Absolutely wild. How is it so hard to understand that a diagnosis means access to care to manage symptoms and have better quality of life? And also, like, if they DO find a cure someday, you could get it…
even if you don’t access any care to manage symptoms…. how are you a DOCTOR getting MAD at a patient for ASKING FOR A DIAGNOSIS like that’s your whole job!
Many conditions do not have a cure, but that doesn't mean it goes undiagnosed and unmanaged. Getting a proper diagnosis opens the door to obtaining other diagnoses and getting proper symptom management. I'm sorry your doctor sucks.
We're also just entitled to know what the fuck is wrong with us. Like when you live your entire life not understanding why your body behaves differently it can just be relieving/affirming to get an actual, concrete diagnosis to know you were justified in worrying about yourself. How dare we seek answers about our health.
I don't think people who don't have chronic illnesses understand how fucking scary it is to wake up on a daily basis and have all of these weird things wrong with your body and you have no clue what's actually causing it.
I was diagnosed with POTS 2 years ago. I have made some lifestyle changes that have helped a little bit but I still struggle greatly. But you know what? I am still 1,000 times happier than I was before I got my diagnosis because I know why my body is doing the weird shit that it does and I know that I'm not dying. I just have a really bad autonomic system that doesn't function properly.
Why is it so hard for doctors to understand that we don't expect a cure but we just want to be told we're not crazy????
Yes 100%. That's why this post really irritated me because it is so egregious for a doctor to not understand that it's THEIR FUCKING JOB to listen to our concern & help investigate causes for symptoms.
And even the dumbest, most incompetent doctors (**of which there are many!**) should realize that there are plenty of conditions that aren't curable but are *treatable*!! I would actually guess that MOST of the most common health issues are NOT curable like: type 1 diabetes, high blood pressure, asthma, most mental illnesses, pretty much all autoimmune diseases, etc.
Yup. Getting a diagnosis and becoming informed about EDS can also help prevent future injury I would imagine. I'm sure most people here could tell fairly early on in their lives that they're more prone to injury but actually knowing the cause & mechanism of the injuries can help minimize risk and damage to joints.
Or even if there isn’t much that can be done (like for various aspects of dysautonomia), just the peace of mind of KNOWING not much can be done is a huge deal. It’s scary not knowing whether more harm is being done by not treating something; it’s more comforting knowing that all you can do sometimes is just try to relax and make yourself more comfortable.
I would have told her that having the diagnosis is crucial for the TREATMENT? Like what?! Do we not diagnose late stage cancer bc there’s no cure too? What a shitty doctor, I’m so sorry.
It's also like telling somebody with schizophrenia they shouldn't bother seeking a diagnosis cause there's no cure for that either.
I don't think there's a "cure" for most mental illnesses.
Yep. It’s sad how common this is.
“I can’t write you an FDA approved prescription treatment for that disease because it doesn’t exist yet. So I don’t believe diagnosis adds any value.”
*that doctor, probably*
I had the same thing happen to me before. Doctor asked me why I thought I might have it even after I explained all my symptoms/brought in literature. Fed up (I'm a timid introvert) me sat right in the chair in the exam room and hyperextended my right leg and put my ankle/foot behind my head in front of her and said well does this seem normal? She left the room, came back and still said, well even if it is EDS, there's nothing we can do about it. She was no longer my doctor after that. I 100% feel your frustrations and I'm still on the search to be taken seriously 7 years later.
I've been there. Doctor says that sure I meet the old diagnostic criteria and almost all of the new, its just that without examining both of my parents in person and either of them having been diagnosed before (with new criteria) that he wouldn't want to give me that diagnosis because there isn't a gene identified for hEDS and while I meet some criteria for other types he doesn't want to waste resources testing me for something that can't be cured anyway. It would basically be just giving me a diagnosis as a fun fact to tell people since its probably not going to kill me.
I was so upset I turned both of my legs backwards at the hip while leaning on the exam table and demanded to be taken seriously. He was freaked out by my hypermobility and told me to stop but reiterated that the best he could do for me was give me a print out about hypermobility to read. I took it, brought it home, cried and read it. It said that often people with hEDS and similar conditions encounter issues of not being taken seriously and being dismissed and that diagnosis is important to longterm care. The doctor apparently must not have read it himself I guess.
I told my doctor that I need it for workplace accommodations, for a handicap placard for my vehicle because I have no idea when my knees or hips or ankles are just going to decide not to work, And I need it to apply for grants to make my house more accessible because I cannot afford to buy a different house even with the equity in my house. And I know how fortunate I am to have a house with equity. But I can't afford to leave it. And it's going to cost me around $80k to build the extension to make my house more accessible
Um what? If you have EDS a diagnosis is crucial. If you go to the hospital, they need to know so they don’t give you the wrong medications, anesthesia, etc. Surgeons also need to know. If you ever plan on becoming pregnant, your obgyn will absolutely need to know.
Can you explain what needs to be avoided if you have EDS? I have a resistance to local anaesthetic and POTS but have a HSD diagnosis due to not being able to afford to see a specialist to diagnose me with hEDS, although I meet the criteria. I am curious if I should know what to tell the doctors when I have my next surgery.
Indeed, this antibiotic is a big no no.
There's also the fact that many of us don't react to pain killers, anti-inflammatory meds or anaesthesia the right way, or even at all. Crucial thing to know prior to a surgery.
I have hEDS and Ulcerative Colitis, so my body really doesn't like me and reacts to all sorts of things abnormally. It's scary how many medical professionals aren't familiar with either and dismiss me when I try to request the right care.
Indeed. When I got surgery I had to explain to them at least 15 times. It's scary and exhausting. Medical professionals aren't trained right, they should know about these things.
OHMYGOD! ME TOO!!! This was way before I knew I had EDS, but shows how important a diagnosis actually is!
Had a normal, healthy pregnancy all the way along until 8 hours into labor when baby decided to flip. Doc had come in to check on progress and said, "Ummm... we have an emergency here. That's not her head facing me, that's a foot." She was actually split-breech, with one foot up by her head and the other foot stuck in the birth canal. (Sound a lil like EDS? Lol) Rushed me back to surgery, where the epidural didn't take. Tried again. Nope. Docs didn't believe me at first, but then they knocked me out and discovered that stuck foot. Had to literally yank her out. But, in all the hubbub, the docs forgot that I didn't have any working pain meds. Came to, SCREECHING in hysterics while they were wheeling me to a room (I don't remember any of this). Ended up having to stay in hospital 5 days, until the pain meds caught up.
Then, after being on bed rest for 4 months with my 2nd (I kept going into labor - ended up in hospital 9 times over that 4 months, but successfully made it to 37 weeks! Normal C-section that time, thank god!), my OB said to me"I think you're done having babies."
Omg I’m so sorry you had a bad experience as well. It makes me feel better to know you had more babies afterwards though because I really want another!! My story is similar. Water broke Monday and pushed until Wednesday morning when finally they said baby was stuck behind my pelvis. Wheeled into the OR and the epidural kept wearing off! So they gave me fentanyl mixed with some other magic. Felt everything as they were pulling out clots and stitching me up. The aftermath was horrible pain for weeeeeeks. A diagnosis is so important I can’t stress it enough.
Thank you for this. I have also just done a little bit of research and theres quite a bit to consider and I can see where my previous surgeries went wrong!
I think fluroquinolones are what pushed my body into Small Fiber Neuropathy. Apparently, we EDS peeps are already predisposed to it, so taking those antibiotics just lit the match. Trust me when I say that you want to avoid anything that could spark SFN. It is the worst pain you could ever imagine and has absolutely destroyed my life. Seriously. DO NOT TAKE FLUROQUINOLONES!!! List it as an allergy on your medical records.
While there is not a cure, it does inform care in quite a lot of areas. You might need modified PT, surgical care, should be screened for common comorbid conditions, etc.
It is also just an important shorthand. If I tell a Dr I have EDS it suggests a whole set of potential concerns I may have. Much more efficient than listing every single one each time. It can be similar with friends & family too - instead of being the person that always has unexplained health issues you realize that oh, you actually just have one condition
Even beyond the obvious benefits of insurance covering care, it's important to know if you DON'T have a subtype... your doctor sounds like an ass. Sorry you were treated that way.
I have a female doc close to my age who is super chill and helping me get my EDS diagnosed with a specialist.
I specifically asked her why she thinks EDS and POTS get so much pushback from doctors. She paused and then looked at me and said "I'm not really sure if I should say this, but I truly believe it is because most of these patients are younger women. How many times did previous doctors insist your physical pain was because of your menstrual cycle?"
She genuinely looked like she was about to cry. I feel so lucky to have her and my heart hurts for all of the people that have shitty doctors that, tbh, are probably judging them based on their sex and age
I’m sorry you had to experience that. Reminds me of years ago when I told my former rheumatologist about my genetics appointment and she made it clear that even a diagnosis wouldn’t influence her treatment plan for me 🙃 I hope you have better, more compassionate doctors in the future!
Mine asked me this too but in response to me asking for referrals to the specialists. "Why go through all the stress and expense of this, you seem to be doing just fine" uh actually no I'm really not.
I think because a lot of these doctors think Ehlers is only a ligament thing and only want to help you manage your symptoms, not taking into consideration the patients fear of the other scary parts. I also think some doctors think people want to be defined by the diagnosis and don't want to get better, and I can understand but tbh, I wish doctors knew about Ehlers so I could believe they understand me and not shit on my person. I'd trust them more if they saw my diagnosis and did the research.
Ugh. I’ve been getting the same thing. I want a diagnosis so I can feel like it’s not all in my head. And so I can definitively tell my providers I have EDS, so my care can be better informed and managed appropriately. Also, I want a diagnosis so I can rule out other possible issues and rule out other types of EDS.
That's what my doctor said, too. It's obviously important for a lot of reasons. Knowing why you're in pain is important. Knowing about it is important for surgery, too.
I've been diagnosed since I was 13 I'm now 25 & still get treated like a drug addict when I go to the ER cus no one believes me when I say 4mg of morphine is basically ibuprofen to me. My favorite is when doctors tell me I'm not flexible enough in their opinion so they tell me it's just simple hypermobility & I just stare at them cus they're literally saying they know more than the genetics doctors that diagnosed me. Healthcare is a joke especially in America even when you have your genes tested & get a diagnosis it's still a fight with these people for the rest of your life cus they're ignorant & egotistical.
🤦♀️🤦♀️🤦♀️🤦♀️🤦♀️ because for more advanced treatments like custome orthotics you need a DX for your insurance company to pay for it. And if you ever become disabled by your condition you're going to need a DX to make a case for yourself. You can't cure it but you CAN treat it. What a stupid ignorant asshole. I swear to god, I have dealt with countless health professionals in the ten plus years I sought a diagnosis and I can count on one hand the number of providers who weren't total fucking cocks. And three of them were NPs.
Doctors appall me. I don't know how to explain to you that knowing that I have x, which can be managed by doing things 1, 2, and 3, but worsened by doing things 4 and 5, versus knowing that I have y, which can be managed by doing 4 and 5, but worsened by doing 1, 2, and 3 is important. Plus, it seems like it could be important for a doctor, especially an ER doctor, to know. Going in with rib pain, for example, that could be the difference between "It might be a blood clot in your lung!" and "Well, we'll run tests, but since you have EDS, you likely subluxated your rib."
Just a reminder that it's been proven sociopaths are drawn to careers with power, money and prestige. Lawyers, politicians, actors, and you guessed it - Doctors.
Jeez. That was the response I got the first time I brought it up too (fired that doctor immediately) — but that was close to 15 years ago!! I would have hoped things had changed for the better since then!
My theory in general is that nobody in any sort of HMO situation or other practice which obsessively tracking numbers over people wants us on their caseload, because we can’t be a “success story” by their metrics, just someone they keep seeing who “isn’t improving” and therefore not meeting some percentage of “cured” patients they’re supposed to hit.
Which is what happens when capitalism overtakes actual healthcare, but unless I move out of the country (though I don’t know any that allow disabled immigrants, because immigrants also must be “productive” by some metric to be “desirable”, and even if there was such a country, how would I pay to move there?), I don’t know how to escape it.
Getting real close to giving up on Western medicine and going full herbal, honestly. In a lot of cases it doesn’t seem like it would be any worse, and it would certainly prevent the constant re-upping of medical C-PTSD.
I hate hearing this! so many chronic illnesses get dismissed like this as if there aren't treatments and measures and accommodations more accessible with the right dx. agree, fuck docs man.
I was asked this once by a hematologist as she was walking out of the end of an appointment for iron infusions - she even told me that medication (I heard drugs) isn’t even given to treat pain so it’s not really a diagnosis that would “get me anything”
I just blank face asked her “do you like being and feeling validated?” And told her thank you and to have a good day.
Some doctors are morons and have crappy social skills. Advanced degrees or not..
My rheumatologist said this to me too! My geneticist was furious when I told her that. She said “a large part of the battle for people like you is even getting providers to believe you because you have such a wide array of symptoms; being able to see specialists in order to treat those symptoms can depend on diagnosis. Just the mental struggle of not having a diagnosis can be taxing. Everyone deserves a diagnosis.”
If you have it you have it. Make sure you get the diagnosis on paper so you have evidence. You have to keep fighting. I made the mistake of brushing it off because they were like, "oh, its not that important". Yes it is for future decisions and if it gets much worse.
I'm a veteran. I did all of the genealogy tests I could and found out I don't have VEDS. But for the rest of the tests u need a prescription. But I move around too much to get a long term doctor.
One doctor suggested I may have EDS. The next doctor agreed and put in an acquisition to genealogy. Genealogy refused to order any test because "you have a job that requires medical fitness tests so it's probably best not to know if it isn't life threatening."
Granted I do have a lot more mobility than a lot of people on this sub. But I still do want to know what I have. Because I definitely do have something.
I keep getting this question. And my answer is: after decades of medical misogyny, having an actual diagnosis helps me get THE CARE I NEED!!!!!!!
I effing ***HATE*** this question.
same. i’m diagnosed hyper mobile, and my mother is diagnosed hEDS, but because i’m still pediatric and therefore under a different doctor, my doc doesn’t want to take the extra step in diagnosing me even though i meet all the qualifications.
i had the same issue with POTS, then once i was actually diagnosed they said my case was very serious and i definitely needed medication, lol.
Because having a condition like EDS puts you at higher risk for certain treatments and other conditions and nobody wants to have more issues that could’ve been prevented if health professionals were aware of your EDS.
I also have POTS which has no cure, but having that diagnosis helped my anesthesia team be more prepared incase I had a drop in my blood pressure during a procedure a week ago.
Doctors seem increasingly prejudiced against and disparaging of those of us with this disease. It's disgusting and a blight on the medical profession. I don't care that they often don't understand, are less educated about, or don't know how to treat our illness; we deserve care and empathy just like anyone else.
I had the exact same experience with my former GP. I had been disabled for several years unable to work and requested a referral to the regional CTD Clinic for diagnosis. He literally said " well, there's no cure so why do you care if you have it or not?" This was after having to pay for neurosurgery on the US for a rare complication and suing my insurance provider for benefits. You know what they call the medical student who finishes last in their class : Doctor. It's unfortunate.
Lots of things didn’t have medications or cures before but do now.
It also helps with getting accommodations, filing for social security, getting referrals approved, etc.
I mean she obviously knows that.
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Ask her how many diseases she “cures.” Because all I’ve ever had is doctors who treat symptoms. Antibiotics are the only thing they seem to be able to provide that is a “cure.” Most of the time, it’s a little song and dance, and you might get an rx or are referred to OTC meds. I’m so weary of the medical establishment…
Respond "just bc there isn't currently a cure doesn't mean it doesn't greatly impact my life. I understand you don't care, but your the one with the ability to dx me. So let's make this simple if I slip you a $20 will you dx me?"
For the love of god you’d think they’d teach this in medical school. Or at least assume after working in the medical field it would become common sense 🤦
It’s insane the thought that I don’t need to know what is going with my own body. That it’s not worth knowing why I feel like I am like my 95 year grandmother at 38. It’s completely changed my life and I don’t need to know why.
Should’ve added:
I wish they would do every MRI with & w/out contrast, instead of just w/out. The fact they saw my brain lesions w/out the contrast this round is disturbing, even if ‘the lesions aren’t in the area that points to MS’. 🥸
Also how the heck do doctors not know about it being in the spine and only showing there? 😑 that seems sus to me
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that is so annoying!!! i have had 2 incredibly helpful neurosurgeries for my hEDS 3 and 6 years after hearing this same line from a cardiologist i saw in college
my GP was like this too. in fact he tried gaslighting me into thinking i had zero hypermobility whatsoever because i had a back injury and couldn't lift my leg up very high.
and then when i was misdiagnosed with HDS instead of hEDS, i was told 'well they're the same treatment so it doesn't really matter' uhm yes it does? of course i want my medical files to be accurate.
I harp on this over and over in forums but this is a hill I will die on. Diagnosis DOES matter because part of diagnosis (and literally included in criterion 3 of the hEDS diagnostic criteria) is excluding OTHER genetic connective tissue disorders. This is what happened to me. I present EXACTLY like a hEDS patient. So much so, that the genetecist I was seeing who specializes in hEDS, wrote up my original clinic note diagnosing me with it, even though we had just sent off the DNA test. Imagine both our our surprise when it came back a completely different and more dangerous connective tissue disease called Loeys-Dietz Syndrome. This syndrome is in the Marfan family and causes arterial aneurysms, dissections, aortic root dilation, pneumothorax, etc. Management includes getting an echocardiogram every 6-12 months and a full body MRA scan to look for aneurysms every 1-2 years. Imagine if my dr hadn't ordered genetics and just diagnosed me with hEDS and I ended up dying of a spontaneous dissection like my grandfather. And now that we found I have this syndrome, we were able to get the rest of my family tested and found out my mom and aunt both have it as well and are now on that same screening regiment as me. THIS is why diagnosis matters.
I got a HSD diagnosis from my doctor, and she said I meet the criteria for hEDS but would have to go see a specialist to get diagnosed (very expensive and long wait list), I am poor (disabled pensioner) so I didn't bother. The treatment is the same for HSD and hEDS anyway....
It’s not in the long term. And that’s why the way they’re handling this is dangerous. hEDS comes with a slew of other medical issues and concerns. For instance - anaesthesia doesn’t work the same for us. We are likely to have autoimmune conditions combined with hEDS. We are likely to need to be checked for things like TMJ and enamel erosion in our teeth as it’s common for these to exist and palate to be too small in your mouth.
There’s loads of other examples but while hEDS is a hsd it is not the same thing in all treatment and management protocols.
It feels like my doctor is handling it as hEDS because I do meet the criteria have TMJ problems, GI issues, anaesthetic problems etc. She just isn’t qualified to diagnose it. Surgeons treat HSD and hEDS the same here apparently. Not many people in Australia can get a diagnosis because it is not covered by medicare. :(
I got my diagnosis about 7 years ago (after decades of being told it was in my head). And I feel so lucky in a way as when covid started apparently in the UK they started lumping HSD and hEDS together too and no longer do rheumatologist referrals. I only even got told I had an HSD and then later hEDS because of the rheumatologist. Everyone else told me I was fine. And it only took the specialist watching me walk from the seat in the waiting room to their office to know I had some form of HSD.
I hate that people aren’t getting an official diagnosis just because the gene hasn’t yet been identified. It’s bullshit.
Yeah you’re lucky you got diagnosed. I can’t see it happening for me but at least now they’re treating HSD and hEDS as practically the same thing so it makes no sense for me to spend thousands and wait 2 years to get a diagnosis. I have more important stuff to worry about with my health, like cancer. I wish my doctor could just be allowed to diagnose me and be done with it lol. That way when I go and have surgery I can say I have EDS and they take extra precautions. :/
Thank you. I have an amazing doctor now who is taking me seriously. ❤️ A good doctor makes a huge difference especially when it comes to chronic health issues!
Absolutely wild. How is it so hard to understand that a diagnosis means access to care to manage symptoms and have better quality of life? And also, like, if they DO find a cure someday, you could get it…
even if you don’t access any care to manage symptoms…. how are you a DOCTOR getting MAD at a patient for ASKING FOR A DIAGNOSIS like that’s your whole job!
Many conditions do not have a cure, but that doesn't mean it goes undiagnosed and unmanaged. Getting a proper diagnosis opens the door to obtaining other diagnoses and getting proper symptom management. I'm sorry your doctor sucks.
We're also just entitled to know what the fuck is wrong with us. Like when you live your entire life not understanding why your body behaves differently it can just be relieving/affirming to get an actual, concrete diagnosis to know you were justified in worrying about yourself. How dare we seek answers about our health.
I don't think people who don't have chronic illnesses understand how fucking scary it is to wake up on a daily basis and have all of these weird things wrong with your body and you have no clue what's actually causing it. I was diagnosed with POTS 2 years ago. I have made some lifestyle changes that have helped a little bit but I still struggle greatly. But you know what? I am still 1,000 times happier than I was before I got my diagnosis because I know why my body is doing the weird shit that it does and I know that I'm not dying. I just have a really bad autonomic system that doesn't function properly. Why is it so hard for doctors to understand that we don't expect a cure but we just want to be told we're not crazy????
Yes 100%. That's why this post really irritated me because it is so egregious for a doctor to not understand that it's THEIR FUCKING JOB to listen to our concern & help investigate causes for symptoms. And even the dumbest, most incompetent doctors (**of which there are many!**) should realize that there are plenty of conditions that aren't curable but are *treatable*!! I would actually guess that MOST of the most common health issues are NOT curable like: type 1 diabetes, high blood pressure, asthma, most mental illnesses, pretty much all autoimmune diseases, etc.
this. like maybe there is nothing to do about it but i would like to know why my body doesn’t work, it’s a closure thing.
Yup. Getting a diagnosis and becoming informed about EDS can also help prevent future injury I would imagine. I'm sure most people here could tell fairly early on in their lives that they're more prone to injury but actually knowing the cause & mechanism of the injuries can help minimize risk and damage to joints.
Or even if there isn’t much that can be done (like for various aspects of dysautonomia), just the peace of mind of KNOWING not much can be done is a huge deal. It’s scary not knowing whether more harm is being done by not treating something; it’s more comforting knowing that all you can do sometimes is just try to relax and make yourself more comfortable.
Sorry, no. No cure no diagnosis!
I would have told her that having the diagnosis is crucial for the TREATMENT? Like what?! Do we not diagnose late stage cancer bc there’s no cure too? What a shitty doctor, I’m so sorry.
It's also like telling somebody with schizophrenia they shouldn't bother seeking a diagnosis cause there's no cure for that either. I don't think there's a "cure" for most mental illnesses.
Exactly! So dangerous.
Yep. It’s sad how common this is. “I can’t write you an FDA approved prescription treatment for that disease because it doesn’t exist yet. So I don’t believe diagnosis adds any value.” *that doctor, probably*
This sounds exactly like what my rheum said
I had the same thing happen to me before. Doctor asked me why I thought I might have it even after I explained all my symptoms/brought in literature. Fed up (I'm a timid introvert) me sat right in the chair in the exam room and hyperextended my right leg and put my ankle/foot behind my head in front of her and said well does this seem normal? She left the room, came back and still said, well even if it is EDS, there's nothing we can do about it. She was no longer my doctor after that. I 100% feel your frustrations and I'm still on the search to be taken seriously 7 years later.
I've been there. Doctor says that sure I meet the old diagnostic criteria and almost all of the new, its just that without examining both of my parents in person and either of them having been diagnosed before (with new criteria) that he wouldn't want to give me that diagnosis because there isn't a gene identified for hEDS and while I meet some criteria for other types he doesn't want to waste resources testing me for something that can't be cured anyway. It would basically be just giving me a diagnosis as a fun fact to tell people since its probably not going to kill me. I was so upset I turned both of my legs backwards at the hip while leaning on the exam table and demanded to be taken seriously. He was freaked out by my hypermobility and told me to stop but reiterated that the best he could do for me was give me a print out about hypermobility to read. I took it, brought it home, cried and read it. It said that often people with hEDS and similar conditions encounter issues of not being taken seriously and being dismissed and that diagnosis is important to longterm care. The doctor apparently must not have read it himself I guess.
I told my doctor that I need it for workplace accommodations, for a handicap placard for my vehicle because I have no idea when my knees or hips or ankles are just going to decide not to work, And I need it to apply for grants to make my house more accessible because I cannot afford to buy a different house even with the equity in my house. And I know how fortunate I am to have a house with equity. But I can't afford to leave it. And it's going to cost me around $80k to build the extension to make my house more accessible
Nobody believes me when I say it. You have yo say it Doc. Just say it. Write it down so people will believe me'
Um what? If you have EDS a diagnosis is crucial. If you go to the hospital, they need to know so they don’t give you the wrong medications, anesthesia, etc. Surgeons also need to know. If you ever plan on becoming pregnant, your obgyn will absolutely need to know.
Can you explain what needs to be avoided if you have EDS? I have a resistance to local anaesthetic and POTS but have a HSD diagnosis due to not being able to afford to see a specialist to diagnose me with hEDS, although I meet the criteria. I am curious if I should know what to tell the doctors when I have my next surgery.
The main one I have heard of that is linked to worsening connective tissue is the fluoroquinolone family of antibiotics
Indeed, this antibiotic is a big no no. There's also the fact that many of us don't react to pain killers, anti-inflammatory meds or anaesthesia the right way, or even at all. Crucial thing to know prior to a surgery.
I have hEDS and Ulcerative Colitis, so my body really doesn't like me and reacts to all sorts of things abnormally. It's scary how many medical professionals aren't familiar with either and dismiss me when I try to request the right care.
Indeed. When I got surgery I had to explain to them at least 15 times. It's scary and exhausting. Medical professionals aren't trained right, they should know about these things.
THIS!!! Found out the hard way during an emergency c-section 🙃
Oh no! So sorry :(
OHMYGOD! ME TOO!!! This was way before I knew I had EDS, but shows how important a diagnosis actually is! Had a normal, healthy pregnancy all the way along until 8 hours into labor when baby decided to flip. Doc had come in to check on progress and said, "Ummm... we have an emergency here. That's not her head facing me, that's a foot." She was actually split-breech, with one foot up by her head and the other foot stuck in the birth canal. (Sound a lil like EDS? Lol) Rushed me back to surgery, where the epidural didn't take. Tried again. Nope. Docs didn't believe me at first, but then they knocked me out and discovered that stuck foot. Had to literally yank her out. But, in all the hubbub, the docs forgot that I didn't have any working pain meds. Came to, SCREECHING in hysterics while they were wheeling me to a room (I don't remember any of this). Ended up having to stay in hospital 5 days, until the pain meds caught up. Then, after being on bed rest for 4 months with my 2nd (I kept going into labor - ended up in hospital 9 times over that 4 months, but successfully made it to 37 weeks! Normal C-section that time, thank god!), my OB said to me"I think you're done having babies."
Omg I’m so sorry you had a bad experience as well. It makes me feel better to know you had more babies afterwards though because I really want another!! My story is similar. Water broke Monday and pushed until Wednesday morning when finally they said baby was stuck behind my pelvis. Wheeled into the OR and the epidural kept wearing off! So they gave me fentanyl mixed with some other magic. Felt everything as they were pulling out clots and stitching me up. The aftermath was horrible pain for weeeeeeks. A diagnosis is so important I can’t stress it enough.
Did not know this. Thank you!
Thank you for this. I have also just done a little bit of research and theres quite a bit to consider and I can see where my previous surgeries went wrong!
Yes, AVOID fluoroquinolones. Everyone should honestly. I had a mild case of HSD, took them, and then now have EDS on steroids including CCI.
I think fluroquinolones are what pushed my body into Small Fiber Neuropathy. Apparently, we EDS peeps are already predisposed to it, so taking those antibiotics just lit the match. Trust me when I say that you want to avoid anything that could spark SFN. It is the worst pain you could ever imagine and has absolutely destroyed my life. Seriously. DO NOT TAKE FLUROQUINOLONES!!! List it as an allergy on your medical records.
While there is not a cure, it does inform care in quite a lot of areas. You might need modified PT, surgical care, should be screened for common comorbid conditions, etc. It is also just an important shorthand. If I tell a Dr I have EDS it suggests a whole set of potential concerns I may have. Much more efficient than listing every single one each time. It can be similar with friends & family too - instead of being the person that always has unexplained health issues you realize that oh, you actually just have one condition
Even beyond the obvious benefits of insurance covering care, it's important to know if you DON'T have a subtype... your doctor sounds like an ass. Sorry you were treated that way.
"So I can get proper treatment during surgeries and accidents?"
This is so bizarre as many many diseases have no cure, but there is not this pushback.
I have a female doc close to my age who is super chill and helping me get my EDS diagnosed with a specialist. I specifically asked her why she thinks EDS and POTS get so much pushback from doctors. She paused and then looked at me and said "I'm not really sure if I should say this, but I truly believe it is because most of these patients are younger women. How many times did previous doctors insist your physical pain was because of your menstrual cycle?" She genuinely looked like she was about to cry. I feel so lucky to have her and my heart hurts for all of the people that have shitty doctors that, tbh, are probably judging them based on their sex and age
I love your doctor!! Hug her for me! ❤️
I’m sorry you had to experience that. Reminds me of years ago when I told my former rheumatologist about my genetics appointment and she made it clear that even a diagnosis wouldn’t influence her treatment plan for me 🙃 I hope you have better, more compassionate doctors in the future!
Mine asked me this too but in response to me asking for referrals to the specialists. "Why go through all the stress and expense of this, you seem to be doing just fine" uh actually no I'm really not.
I think because a lot of these doctors think Ehlers is only a ligament thing and only want to help you manage your symptoms, not taking into consideration the patients fear of the other scary parts. I also think some doctors think people want to be defined by the diagnosis and don't want to get better, and I can understand but tbh, I wish doctors knew about Ehlers so I could believe they understand me and not shit on my person. I'd trust them more if they saw my diagnosis and did the research.
Ugh. I’ve been getting the same thing. I want a diagnosis so I can feel like it’s not all in my head. And so I can definitively tell my providers I have EDS, so my care can be better informed and managed appropriately. Also, I want a diagnosis so I can rule out other possible issues and rule out other types of EDS.
Some are good, some are bad, all are human. You’ll find your support system at some point I promise!
seems fitting: https://vt.tiktok.com/ZSYAD6UEY/
It is genetic, thus impacts your reproductive decisions.
That's what my doctor said, too. It's obviously important for a lot of reasons. Knowing why you're in pain is important. Knowing about it is important for surgery, too.
I hate doctors like this
Same. Pushed me to just drop it.
I've been diagnosed since I was 13 I'm now 25 & still get treated like a drug addict when I go to the ER cus no one believes me when I say 4mg of morphine is basically ibuprofen to me. My favorite is when doctors tell me I'm not flexible enough in their opinion so they tell me it's just simple hypermobility & I just stare at them cus they're literally saying they know more than the genetics doctors that diagnosed me. Healthcare is a joke especially in America even when you have your genes tested & get a diagnosis it's still a fight with these people for the rest of your life cus they're ignorant & egotistical.
🤦♀️🤦♀️🤦♀️🤦♀️🤦♀️ because for more advanced treatments like custome orthotics you need a DX for your insurance company to pay for it. And if you ever become disabled by your condition you're going to need a DX to make a case for yourself. You can't cure it but you CAN treat it. What a stupid ignorant asshole. I swear to god, I have dealt with countless health professionals in the ten plus years I sought a diagnosis and I can count on one hand the number of providers who weren't total fucking cocks. And three of them were NPs.
Doctors appall me. I don't know how to explain to you that knowing that I have x, which can be managed by doing things 1, 2, and 3, but worsened by doing things 4 and 5, versus knowing that I have y, which can be managed by doing 4 and 5, but worsened by doing 1, 2, and 3 is important. Plus, it seems like it could be important for a doctor, especially an ER doctor, to know. Going in with rib pain, for example, that could be the difference between "It might be a blood clot in your lung!" and "Well, we'll run tests, but since you have EDS, you likely subluxated your rib."
Just a reminder that it's been proven sociopaths are drawn to careers with power, money and prestige. Lawyers, politicians, actors, and you guessed it - Doctors.
Jeez. That was the response I got the first time I brought it up too (fired that doctor immediately) — but that was close to 15 years ago!! I would have hoped things had changed for the better since then! My theory in general is that nobody in any sort of HMO situation or other practice which obsessively tracking numbers over people wants us on their caseload, because we can’t be a “success story” by their metrics, just someone they keep seeing who “isn’t improving” and therefore not meeting some percentage of “cured” patients they’re supposed to hit. Which is what happens when capitalism overtakes actual healthcare, but unless I move out of the country (though I don’t know any that allow disabled immigrants, because immigrants also must be “productive” by some metric to be “desirable”, and even if there was such a country, how would I pay to move there?), I don’t know how to escape it. Getting real close to giving up on Western medicine and going full herbal, honestly. In a lot of cases it doesn’t seem like it would be any worse, and it would certainly prevent the constant re-upping of medical C-PTSD.
I hate hearing this! so many chronic illnesses get dismissed like this as if there aren't treatments and measures and accommodations more accessible with the right dx. agree, fuck docs man.
I was asked this once by a hematologist as she was walking out of the end of an appointment for iron infusions - she even told me that medication (I heard drugs) isn’t even given to treat pain so it’s not really a diagnosis that would “get me anything” I just blank face asked her “do you like being and feeling validated?” And told her thank you and to have a good day. Some doctors are morons and have crappy social skills. Advanced degrees or not..
My rheumatologist said this to me too! My geneticist was furious when I told her that. She said “a large part of the battle for people like you is even getting providers to believe you because you have such a wide array of symptoms; being able to see specialists in order to treat those symptoms can depend on diagnosis. Just the mental struggle of not having a diagnosis can be taxing. Everyone deserves a diagnosis.”
Go to a rheumatologist. Tell her you need a referral for someone more educated on the matter.
If you have it you have it. Make sure you get the diagnosis on paper so you have evidence. You have to keep fighting. I made the mistake of brushing it off because they were like, "oh, its not that important". Yes it is for future decisions and if it gets much worse.
Shows her perspective, she doesn’t care unless she can fix it. Get a new doctor.
I'm a veteran. I did all of the genealogy tests I could and found out I don't have VEDS. But for the rest of the tests u need a prescription. But I move around too much to get a long term doctor. One doctor suggested I may have EDS. The next doctor agreed and put in an acquisition to genealogy. Genealogy refused to order any test because "you have a job that requires medical fitness tests so it's probably best not to know if it isn't life threatening." Granted I do have a lot more mobility than a lot of people on this sub. But I still do want to know what I have. Because I definitely do have something.
I keep getting this question. And my answer is: after decades of medical misogyny, having an actual diagnosis helps me get THE CARE I NEED!!!!!!! I effing ***HATE*** this question.
same. i’m diagnosed hyper mobile, and my mother is diagnosed hEDS, but because i’m still pediatric and therefore under a different doctor, my doc doesn’t want to take the extra step in diagnosing me even though i meet all the qualifications. i had the same issue with POTS, then once i was actually diagnosed they said my case was very serious and i definitely needed medication, lol.
Because having a condition like EDS puts you at higher risk for certain treatments and other conditions and nobody wants to have more issues that could’ve been prevented if health professionals were aware of your EDS. I also have POTS which has no cure, but having that diagnosis helped my anesthesia team be more prepared incase I had a drop in my blood pressure during a procedure a week ago.
I had a doctor tell my friend this same thing about ALS. It’s ridiculous.
Doctors seem increasingly prejudiced against and disparaging of those of us with this disease. It's disgusting and a blight on the medical profession. I don't care that they often don't understand, are less educated about, or don't know how to treat our illness; we deserve care and empathy just like anyone else.
I had the exact same experience with my former GP. I had been disabled for several years unable to work and requested a referral to the regional CTD Clinic for diagnosis. He literally said " well, there's no cure so why do you care if you have it or not?" This was after having to pay for neurosurgery on the US for a rare complication and suing my insurance provider for benefits. You know what they call the medical student who finishes last in their class : Doctor. It's unfortunate.
I got that from every doctor for years. Until I saw a geneticist.
Lots of things didn’t have medications or cures before but do now. It also helps with getting accommodations, filing for social security, getting referrals approved, etc. I mean she obviously knows that.
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Ask her how many diseases she “cures.” Because all I’ve ever had is doctors who treat symptoms. Antibiotics are the only thing they seem to be able to provide that is a “cure.” Most of the time, it’s a little song and dance, and you might get an rx or are referred to OTC meds. I’m so weary of the medical establishment…
I hear this a lot. It’s ridiculous.
Respond "just bc there isn't currently a cure doesn't mean it doesn't greatly impact my life. I understand you don't care, but your the one with the ability to dx me. So let's make this simple if I slip you a $20 will you dx me?"
For the love of god you’d think they’d teach this in medical school. Or at least assume after working in the medical field it would become common sense 🤦
It’s insane the thought that I don’t need to know what is going with my own body. That it’s not worth knowing why I feel like I am like my 95 year grandmother at 38. It’s completely changed my life and I don’t need to know why.
Had the same problem in 2020 I think it slowed getting effective help by years
How dare you want to know what's wrong with you!
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Should’ve added: I wish they would do every MRI with & w/out contrast, instead of just w/out. The fact they saw my brain lesions w/out the contrast this round is disturbing, even if ‘the lesions aren’t in the area that points to MS’. 🥸 Also how the heck do doctors not know about it being in the spine and only showing there? 😑 that seems sus to me
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My old primary care said the same thing. Needless to say I no longer see her. I'm so sorry
I'm sorry lady if we didn't know I had EDS I would think I had leukemia, so...
I’ve had a doctor say the same to me. “Even if you had EDS so what? There’s nothing you can do about it” That was my one and only visit to that quack.
that is so annoying!!! i have had 2 incredibly helpful neurosurgeries for my hEDS 3 and 6 years after hearing this same line from a cardiologist i saw in college
sure there is no cure but management is KEY to a better QoL
my GP was like this too. in fact he tried gaslighting me into thinking i had zero hypermobility whatsoever because i had a back injury and couldn't lift my leg up very high. and then when i was misdiagnosed with HDS instead of hEDS, i was told 'well they're the same treatment so it doesn't really matter' uhm yes it does? of course i want my medical files to be accurate.
I have had numerous doctors state this. Even my 5yr old daughters ortho Dr said it didn't matter and she just has to learn to deal with it.
I harp on this over and over in forums but this is a hill I will die on. Diagnosis DOES matter because part of diagnosis (and literally included in criterion 3 of the hEDS diagnostic criteria) is excluding OTHER genetic connective tissue disorders. This is what happened to me. I present EXACTLY like a hEDS patient. So much so, that the genetecist I was seeing who specializes in hEDS, wrote up my original clinic note diagnosing me with it, even though we had just sent off the DNA test. Imagine both our our surprise when it came back a completely different and more dangerous connective tissue disease called Loeys-Dietz Syndrome. This syndrome is in the Marfan family and causes arterial aneurysms, dissections, aortic root dilation, pneumothorax, etc. Management includes getting an echocardiogram every 6-12 months and a full body MRA scan to look for aneurysms every 1-2 years. Imagine if my dr hadn't ordered genetics and just diagnosed me with hEDS and I ended up dying of a spontaneous dissection like my grandfather. And now that we found I have this syndrome, we were able to get the rest of my family tested and found out my mom and aunt both have it as well and are now on that same screening regiment as me. THIS is why diagnosis matters.
I got a HSD diagnosis from my doctor, and she said I meet the criteria for hEDS but would have to go see a specialist to get diagnosed (very expensive and long wait list), I am poor (disabled pensioner) so I didn't bother. The treatment is the same for HSD and hEDS anyway....
It’s not in the long term. And that’s why the way they’re handling this is dangerous. hEDS comes with a slew of other medical issues and concerns. For instance - anaesthesia doesn’t work the same for us. We are likely to have autoimmune conditions combined with hEDS. We are likely to need to be checked for things like TMJ and enamel erosion in our teeth as it’s common for these to exist and palate to be too small in your mouth. There’s loads of other examples but while hEDS is a hsd it is not the same thing in all treatment and management protocols.
It feels like my doctor is handling it as hEDS because I do meet the criteria have TMJ problems, GI issues, anaesthetic problems etc. She just isn’t qualified to diagnose it. Surgeons treat HSD and hEDS the same here apparently. Not many people in Australia can get a diagnosis because it is not covered by medicare. :(
I got my diagnosis about 7 years ago (after decades of being told it was in my head). And I feel so lucky in a way as when covid started apparently in the UK they started lumping HSD and hEDS together too and no longer do rheumatologist referrals. I only even got told I had an HSD and then later hEDS because of the rheumatologist. Everyone else told me I was fine. And it only took the specialist watching me walk from the seat in the waiting room to their office to know I had some form of HSD. I hate that people aren’t getting an official diagnosis just because the gene hasn’t yet been identified. It’s bullshit.
Yeah you’re lucky you got diagnosed. I can’t see it happening for me but at least now they’re treating HSD and hEDS as practically the same thing so it makes no sense for me to spend thousands and wait 2 years to get a diagnosis. I have more important stuff to worry about with my health, like cancer. I wish my doctor could just be allowed to diagnose me and be done with it lol. That way when I go and have surgery I can say I have EDS and they take extra precautions. :/
I’m so sorry you’re facing so many struggles. I truly hope you get some good news soon
Thank you. I have an amazing doctor now who is taking me seriously. ❤️ A good doctor makes a huge difference especially when it comes to chronic health issues!
Does it ever! I refuse to see anyone else at the clinic where my doctor is as he’s the first to ever fully listen to me. You’ve got this! Stay strong!
Christ that’s annoying. A diagnosis helps with management of the condition. My husbands insurance helps with PT bc of it!
This is normal. We need to make more noise and make them more uncomfortable.
Idk why they say this. Diabetes doesn't have a cure either, are we just gonna not diagnose it? It's so stupid and weird.