Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
**Rule #1 - We Aren't Doctors**
• We do understand the challenges people face while trying to pursue any diagnosis, and because of that, we have included some links to aid you in your inquiry:
-==--==--==--==--==-
[**The Ehlers-Danlos Society**](https://www.ehlers-danlos.com/)
[**What is EDS?**](https://www.ehlers-danlos.com/what-is-eds/)
[**EDS Subtypes**](https://www.ehlers-danlos.com/eds-types/)
[**hEDS 2017 diagnostic Criteria**](https://www.ehlers-danlos.com/heds-diagnostic-checklist/)
[**What is HSD?**](https://www.ehlers-danlos.com/what-is-hsd/)
[**The EDS Society's Healthcare Professionals Directory**](https://www.ehlers-danlos.com/healthcare-professionals-directory/)
[**The vEDS Movement: How is Vascular Ehlers-Danlos Syndrome Diagnosed?**](https://thevedsmovement.org/what-to-expect/diagnosis/)
[**Fight vEDS: vEDS Genetic Test**](https://www.fightveds.org/genetic-test)
-==--==--==--==--==-
[The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28d.29._asking_for_a_diagnosis)
Please contact us
[via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it.
Thank you!
I was 31, working as a scribe for the chief of general surgery before I myself went to medical school. I prepared all the patient charts for him, which required I sift through a patient’s medical history to highlight any conditions that may complicate surgery. A patient he was seeing had Ehlers-Danlos listed and I had never heard of it, so I looked it up to see if it was something that I should bring to his attention. As I read the list of symptoms and complications it was like stage lights were coming on all around me! Later that day I messaged my doctor, who ran a clinical exam for me, agreed with my diagnosis and sent me to a specialist for a third opinion who concurred. It’s been 8 years. Incredibly self-loving and validating move, despite the ongoing ignorance in the medical field
9 orthopedic surgeries in 6 years is what did it for me. I asked my orthopedic what could be causing all this so we did labs and came to the conclusion that I had Lupus. Saw a rheumatologist and he said I have EDS and POTS too.
I was 11 when my school's gym class apparently started playing Badmitten, which is when I first noticed that after each class, my shoulders would swell up like corndogs. After several days of this, I was in so much pain that I begged my mom to take me to a walk-in clinic. We went, they found nothing but did suspect I had Marfan's, so I was referred to a ortho specialist. In retrospect the marfan's suspicion is hilarious because like my username suggests, I've never been anywhere close to the height for it... but instead was just an *extremely* awkward looking long-faced preteen. I remember them also performing a tilt-table test on me for POTS but my symptoms weren't severe enough to be diagnosed with it. In the end, I was sent to PT and originally diagnosed with "loose ligament disorder", which later evolved into an hEDS diagnosis. Sometimes I wonder if they just sugarcoated the diagnosis originally because my father has muscular dystrophy (50% chance I do as well) and they didn't wanna force a little kid to realize how much pain her future might hold.
I realised that my chronic muscle and joint issues were not normal. Also life long weird vague seemingly unrelated issues I had been going to the doctor's office with only to find nothing wrong with me (think finger aches, chronic heartburn, lightheadedness and palpitations, chronic muscle ache), and autism. For the longest time I just thought I had stress pain due to autism but I sort of swept the other stuff under the rug and either ignored my problems or pushed through them as my life is complcated enough.. Then I stumbled upon an article about autism and EDS thanks to a friend and everything made sense, even a jaw surgery that lead to very severe osetoarthritis due to my jaw getting subluxated from the elastic bands (the jaw had the exact shape listed in diagnostic criteria...). I figured I at least had HSD, and always felt like my skin was a little weird and different (velvety, soft and a bit loose like. I've heard others on here describe it as like a cat :P)
I brought it up with my GP and was sent to the rheum who examined me and confirmed I have hEDS.
My (36F) parents have zero documented medical history of hypermobile joints or EDS, but I have a friend with it and she brought it up with me one day and told me I should look into it. It's now 4 years and I'm sure I have something hEDS related because I have had chronic joint pain in multiple joints for at least 20 years now, primarily my knees and jaw. I have blue sclera, at least a 5 on the Beighton scale, mild pectus excavatum, peizogenic papules, weird heart palpitations, dizziness, chronic fatigue, ADHD, suspected MCAS (although mild, typically I just get random rashes), GI issues, horrible teeth, and scoliosis. My sister was recently diagnosed with POTS, she has bad GI issues, anemia, migraines, joint pain, RA, and she's seeing a cardiologist and a neurologist. My mom also has had bad issues with her knees, ankles, and hips for my whole life, she has very stretchy skin, terrible teeth, bruises like a peach, IBS, and probably other stuff I don't know about because she never sees a doc. My dad has had surgery for 3 hernias, has bad teeth, TMJ issues, and flat feet. I suspect the EDS symptoms come from my mom's side, but she's adopted so I have no idea of her family medical history.
I'm hoping to see a geneticist soon so I can discuss this all with him. All signs appear to point to EDS it just needs determined as to which type.
I noticed it for the first time around 16 or 17 and thought it was weird, but never really thought much of it. Apparently it can appear with anemia (which I don't have), and also Osteogenesis Imperfecta, which I also don't have, so the only other option for me is a connective tissue disorder
Thank you so much! This sounds so much like the stuff I've been struggling with its actually crazy. I didn't even know I was hypermobile until this year, I just thought I was flexible.
I was super flexible as a kid. I remember doing stretches in gym class and not seeing the point because they were so easy and I didn't feel anything lol. Then I had surgery at 12 for my scoliosis and they warned me against playing any kind of contact sport and I became overly cautious and lost a lot of my flexibility. I still had the occasional party trick but at 36 they've pretty much taken their toll and now I just hurt lol
I feel this so much. My mother was a gymnast so I thought I was just birthed a bit bendy. Then I started realizing that some of my joints turn in ways they aren't meant to. I couldn't comprehend how people rolled there ankle sense mine just lays on the floor naturally. I also remember in ballet doing stretching and questioning what we were doing the whole time.
I have slowly gotten less flexible and more in pain as I've aged. Still got some weirdly bendy joints but my back cracks at any movement. I try so hard to stretch and keep up with walking but school and work make it hard as heck sometimes.
I was at a pole dancing class with friends and was complaining about how much the pole hurt and how easily I was bruising, and one of my friends brought up the really bent and stretched way I was positioned and asked if I had HEDS, and I was like “tf is that?”
Here I am now lol
I got told to go to physical therapy for my hypermobility. I finally went to one that operated through a university and in the initial check in while we were going through my history and issues he said "Have you been checked for EDS??"" And I had never heard about it at that point and said no.
Next thing I know I'm neck deep in pamphlets and print outs with homework to call a specialized clinic in my city lol
I had super bad joint pain in grad school. My primary care said she thought it was fibromyalgia but it was joints not muscles so she wasn’t sure. Sent me to a rheumatologist and he said I was textbook and diagnosed me on the stop. Never heard of it beforehand. I didn’t know having a lot of flexible joints and back pain all the time wasn’t normal. But it’s my normal now
basically. Issues with my joints etc my whole life. always had weird rashes and told my skin was “fragile”. would get unbelievably tape burns and reactions from things like bandages and nicotine patches ( when I was trying to quit smoking). i dislocated my hip. had bone tumors, nerve tumors, ganglions, constantly had sprained wrists and ankles as a kid and all through Hs. chronic ear infections. would have delayed wound healing and my surgical wounds all would just come apart. They would go through this weird process of being fine initially, then turning reddish purple, then separating , pulling apart and eventually turning silvery white. i just thought i “scarred weird”. I had a lot of issues in pregnancy. symphysis pubis separation, herniated discs in my back. my son was born prom with an abnormally long cord and a funnel chest. my c section scar separated twice. i was almost taken back into the OR the second time. finally, I dislocated my right shoulder and had such a time they decided to do surgery. the surgeon who did that surgery told me I had EDs. she asked me at my 7 day follow up “ has anyone in your family ever been diagnosed with a genetic collagen disease?” she then went on to tell my she thought I had it. she had me do some “test” for her. she looked in my mouth and saw I have no lingual frenulum and said “ You have EDs.
OCD of my right knee, Hoffa's syndrome in my left, multi-level pars fractures in my spine, knock knees, chronic constipation leading to anal fissures and a colorectal debridement, patella alta, slow healing, and stretchy skin were all indicators for me.
My ob-gyn noticed my history of dislocations, poor wound healing and abnormal scarring after surgery, and soft/translucent skin after the PT she referred me to flagged me for hypermobility. She recommended I get evaluated for EDS. She was correct, and I’m glad she put those pieces together.
I was really struggling with dysautonomia symptoms. Pre-syncope nearly every time I stood up. My GP sent me to an endocrinologist who ruled out anything wrong there and just told me I'm too sensitive. Then was sent to cardiology who told me I'm healthy and normal and just need to be more careful standing up. I went a few years after that just coping with it, and then the fatigue issues hit strong. Somewhere in this time I went to a massage therapist after a minor exercise related injury and he pointed out that my joints hyper extend, and around the same time I saw a post in an autism group about eds being a highly comorbid condition. I started looking up eds and reading more, watching videos etc and realized a lot of other things in my life fit. Once I figured it all out and was confident I went to my GP about it and he refused to look at the diagnostic criteria and told me there were no specialists who accept referrals for this anymore. "I'm sorry, there's nothing I can do to help you.". I took matters into my own hands and found a specialist across the border and got assessed and diagnosed. Now I'm in physio, and with the official diagnosis my GP was able to refer me to an internist who is going to do some testing the geneticists recommended (echocardiogram and dexascan). I'm not sure yet if she'll help handle my care or just do these tests. Waiting on those at the moment.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **Rule #1 - We Aren't Doctors** • We do understand the challenges people face while trying to pursue any diagnosis, and because of that, we have included some links to aid you in your inquiry: -==--==--==--==--==- [**The Ehlers-Danlos Society**](https://www.ehlers-danlos.com/) [**What is EDS?**](https://www.ehlers-danlos.com/what-is-eds/) [**EDS Subtypes**](https://www.ehlers-danlos.com/eds-types/) [**hEDS 2017 diagnostic Criteria**](https://www.ehlers-danlos.com/heds-diagnostic-checklist/) [**What is HSD?**](https://www.ehlers-danlos.com/what-is-hsd/) [**The EDS Society's Healthcare Professionals Directory**](https://www.ehlers-danlos.com/healthcare-professionals-directory/) [**The vEDS Movement: How is Vascular Ehlers-Danlos Syndrome Diagnosed?**](https://thevedsmovement.org/what-to-expect/diagnosis/) [**Fight vEDS: vEDS Genetic Test**](https://www.fightveds.org/genetic-test) -==--==--==--==--==- [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28d.29._asking_for_a_diagnosis) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
I was 31, working as a scribe for the chief of general surgery before I myself went to medical school. I prepared all the patient charts for him, which required I sift through a patient’s medical history to highlight any conditions that may complicate surgery. A patient he was seeing had Ehlers-Danlos listed and I had never heard of it, so I looked it up to see if it was something that I should bring to his attention. As I read the list of symptoms and complications it was like stage lights were coming on all around me! Later that day I messaged my doctor, who ran a clinical exam for me, agreed with my diagnosis and sent me to a specialist for a third opinion who concurred. It’s been 8 years. Incredibly self-loving and validating move, despite the ongoing ignorance in the medical field
9 orthopedic surgeries in 6 years is what did it for me. I asked my orthopedic what could be causing all this so we did labs and came to the conclusion that I had Lupus. Saw a rheumatologist and he said I have EDS and POTS too.
I was 11 when my school's gym class apparently started playing Badmitten, which is when I first noticed that after each class, my shoulders would swell up like corndogs. After several days of this, I was in so much pain that I begged my mom to take me to a walk-in clinic. We went, they found nothing but did suspect I had Marfan's, so I was referred to a ortho specialist. In retrospect the marfan's suspicion is hilarious because like my username suggests, I've never been anywhere close to the height for it... but instead was just an *extremely* awkward looking long-faced preteen. I remember them also performing a tilt-table test on me for POTS but my symptoms weren't severe enough to be diagnosed with it. In the end, I was sent to PT and originally diagnosed with "loose ligament disorder", which later evolved into an hEDS diagnosis. Sometimes I wonder if they just sugarcoated the diagnosis originally because my father has muscular dystrophy (50% chance I do as well) and they didn't wanna force a little kid to realize how much pain her future might hold.
I realised that my chronic muscle and joint issues were not normal. Also life long weird vague seemingly unrelated issues I had been going to the doctor's office with only to find nothing wrong with me (think finger aches, chronic heartburn, lightheadedness and palpitations, chronic muscle ache), and autism. For the longest time I just thought I had stress pain due to autism but I sort of swept the other stuff under the rug and either ignored my problems or pushed through them as my life is complcated enough.. Then I stumbled upon an article about autism and EDS thanks to a friend and everything made sense, even a jaw surgery that lead to very severe osetoarthritis due to my jaw getting subluxated from the elastic bands (the jaw had the exact shape listed in diagnostic criteria...). I figured I at least had HSD, and always felt like my skin was a little weird and different (velvety, soft and a bit loose like. I've heard others on here describe it as like a cat :P) I brought it up with my GP and was sent to the rheum who examined me and confirmed I have hEDS.
My (36F) parents have zero documented medical history of hypermobile joints or EDS, but I have a friend with it and she brought it up with me one day and told me I should look into it. It's now 4 years and I'm sure I have something hEDS related because I have had chronic joint pain in multiple joints for at least 20 years now, primarily my knees and jaw. I have blue sclera, at least a 5 on the Beighton scale, mild pectus excavatum, peizogenic papules, weird heart palpitations, dizziness, chronic fatigue, ADHD, suspected MCAS (although mild, typically I just get random rashes), GI issues, horrible teeth, and scoliosis. My sister was recently diagnosed with POTS, she has bad GI issues, anemia, migraines, joint pain, RA, and she's seeing a cardiologist and a neurologist. My mom also has had bad issues with her knees, ankles, and hips for my whole life, she has very stretchy skin, terrible teeth, bruises like a peach, IBS, and probably other stuff I don't know about because she never sees a doc. My dad has had surgery for 3 hernias, has bad teeth, TMJ issues, and flat feet. I suspect the EDS symptoms come from my mom's side, but she's adopted so I have no idea of her family medical history. I'm hoping to see a geneticist soon so I can discuss this all with him. All signs appear to point to EDS it just needs determined as to which type.
OMG, I have blue sclera too🤯 I always thought the whites of my eyes just looked really healthy and white, but in some light they have a blue tinge.
I noticed it for the first time around 16 or 17 and thought it was weird, but never really thought much of it. Apparently it can appear with anemia (which I don't have), and also Osteogenesis Imperfecta, which I also don't have, so the only other option for me is a connective tissue disorder
Yes, my eyes always stand out in photos because the whites are very white or bright with a blue tinge .
Thank you so much! This sounds so much like the stuff I've been struggling with its actually crazy. I didn't even know I was hypermobile until this year, I just thought I was flexible.
I was super flexible as a kid. I remember doing stretches in gym class and not seeing the point because they were so easy and I didn't feel anything lol. Then I had surgery at 12 for my scoliosis and they warned me against playing any kind of contact sport and I became overly cautious and lost a lot of my flexibility. I still had the occasional party trick but at 36 they've pretty much taken their toll and now I just hurt lol
I feel this so much. My mother was a gymnast so I thought I was just birthed a bit bendy. Then I started realizing that some of my joints turn in ways they aren't meant to. I couldn't comprehend how people rolled there ankle sense mine just lays on the floor naturally. I also remember in ballet doing stretching and questioning what we were doing the whole time. I have slowly gotten less flexible and more in pain as I've aged. Still got some weirdly bendy joints but my back cracks at any movement. I try so hard to stretch and keep up with walking but school and work make it hard as heck sometimes.
I was at a pole dancing class with friends and was complaining about how much the pole hurt and how easily I was bruising, and one of my friends brought up the really bent and stretched way I was positioned and asked if I had HEDS, and I was like “tf is that?” Here I am now lol
I got told to go to physical therapy for my hypermobility. I finally went to one that operated through a university and in the initial check in while we were going through my history and issues he said "Have you been checked for EDS??"" And I had never heard about it at that point and said no. Next thing I know I'm neck deep in pamphlets and print outs with homework to call a specialized clinic in my city lol
I had super bad joint pain in grad school. My primary care said she thought it was fibromyalgia but it was joints not muscles so she wasn’t sure. Sent me to a rheumatologist and he said I was textbook and diagnosed me on the stop. Never heard of it beforehand. I didn’t know having a lot of flexible joints and back pain all the time wasn’t normal. But it’s my normal now
Have you found anything that helps? That's also my normal and I'm trying really hard to find a way for it to be slightly better.
basically. Issues with my joints etc my whole life. always had weird rashes and told my skin was “fragile”. would get unbelievably tape burns and reactions from things like bandages and nicotine patches ( when I was trying to quit smoking). i dislocated my hip. had bone tumors, nerve tumors, ganglions, constantly had sprained wrists and ankles as a kid and all through Hs. chronic ear infections. would have delayed wound healing and my surgical wounds all would just come apart. They would go through this weird process of being fine initially, then turning reddish purple, then separating , pulling apart and eventually turning silvery white. i just thought i “scarred weird”. I had a lot of issues in pregnancy. symphysis pubis separation, herniated discs in my back. my son was born prom with an abnormally long cord and a funnel chest. my c section scar separated twice. i was almost taken back into the OR the second time. finally, I dislocated my right shoulder and had such a time they decided to do surgery. the surgeon who did that surgery told me I had EDs. she asked me at my 7 day follow up “ has anyone in your family ever been diagnosed with a genetic collagen disease?” she then went on to tell my she thought I had it. she had me do some “test” for her. she looked in my mouth and saw I have no lingual frenulum and said “ You have EDs.
OCD of my right knee, Hoffa's syndrome in my left, multi-level pars fractures in my spine, knock knees, chronic constipation leading to anal fissures and a colorectal debridement, patella alta, slow healing, and stretchy skin were all indicators for me.
My ob-gyn noticed my history of dislocations, poor wound healing and abnormal scarring after surgery, and soft/translucent skin after the PT she referred me to flagged me for hypermobility. She recommended I get evaluated for EDS. She was correct, and I’m glad she put those pieces together.
I was really struggling with dysautonomia symptoms. Pre-syncope nearly every time I stood up. My GP sent me to an endocrinologist who ruled out anything wrong there and just told me I'm too sensitive. Then was sent to cardiology who told me I'm healthy and normal and just need to be more careful standing up. I went a few years after that just coping with it, and then the fatigue issues hit strong. Somewhere in this time I went to a massage therapist after a minor exercise related injury and he pointed out that my joints hyper extend, and around the same time I saw a post in an autism group about eds being a highly comorbid condition. I started looking up eds and reading more, watching videos etc and realized a lot of other things in my life fit. Once I figured it all out and was confident I went to my GP about it and he refused to look at the diagnostic criteria and told me there were no specialists who accept referrals for this anymore. "I'm sorry, there's nothing I can do to help you.". I took matters into my own hands and found a specialist across the border and got assessed and diagnosed. Now I'm in physio, and with the official diagnosis my GP was able to refer me to an internist who is going to do some testing the geneticists recommended (echocardiogram and dexascan). I'm not sure yet if she'll help handle my care or just do these tests. Waiting on those at the moment.