm:** thinning of the left posterior diaphragm below the ribs, with the splenic flexure sitting suspiciously close to it. He said it’s difficult to be certain, but suspicious enough to warrant inspection during the laparoscopy.  
**•   Colon:** a redundant rectosigmoid colon and redundant splenic flexure, each with caliber change. Colectomy or colopexy is on the table, but can’t be done till after the abdominal wall/srs surgery is complete.  
**•   Kidney:** my left kidney sitting abnormally low (nephroptosis) — documented, plainly, after years of being told it was impossible. Possible suggestion of nephropexy but urology involvement required.

I thought I’d post this with as many details as possible so if anyone here is experiencing anything similar maybe you have a better starting point or support for your own self advocacy. We think that we will be taken seriously after we get the hEDS diagnosis, but most of us now know, that isn’t the end of the fight to be believed, it’s only the beginning. Maybe my experience can help someone else have more time to live their life, rather than languishing while the system fails to find the answers that would be available if they listened to us.

I miss wearing cute shoes. I feel like I’ll have a great fit, and then the shoes just *ruin* it. It seems like good sneakers like Brooks, Hoka, etc are the best for pain and support but I think running shoes are ugly as sin. My style isn’t sporty and it just clashes with what I wear.

I have some luck with Blundstones in the colder months but otherwise, I feel pretty stuck. I walk a LOT and don’t want to feel like a goober 😭

Oh my god, after 10 years of just trying to get a referral or someone to at least listen to my concerns, I am FINALLY on the right track. I started trying to get answers when I was 20, and now I’m 31. These are the steps I’ve taken so far:

First of all, don’t say your suspected diagnosis. I think that was my initial problem. Saying “I need a referral to a physical therapist and a psychiatrist” is what finally worked. Then he asked what symptoms I’ve been dealing with to need those, and hell, I exaggerated a bit because I tend to downplay my issues. Then HE was the one to say “hmm that’s odd, it sounds like a joint issue, and you’re definitely hypermobile”, so it didn’t sound like me trying to TikTok doctor myself.

Then I did the PT for a few weeks, and after chatting while doing the workouts and them noticing that I would have a different joint issue each time I came and how extra exhausted I got, plus my redness after the sessions, they brought up EDS, MCAS, and POTS. (I had to bite my tongue to not scream “YES FINALLY OH MY GOD”) they told me to request genetic screening with my PCP.

Then today, I had an appointment with my PCP and brought it up. She was skeptical at first, and was concerned I wouldn’t have enough markers for genetics to even see me, but she did the testing criteria and I got 9/9. So then she did the lil POTS test which I almost passed out during, and she noticed my various red spots and rashes and tummy issues in my chart, so she put in pretty much ALL the orders she could, based on what most of her EDS patients also have. She also noticed I have most of the same neurological conditions that her other EDS patients have, so I think going to psychiatrists first might also help. (ADHD, PMDD, OCD, Bipolar disorder, and suspected autism)

That’s where I am right now. My god, I’m so excited. I called my mom and she was like “ugh I’m sorry, that sucks” and I was like “no, I’m so excited I could scream???” But tbf she doesn’t believe in most that stuff so idk why I thought she’d care 😂😂😂

I know that PT is one of the only things that can provided long term symptom relief but I just cannot fit it into my life. I work full time and feel like I am hardly staying a float as it is.

I've been in and out of PT for almost 10 years for my chronic patellar instability and I am honestly pretty jaded by the whole experience. I have had 7 surgeries to treat my instability and remain symptomatic on my left side. Every time I said I thought the surgery hadn't worked or that PT wouldn't help, I was confidently told that I was wrong. Each time, I ended up being proven right.

The one time I worked with a PT to gain strength generally, I kept explaining to her that I did not have the energy to do the home program she was asking me to do. She suggested an app to track my energy. My issue isn't that I am using my energy unwisely, it is that I simply do not have enough energy to do all the things I need to do! I can't just cut my hours at work or stop eating (a big energy spender for me because of chronic stomach pain). She also never mentioned mobility aids and I was afraid to bring it up at the time.

I have a PT appointment with someone new next month and I am cautiously optimistic. In the referral, it directly states to asses me for mobility aids and the PT works in the physical medicine and rehabilitation department.

My fear is that even if he is great, I wouldn't be able to follow through with a home program and end up right back at square one.

Complicating issues is that I need multiple types of PT. I have a pelvic floor PT appointment scheduled for October and I am starting vision therapy for a binocular vision dysfunction tomorrow. I am also trying to get help for my hand pain so hand therapy is possible in my future as well.

I want to get better but it just feels impossible.

As the title says, I’m having such a hard time appreciating my body when all it’s doing is going downhill. I’ve been in a flare for the last month or so that I think might be my new baseline and it feels like it’s taking so much from me that I don’t have to give. I’ve lost so much weight because I can’t eat or drink anything, none of my doctors know how to help, and I’m so uncomfortable in my body now. I’ve always had a pretty good relationship with my body and loved it as much as I could. I danced, I was so active, I was so strong, and I miss it so much. But recently, I’ve had such a difficult time seeing my body. I can’t eat barely work anymore, and I do nothing at work, so I just sit at home and wait for my next doctors appointment. I have so many each week. I’m getting iv fluids multiple times each week to help curb the dehydration, but it only helps so much. I’ve been effectively discharged from PT and told I’m not allowed to work out or be active for long periods of time until I can get my nutrition under control. All everyone else talks about when I’m around is my body and physical disabilities and I’m so tired of it.
I’m so worried I’ll have to go on a medical leave from work and school to try and get my health under control, but I’ve worked so hard to get where I’m at and don’t want to put it on pause. My main goals at this point is to try and stop sobbing every day while my doctors run around frantically trying to find someone who will take my case and help.

Sorry, I just need to vent as I'm in distress right now 😅

TW: Medical violence.

I'm in the process of getting diagnosed HEDS/HSD. It's not quite obvious, very laxe fingers, shoulders, yes, but I'm more on the chronic instability side (everything subluxate. All the time. And at +30, the pain and the instability is getting pretty hard to manage.) But the Beighton scale? The party tricks? Nah, it's out of my reach, now. I use to be more flexible, though. I'm diagnosed with dysautonomia and my allergologist is strongly suspecting MCAS. I have a auto-immune disease. I have the tism. All the commorbidities pointing strongly toward the EDS family.

My GP sent me to a sport doctor two months ago for a referal to the pain clinic (I was in agony but he didn't want to do the referal himself). By the time, I had met an orthopedist surgeon who put me in the referal process so it was pretty useless to still go to that sport doctor.

Yet I waited two months, so I went anyway, hoping for a low dose tramadol prescription to get me through everyday life or anything for the daily pain, really, until the pain clinic procedure is completed. Maybe he had a contact for a kine that specialize in hyperlaxity too? Maybe he could give me some advices.

It was yesterday. I went with my nurse, who clearly passed as my mom since nobody batted an eye nor asked who she was. 'Introduced myself at the secretary office. Waited.

That guy, the doc, was sitting at his office like I had personally offended him and asked me why I came.

I began to explain the usual- chronic, oftentimes debilitating, pain since forever, random falls from articulations that goes out of place.

Then the afternoon at the pool- the emergency trip after- 7 subluxations, 2 tendinis, 1 sprained ankle from swimming. The horrid pain, the no clue when it came from, the instability flare up, the huge loss of mobility, and the whole two next months slowly ending to a HEDS specialist who told me: "It could be HEDS. See you in a few months for the Beighton scale test."

The pool thing anecdotee got an immediate answer:

"That's not possible. You've swam before, right? So that's not possible. Who even diagnosed the so called subluxations?"

I just poker faced, because, I don't have the names of the too much doctors I saw in the emergency room back and forth, nor the night doctors called for a 8/10 pain at this very traumatic period of my life. I timidly slided my kinesitherapist name, since she resetted the ankle.

So instead of debatting, I explained that I went for a referal to the pain clinic at first.

He interrupted me, saying they won't take me, this with an amused laugh.

I should've run, but I'm the people pleaser type. So I just explained that the referral was in process. He was the one poker facing.

I talked about the microdosed tramadol since I'm on Izalgi and that's pretty strong.

"Well, tramadol is too."

"That's why the low dose."

He nodded like he had understood but didn't prescribed it.

Ain't got no tramadol.

Then he told me to go to the examination table and I was pretty stunned by all of this so I obeyed instead of breaking a leg, which I really should have.

He first took my leg, asking me where the main pain was. I showed the meniscus, the one with a tear on the radios I had brought him and that he had glanced at. You know, the tear from having that knee walked on while subluxated all the time. He put his thumb right there, and abruptly twisted my calf to the side, W sitting style. Then, he told me to tell him when it hurts.

I'm on casual day to day 3/10 pain, I had bones broken, I had been beaten more than my share. I don't know what hurts and what doesn't. But my brain didn't like the experiment at all since I slided full freeze and fawn.

Then he took off my socks. He threw them accross the cabinet and managed to move my sprained ankle in all direction.

By that time, I probably had bulging eyes and was just nervously laughing in loop. Then he went for my arm and twisted it behind my back. I could have sworn I had told him I was in a costochondritis flare up right before.

And he ended up going for my hips.

Told him if he keeps pushing on it, it will subluxate. I know that hip, it's the one compensating for the bad knee and the sprained ankle.

He told me:

"It's not possible." With a laugh.

It subluxated.

My scoliosis didn't like the experiment. My neck was in shamble. By the time he went for my neck, I cried him to stop and ended up in a ball.

So he told me to touch my toes instead.

I remember trying to go back on teaching him on instability vs flexibility, on ishio-jambier muscles atrophy, on...

Well, we sat back at the office.

"I'm not an expert but to me, you don't have HEDS at all. You don't have hypermobility, just the shoulder."

My nurse had been too stunned to intervene but she asked me if I was okay. I had been manhandled so bad that he had almost made me fall from the examination table. By the time I was sitting back, I had another sprained ankle, the meniscus tear worsened and my wrists were hurting like crazy.

I answered her I felt dirty.

She said: I know.

I still felt the need to show that 'doctor' the fingers party tricks. He just ignored it. It was pretty clear he expected a contortionnist level hypermobility or nothing and that he was pretty smug 'proving me' I didn't had that rare disease I was claiming to have.

I cried once I was finally home.

So yeah, I'm waiting for the HEDS specialist appointement next week. My best friend, who has diagnosed HEDS, has comforted me a bit. But I was already pretty insecure about the lack of flexibility. I know this is a spectrum and I do have more instability and flexibility altogether than my best friend. The invalidation doesn't reach deep but the doubt is still creeping in. I just hope to get diagnosed, because, if it isn't EDS/HSD, I'm just a doll with broken joints that bend awkwardly and can't hold in their sockets.

For context I have been suffering with pain since I was a child and had many back and forths with drs, having scans and taking painkillers. In march I had my first ever rheumatology appointment and I expressed to her my symptoms and explained that I am almost certain I have HEDS. She laughed when I handed her my hand typed list of symptoms, which included anterior wall vaginal prolapse at 27 years old, hiatus hernia, frequent subluxations and skin laxity, hyper mobility etc. She didn’t want to know and wanted to assess for psoriatic arthritis. Anyway, I’ve had knee scans, hand scans, back scans and blood tests since then and I have my follow up appointment tomorrow and I just feel like I’m going to be fobbed off. Does anyone have any tips to get to most out of my appointment? I don’t want it to be a waste because rheumatology appointments are hard to come by on the NHS 😭
Just to add, as far as I’m aware the only thing my scans showed were sclerosis in my sacro-iliac joints.
Any advice would be greatly appreciated.
Thankyou ❤️

I have a lot of experience with my ribs subluxating and I’ve been trained on the right way to fix it, which I thought is what was happening this morning but when I went to fix it, the pain was too far to the left and I couldn’t get it to pop back in.

I’ve been trying different movements to get my scapula to pop but I’ve had no luck. My chiropractor is the one who put my ribs back and taught me how to do it myself, but money is tight and if there’s a chance this will resolve on its own with immobilization and heat, I’d rather go that route.

I’m wondering if anyone has experienced scapula subluxations and if it was able to be fixed at home or if a medical professional needs to be involved?

Hello all,
Last month I ended up in the ER, turns out my herniated disk got worse, not bad enough for surgery but bad enough to cause pressure on a nerve causing leg weakness and severe pain. Now I rely on a rollator to function outside of my home because my leg gets exhausted. My crutch just makes my shoulder hurt.

I am seeing a physiotherapist that my pain team referred me to on Friday for a second opinion on my treatment and I’m nervous. I don’t know what to expect, I’m worried I’ll have to defend the use of a rollator or have my diagnosis called into question or whatever else.

Anyone have any experience going to one? Any advice? I’m just so tired.

Thanks in advance

Hi everyone! I developed trigger finger (thumb) about 7 months ago and I’m weighing my options on how to move forward. I’ve done OT, had an injection, now considering surgery.

My OT/ortho both explained that it’s a quick surgery that I’ll be awake for and healing is usually pretty quick too. Only issue, my ortho dismisses my hypermobility entirely and made a “joke” when I told him my IP joint slips back and forth now with the damaged tendon. So now I don’t fully trust him and I’m more nervous about letting him perform my first surgery. I just don’t know where to go from here 😭

Any advice or experience sharing would be super appreciated

OC - C3 FUSION + decompression for CCI is in a few days!

What are some things I should quickly buy last minute to make sure I'm.comfortable at home?

I really need to hear if there is anyone out there that screams/sings regularly and is going through or has finished perimenopause with EDS. I’m currently in a lot of distress and I just want to find someone that has any success story in this area because all I’m finding is information that is making me feel worse.

All my life, my dream was to sing in a band. I would sing and write songs obsessively when I was a child and my family would always tell me to shut up because I sung flat. Never any encouragement or lessons, I would start to sing and I’d just hear from the other room “FLAT FLAT FLAT FLAT” until I would stop. As soon as I was out of the house at 19, I worked my ass off to follow my dream by myself. I got myself singing lessons, took music lessons to learn to have a better ear, taught myself how to play bass guitar too, found other like minded people and finally got to be in a band. It was truly my lifelong dream come true. I have never been able to get amazing at “singing pretty” but I have cultivated with a lot of hard work, a screaming voice in a pink band that I have a ton of pride in. It’s the thing I am the most proud of in the world.

I started to hit perimenopause very early due to some extreme trauma that triggered it and I was already susceptible to start early due to my extensive medical issues. This transition has been VERY hard. My body has completely changed, my mind has changed, and starting ten days ago I noticed I was having issues with my throat.

I’ve tried everything to improve the situation and have consulted a therapist and a doctor about what could be happening but no one seems to have an answer besides “anxiety?” But I have tried a lot to relax and meditate and it’s not helping. I found that perimenopause can cause changes in your throat and vocal cords. That already scared me enough, but having EDS and already issues with my connective tissue during peri (already suffering vaginal prolapse) I’m extremely worried. I don’t know if my throat is going to permanently feel like it’s swollen on the inside and tight and if my days of living my dream are already over.

Please, is there anyone that has a success story here? That they went through peri and can still sing? Or scream? Or has a friend that has done so? I just want to know it’s possible. I feel so devastated that I could have worked so hard and it’s all been for nothing. And Perimenopause has already made me feel so horrible, if it takes this away from me too, I don’t know how to cope with that.

I am a young male, skinny and not a lot of muscle,,, I do wanna work out and get big but my body cracks and makes scary sounds, also my joints and limbs hurt more than the muscles the day after working out,,, what do I do? This sucks

Hi there,

I have my in-person assessment August 11th .

I’ve read some older posts of other’s experiences. I’m wandering if anyone has been this past yr that could share their experience?

I am to meet dr. Abeer alomari it says. I was supposed to have the virtual assessment with her initially, but ended up with a newer dr from the UK who was quite nice.

Can anyone share their recent experience?

Sometimes being acutely aware of the tiny processes within my body is fascinating, sometimes it’s freaky, when I’m lucky I can tune it out.

Currently having a dizzy migraine in the office complete with full body pain, fighting off the sleepies, and decided to close my eyes on my 15 minute break.

I was stuck watching my pulse! Moving inside my eyelids! I could count my heart beats 1 by 1 as they rolled across my vision 😂😭
How gross, watching my pulses move like little grey waves across my field of vision 🥴🥴 wtf man, I wish I could close another set of eyelids so I wouldn’t have to see that dizzying shit hahaha

I was diagnosed with hEDS about 3 years ago, im on cymbalta currently. Im having quite the flare up however and im in a lot of pain and have been taking some time off of work. I get very anxious about taking time off and typically only take time off if I really do need it. Im a Behavior tech at an ABA center so its very important to keep these kids schedules consistent. But ive been taking off because its so painful to move around, I can feel sharp and radiating pains in pretty much all of my joints and my muscles are so sore. But I keep losing to the voices in my head that are saying that I can walk so clearly I can work even if I can't move quickly enough if I kid ends up running or something. And that im just being a baby and clearly im just being lazy. I know the pain is real but its only subjective, I could push through if I really wanted to im sure. I just don't know how I feel anymore. Im struggling to be kind to myself lately.

Hi y’all! I’m looking for recommendations. I would like to start strength training / weightlifting because I feel really weak and thin, but I don’t have shoes to do it.

Current state: I recently stopped breastfeeding and my ribs and chest are really out there making me feel self-conscious. I WFH and full time coparent a 3y/o toddler so there’s some activity and movement, but my body is begging for me to get stronger. I also know that more age means less muscle mass and I have barely any muscle mass.

Diagnosis: Currently in the middle of the (slow!) diagnosis process. EDS runs in my family and my brother’s rheumatologist listened to my symptoms and said I check every box, but I haven’t had the official diagnosis yet.

Pain points: I’m getting hip subluxations about 3x per week (both sides) and my upper back (shoulder blades, spine, left side ribs) are always sore. I used to have very problematic feet, which went away with good shoes.

Shoes history: I used to be a sneakers girl but my feet grew with pregnancy and I had to get rid of them all. Now I have doc martens when I go outside, and Birkenstocks for inside the house. 15+ years of foot problems were fixed by this change and I am surprised by how long they last compared to sneakers and trainers, which used to deflate and disintegrate within 6 months. I’m really not looking forward to buying overpriced foam, but I also feel like showing up to the gym in Birkenstocks would be… dangerous?

TLDR: If you do any sort of strength training or exercise, what shoes do you wear? Especially looking for hip support.

Several months ago, I posted about my SI joint dysfunction asking for recommendations after trying quite a few things already (see post here).

I've had quite a bit of improvement since then and my hip has not slipped out of place for over three weeks- which is a big accomplishment for me! I still have discomfort and crackling sounds after sitting for long periods of time on about half my work days, but even then it's way less distracting during work than it used to be. Different treatments work for different people, but I wanted to share what has helped the most for me in hopes it might help someone else as well.

1. SI Belt

This one was specially recommended by my physical therapist. I wore it consistently for 6 weeks before I started weaning off it.

2. Knee pillow

I'm a side sleeper and sleeping without a pillow between my legs was causing my hip to pop out of place overnight. There's plenty of good options on Amazon. Sadly I can't sleep on my back because my arms fall asleep.

3. Pilates

Starting Pilates caused the most improvement by FAR for me so far. I started when I was weaning off the SI belt, and it has helped me strengthen the muscles around my SI joint to help keep it in place. Even going once a week like I do is very expensive though ($109 a month).

If you can afford it and have been wondering if it might help you, I recommend seeing if you have a local studio that offers trial classes so you can do an intro and see how you feel the next day before signing up. If that's outside of your price range, you may be able to find a physical therapist in your area that has pilates equipment you can start with so it's covered by insurance. There are also a lot of mat pilates videos on YouTube as well.

4. Changing my exercise

I stopped running almost completely and used an elliptical for most of my cardio instead. I limit activities that are known to worsen SI joint dysfunction in general- although I do play pickleball with proper pickleball shoes when I'm feeling up to it. I just try to listen to my body and pull back when I need to.

5. 5% lidocaine patches (prescription required, I think you can get 3% OTC)

These have been very helpful on days my SI joint is flaring and achy. I know lidocaine patches don't help everyone though. For some reason they work for my hip but not my low back.

I hope this is helpful for someone! SI joint pain sucks.

Randomly for the last few days I’ve had a lot of laxity in my neck, like ya know that feeling of not necessarily pain but everything is moving around cuz my body is bones and jello? Yeah that. Anyway, couldn’t sleep all last night, texted my grandparents aka EDS givers and they recommended using my fiancés arm as a neck pillow and nothing in the world has felt as good as that does so yeah. Thanks babe!

Having frequent shoulder subluxations and an allergy to adhesives, really really really sucks. And is really inconvenient and expensive for me right now lol

The medical solution is to add shoulder braces… but shoulder braces are over $160 each (the system i REALLY want is over $300 altogether though before shipping, but it is made of straps, and light weight, and so freaking supportive looking and I think it actually looks friggin cool… but its a dream for eventually) for the type of support I need, and I need two of them because the cheapest one that my PT could find is not reversible and is side specific.. (I dont know which doctor to reach out to, to try and get them covered by Medicare… but i do have my first appointment with my new medical advocate this afternoon! So I’ll be able to ask her then!)

😭

But it was recommended that I start bracing during sleep, and that i definitely start bracing on any day that I have a subluxation. And this happens pretty much every day, maybe a day between every once in awhile… So this is a necessary big purchase for me, and if I wasnt allergic to adhesives I could absolutely use KT tape, but.. i react bad and am still healing from my first attempt to do it anyways to help relieve pain… for two days, my poor skin lol

Being disabled is freaking expensive in America and I really friggin’ hate it here. It makes existing feel so exhausting and I really feel like a burden on my family for having such high needs to budget for right now potentially..

I apologize for the vent style… but i am also seeking advice or support or validation or anything. This feels insurmountable to me, and... its 2 am here, really really difficult night for me (horrible horrible fight with my husband and horrific pain flares in both my shoulders and my left side/hip/ribs area), and its all so much right now and i am spiraling while trying to keep my shoulder in its capsule and why is this my life right now lmfao

Super confused about this and would love any sort of easy to absorb explanation! My dr wants me on it for my POTS but until I can understand why it’s okay I’m just too nervous.