Jlync80

94d

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!!

Ibuprofen

Generalized pain

Chronic Generalized pain

Ehlers-Danlos Syndrome (EDS)

Chronic Abdominal Distention

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  • Nonamae

    94d

    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.

  • Ink789

    94d

    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

  • Heaven197987

    68d

    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

      13d

      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.

  • Entropyluna

    68d

    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

  • Fibrofoggirl

    67d

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

    • Entropyluna

      67d

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

  • Mira.P.Takki

    67d

    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

      13d

      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

        11d

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

  • TunaGoon

    64d

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

  • Turtle.bird

    64d

    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

    • Fibrofoggirl

      61d

      did you ever take the fibromyalgia test? Because I have both

    • Jlync80

      13d

      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.

  • ScareBear

    10d

    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?

    • Heaven197987

      8d

      get checked for IC more likely common with EDS

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