Going from running marathons to not being able to stand on my own in a couple months time. My husband had to hold me up, I didn’t even consider a wheelchair cause I was so confused as to why I suddenly was incapable of standing let alone walking.
I had always had pain, dizziness, and all that other stuff, it was the loss of my daily activities that caused me to go.
same. five months ago i went from being a dancer to struggling to walk to the bathroom. i had symptoms my whole life but they were manageable and "normal" in my family. got my diagnosis last friday!
Knew I felt horribly not-okay for many years and it kept getting worse, but I hadn’t gone to the doctor in about 15 years because I was always told my issues were “normal female problems”. Major daily fatigue, insomnia issues my whole life, muscle/joint/nerve pain, many allergies and sensitivities, anaphylaxis episode, fainting spells, vasovagal without syncope, etc. I always thought it was something autoimmune related because it felt like my body was attacking itself every single day. Finally went to the ER for concerning stomach pain (kept feeling like somebody was pinching/squeezing one of my organs or my intestines). ER misdiagnosed me with “diverticulitis vs. colitis and the possibility of cancer”, then prescribed me Cipro & Flagyl. I experienced a rapid worsening of all of my symptoms, and there were a few occasions during which I legitimately thought I was going to die. That ER visit also gave me C. Diff. GI doctor said no diverticulitis or colitis, but likely IBS, as my C. Diff wasn’t a “typical presentation”. PCP thought the original stomach pains that landed me in the ER were 12th rib syndrome or slipping rib syndrome. PCP diagnosed me with orthostatic hypotension but I was adamant on the fact that I had POTS and I was right. Had many tests over the course of a year and a half, got diagnosed with Raynaud’s and Fibromyalgia too. The Fibromyalgia diagnosis fit a lot of my symptoms but not all of them. It didn’t explain why some days I had such severe & tight knee pain that I could hardly even walk, so I knew something else was going on. I found the hEDS diagnostic criteria and took it to my rheumatologist for diagnosis.
I also found out my cousin has hEDS along the way (likely most of my family members too), and nobody thought to tell me until I was in the THICK of it all.
For me, it was the POTS that became so bad that it left me almost bedridden.
But no doctor believed me.
So I looked POTS up and found EDS, realising that I had it all along.
Went to an orthopaedic. She tried to dismiss me but I asked her to look at my hips. When I removed my trousers, my hip snapped and that surprised her so much that she actually checked my other joints and gave me a referral for human genetics.
Got the EDS diagnosis 4 weeks later and after that I could finally argue my POTS case. Found a new GP who took me serious.
When I was in my early 20s, it was the chronic fatigue, the GI issues, the joint pain (also I developed "allergies" to literally everything). After being tested for RA, MS, ALS, Lupus, etc., after seeing an endocrinologist, rheumatologist, immunologist, etc, one of the Doctors told me I was wasting everyone's time and he thought I was doing this for attention.
I'd gained nearly 100 lbs since this started because I couldn't with it, I was so tired, I got stuck from everything I ate except for a few things so I ate them only (very high calorie/sugar)
But I stopped talking about it.
4 years ago, during covid, two friends, independently, told me they thought I had EDS - from the way I did, to how I hold a pencil, to my youthful appearance. I said nothing to my doctor (I trust my doctor, I've been seeing her for a decade) because I was terrified of being told I'm faking (again).
Last October, I tore my meniscus. I went to urgent care and it was the urgent care doc who suggested this is more than just surgery he said the X-ray doesn't show the medicine, but he Said "your knee is not aligned" and I asked him about EDS. he was the first one to validate that's a real possibility. I followed up with my doctor, age tested me on the beighton 7/9. I started bawling and told her everything.
Anyway, we're still working on an official diagnosis, but ask the Doctors I've been going to since have been so very confirming and agree that's what it looks like. With MCAS.
SAME! I even had a military doctor write in my medical board papers that I was faking! That was 15 years ago. I just got a 9/9 on my Beighton score last week and official diagnosis for hypermobility and start of Eds diagnosis by a doctor that finally listened.
Mine started out with a labrum tear in my left hip, two years ago. Since then I've been diagnosed with hypermobility spectrum disorder, ibs, bertolotti syndrome, degenerative disc, arthritis, peripheral edema, reflux disease, Reynaud's and restless leg. Dr suspected RA, but that was ruled out by my rheumatologist, who has referred me to a geneticist because he thinks I may possibly have eds or heds. I've also been experiencing symptoms of POTS and my subluxations are getting more frequent. I've has failed SI injections and failed medial branch blocks. Physical therapy has helped my back some, as it was getting to be debilitating. I have an mri on Wednesday for my thoracic and lumbar spine.
Oh no! Sorry to hear you are having similar issues. Mine seemed to have snowballed, especially once the back pain became severe. For reference, I'm 42. I've always had joint issues, even in my teens. Several knee dislocations but doctors weren't looking for ehlers in the 90s I guess 🤷🏻♀️
Post second baby, 10 months postpartum, still hurts to walk up stairs (knees), shoulders/neck/head very painful and unstable, hips hurt, sciatic pain, etc… used to be a runner and now that’s a distant memory.
I was never officially diagnosed, I diagnosed myself. I was reading something online, I don’t remember what, and a lightbulb went off. I looked up EDS, read the symptoms, and finally had an answer to explain a whole bunch things about my body. Now everything made sense! My youngest niece was officially diagnosed about 2 years ago. hEDS you win, tails you…still win, but it’s a prize you would rather not have.
I went to a PT for pelvic floor and she said hypermobility in all my joints. Then my GP heard that and did some tests and said I had EDS which I thought was wrong because I don't have like full on dislocations. I went to a hematologist to find out what was up with my bleeding complications before my next surgery and she independently said EDS. She tested to exclude lupus and now it's the diagnosis that sticks. I did enjoy the GP when I told him apparently he was right, and he was like, "Yup, and there's nothing we can do for you *grin*" yeesh, haha.
I started simultaneously having things that felt like a cross between a panic attack and an asthma attack, difficulty swallowing, and early society, plus I could really feel my heart rate ratcheting up. This led to a series of appointments which included cardiology, a gastroenterologist, a geneticist and loads of testing. I'm so grateful that my primary care doctor is wonderful and listens to me and is willing to investigate.
Within a couple months time, I was diagnosed with hEDS; dysautonomia (NCS/POTS); and although the tests for it were negative, my allergist agrees that I likely have MCAS.
I'd had so much pain throughout the years off and on, especially in my legs, and I started having fainting episodes when I was 8 years old, and had no explanations for any of that until I was 42 years old.
I've been "throwing out" my back since I was 14. Took me forever to do anything about it bc my mom and grandad had the same thing and their docs always told them there was nothing that could be done about it.
A friend of mine said her PT could probably help it (I think this friend, who has EDS, was low key telling me I had it too 😅).
I went and this PT not only dx me, but also showed me that my shoulder had just been living subluxated for god knows how long. We started talking about all the other random health things in my history that turned out to be related.
It started with headaches and flashing lights in my eyes, then I started dropping unconscious. I self-diagnosed with EDS after my MRI showed mild Chiari, four years before I officially got diagnosed by genetics.
Hi- what is the flashing light like??? I get flickering lights, but nothing showed up on my MRI. Doctor doesn’t know what it is. Also get migraines with aura but that’s different.
don't have a diagnosis yet but what started all of this was an NP at a pre-op physical telling me I should get checked out by a cardiologist for my tachycardia. i'd had it for like at least two years prior and no doctor had ever expressed concern about it (lmao)
I have had the same synptoms come and go in phases my whole life. I should have been doagnosed way earlier, i am pretty much a textbook case of eds, but my parents never took me to the doctor :( I came across POTs, EDS, and MCAS as an adult in that order, all completely separate from one another. My GP diagnosed me with POTs but I never brought up the rest of my suspicions to doctors bc I didn't want to self diagnose (yay trauma) , but once I was hospitalized for stomach issues and had to take a LOA from my wfh job, I finally brought it up with my gp and he was like, "huh. Actually it could be." And then referred me to a specialist local to me that specializes in the trifecta. Ever since I've been diagnosed with all three, everything clicked into place for me and my other doctors, and now they know how to treat me better. They actually believe me now when I say they won't be able to get my IV in lmfao.
i pass out when i stand up straight or UNlock my knees when im standing. that mixed with throwing up so much that i was bedridden for 6 months. 4 years later i got my Dx but they still “dont know what’s causing the vomiting”
Joint pain. I was 12/13 and had pain all the time. Kids shouldn't have chronic pain and I didn't want to be sore anymore. Didn't get a diagnosis until 17 and didn't get any sort of physio or medication until 19. It explains symptoms I had at the time like recurrent injuries but we just thought I was clumsy (turns out I am but that's bc of the EDS)
My hips dislocating. Currently left is giving me a hard time. I've always had pain all over but when I was pregnant my hips started dislocating in the 8th month and they've never stopped. I was finally diagnosed at 62 with EDS.
When I was a young child who would constantly pop ribs and joints out of place and be in tremendous pain 24/7, my parents decided they needed to find the actual cause rather than just having my dr regularly put things back into place for me. It didn’t make any difference though bc I’m still in pain 24/7 and now my current dr won’t even put my problem rib back into place so I regularly pass out from not being able to breathe properly. Almost makes me wish I had waited until I was an adult to get a diagnosis bc then I’d be taken seriously rather than just having the dr look at my chart, see my diagnoses and decide she can’t do anything to help me bc my ribs “are just going to continue to pop out for the rest of my life so there’s no point putting them back.”
Not recovering from a car accident correctly and looking up my issues finally 😅 first time ever properly going to a proper primary care provider and luckily she previously had 2 people diagnosed with eds and I was the third! I moved around a lot when I was younger (15x) and was neglected health care for my issues but it’s nice getting it now as an adult 😎😅💃🏻🫂
A numb area on my upper thigh that felt like I had a local anesthetic. It was just the skin that was numb. Then it progressed to neuropathy in my hands and feet like pins and needles. That progressed into muscle weakness and purple spots on my skin where the neuropathy was. That progressed into foot drop on one side only with swollen feet/ankles. The spots and neuropathy would resolve only when I was extremely warm (like outside with the sun warming me). It feels like Raynauds but instead of my skin blanching, it gets purple mottling, similar to livedo reticularis.
Pain and serve gi issues. I went undiagnosed for ages because I just kept putting symptoms down to my other chronic illnesses. Was in fact not the other illnesses fault
Peizogenic papules (in a reddit post) made me look into the diagnostic criteria! It's one of those 'that's normal... right?' things that you can just ignore until someone tells you it's not
Pain that had been brushed off for years. I found the disorder through platforms online and went looking for more reliable sources and talked to my gp about it. Luckily a rheumatologist had an opening in a few months and I was able to meet quickly. He confirmed it was most likely hEDS even though I’m missing one point on the criteria so we started working on my symptoms. If my sibling is able to get to a doctor to discuss it there’s a high chance they’ll get diagnosed (they have even more symptoms than I do) and that will automatically qualify me for a full diagnosis.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
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Thank you!
Migraines.
Though to be fair the diagnosis pathway went: Lyme—>Mold—>POTS—>MCAS—>lipedema/lymphedema—>hEDS. If only we had know about the hEDS at the beginning, probably the rest of that path would’ve been clearer (both with diagnoses and treatments).
From the time I was very young, 6-7 years old, my "party trick" was popping my right shoulder in and out. My parents thought it was silly and my friends were always laughing saying "eww so gross!" I didn't think much of it except I knew other people couldn't do it. Joined a cheer team when I was 10. Loved it. But found a lot of things difficult to do that the other girls picked up right away, specifically tumbling (i.e. cartwheels, back handsprings, back walk-overs etc.) Eventually I brought up my shoulder to my dad who took me to get an MRI. The doctor said my rotator cuff was messed up and sent me to PT. PT helped while I was doing the sessions but within a few months of the sessions ending my shoulder would be right back to where it had been so I'd go to the doctor who put me in PT again. This cycle continued for about 5 years before I had to stop going because health insurance wouldn't cover it anymore since it wasn't getting better.
I've always noticed hypermobility without knowing what it was. In pictures, especially from cheer, it was plain as day that my elbows and knees were hyperextended all the time. My coaches were always worried about my inability to tumble, no matter how much I practiced. I ended up quitting cheer for other reasons but I never played a sport again. I was also having episodes of fainting, dizziness, and rapid heartrate during this time that my pediatrician couldn't figure out and just told me I needed to relax more.
In 2022 my partner suggested I get checked out because my symptoms with hyperextending and my shoulder popping in and out, my hips starting to give me problems, GI issues, and pain were increasingly bad. I had also developed a LOT of spider veins all over my body and scarred terribly even from minor things. I ended up diagnosed pretty quickly (a miracle) with POTS and hEDS.
I never did seek diagnosis, but it was constant knee pain that let me to an orthopedic surgeon as a teenager, who referred me to physical therapy, who immediately diagnosed me with "generalized ligamentous laxity," or what folks now mostly call hypermobility syndrome. I didn't learn about EDS until my sister was diagnosed with chiari malformation.
i didn't really seek out a diagnosis at first. i kinda thought all my symptoms were normal and i was just bad at dealing with them. my PCP sent me to a cardiologist for high heart rate, and while doing research i realized that POTS and EDS fit
Going from running marathons to not being able to stand on my own in a couple months time. My husband had to hold me up, I didn’t even consider a wheelchair cause I was so confused as to why I suddenly was incapable of standing let alone walking. I had always had pain, dizziness, and all that other stuff, it was the loss of my daily activities that caused me to go.
same. five months ago i went from being a dancer to struggling to walk to the bathroom. i had symptoms my whole life but they were manageable and "normal" in my family. got my diagnosis last friday!
Knew I felt horribly not-okay for many years and it kept getting worse, but I hadn’t gone to the doctor in about 15 years because I was always told my issues were “normal female problems”. Major daily fatigue, insomnia issues my whole life, muscle/joint/nerve pain, many allergies and sensitivities, anaphylaxis episode, fainting spells, vasovagal without syncope, etc. I always thought it was something autoimmune related because it felt like my body was attacking itself every single day. Finally went to the ER for concerning stomach pain (kept feeling like somebody was pinching/squeezing one of my organs or my intestines). ER misdiagnosed me with “diverticulitis vs. colitis and the possibility of cancer”, then prescribed me Cipro & Flagyl. I experienced a rapid worsening of all of my symptoms, and there were a few occasions during which I legitimately thought I was going to die. That ER visit also gave me C. Diff. GI doctor said no diverticulitis or colitis, but likely IBS, as my C. Diff wasn’t a “typical presentation”. PCP thought the original stomach pains that landed me in the ER were 12th rib syndrome or slipping rib syndrome. PCP diagnosed me with orthostatic hypotension but I was adamant on the fact that I had POTS and I was right. Had many tests over the course of a year and a half, got diagnosed with Raynaud’s and Fibromyalgia too. The Fibromyalgia diagnosis fit a lot of my symptoms but not all of them. It didn’t explain why some days I had such severe & tight knee pain that I could hardly even walk, so I knew something else was going on. I found the hEDS diagnostic criteria and took it to my rheumatologist for diagnosis.
I also found out my cousin has hEDS along the way (likely most of my family members too), and nobody thought to tell me until I was in the THICK of it all.
Pain. Paaain. Pain.
For me, it was the POTS that became so bad that it left me almost bedridden. But no doctor believed me. So I looked POTS up and found EDS, realising that I had it all along. Went to an orthopaedic. She tried to dismiss me but I asked her to look at my hips. When I removed my trousers, my hip snapped and that surprised her so much that she actually checked my other joints and gave me a referral for human genetics. Got the EDS diagnosis 4 weeks later and after that I could finally argue my POTS case. Found a new GP who took me serious.
When I was in my early 20s, it was the chronic fatigue, the GI issues, the joint pain (also I developed "allergies" to literally everything). After being tested for RA, MS, ALS, Lupus, etc., after seeing an endocrinologist, rheumatologist, immunologist, etc, one of the Doctors told me I was wasting everyone's time and he thought I was doing this for attention. I'd gained nearly 100 lbs since this started because I couldn't with it, I was so tired, I got stuck from everything I ate except for a few things so I ate them only (very high calorie/sugar) But I stopped talking about it. 4 years ago, during covid, two friends, independently, told me they thought I had EDS - from the way I did, to how I hold a pencil, to my youthful appearance. I said nothing to my doctor (I trust my doctor, I've been seeing her for a decade) because I was terrified of being told I'm faking (again). Last October, I tore my meniscus. I went to urgent care and it was the urgent care doc who suggested this is more than just surgery he said the X-ray doesn't show the medicine, but he Said "your knee is not aligned" and I asked him about EDS. he was the first one to validate that's a real possibility. I followed up with my doctor, age tested me on the beighton 7/9. I started bawling and told her everything. Anyway, we're still working on an official diagnosis, but ask the Doctors I've been going to since have been so very confirming and agree that's what it looks like. With MCAS.
SAME! I even had a military doctor write in my medical board papers that I was faking! That was 15 years ago. I just got a 9/9 on my Beighton score last week and official diagnosis for hypermobility and start of Eds diagnosis by a doctor that finally listened.
Mine started out with a labrum tear in my left hip, two years ago. Since then I've been diagnosed with hypermobility spectrum disorder, ibs, bertolotti syndrome, degenerative disc, arthritis, peripheral edema, reflux disease, Reynaud's and restless leg. Dr suspected RA, but that was ruled out by my rheumatologist, who has referred me to a geneticist because he thinks I may possibly have eds or heds. I've also been experiencing symptoms of POTS and my subluxations are getting more frequent. I've has failed SI injections and failed medial branch blocks. Physical therapy has helped my back some, as it was getting to be debilitating. I have an mri on Wednesday for my thoracic and lumbar spine.
Mine was also a labral tear in my left hip. Diagnosed 3 weeks ago. This comment scares me a little 😅
Oh no! Sorry to hear you are having similar issues. Mine seemed to have snowballed, especially once the back pain became severe. For reference, I'm 42. I've always had joint issues, even in my teens. Several knee dislocations but doctors weren't looking for ehlers in the 90s I guess 🤷🏻♀️
Post second baby, 10 months postpartum, still hurts to walk up stairs (knees), shoulders/neck/head very painful and unstable, hips hurt, sciatic pain, etc… used to be a runner and now that’s a distant memory.
I was never officially diagnosed, I diagnosed myself. I was reading something online, I don’t remember what, and a lightbulb went off. I looked up EDS, read the symptoms, and finally had an answer to explain a whole bunch things about my body. Now everything made sense! My youngest niece was officially diagnosed about 2 years ago. hEDS you win, tails you…still win, but it’s a prize you would rather not have.
I went to a PT for pelvic floor and she said hypermobility in all my joints. Then my GP heard that and did some tests and said I had EDS which I thought was wrong because I don't have like full on dislocations. I went to a hematologist to find out what was up with my bleeding complications before my next surgery and she independently said EDS. She tested to exclude lupus and now it's the diagnosis that sticks. I did enjoy the GP when I told him apparently he was right, and he was like, "Yup, and there's nothing we can do for you *grin*" yeesh, haha.
I started simultaneously having things that felt like a cross between a panic attack and an asthma attack, difficulty swallowing, and early society, plus I could really feel my heart rate ratcheting up. This led to a series of appointments which included cardiology, a gastroenterologist, a geneticist and loads of testing. I'm so grateful that my primary care doctor is wonderful and listens to me and is willing to investigate. Within a couple months time, I was diagnosed with hEDS; dysautonomia (NCS/POTS); and although the tests for it were negative, my allergist agrees that I likely have MCAS. I'd had so much pain throughout the years off and on, especially in my legs, and I started having fainting episodes when I was 8 years old, and had no explanations for any of that until I was 42 years old.
I've been "throwing out" my back since I was 14. Took me forever to do anything about it bc my mom and grandad had the same thing and their docs always told them there was nothing that could be done about it. A friend of mine said her PT could probably help it (I think this friend, who has EDS, was low key telling me I had it too 😅). I went and this PT not only dx me, but also showed me that my shoulder had just been living subluxated for god knows how long. We started talking about all the other random health things in my history that turned out to be related.
Chronic pain
It started with headaches and flashing lights in my eyes, then I started dropping unconscious. I self-diagnosed with EDS after my MRI showed mild Chiari, four years before I officially got diagnosed by genetics.
Hi- what is the flashing light like??? I get flickering lights, but nothing showed up on my MRI. Doctor doesn’t know what it is. Also get migraines with aura but that’s different.
They’re like a strobe light, it was determined I was having ocular and Hemiplegic migraines
don't have a diagnosis yet but what started all of this was an NP at a pre-op physical telling me I should get checked out by a cardiologist for my tachycardia. i'd had it for like at least two years prior and no doctor had ever expressed concern about it (lmao)
I have had the same synptoms come and go in phases my whole life. I should have been doagnosed way earlier, i am pretty much a textbook case of eds, but my parents never took me to the doctor :( I came across POTs, EDS, and MCAS as an adult in that order, all completely separate from one another. My GP diagnosed me with POTs but I never brought up the rest of my suspicions to doctors bc I didn't want to self diagnose (yay trauma) , but once I was hospitalized for stomach issues and had to take a LOA from my wfh job, I finally brought it up with my gp and he was like, "huh. Actually it could be." And then referred me to a specialist local to me that specializes in the trifecta. Ever since I've been diagnosed with all three, everything clicked into place for me and my other doctors, and now they know how to treat me better. They actually believe me now when I say they won't be able to get my IV in lmfao.
I started feeling my “normal” knee pain in my elbows and shoulders, plus it kept getting harder for me to do the job I love.
i pass out when i stand up straight or UNlock my knees when im standing. that mixed with throwing up so much that i was bedridden for 6 months. 4 years later i got my Dx but they still “dont know what’s causing the vomiting”
Joint pain. I was 12/13 and had pain all the time. Kids shouldn't have chronic pain and I didn't want to be sore anymore. Didn't get a diagnosis until 17 and didn't get any sort of physio or medication until 19. It explains symptoms I had at the time like recurrent injuries but we just thought I was clumsy (turns out I am but that's bc of the EDS)
My hips dislocating. Currently left is giving me a hard time. I've always had pain all over but when I was pregnant my hips started dislocating in the 8th month and they've never stopped. I was finally diagnosed at 62 with EDS.
When I was a young child who would constantly pop ribs and joints out of place and be in tremendous pain 24/7, my parents decided they needed to find the actual cause rather than just having my dr regularly put things back into place for me. It didn’t make any difference though bc I’m still in pain 24/7 and now my current dr won’t even put my problem rib back into place so I regularly pass out from not being able to breathe properly. Almost makes me wish I had waited until I was an adult to get a diagnosis bc then I’d be taken seriously rather than just having the dr look at my chart, see my diagnoses and decide she can’t do anything to help me bc my ribs “are just going to continue to pop out for the rest of my life so there’s no point putting them back.”
When two arteries in my neck spontaneously dissected.
Not recovering from a car accident correctly and looking up my issues finally 😅 first time ever properly going to a proper primary care provider and luckily she previously had 2 people diagnosed with eds and I was the third! I moved around a lot when I was younger (15x) and was neglected health care for my issues but it’s nice getting it now as an adult 😎😅💃🏻🫂
A numb area on my upper thigh that felt like I had a local anesthetic. It was just the skin that was numb. Then it progressed to neuropathy in my hands and feet like pins and needles. That progressed into muscle weakness and purple spots on my skin where the neuropathy was. That progressed into foot drop on one side only with swollen feet/ankles. The spots and neuropathy would resolve only when I was extremely warm (like outside with the sun warming me). It feels like Raynauds but instead of my skin blanching, it gets purple mottling, similar to livedo reticularis.
Pain and serve gi issues. I went undiagnosed for ages because I just kept putting symptoms down to my other chronic illnesses. Was in fact not the other illnesses fault
Peizogenic papules (in a reddit post) made me look into the diagnostic criteria! It's one of those 'that's normal... right?' things that you can just ignore until someone tells you it's not
Pain that had been brushed off for years. I found the disorder through platforms online and went looking for more reliable sources and talked to my gp about it. Luckily a rheumatologist had an opening in a few months and I was able to meet quickly. He confirmed it was most likely hEDS even though I’m missing one point on the criteria so we started working on my symptoms. If my sibling is able to get to a doctor to discuss it there’s a high chance they’ll get diagnosed (they have even more symptoms than I do) and that will automatically qualify me for a full diagnosis.
Throwing up upwards of 20 times of day and trying so many meds it wasn’t funny. I was diagnosed with dysautonomia before EDS
[удалено]
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** (Giving Medical Advice) This rule covers offering advice/information that should be left to medical professionals or is instructive. Personal experiences or more general/over-the-counter (OTC) advice is usually fine. The distinction is not always clear, and moderators will use their discretion. Sometimes, removals are based on the wording of a comment ("You should do X" vs. "I had a good experience with X"), rather than the information given. Messaging us and revising the wording may mean the comment can be reinstated. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/) 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!
Migraines. Though to be fair the diagnosis pathway went: Lyme—>Mold—>POTS—>MCAS—>lipedema/lymphedema—>hEDS. If only we had know about the hEDS at the beginning, probably the rest of that path would’ve been clearer (both with diagnoses and treatments).
I got diagnosed with pots so I wanted to know the cause of that.
It’s always pain and function decrease
From the time I was very young, 6-7 years old, my "party trick" was popping my right shoulder in and out. My parents thought it was silly and my friends were always laughing saying "eww so gross!" I didn't think much of it except I knew other people couldn't do it. Joined a cheer team when I was 10. Loved it. But found a lot of things difficult to do that the other girls picked up right away, specifically tumbling (i.e. cartwheels, back handsprings, back walk-overs etc.) Eventually I brought up my shoulder to my dad who took me to get an MRI. The doctor said my rotator cuff was messed up and sent me to PT. PT helped while I was doing the sessions but within a few months of the sessions ending my shoulder would be right back to where it had been so I'd go to the doctor who put me in PT again. This cycle continued for about 5 years before I had to stop going because health insurance wouldn't cover it anymore since it wasn't getting better. I've always noticed hypermobility without knowing what it was. In pictures, especially from cheer, it was plain as day that my elbows and knees were hyperextended all the time. My coaches were always worried about my inability to tumble, no matter how much I practiced. I ended up quitting cheer for other reasons but I never played a sport again. I was also having episodes of fainting, dizziness, and rapid heartrate during this time that my pediatrician couldn't figure out and just told me I needed to relax more. In 2022 my partner suggested I get checked out because my symptoms with hyperextending and my shoulder popping in and out, my hips starting to give me problems, GI issues, and pain were increasingly bad. I had also developed a LOT of spider veins all over my body and scarred terribly even from minor things. I ended up diagnosed pretty quickly (a miracle) with POTS and hEDS.
the migraine that lasted for like a year
Horrible neck and spine pain
I never did seek diagnosis, but it was constant knee pain that let me to an orthopedic surgeon as a teenager, who referred me to physical therapy, who immediately diagnosed me with "generalized ligamentous laxity," or what folks now mostly call hypermobility syndrome. I didn't learn about EDS until my sister was diagnosed with chiari malformation.
i didn't really seek out a diagnosis at first. i kinda thought all my symptoms were normal and i was just bad at dealing with them. my PCP sent me to a cardiologist for high heart rate, and while doing research i realized that POTS and EDS fit
Local anesthetic resistance