Doctor denies EDS pain, need support from EDS community

I have chronic pain hips down because of severe flat feet and bad alignment, severe chronic achilles tendinitis, recurring plantar facilities and bone spurs (one is currently pressing on a nerve so extra painful), pain from hyperextension, subluxations and dislocations, headaches and chest pain from POTS, joint pain that bounces between all my joints

I have widespread full body; muscle, joint, nerve pain, daily. EDS causes pain. And it can be relentless in fatiguing you with all the pain and subluxation/dislocation that happens DAILY

My latest pain is my breastbone subluxing ... Not fun

Wobbly joints, my right shoulder subluxes a lot which has left me with burcitis and osteoarthritis, same with my right hip, my joints tend to keep bending and generally this obviously hurts, sleep is difficult cause of pain I can't get comfortable long enough to fall asleep I've always got to have pillow between my knees, behind my back and supporting my shoulders. I use a stick around the house but I honestly don't like to go out if I can help it, I don't trust my Joints. I can't horse ride anymore because my joints can't hack it there's a lot I can't do any more xxxxx

Owie for sure. My joints dislocate every day, and dislocations HURT whether you have EDS or not. I use a wheelchair cause my hip constantly subluxates and I missed almost every day of my senior year because I was stuck in bed 🥰

Omg yes I have to "schedule " my life around my EDS pain. Tell your Dr "Do you have EDS?" When they say no...tell him then you can't deny my EDS PAIN HU? Good luck and remember no one gets to tell you how you feel!

I have chronic pain from a knee dislocation over a year ago! My shoulder sits partially out of the socket which isn’t exactly comfortable as it subluxes easily. Not to mention all the comorbidities

Every joint and muscle ache. My joints are unstable. Chronic pain an fatigue. Sleepless nights due to pain. Hurts to sit/ lay or stand. Hurts to move.

I swear... we definitely MUST BE our own BEST ADVOCATE! Given, I am a complex case (38 y/o female, multiple issues: hEDS, Adrenocortical Insufficiency, Pituitary Adenoma, Osteoarthritis, Fibromyalgia, Degenerative Disc Disease - multiple current herniations/protrusions/extrusions, pinched/compressed nerves, canal narrowing, {3 spine surgeries in 2 yrs}, etc.) I say all that to say this; the 'TYPE' they are speaking of is called 'Asymptomatic Hypermobile Disorder', not usually associated with Elhers-Danlos, specifically. Furthermore, depending on your cocktail of conditions, the connective tissue factor within this condition can have major effects on your other conditions... Like me with my spine! In conclusion, I'm in so much pain, I take: Meloxicam, Tizanidine, Lyrica, Cymbalta, Topamax, Percocet, a FENTANYL PATCH, topical analgesics, heating pad, due to the cold weather I MUST WEAR heavy underjohns under my clothes, & had to stop working... AGAIN! So... tell your (obviously don't) care "professional" all that! Hope it helps. #DONTSTOPFIGHTINGTHEGOOODFIGHT🙏🏽💪🏽🫶🏽🫡🤗

there are some days I have to miss classes because I can't get up or walk due to how much pain I'm in. i can usually manage okay when it's just in my shoulders, but it's more often in my legs, which has been amplified because of multiple dislocations. my backs ALWAYS hurts, and my neck does too. migraines are common too, plus im often just uncomfortable because i have to sit in class with a rib popped out of place and I can't fix it. my spine also isn't centered in my back, so that causes its own issues. so yes. seek someone who is going to take you seriously because you are absolutely valid

But I am still able to with stand the pain and do a lot of physical activities which pt has helped to regain the stabilizing muscles as well as sports but I guess the pain meds help me live more of an active style but I’m trying to currently trying to get off of them

I have pain from eds since I’ve gotten skinnier & the stabilizer kind of dissipated…. The dislocations & subluxations caused arthritis which I had PsA as well…. And the sub categories of hEds has put me through hell…. Seek another opinion…. 🙏

I live every day at a 4 on the pain scale. I just did a deep clean on my closet and I'm literally lying down in pain right now.

I am in constant pain. And while I have gained a “very high pain tolerance” it doesn’t change my body’s response, which is to tighten every muscle in the area of a subluxation. Sometimes my hips stiffen up to where I can’t walk. But the hardest thing about my pain over the past year would have to be my insomnia due to pain.

That’s rubbish. I’m in pain constantly. It’s not just the joints, it’s the associated conditions like migraine, gastroparesis. I’d love a doc who says it’s not painful to try slipping a rib and tearing all the muscles around their lungs. If they can do it without screaming they win.

Iv started getting bone spurs in my shoulder how I sleep it’s very weird where they appear

I have chronic pain hips down and constant joint pain that just bounces from one place to another

the exact same. I was having major frequent urgency issues and no bladder infections. I grew up w a bad bladder and kidneys, sometimes I had a UTI and never felt it so I kept getting checked. It never burned when I pee but it was about every hour or 2 I was peeing and not just a little bit. I had a baby at 39yrs old so I was chalking it up 2 that being the issue. Anytime I cough or sneeze or laugh I tinkled my pants a bit. That got super annoying, primary sent me 2a urologist. Right b4 that my primary was checking at the office and tests said something was high, don't remember, but the culture always come back normal. He was confused. Urologist 1st apt was w a nurse practitioner and they did a internal check and said I had a herniation, also did a scan of bladder in office, I was peeing everything out, nothing left in bladder so not that. So they were gonna send me 2a specialist about getting surgery. Noone called or set another appt at all so i called and they lost all my stuff. I demanded 2c an actual Dr. this time. So he did an internal exam and said u do not have a herniation u have a hypermobile bladder, which is rare, that's why the tech diagnosed me wrong. Offered surgery but said it's not gonna fix the urgency issue. So I passed for now, I have a crap load of other more urgent issues I needed 2 take care of. My back is really bad, and my hips, all my joints are messed up. Never have had any trauma, I was and am a very active person. Was in gymnastics and karate and sports as a kid, ALWAYS been super flexible, never been overweight, probably more under weight. I can't keep it on. Always sick. I'm just a walking disaster. Just wanna fix it!!

Eds is nothing but pain doesn’t matter when or where the pain is always there

EDS causes dislocations, abnormal heart rhythm, gait issues, easy bruising, bad healing, bad surgical outcomes, iih, migraines, autoimmune issues, early bone degeneration, scoliosis (my ten year old has this), and so much more. All painful. All valid. I'm in IL area. Message me anytime. I have major bladder and kidney issues.

EDS caused my pelvic organ prolapse to start developing at 13. And had stage 4 by 15 and took years to finally get surgery and fix a lot of my issues. I still sometimes get extreme bladder pain. Best way to describe it is like being 8 months pregnant and having a baby constantly on your bladder while having a uti with kidney stones. Before my surgery I would refuse to eat and drink. So I was eating a meal a week and drinking a cup of water a week to avoid pain. To be able to have a really liquidity bowel movement I was on the toilet for 7-8 hours straight every other night so I wouldn't sleep either. And would go to the bathroom 40+ times a day. I was basically slowly withering away. It really caused a LOT of issues and pain. Had one specialist tell me that my pelvic organ prolapse was a "quality of life not quantity" but since symptoms were so bad I refused to eat, drink, and couldn't sleep. I would stand up and collapse from starvation and dehydration and the doctor had the NERVE to tell me it is quality of life when I was slowly d1eing. Never went back to that specialist because I am finally living after the surgery but took awhile to get there. And it was VERY painful. So whatever doctor said that honestly shouldn't even be a doctor.

I’m in legit chronic pain for all my joints all the time. I’m surrounded by mobility aids just to be able to go to school. Having anal prolapse and diarrhea is a match made in hell if anyone can relate. That’s not even counting subluxations and dislocations. Good luck finding a better doc.

All. The. Time. I’m in pain all the time and have a hard time moving and functioning due to pots and eds

Most of my pain is in the muscles surrounding my unstable joints because they're working so hard to compensate

I struggle to work without taking ibuprofen, and even with the ibuprofen I'm in almost constant pain. I've been to physical therapy twice in just a few short years, and both times the physical therapists said it was because the joints in my spine were too hyper flexible

I have pain in me ankles, back, shoulders, knees, hips and wrists. I have hEDS (hypermobile eds) it causes significant problems in my life, doing basic tasks is a hėll of a chore

I’m in pain all day everyday. My joints pop in and out especially my hips ,knees and back. Apparently my neck also and I never realized it.