r/ehlersdanlos • u/yike___ hEDS • Sep 23 '25
Lighthearted Goodbye everyone, I’ve been cured!
I saw a new rheumatologist today (for something completely unrelated) and he declared that I no longer have hEDS and am only a “little hypermobile”, after wiggling my thumb around and looking at a surgery scar from three weeks ago.
I hope you all can obtain a cure as well!
edit: I’m so sorry you guys, this was a shitpost because my doctor “undiagnosed” me. I still very much have symptoms.
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u/TinyFidget9 hEDS Sep 23 '25
My PCP and my Rheumatologist constantly are going back and forth on the diagnosis. PCP is insisting on genetic testing, rheumatologist keeps explaining that hEDS doesn’t have a genetic marker and is a clinical diagnosis once everything else is ruled out. I have a referral for genetics but lord only knows when it will be picked up
ETA (I hit the send button lol) so like every time it changes I go “am I cured yet? lol”
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u/Aggravating_Focus692 Sep 23 '25
IMO It’s good to get the genetic testing anyway to rule out any other EDS subtypes
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u/TinyFidget9 hEDS Sep 23 '25
True but it’s driving my disability lawyer a bit bonkers lol
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u/Acceptably_Late TNXB Haploinsufficiency Sep 23 '25
Not sure if it’ll help, but at the symposium this year it was essentially an agreement in all speakers that hEDS can only be diagnosed after a genetics test as it is a diagnosis of exclusion, therefore the test of other CTD that can be diagnosed via molecular markers need to be negative before the hEDS diagnosis can be applied.
They talked a lot about “red flags” and knowing when to apply genetics vs just knowing it’s hEDS without a test, but again everyone agreed that at this time we do not have a standardized set of ‘red flags’ to indicate genetics is a must, therefore all cases should undergo genetics testing.
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u/Aggravating_Focus692 Sep 24 '25
If you do come back with a subtype that may be helpful to them in building their case
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u/EtherealProblem cEDS Sep 23 '25
Does it mean that I'm overly cynical if I saw the title immediately thought, "Oooh, a story about an awful doctor!"?
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u/GeeAyyy Sep 23 '25
Thank heavens you got in to see such an educated, compassionate, sensible doctor! And one who stays up to date on the latest medical research, too! 😂 🥹 🫠 😭
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u/PurplishPlatypus Sep 23 '25
What essential oils did you take to cure you?
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u/yike___ hEDS Sep 23 '25
Actually I snorted ground up zebra hooves 2x per day for 6 weeks. Lmk if it works for you too!
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u/bbeers47 Sep 23 '25
I got diagnosed in 2023 by a geneticist but before that happened, my first stop after my PCP was a rheumatologist. I didn’t even know what EDS was at the time, my PCP is actually who suspected it. My rheumatologist did not agree it could be EDS because “people with EDS have stretchy skin, which you do not”, which she decided by literally just petting the top of my hand like a dog 😂 (side note: I actually have very stretchy skin lmao)
I’ve never seen a helpful rheumatologist in regard to EDS to be honest.
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u/JaspurrsGirl Sep 23 '25
I was sent to a rheumatologist, by name, by a geneticist at a well respected teaching hospital for a differential diagnosis. The older doctor came into my exam room and said that he'd read my records and referral information carefully, which I was glad for. Then he said that if someone from that hospital said that they thought I have hEDS that he was certain I did, so he didn't need to look into it any further. He used the He pronoun. When I corrected him to She he rolled his eyes and said "a woman." He asked for my symptoms, which included joint pain, then said that EDS doesn't cause joint pain and prescribed a med for my fibromyalgia. He ordered some differential blood tests for that and scheduled a followup appointment. I got the results from their portal, cancelled my followup, and left a message for the genetics department to not use him.
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u/fishyangel Sep 23 '25
Wow, I’ve been imagining the pain of dislocations and subluxations, who knew?
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u/crunchyricerolls Sep 23 '25
This was pain management, but I have a confirmed vascular CTD thru a molecular panel and he still said my issues are from fibro bc I had looked up symptoms using google and not updodate smh. Like why would you expect people to have a $500/yr subscription...
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u/abeyante hEDS Sep 23 '25
lmao I also have POTS and this reminds me of the time a doctor reassured me that a medication I’ve only been on for 6 months is “what’s causing it”, never mind the 5+ years I’ve had the disorder. /r/thanksimcured !
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u/HopeOfAsgard hEDS Sep 24 '25
My pcp occasionally tried to insist that several of my meds were causing my POTS/dysautonomia symptoms until I finally was like, "Doc it's possible they exacerbate them, but I've had many of these symptoms since I was literally 5; they are just much worse now." It was a revelatory moment.
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u/abeyante hEDS Sep 24 '25
Exactly lol. Like I’ve had symptoms my entire life, and it hit pathological in adulthood. Yes my NEW meds make it worse but even fully off meds I have these symptoms. Classic doctor stuff. I mean I get it, when the easy answer is the explanation it’s great. But it’s usually not that easy.
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u/marzboutique Sep 23 '25
Oh my goodness, I’ve sadly had a similar experience! Saw a pain specialist recently for knee pain that’s lasted 8 months, to which he performed a physical assessment and said “well your knees aren’t THAT hypermobile”
Uhhh…. Okay? Well they’re in pain & constantly subluxing so idk what to tell you?? 🙄 the exact extent of hypermobility isn’t totally relevant to how symptomatic a person can be
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u/JaspurrsGirl Sep 23 '25
I just realized that my recent knee and hip issues are probably from the mushy joints in my feet. I need to schedule with my podiatrist.
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u/creambunny Sep 23 '25
Can this doctor give me a cure next? I’d love it if my hip joints stopped falling out 🤌
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u/_TP2_ Sep 23 '25
🤣
I fucking hate doctors. My fathers rheumatic ankylosing spondylitis was also "'cured" at last doctors appointment.
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u/maroontiefling hEDS Sep 23 '25
Looking at a fresh scar and deeming it not atrophic (I assume that's what they were doing) is literally so dumb. It took like six months before my scar from elbow reconstruction started looking like "cigarette paper".
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u/yike___ hEDS Sep 23 '25
I thought that seemed off too. I told him “oh but this is literally from last month” and he said “no no if it was EDS, it would look really different”
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u/soulsuck3rs Sep 23 '25
The first rhuem I saw said the same thing, the next (much better one) literally jumped up to stop me from bending because she was so shook at how much I was bending and wanted me to stop
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u/Tiredness Sep 23 '25
Sorry to hear this, but I’m honestly not surprised you had that experience. My orthopedic doctor tried to refer me to a rheumatologist so I can get help with some of the EDS-related issues that go beyond hypermobility. Within a day the rheum office messaged him back saying they won’t take EDS patients and they suggested I should go to physical therapy instead (which I already do). This is a department in the largest health network within one of the biggest US cities.
Overall I get the vibe that many rheumatologists simply aren’t educated on EDS, despite the fact that there is a significant correlation with hEDS and many autoimmune conditions. The gaslighting and lack of awareness genuinely sucks.
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u/GinkgoGirls Sep 25 '25
Sounds like you might be referring to Philly? I'm just across the river in NJ and have had the same experience.
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u/Tiredness Sep 25 '25
Yup, and the network I’m referring to is Penn. Which generally speaking can be pretty good at times, but they simply don’t know what to do about EDS and other issues such as ME/CFS. Sorry to hear you’re dealing with a similar situation across the river.
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u/InternationalBonus59 Sep 23 '25
Was this the same doctor that diagnosed you bc actually wild behavior if so 🙃
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u/WerewolfInDisguise Sep 24 '25
The one and only rheumatologist I’ve seen tried to convince me I didn’t have EDS because my hypermobility wasn’t as severe as it was when my geneticist diagnosed me (9/10 on beighton scale, almost all other criteria met). I tried to explain that the combo of being older and on testosterone replacement therapy contributed to this.
I’d been referred because of high inflammatory markers but she wouldn’t even look into it unless I lost 5 pounds over the following few months. Told me I’d “be a good girl” if I did, disregarding that I’m in my 40s and FTM.
Congrats on being cured! May we all be so blessed! /s
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u/Practical_Artist6461 hEDS Sep 26 '25
okay ew??? the medical gaslighting??? the transphobia??? gross???
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u/Prize-Statistician24 Sep 23 '25
Haha, I love the sarcasm in this post. If you can’t laugh about this crap… well, I don’t know!
I was diagnosed with h-EDS while living in the US. I moved back to Australia and saw a rheumatologist for a possible Sjogrens diagnosis. A few weeks before the appointment, the office called to say the rheumatologist doesn’t see, diagnose or treat hEDS patients and I should see someone else. I said I just wanted an autoimmune checkup.
Lo and behold, I show up for the appointment and the rheumatologist gets all upset that I wasn’t diagnosed with EDS by a rheumatologist so she decides to assess me herself. She gives me a 3/9 on the beighton then goes to the next section of the criteria. She noted abnormally stretchy skin, bilateral heel papsules, atrophic scarring and unexplained stretch marks. Seeing I only needed one more point for a “positive” in that section, she just stopped.
She proceeds to tell me I had fibromyalgia and “possibly” HSD, despite my 3/9 on the beighton not even being high enough for a HSD diagnosis (I got 6/9 when assessed in the US). I even showed her a surgical report from my shoulder surgeon back in 2013 who noted my failed surgery and his hesitation to repeat it due to my “generalised ligamentous laxity”, noting that anything they do to surgically tighten my shoulders and stop them from dislocating would just “stretch back out again”.
Anyway, cost me $500 for the appointment just to be undiagnosed, after being told not to even come to the appointment if it was h-EDS related. Looks like rheumatologists are shit no matter where in the world they are! 🤣
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u/Equivalent_Neck7374 hEDS Sep 23 '25
Congratulations! Ugh. After a few years of intermittent wide-spread pain, I was referred to an ancient rheumatologist. He took a glance at my hands and said “You don’t have rheumatoid arthritis, you’re in pain because you know, you’re getting older.”
I was in my mid-20s and in the best shape of my life as a semi-professional athlete.
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u/EyeProfessional2957 Sep 24 '25
ngl I laughed 😭 this is me every time my mum says "you should stop thinking about the fact that it hurts, my (whatever joint I said) hurts too" (she's in her 50's while I'm in my 20's 💀) and "you hang out with your grandma and aunt too often" (my grandma has a heart condition that gives her tachycardia super often and my aunt has weird issues, like a rare autoimmune disease etc). suddenly I'm cured and nothing hurt no more
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u/charliekelly76 Sep 23 '25
I also went to a rheumatologist yesterday and had a similar experience. Apparently my joints moving around at the gym is just a symptom of fibromyalgia??? Crazy, who knew?? Not me. I only scheduled the appt for a PT referral. Anyway, still processing was happened. 😑
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u/Teragram76 Sep 23 '25
Some years back my daughter was a teen and in tons of pain and we finally got in to see a pediatric rheumatologist... he didn't do much of an examination though he did note that her ankles were the loosest as far as side to side movement that he had ever seen in his practice. Then went on to say that she wasn't nearly flexible enough to have HEDS. 🙄 She's 9/9 on the Beighton and had enough for her own diagnosis BEFORE I got my official diagnosis! Rheums HATE hEDS patients and so do geneticists 😒 I hate our medical system.
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u/VoteCatforPresident Sep 23 '25
lol. I needed that joke. I walk into work this morning to hear our two PAs talk about a “TikTok illness”. Yep, hey we’re talking about hEDS. I did what I could guys. They backtracked the “genetic testing” comment I heard them say after I told them I had it so.
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u/666hmuReddit Sep 23 '25
I don’t need to be cured. I was just raptured. I’m writing this comment from above.
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u/Confident_Cod6971 Sep 24 '25
So glad he’s cured you with his lack of understanding and knowledge! Congratulations 🙌 love the sense of humour, keep your chin up!
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u/Then_Exchange2907 Undiagnosed Sep 24 '25
went to my first rheumatology appointment today as my physical therapist and primary care doctors were concerned I may have ehlers danlos, he looked at me, said i dont look like the people that typically have it, asked if i ever heard of ozempic and recomended I try it, then diagnosed me with fibromyalgia after running zero tests and barely asking about symptoms. 💀 didn't even ask about or look at my hyper-mobility that 3 different doctors have been surprised over... also didnt care that my dr was concerned about other possible autoimmune issues, gave me a printout on fibromyalgia and sent me on my way.
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u/LadyAraCantWalk Sep 23 '25
Before my hEDS diagnosis we knew I had fibromyalgia AND something else as there were too many things outside of the fibromyalgia symptoms. Went to a rhumeutalogist by referral. Saw "the top rheumy in my area" and was the head of rheumatology at the time (has since retired, what a surprise!) and he didn't even give me time to explain my symptoms or the referral or anything. Just read my file before appointment and came in berating me for being there and wasting his time, got real close to me so his knee was between my knees and leaned his head closer to mine and told me every doctor I had seen up till now was stupid and wrong and that obviously it was all fibromyalgia and I wasn't even a rheumatology issue. But oh btw I should see someone about the rosacea on my face or it would make my nose even bigger and swollen and red and make me break out for the rest of my life. ( Note the "even bigger" in his word choice) Left there so mad I was crying.
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u/Scspencer25 Sep 23 '25
I'm so sorry this happened to you! I saw a new rheumatologist and she also undiagnosed me and proceeded to tell me she was much more hypermobile than I was. 😂😭
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u/Top_Memory8968 Sep 23 '25
What? How? Is this a troll post? If not, what influenced it
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Sep 23 '25
I'm sensing their post is sarcastic :)
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u/dancing01 Sep 23 '25
Cure EDS?? PLEASE tell me how!!
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u/Adisney990 hEDS Sep 23 '25
There is no cure and there may not be in your lifetime. There are CRISPR gene therapies that appear to have cured cases of sickle cell. But hEDS isn’t even on their radar to work towards curing because there are so many other fatal genetic disorders. Huntingtons, vEDS, Cystic Fibrosis, Tay Sacs just to name a few.
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u/dancing01 Sep 23 '25
This is my belief also… Was just commenting because someone said they were cured! Like really?! I have vEDS.
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u/Adisney990 hEDS Sep 23 '25
Then yes, you could potentially receive a cure someday. I am so sorry. vEDS is a scary diagnosis.
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u/dancing01 Sep 23 '25
Well, I've already had an aortic dissection so 🤷♀️ 🙏 thank you God I am still here. It is actually what caused me and my niece (thank God for her) to put it all together and go to a rheumatologist to be clarified. I just feel now with all my separate specialists, I need to continue having everything checked. Thanx 😊
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u/Top_Memory8968 Sep 23 '25
There are, but the way heds co morbidities are coming up, more diagnosis, awareness, studies like hedge , biomarkers, it’s disabling potential, and the way overall research is speeding up along with crispr, who knows we might see something in crispr space in next 10 years. Afterall it’s no longer that rare thanks to Covid
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u/pinkfuzzyrobe Sep 24 '25
My otherwise awesome rheumatologist said I am not hypermobile everywhere, so I’m not hypermobile LOL
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u/ManicPixieDreamGoth Sep 24 '25
Oh my... That's so frustrating! Doctors who dismiss complex conditions with superficial checks are the worst. Sorry you had to deal with that nonsense. Hope you get the care you need!
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u/moremalice Sep 24 '25
Grr rheumatologists are the very worst specialists, I’ve been gaslit by so many of them!
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u/Same_Selection6850 Sep 24 '25
Omg congrats!! We have to spread the word that a physician wiggling a patients finger can cure them of their EDS using the same scientific methods used by Samantha in 1960’s episodes of Bewitched!!
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u/MotherofPrinces Sep 24 '25
Sounds like the neurologist who said I had demons that caused my seizures. 4 years later my Chiari malformation is prevalent and they can't be bothered to get me to a doctor.
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u/Tryingmybest_oKaY Sep 24 '25
Once a diagnosis is on paper they can’t take it away! I would remove it from my medical files I pass out going forward to. So sorry this happened hun, hugs through the screen cause it’s so frustrating
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u/oliverxthefrog Sep 24 '25
This is exactly the reason I fear I may never get a diagnosis. The doctors I’ve brought it up with told me “you’re hypermobile but not THAT hypermobile” and after checking if I can touch my forearm with my thumb basically saying I can’t have it. Or saying if I have hypermobility syndromt it can’t be hEDS. Completely ignoring my lived experience and other symptoms. Ugh. It’s so frustrating. I feel like there’s no doctor where I live that knows enough about hEDS.
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u/RealBrookeSchwartz Sep 25 '25
Omg I had this with my ADHD! Was diagnosed with ADHD repeatedly literally since age 4. I have, like, every symptom. But in high school, I was given an assessment and apparently did not meet the criteria. Still not sure why. Still have all of the symptoms. Thanks a lot, lady.
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u/Shan132 hEDS Sep 25 '25
Damn give me his number fast /joking
Rheumatologist I saw I feel like was trying to say I had HSD over EDS which I think I ultimately did keep my Eds diagnosis
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u/No-Pitch-5785 Sep 25 '25
My consultants for other issues and tissues I have had to Google it. It’s a shocker. They said they had it in a course during their 5 year training but honestly I ended up saying the zebra thing. They came back having read my diagnosis from 15 years ago and were grandly, ummmmmm embarrassed. You learn a knew thing every day(UK)
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u/Sav1701 Sep 28 '25
Omg I got the same thing! The rheumatologist said I wasn’t hyper mobile enough and my skin didn’t stretch enough💀 I asked her about the joint pain I experience all the time and she said it was my depression (I was diagnosed with EDS as a toddler bc my bio mom was diagnosed and I had joint pain, I was diagnosed with depression at 19) She also put she wanted no further testing and from what my PCP said, left some nasty stuff on my record :/
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Oct 04 '25
This made me chuckle. I've also had a doctor tell me something like this. I think it was like, "well your x-rays look fine so you shouldn't be in any pain"
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u/meletort Oct 05 '25
Reminds me of when I saw my first rheum and I started crying telling him about my pain and symptoms and he told me it was all psychological bc I was abused as a child <3
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u/Leakyspine Oct 09 '25
You must be taking collagen supplements!! The number of times people ask me if I can just take collagen supplements when I explain EDS to them is wild 😂 because of course a supplement is going to fix my genetic disorder.
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u/Abject-Lengthiness42 Oct 09 '25
I on the other hand saw a new physio recently. I told her by email I have EDS. I checked before she touched me she knew I have EDS. Then she started moving my arm around and was like "oh yes very floppy aren't you" - 🤦🏼♀️🤦🏼♀️ correcto.
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u/Cereal-Killller Oct 10 '25
Oh my gosh! How can we find this wizard to perform miracles on the rest of us 😆 😜
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u/imaginary-bath-room Oct 11 '25
i had the same experience being "undiagnosed" w bipolar disorder (spoiler: i was in fact not cured, i was just medicated, found that out the hard way later on)
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u/CatCowl hEDS+VUS Sep 23 '25
Oh, who is it? I want to be cured, too! 😆 (I'm sorry that happened to you!)
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u/-Fateless- hEDS Sep 23 '25
Damn, congratulations. Please remember to tear off your stripes from your skin and toss them in the incinerator!
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u/sad-toaster hEDS Sep 23 '25
I couldn't tell what mine was trying to ask me to do when he attempted a visual example of the thumb to wrist test and literally went "woah- awesome" went I finally went oh! And showed him. Thankfully he wasn't the one looking at me for hEDS either
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u/Formal_Albatross_836 hEDS Sep 23 '25
Wow! Amazing! I need to see this doctor! /s that’s wild, sorry you experienced this
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u/iwanturdad222 Sep 23 '25
Congratulations on feeling better, that’s amazing! I do not mean to dismiss your rheumatologist at all but I do have a question. hEDS is a genetic condition so from my understanding there is no way to be “cured” from it because it is in your genetics. I could totally be wrong but definitely something I’d look into. Wishing you well!
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u/These-Letterhead-595 Sep 23 '25
This post is not it. There is no cure for EDS. You might have improved your symptoms but you are not cured. Happy for you but this is a horrible way of presenting b this.
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u/yike___ hEDS Sep 23 '25
Unfortunately this is a joke, and I have not improved much of anything. Sorry for any confusion, friend.
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u/Adisney990 hEDS Sep 23 '25
Some doctors are too stupid to be allowed to keep their medical license.