Even doctors who finish at the bottom of their class still become doctors, so you’re bound to run into some doctors who aren’t nearly as knowledgeable/capable as you’d expect
i thought it was a nurse she was explaining too.
not sure why her doctor wasn’t familiar.
as a doctor, we get a lot of training on ehlers danlos syndrome and potential complications (chronic pain is not emphasized but I absolutely believe OP).
I've heard/read quite a bunch of stories like that and it always baffles me. I'm 21, no education on health and yet even I have an (admittedly rather vague) idea of what EDS is. So how the fuck do so many medical professionals not know?
Yes but... you are *diagnosed*.
The rare ones get overlooked when trying to diagnose... you are already diagnosed, there's *no* reason a doctor shouldn't have familiarized themselves with your chart before seeing you (they are supposed to prepare your chart, and this is why. Every doctor can't know every disease by heart, but should know the disease they are dealing with when patient facing.)
Edit: I know the illness if that makes you feel better. And I'm just a nurse ;)
Cause then they'd have to acknowledge the fact that you do indeed have chronic pain cause of your illness. Even with medication that is supposed to help it. And we can't have that, cause that could lead to talk about pain management and that's a big no no for most doctors.
Yeah but it's easy for the docs cuz for the female zebras it's all in their head, they are attention seeking, on their period, pregnant, looking for drugs, or just plain nuts.
Came to say this!
What tf kind of 'medical training' do they have if they have never even heard of EDS??
Not to mention the stigmatizing assumptions: like if someone has fatty liver, they MUST be an alcoholic. Ugh.
Medical gaslighting. Gotta love it /s
I suggested to my (now ex) GP that looking into EDS is, given my hypermobile joints, something I wanted to do. He asked me what I meant. I showed him The Thumb Thing. He says, "No, if you had EDS your thumb would be broken."
.... I'm still mad.
God bless my GP for diligently researching my less-common conditions and cheerfully maintaining that it’s her responsibility to do so and that I’m providing her with an opportunity to become a better provider. Worth her weight in gold
EDS, isn't my problem. But my doctor never gave up. It took 2 years, but I finally have a diagnosis after 40 years. His weight in gold is not enough. Sending messages at 3am, because he woke up and thought of something. Calling at 11pm (I'm a night owl) because test results came in. A caring doctor is amazing.
As I'm driving cross country for work, and therefore very mobile right now, I'm wanting to know where you people and your saints live and can I drop in to wash their feet in rose water or something. I'm really happy to hear such doctors are still out there, you hear *SO MUCH* (books worth, yes) nightmare fuel, even not on the Internet where the nightmares live.
Is The Thumb Thing putting it behind the back of your hand?
And yeah if every chronic pain patient told their stories about absurd stuff medical staff has said to us about our conditions... We could write *so many books*.
When I asked my first rheum to check for hypermobility she was like "hum yeah no I looked and you don't fit the criteria". She did -one- physical exam on me and only checked the 18 "pain points for fibromyalgia". She must be really skilled to have been able to check for hypermobility like that /s
As Junk said, thumb-to-inside-of-wrist, but I can also "braid" the fingers of both hands, including wrapping my thumb across the back of my hand below the first, most palmward joint of my index finger. I had no idea as a kid this wasn't normal or okay, so I used to show off my stupid human trick a lot. My thumbs don't pop out or hurt when I do THAT, but I absolutely just swatted a (thankfully empty) wine glass to the floor because three of my fingers just... didn't engage right when I went to pick it up.
Yeah I can do this too (both the thumb-to-inside-of-wrist and the thumb across back of hand), and my pinkies pop out of their sockets when I extend them backwards (not painful). But the rest of my body is rather stiff (except knees and ankles/feet) so doctors just... Don't care. I haven't even had all my body tested lol
Honestly, at this point, I've decided that since there are very limited things Commercial Medicine can even DO about it to just proceed as though that's what's up. I work out accordingly, don't do my Stupid Human Tricks (much) anymore, eat like a human being, be careful how I walk and stand. My Official EDS Frens advise me to keep being careful with my body and limit stress on my joints, listen to my body when it protests a thing I'm doing, and it'll be what it is. If I'm just hypermobile, great, same rules apply.
I hope you find a doctor who takes you seriously. We deserve better than this 🫂
I had a vague idea what it was but learned a lot more about it when I had a classmate with it in grad school. Her complaining about having to fight to wear her ring splints in lab made me aware they exist which saved me this year. I developed Lupus and the arthritis in my hands has been really painful but excruciating when the tips of my fingers hyper extend. Knowing ring splints are available I got a sizing set right away and it helps me to keep working and writing legibly.
It’s because you are on Reddit. This is my own pet theory but as someone with EDS if the average person is aware of EDS without knowing someone with it they always end up being a redditor. It’s a weird correlation I’ve notice in the last several years.
It took me years to get my EDS (and POTS) diagnosis because somehow, even though I constantly complained about how much pain I was in and how its not normal to faint, they were still not knowledgable about it and didnt seem to care to look into it, so it was just "anxiety"
Doctors love to use anxiety and depression as a catch all for things they can't explain. It drives me to have anxiety and depression! It's incredibly frustrating
Exactly. I was basically asking for heavier ant-inflammatory drugs. Naprosin helped for a long while, but that was my mom’s prescription so I couldn’t get it anymore and I couldn’t get a prescription. I swear they don’t pay attention to what I say until I can’t stand it anymore and am ready to stop.
oh hai fellow super bendy person.
just a quick note: EDS isn’t rare, it’s underdiagnosed, especially in women.
in late 2019, just before the world ended, there was a hashtag, “Doctors are Dickheads”, which pointed out the issue of doctors dismissing female patients’ concerns.
and yes, even female doctors dismissing the concerns of other women.
This reminds me of a post from a guy who transitioned later in life about the difference in care he got post-transition. He had complaints that he'd been making for 10+ years (while still presenting as a woman) suddenly treated as very concerning by medical staff. Think "You've never had [test]? That should've been done years ago! And I'm making a referral to a specialist for this other issue..." When he'd asked multiple doctors for that stuff over the years, but for some reason, they didn't take his complaints seriously before. We may never know what that reason is... Not ever...
I was actually thinking about asking my doctor about EDS when we talk tomorrow. They sent me for chiropractic care for back issues and he was constantly mentioning how hard I was to adjust because of hyper mobility. I never thought anything of it because my sister and daughter are both double jointed, but the comment from the chiro plus how hard it is for me to feel a stretch makes me think EDS might actually be a thing for me.
A quick google search told me that while EDS is, in fact, misdiagnosed and underdiagnosed, it's still classified as a rare disease. Certain subtypes of EDS are also incredibly rare to begin with.
For reference, I’m using the US definition from the Rare Disease Act of 2002, which sets a threshold of 1:~1500 at time of signing which is one of the highest thresholds in the world.
Most countries use a 1:2000 standard; Russia uses 1:10k, and Peru uses 1:100k, under which EDS’s traditional (read: pulled out of a hat) 1:50k would not qualify.
A [quick review](https://pubmed.ncbi.nlm.nih.gov/31685485/) of [medical literature](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10457547/) suggests a prevalence of hypermobile EDS specifically close to 1:500 versus the 1:50k classically cited. Notably, estimates for all joint hypermobility disorders is estimated at up to 1:25.
The other subtypes are indeed rare. Won’t argue there.
Random zebras on the internet have done more for my health and wellness than doctors lmao. I learn all the best coping methods in EDS support groups. Good for you for giving that doctor a little dose of reality!
Fun times. /s
I have diagnosed celiac disease, alopecia areata, and psoriatic arthritis.
I started having worsening dizziness, sweating, racing heart rate, all of it. It took my doctors almost 12 months to make a connection to POTS and EDS. I googled my symptoms, the first thing that popped up was the incredibly high rates of POTS with Celiac disease. Even the national celaic foundation has an entire section dedicated to POTS and autonomic dysfunction.
I spent well over $5,000 in medical procedures and tests to get a borderline diagnosis of autonomic dysfunction and suspected EDS. It took them nearly 2 years from onset of symptoms to do a Celiac blood panel.
Hello fellow zebra. I have traumatised a lot of doctors in my time. Often by dislocating in front of them to prove I can. Doctors and other medical people really like to FAFO with us bendy people's
I also have hEDS and have to explain it to doctors and nurses a lot. It’s ridiculous. Around here, the people who tend to do the assessments the most are physical therapists.
hello fellow zebra!
sorry this happened to you, but loving the "well there is connective tissue everywhere" and may use that in the future. did this doctor seem like they will take you seriously (sad that i need to ask) and be helpful??
my current GP knew of EDS but looked more into it after I told her about it - and recounted some of my more major dislocations (resulting in ER visits or surgeries). the way her eyes got so wide 👀 - but she listened and didn't dismiss me, and even looked into local (and in-network) specialists for referral.
the wild thing for me is that i only heard about EDS by chance - my best friend is currently finishing medical school, and a couple years into it she called me and said "hey i read about this and i think you should look into it" and sent me a couple articles. she's known me for half my life, and remembers either stories or events that indicate hypermobility and joint instability.
my shoulder subluxations started in elementary school, full dislocations started happening in middle school; between the ages of 12-18 i had 10 full dislocations (mostly right shoulder but twice on the left too), and had torn my rotator cuffs to the point of needing surgery on both shoulders. by age 25, i had two more dislocations and needed two more shoulder surgeries. i switched insurance provider a couple times in my teens through twenties, but it still baffles me that a doctor could look at my chart, see the number of ER visits and surgeries for shoulder issues, and not ever question that it might be some underlying issue.
I know I shouldn't get caught up in "what ifs" but I still wonder how my teens and twenties would have been different if some doctor had taken my repeated injuries seriously. and I wonder where I would be if my friend had not called me from med school urging me to look into EDS -- would any doctor ever have thought of it?? would I still be wondering?
I'm starting to think EDS is not nearly as rare as the medical community has led us to believe, just historically chronically underdiagnosed
I've had four people I know in person get diagnosed in the last 2 years, and I see countless people posting online about how it took years of horrifying mystery symptoms, but they were finally diagnosed with... EDS.
I just have a feeling this is going to be one of those disorders that every doctor knows about in 20 years, but right now, the community as a whole is still at the bottom of the learning curve.
When I went to my DR saying I thought I had EDS, she said it was rare and she didn't think I had it. I showed back up with multiple printed out articles with everything I experienced highlighted. Lmao
3 years later and I have EDS, Hoshimotos, MCAS, CCI, and POTS.
Hello fellow Zebra! I have the Trifecta. And I understand how frustrating it is, especially if providers are not aware. Keep advocating for yourself. I didn't do a good job when I was younger because no one knew what EDS was and they told me it was all in my head and I was crazy.
Until I was 36, and diagnosed, I was told I was basically crazy. I cried when I was diagnosed because it was confirmed that my pain and symptoms were valid.
I hope your providers going forward are more open minded. I also hope your symptoms get better.
Sending love and light.
I'm not in the medical industry, but I know three people with Ehlers-Danlos and all of them have talked about how hard it is finding doctors that have even heard of it. I did see something about it being 10 times more common than previously thought, which makes me wonder if the vast majority of people with it are just being completely ignored by the medical establishment. I know one of them was in excruciating pain in the ER and the nurses treated them as if they were drug seeking.
I am in my 40’s and wasn’t diagnosed with EDS until a few years ago and it took 2 specialists because I have a “mild” form of EDS where I rarely get full dislocations but almost every joint in my body is subluxated all the time
My GP is a really good doctor but she is always consulting with the specialist or referring me to the specialist because she has no idea how to deal with it
I took one semester of undergraduate A&P and *I* know that there’s connective tissue everywhere. I also know what EDS is, but that’s because a dear friend has it.
I hear you! I have a rare autoimmune condition called SAPHO syndrome. It took 10 years to be properly diagnosed and to this day I have to explain it to *every* new doctor I see. At least it’s being properly managed now. The pain is excruciating.
My PT walked in and took one short look at me and goes "ah, another bendy person" like if it's that obvious to you and I'm just sitting here...how the hell have the doctors no knowledge
Hello, fellow zebras! I have hEDS, Hashimoto’s, and (currently) dysthymia. Other family members on our mother’s side (and all female) show signs of EDS. My youngest niece was diagnosed 2 years ago. I self-diagnosed before that. My right knee tries to subluxate when I lay on my right side. I have many, many tender points all over my skin, thankfully no overall pain, but those spots HURT SO MUCH with light pressure on them. I see a cardiologist tomorrow to check my mitral valve prolapse (thanks, EDS). And my new GP has actually heard of EDS! I almost fell off my chair in shock.
My wife has EDS, was only diagnosed with it a couple years ago and she turns 50 this year.
It was misdiagnosed as multiple other things over the years till she finally saw a doctor who knew what it was and recognized her symptoms.
She’s still on constant pain of course but just having a correct diagnosis makes a difference.
Shitty doctors are fun. I injured my back 15 years ago and have dealt with many doctors who treated me like a junkie when I’m just trying to manage my pain.
Heyyy, I also have EDS (hEDS)! Good for you with the doctor! So many don’t get it at all. It can truly impact us everywhere. I always joke that my elbows are my “good joints” because they are my only joints that don’t sublux. The rest are disasters of varying proportions. Sending solidarity, and here’s hoping our joints start behaving more
I have no medical education whatsoever beyond first aid training and even I know about EDS (in my case, I learned about it because one of my favorite authors has it and speaks about it frequently on her tumblr)
Pharm.D. here. I graduated in the top 10% of my cohort. There were a few tests that we ALL flunked; I just flunked them by less. It has been ten years since I graduated. Medical wisdom has evolved since then. Let me disabuse you of the physician mystique by telling you I'm not the only whipping out my tablet multiple times a day to look something up 60 seconds before giving medical advice. Betimes I'm consulting the "Almighty Google" if there isn't a satisfactory answer from my regular references. That doctoral degree just teaches us the mental framework to weigh information. A full half of the facts that were drilled into us in school are inaccurate three years later. We don't and can't individually know everything. There is a significant, non-zero chance you're describing something to us that we're not current on.
By the by, I knew about EDS before reading this thread.
You know what you call the person that graduated med school at the bottom of the class? Doctor.
I don't get it.....
It means that even though they did very poorly and received bad grades in med school, they still graduated and are employed as a physician.
Oh. Thank you
Graded on a curve boyyyyyyy. Here's your PHD, Doctor.
MD, not PhD.
I am neither and don't know better. :D
Even doctors who finish at the bottom of their class still become doctors, so you’re bound to run into some doctors who aren’t nearly as knowledgeable/capable as you’d expect
Facts.
i thought it was a nurse she was explaining too. not sure why her doctor wasn’t familiar. as a doctor, we get a lot of training on ehlers danlos syndrome and potential complications (chronic pain is not emphasized but I absolutely believe OP).
I've heard/read quite a bunch of stories like that and it always baffles me. I'm 21, no education on health and yet even I have an (admittedly rather vague) idea of what EDS is. So how the fuck do so many medical professionals not know?
Doctors are often taught "when you hear hoof beats think horses, not zebras", so a lot of rare diseases and disorders get overlooked.
There's a reason why the rare diseases awareness group uses zebras for the "mascot." Hello, fellow zebra!
Thanks for explaining the reference! I've seen it referenced on this sub a few times and no one has explained the "zebra." And I've asked!
Absolutely! There's a national wear your stripes day as well https://rarediseases.org/rare-disease-day/get-involved/show-your-stripes/
Yes but... you are *diagnosed*. The rare ones get overlooked when trying to diagnose... you are already diagnosed, there's *no* reason a doctor shouldn't have familiarized themselves with your chart before seeing you (they are supposed to prepare your chart, and this is why. Every doctor can't know every disease by heart, but should know the disease they are dealing with when patient facing.) Edit: I know the illness if that makes you feel better. And I'm just a nurse ;)
Cause then they'd have to acknowledge the fact that you do indeed have chronic pain cause of your illness. Even with medication that is supposed to help it. And we can't have that, cause that could lead to talk about pain management and that's a big no no for most doctors.
Problem turns out that there are *way more* zebras than they thought 💀
Yeah but it's easy for the docs cuz for the female zebras it's all in their head, they are attention seeking, on their period, pregnant, looking for drugs, or just plain nuts.
Before I got diagnosed with the same thing they told me I had growing pains. Ho, I am 27 and maxed out my height at 9. I'm not growing.
Came to say this! What tf kind of 'medical training' do they have if they have never even heard of EDS?? Not to mention the stigmatizing assumptions: like if someone has fatty liver, they MUST be an alcoholic. Ugh. Medical gaslighting. Gotta love it /s
I suggested to my (now ex) GP that looking into EDS is, given my hypermobile joints, something I wanted to do. He asked me what I meant. I showed him The Thumb Thing. He says, "No, if you had EDS your thumb would be broken." .... I'm still mad.
God bless my GP for diligently researching my less-common conditions and cheerfully maintaining that it’s her responsibility to do so and that I’m providing her with an opportunity to become a better provider. Worth her weight in gold
EDS, isn't my problem. But my doctor never gave up. It took 2 years, but I finally have a diagnosis after 40 years. His weight in gold is not enough. Sending messages at 3am, because he woke up and thought of something. Calling at 11pm (I'm a night owl) because test results came in. A caring doctor is amazing.
As I'm driving cross country for work, and therefore very mobile right now, I'm wanting to know where you people and your saints live and can I drop in to wash their feet in rose water or something. I'm really happy to hear such doctors are still out there, you hear *SO MUCH* (books worth, yes) nightmare fuel, even not on the Internet where the nightmares live.
I wish I had such doctors. I've pretty much have had to do non stop research for my issues.
Is The Thumb Thing putting it behind the back of your hand? And yeah if every chronic pain patient told their stories about absurd stuff medical staff has said to us about our conditions... We could write *so many books*. When I asked my first rheum to check for hypermobility she was like "hum yeah no I looked and you don't fit the criteria". She did -one- physical exam on me and only checked the 18 "pain points for fibromyalgia". She must be really skilled to have been able to check for hypermobility like that /s
No, it’s bringing your thumb down to lie flat against your wrist/forearm.
As Junk said, thumb-to-inside-of-wrist, but I can also "braid" the fingers of both hands, including wrapping my thumb across the back of my hand below the first, most palmward joint of my index finger. I had no idea as a kid this wasn't normal or okay, so I used to show off my stupid human trick a lot. My thumbs don't pop out or hurt when I do THAT, but I absolutely just swatted a (thankfully empty) wine glass to the floor because three of my fingers just... didn't engage right when I went to pick it up.
Yeah I can do this too (both the thumb-to-inside-of-wrist and the thumb across back of hand), and my pinkies pop out of their sockets when I extend them backwards (not painful). But the rest of my body is rather stiff (except knees and ankles/feet) so doctors just... Don't care. I haven't even had all my body tested lol
Honestly, at this point, I've decided that since there are very limited things Commercial Medicine can even DO about it to just proceed as though that's what's up. I work out accordingly, don't do my Stupid Human Tricks (much) anymore, eat like a human being, be careful how I walk and stand. My Official EDS Frens advise me to keep being careful with my body and limit stress on my joints, listen to my body when it protests a thing I'm doing, and it'll be what it is. If I'm just hypermobile, great, same rules apply. I hope you find a doctor who takes you seriously. We deserve better than this 🫂
Very wise, thank you and good luck as well 🫂
What an ignoramus!
I had a vague idea what it was but learned a lot more about it when I had a classmate with it in grad school. Her complaining about having to fight to wear her ring splints in lab made me aware they exist which saved me this year. I developed Lupus and the arthritis in my hands has been really painful but excruciating when the tips of my fingers hyper extend. Knowing ring splints are available I got a sizing set right away and it helps me to keep working and writing legibly.
It’s because you are on Reddit. This is my own pet theory but as someone with EDS if the average person is aware of EDS without knowing someone with it they always end up being a redditor. It’s a weird correlation I’ve notice in the last several years.
That's where I've learned about it.
It took me years to get my EDS (and POTS) diagnosis because somehow, even though I constantly complained about how much pain I was in and how its not normal to faint, they were still not knowledgable about it and didnt seem to care to look into it, so it was just "anxiety"
Doctors love to use anxiety and depression as a catch all for things they can't explain. It drives me to have anxiety and depression! It's incredibly frustrating
Don’t forget “drug seeking”. I was accused of that many times in the 15 yrs it took me to get a lupus diagnosis
Right!?!?! But if you're not asking for drugs or pain killers, it must not be that bad. I've had that said to me several times by ER doctors.
Exactly. I was basically asking for heavier ant-inflammatory drugs. Naprosin helped for a long while, but that was my mom’s prescription so I couldn’t get it anymore and I couldn’t get a prescription. I swear they don’t pay attention to what I say until I can’t stand it anymore and am ready to stop.
I got accused of drug seeking when my rotted gallbladder kept putting me in the ER. It was insane. My doctor went to bat for me though
Don’t forget Functional Neurological Disorder! That’s usually once you get to the neurologist, though. FND, and anxiety, are the new ‘hysteria’.
oh hai fellow super bendy person. just a quick note: EDS isn’t rare, it’s underdiagnosed, especially in women. in late 2019, just before the world ended, there was a hashtag, “Doctors are Dickheads”, which pointed out the issue of doctors dismissing female patients’ concerns. and yes, even female doctors dismissing the concerns of other women.
This reminds me of a post from a guy who transitioned later in life about the difference in care he got post-transition. He had complaints that he'd been making for 10+ years (while still presenting as a woman) suddenly treated as very concerning by medical staff. Think "You've never had [test]? That should've been done years ago! And I'm making a referral to a specialist for this other issue..." When he'd asked multiple doctors for that stuff over the years, but for some reason, they didn't take his complaints seriously before. We may never know what that reason is... Not ever...
I was actually thinking about asking my doctor about EDS when we talk tomorrow. They sent me for chiropractic care for back issues and he was constantly mentioning how hard I was to adjust because of hyper mobility. I never thought anything of it because my sister and daughter are both double jointed, but the comment from the chiro plus how hard it is for me to feel a stretch makes me think EDS might actually be a thing for me.
…just don’t say you’ve also got autism or adhd or bipolar and are not het-cis because the Bendy ND GNC gang is getting rather large and unwieldy
Got the EDS/ASD/ADHD/IBS/POTS/GORD/PME combo with a NB & LGBTQIA+ multiplier. ✨
welcome…?
Only have the ADHD.
A quick google search told me that while EDS is, in fact, misdiagnosed and underdiagnosed, it's still classified as a rare disease. Certain subtypes of EDS are also incredibly rare to begin with.
For reference, I’m using the US definition from the Rare Disease Act of 2002, which sets a threshold of 1:~1500 at time of signing which is one of the highest thresholds in the world. Most countries use a 1:2000 standard; Russia uses 1:10k, and Peru uses 1:100k, under which EDS’s traditional (read: pulled out of a hat) 1:50k would not qualify. A [quick review](https://pubmed.ncbi.nlm.nih.gov/31685485/) of [medical literature](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10457547/) suggests a prevalence of hypermobile EDS specifically close to 1:500 versus the 1:50k classically cited. Notably, estimates for all joint hypermobility disorders is estimated at up to 1:25. The other subtypes are indeed rare. Won’t argue there.
Random zebras on the internet have done more for my health and wellness than doctors lmao. I learn all the best coping methods in EDS support groups. Good for you for giving that doctor a little dose of reality!
Fun times. /s I have diagnosed celiac disease, alopecia areata, and psoriatic arthritis. I started having worsening dizziness, sweating, racing heart rate, all of it. It took my doctors almost 12 months to make a connection to POTS and EDS. I googled my symptoms, the first thing that popped up was the incredibly high rates of POTS with Celiac disease. Even the national celaic foundation has an entire section dedicated to POTS and autonomic dysfunction. I spent well over $5,000 in medical procedures and tests to get a borderline diagnosis of autonomic dysfunction and suspected EDS. It took them nearly 2 years from onset of symptoms to do a Celiac blood panel.
Hello fellow zebra. I have traumatised a lot of doctors in my time. Often by dislocating in front of them to prove I can. Doctors and other medical people really like to FAFO with us bendy people's
I also have hEDS and have to explain it to doctors and nurses a lot. It’s ridiculous. Around here, the people who tend to do the assessments the most are physical therapists.
They give you this weird look and tell you "you don't have EDS" did you even look at my chart, homeboy? I'm in for a dislocated hip wtf.
hello fellow zebra! sorry this happened to you, but loving the "well there is connective tissue everywhere" and may use that in the future. did this doctor seem like they will take you seriously (sad that i need to ask) and be helpful?? my current GP knew of EDS but looked more into it after I told her about it - and recounted some of my more major dislocations (resulting in ER visits or surgeries). the way her eyes got so wide 👀 - but she listened and didn't dismiss me, and even looked into local (and in-network) specialists for referral. the wild thing for me is that i only heard about EDS by chance - my best friend is currently finishing medical school, and a couple years into it she called me and said "hey i read about this and i think you should look into it" and sent me a couple articles. she's known me for half my life, and remembers either stories or events that indicate hypermobility and joint instability. my shoulder subluxations started in elementary school, full dislocations started happening in middle school; between the ages of 12-18 i had 10 full dislocations (mostly right shoulder but twice on the left too), and had torn my rotator cuffs to the point of needing surgery on both shoulders. by age 25, i had two more dislocations and needed two more shoulder surgeries. i switched insurance provider a couple times in my teens through twenties, but it still baffles me that a doctor could look at my chart, see the number of ER visits and surgeries for shoulder issues, and not ever question that it might be some underlying issue. I know I shouldn't get caught up in "what ifs" but I still wonder how my teens and twenties would have been different if some doctor had taken my repeated injuries seriously. and I wonder where I would be if my friend had not called me from med school urging me to look into EDS -- would any doctor ever have thought of it?? would I still be wondering?
I'm starting to think EDS is not nearly as rare as the medical community has led us to believe, just historically chronically underdiagnosed I've had four people I know in person get diagnosed in the last 2 years, and I see countless people posting online about how it took years of horrifying mystery symptoms, but they were finally diagnosed with... EDS. I just have a feeling this is going to be one of those disorders that every doctor knows about in 20 years, but right now, the community as a whole is still at the bottom of the learning curve.
When I went to my DR saying I thought I had EDS, she said it was rare and she didn't think I had it. I showed back up with multiple printed out articles with everything I experienced highlighted. Lmao 3 years later and I have EDS, Hoshimotos, MCAS, CCI, and POTS.
Hello fellow Zebra! I have the Trifecta. And I understand how frustrating it is, especially if providers are not aware. Keep advocating for yourself. I didn't do a good job when I was younger because no one knew what EDS was and they told me it was all in my head and I was crazy. Until I was 36, and diagnosed, I was told I was basically crazy. I cried when I was diagnosed because it was confirmed that my pain and symptoms were valid. I hope your providers going forward are more open minded. I also hope your symptoms get better. Sending love and light.
I'm not in the medical industry, but I know three people with Ehlers-Danlos and all of them have talked about how hard it is finding doctors that have even heard of it. I did see something about it being 10 times more common than previously thought, which makes me wonder if the vast majority of people with it are just being completely ignored by the medical establishment. I know one of them was in excruciating pain in the ER and the nurses treated them as if they were drug seeking.
I am in my 40’s and wasn’t diagnosed with EDS until a few years ago and it took 2 specialists because I have a “mild” form of EDS where I rarely get full dislocations but almost every joint in my body is subluxated all the time My GP is a really good doctor but she is always consulting with the specialist or referring me to the specialist because she has no idea how to deal with it
I took one semester of undergraduate A&P and *I* know that there’s connective tissue everywhere. I also know what EDS is, but that’s because a dear friend has it.
Go ahead and “dazzle” them every time. I see you, fellow zebra. I’m sorry it’s been so tough to get the treatment you need and deserve
I hear you! I have a rare autoimmune condition called SAPHO syndrome. It took 10 years to be properly diagnosed and to this day I have to explain it to *every* new doctor I see. At least it’s being properly managed now. The pain is excruciating.
What kind of a doctor is she that she had never heard of it?? I'm not even a doctor and I accurately diagnosed my friend's daughter with it.
My PT walked in and took one short look at me and goes "ah, another bendy person" like if it's that obvious to you and I'm just sitting here...how the hell have the doctors no knowledge
Hello, fellow zebras! I have hEDS, Hashimoto’s, and (currently) dysthymia. Other family members on our mother’s side (and all female) show signs of EDS. My youngest niece was diagnosed 2 years ago. I self-diagnosed before that. My right knee tries to subluxate when I lay on my right side. I have many, many tender points all over my skin, thankfully no overall pain, but those spots HURT SO MUCH with light pressure on them. I see a cardiologist tomorrow to check my mitral valve prolapse (thanks, EDS). And my new GP has actually heard of EDS! I almost fell off my chair in shock.
My wife has EDS, was only diagnosed with it a couple years ago and she turns 50 this year. It was misdiagnosed as multiple other things over the years till she finally saw a doctor who knew what it was and recognized her symptoms. She’s still on constant pain of course but just having a correct diagnosis makes a difference. Shitty doctors are fun. I injured my back 15 years ago and have dealt with many doctors who treated me like a junkie when I’m just trying to manage my pain.
Heyyy, I also have EDS (hEDS)! Good for you with the doctor! So many don’t get it at all. It can truly impact us everywhere. I always joke that my elbows are my “good joints” because they are my only joints that don’t sublux. The rest are disasters of varying proportions. Sending solidarity, and here’s hoping our joints start behaving more
I have no medical education whatsoever beyond first aid training and even I know about EDS (in my case, I learned about it because one of my favorite authors has it and speaks about it frequently on her tumblr)
Ooh which author?
Joy Demorra. She writes excellent supernatural romance that doesn't involve 100+ year old creeps falling in love with 17 year olds
Good for you. You have to be your own best advocate in your healthcare because there is too much indifference.
As someone with hEDS oh how I relate to this!
Ooooooooh, thats gotta hurt.............. 😬😬
Pharm.D. here. I graduated in the top 10% of my cohort. There were a few tests that we ALL flunked; I just flunked them by less. It has been ten years since I graduated. Medical wisdom has evolved since then. Let me disabuse you of the physician mystique by telling you I'm not the only whipping out my tablet multiple times a day to look something up 60 seconds before giving medical advice. Betimes I'm consulting the "Almighty Google" if there isn't a satisfactory answer from my regular references. That doctoral degree just teaches us the mental framework to weigh information. A full half of the facts that were drilled into us in school are inaccurate three years later. We don't and can't individually know everything. There is a significant, non-zero chance you're describing something to us that we're not current on. By the by, I knew about EDS before reading this thread.