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!!
Chronic Generalized pain
Ehlers-Danlos Syndrome (EDS)
Chronic Abdominal Distention
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.
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
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
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.
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
Your primary dr. Gets Ed’s, and most of my dr.s I’ve seen also!
and then whenever they complain about the pain, we can all gang up on them and say that EDS doesn't cause pain. 😈
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.
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.
🙌 💕 yaaaay!!! I am so glad you’re continuing to advocate.
Most of my pain is in the muscles surrounding my unstable joints because they're working so hard to compensate
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
did you ever take the fibromyalgia test? Because I have both
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.
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?
get checked for IC more likely common with EDS
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