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Jlync80

548d

So had my primary care appt yesterday and brought up my hypermobile bladder issues, then I brought up EDS naturally. Someone on here told me find another Dr if they try telling u that EDS is not painful. It happened! He said EDS does NOT cause pain. All of my EDS PPL on here plz leave a statement as 2 how pain affects ur life with EDS!!

Top reply
    • Zebragirl

      314d

      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

    • Zebragirl

      314d

      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

    • anxious.queer.zebra

      320d

      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

    • Laulharbeau

      355d

      I’ve watched my 44 year old mum go from a top psychiatrist in London with a hobby of dance into a woman who is a wheelchair user & dislocates in multiple joints at a time, extremely underweight & in unbareable pain year after year - physically & mentally. I am 25 years old & Now medically confirmed the same process is happening to me, the deterioration is kicking in massively. I’ve lost 6 stone in 14 months, subluxations turning into dislocations & happily seeing my friends enjoy life & be active, whilst I’m on the sidelines watching wishing I felt good enough to get involved.

      • Jlync80

        315d

        @Laulharbeau oh sweetheart I'm so sorry. I have 3 kiddos 25, 19, 3 and my middle is having issues already, he's 20 in July. I hope 2God I don't give my children something like this. I'm not even diagnosed yet cuz finding a rheumatologist over here has been a challenge. 3 years I been trying. I have all the symptoms and they make compete sense as 2 why I Wud have all the issues I do. I just don't have any dislocation. But it feels like they will constantly. I have no cartridge in my joints and I'm super duper flexible. Have spurs that have grown in all my joints head 2 toe. I will pray for u and ur mom. I'm sure mentally it's destroying her cuz I know it is me. Mom NEVER wants her kids suffering like she does. But at least u have the knowledge and tools 2 have a better outcome.

      • mrsp

        355d

        @Laulharbeau sending love to you and your mum

        • Laulharbeau

          355d

          @mrsp thank you ❤️ sending love back to you!

    • chronically_may

      355d

      I'm 16 and eds has put my life of hold it absolutely is painful I'm sure your dr would be I'm the er for even a minimal pain day for most of us zebras

      • mrsp

        355d

        @chronically_may absolutely agree with you there.

    • mrsp

      355d

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

    • Bambi1993

      361d

      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

    • ShortcakeBirdie

      361d

      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 🥰

    • Pixxy

      361d

      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!

    • acornyuyu

      367d

      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

    • Ravens_escape

      367d

      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.

    • Jlync80

      371d

      😉😘 I feel ya hunny. I have ddd, hypermobile bladder, spinal stenosis and a few other stenosis', every single disc is bulging or herniated, spurs all over my body. Just this week I found out what keloids are, I grew some on my belly button where my ring has been since I was 13, 43 March 7th. Dermatologist trying 2 say contact dermatitis, NOT! THEY ARE HARD BALLS , GROWTH, not an allergy, allergy goes away this has not. I have GERD, IBS, overactive bladder, arthritis all over my body, just had laser surgery for glaucoma closed angle, fibromyalgia, they just did a nerve scan of my legs and feet cuz I keep swelling haven't gotten results yet. It's a neverending list it seems like. My next step is another Rheumatologist 2 ACTUALLY test me for EDS. I PASS all the little stupid crap they have me doing, touch the floor w palms, my thumb goes 2 my wrist, I can do MUCH MORE than that tho. Have been able my whole life. Also ALWAYS had something wrong w me my whole life, kidney and bladder infections, tonsillitis all the time and tonsillectomy at 16. Always caught any and every bug known 2 man that came along. Still do and bronchitis right after, never fails. I'm way beyond sick of it, my nearest ER they know me VERY well they know what I been going thru. I just want answers and all the symptoms are right there in front of their face. 1st time I mentioned EDS I basically got laughed at, why do u think u have that ? Well now they see why and are listening but still taking forever 2 do anything.

      • TINAMARIE85

        371d

        @Jlync80 keep fighting the good fight! If possible, bring someone to an appointment with you! Even if the person doesn't speak, it could discourage the Dr from minimizing you, your symptoms, or your experience in general. 😉🙏🏽💪🏽🫶🏽🫡

        • Jlync80

          371d

          @TINAMARIE85 🥰 good idea, thx a bunch!

    • TINAMARIE85

      377d

      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🙏🏽💪🏽🫶🏽🫡🤗

    • alldeadalldead

      386d

      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

    • Dragonrollz

      387d

      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

    • Dragonrollz

      387d

      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…. 🙏

    • Magpie42

      387d

      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.

    • ZebracornV

      388d

      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.

    • Reb9

      389d

      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.

    • Juno2191

      392d

      I'm in pain every day. Knees, shoulders, collarbone, ribs, neck, hips all from dislocations - the joints are sore /in pain, and the muscles spasm to keep them in place. I also have scoliosis (mild pain) and Endometriosis from it (so, Hella pain)

      • Juno2191

        392d

        @Juno2191 Oh, and my associated POTS causes blood pooling in the legs which also is painful

    • LaurenRomero

      392d

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

    • Zebragirl

      401d

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

    • chronicllyillgirl

      408d

      It is extremely painful to the point I need help standing and have a 504 plan at my school to make sure if a joint pops out that they help me place it back. I would get a new doctor and remember that during these journey YOU are your biggest advocate

      • Jlync80

        406d

        @chronicllyillgirl thx Hun. It's been fun trying 2 advocate myself w these Drs. They act like ur crazy. Been w my neuro and pain management, same office, for a year and half at least. When I brought up EDS he almost laughed at me and asked " why do u think u have that?" So I started rattling off all the matching symptoms, severe flexibility my whole life, even w all my joint and back issues I can touch floor w flattened palms, my hands I can bend in not so normal ways, major joint issues, always a new spot that is sore and just so happens 2b in the joint EVERYTIME or a new spur pooping up, I swear I have like 10 spurs just in my hands and feet. U can feel them. He shrugged it off and said " I can do all that stuff and I don't have EDS" oh really let's see!! Nope he didn't wanna do that. I can put both feet behind my head, been doing it my whole life. Always have rashes and skin issues , I have loose soft skin. Then the hypermobility of the bladder and PT said some in my back, can't recall if it was vertebrae or disc.i do have issues w facet joints as well. My whole back is screwed up and never did anything 2 cause it , was very active and healthy. The only symptom I don't get is joints popping out. I feel like my hip will at times and in my 30s I had issues w my knees popping out but that stopped. I break toes very easily. Then I had 2 argue w him about EDS causing pain, and I had NOTHING in front of me at that time 2 banter with. I told him I cud bring him real life proof from real ppl w real diagnosed EDS. I sent some comments thru the portal 2 him. Next thing I know the arnp is telling me he's agreed 2 try a genealogist. But it's still a wait and see. Mayo is the only place around that has 1 and they only take so many Medicaid patients a year. And I'm sure there's a waiting list. I just want 2 find out if I have it, that's all. That's what healthcare is about crossing crap off the list when u have so many problems and they can't figure out why. A Fibro diagnosis is just not sitting right w me.

    • Jlync80

      409d

      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!!

    • LaurenRomero

      434d

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

    • cosmiccats

      435d

      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.

    • Georgeisleaening

      436d

      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.

    • Wednesday_7

      436d

      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.

    • Student_girl

      444d

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

    • ScareBear

      463d

      Ok, off-topic a bit, but what are the symptoms of a hypermobile bladder? I suspect I have eds, and I've been having lots of trouble with frequent urination and increased urgency. What do you experience?

      • Jlync80

        447d

        @ScareBear the symptoms I got were overactive bladder. Nothing else, it was basically a surprise find. The 1st time I was evaluated by a arnp they said I had a herniated bladder. They lost all my info and I demanded a Dr. He evaluated and said no it's not herniated. When he touches the bladder it falls back into place quickly. Herniation Wud stay in place.

      • Heaven197987

        462d

        @ScareBear get checked for IC more likely common with EDS

    • Turtle.bird

      517d

      EDS can cause so much pain. I was initially misdiagnosed with fibromyalgia because I was in pain and they believed me, but that doctor was uneducated on EDS and didn’t consider it. Ignorance about these conditions can be so damaging

      • Jlync80

        467d

        @Turtle.bird they diagnosed me w Fibro and CFS, but the degeneration of my spine and discs and bladder hypermobility plus all the osteoarthritis and spurs all over my body lead me 2 believe it's not just that. I'm only 42. My body looks 80. Gotta b a reason.

      • Fibrofoggirl

        514d

        @Turtle.bird did you ever take the fibromyalgia test? Because I have both

    • TunaGoon

      517d

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

    • Mira.P.Takki

      520d

      That provider is very clearly uneducated about EDS, and evidence based medicine. I would send them the links for provider education and some educational videos on EDS from the EDS society and suggest that they owe it to their patient community to reconsider their judgements of a condition they have never experienced. The very large majority of providers know nothing about EDS. It’s infuriating and has a massive impact on the health and long term care that a patient receives, not only from that provider, and every provider they work with, but also impacts the way they are treated by their health insurance, and a large majority of providers that follow the assessment made by that misinformed provider. I am 40, have had chronic widespread “roving” pain (this is the best word I can use to describe how my pain can move from one minute to the next) since I was 12. I was not diagnosed, until it became unbearable. I was 38 when I was officially diagnosed.

      • Jlync80

        467d

        @Mira.P.Takki yes!! Just received referral for geneticist. After hearing from my PT how very flexible I am and have hypermobile joints and bladder. Might take awhile 2 get in tho. I just posted a new post. Been like this my whole life now all my joints and back are super bad, cud have been avoided w proper care. I posted this 2 show my neuro that he was wrong. Sent into the portal. Have an apt w him December so I'll bring him the rest of comments.

        • Mira.P.Takki

          464d

          @Jlync80 🙌 💕 yaaaay!!! I am so glad you’re continuing to advocate.

    • Fibrofoggirl

      520d

      I hope Your primary dr. Gets Ed’s, and most of my dr.s I’ve seen also!

      • Entropyluna

        520d

        @Fibrofoggirl and then whenever they complain about the pain, we can all gang up on them and say that EDS doesn't cause pain. 😈

        • Fibrofoggirl

          520d

          @Entropyluna yea 💯

    • Entropyluna

      521d

      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

    • Heaven197987

      522d

      EDS causes dislocations, joint and organ issues because collagen in EDS is not made right by our bodies. Which can cause server pain I have IC because the lining in my bladder is thin and damages it the meds they put you on can effect your eyes. But it causes bladder spasms can be extremely painful

      • Jlync80

        467d

        @Heaven197987 how do I know if it's bladder spasms? I randomly have pain in right side 2 the point I can't walk, thought it was UTI several times and went 2ER and it's not, keep telling me it's probably my joints. But I know my hip and back pain well. This does not feel like that. Feels like my bladder!! Also worse in morning b4 I pee, still hurts after but less pressure.

        • Heaven197987

          436d

          @Jlync80 spasms can make you feel the urge to pee but you're empty nothing to very little comes out can cause server pain when flare ups happen. Feels like a uti cut back on acidic foods and drinks when you flare or they recommend doing all together to avoid flare ups

    • Ink789

      548d

      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

    • Nonamae

      548d

      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.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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