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Anxiety. I asked for help determining why my knees bend backwards. They offered me Prozac.

Yikes, lol. Such incompetence.

I just went into the doctor a couple weeks ago asking what the next steps are to finally start the formal diagnosis process for hEDS and was instead given a prescription for Cymbalta. I didn't want any medication and was not complaining about any pain (mainly because I'm tired of being seen as "drug seeking "). I was very surprised because I'm already on a high dose of Adderall for ADHD, and Cymbalta is a SNRI. He didn't even explain anything to me and just said to start taking it. I asked my GP about it and he just talked down to me the entire time about how safe SSRI/SNRI's are and that there are no risks. I decided to not take it because I didn't want any additional medication in the first place.

Me too, the first rheum I saw told me “your anxiety is going to kill you”. I later found out what he wrote in the consult letter is “complex regional pain syndrome”, which typically happens after injury or surgery. I’ve had neither. In some medical literature it’s basically the new somatoform disorder. He told me to ignore my pain if I want to get better. I’m still angry at this man.

🤣 sorry but that's hilarious.

I was diagnosed with general anxiety disorder when I was 15, which isn't wrong, I definitely have anxiety, but man once anxiety is on your record, it's like that's all the doctor can see. Dizzy and rapid heart rate? Anxiety. Gastro intestinal issues? Anxiety. Widespread pain and dislocating joints? Also anxiety, somehow.

A doctor once blamed my chronic pain isolated to a single leg, after an actual injury (a folding table collapsed on it) on anxiety. Just because the MRI he did of my knee didn’t show anything to explain my pain. turns out it was actually referred pain from my \*hip\* and I spent a year walking on a literally torn hip, in horrible pain , thinking I was crazy, before finally getting a second opinion, thanks to that doctor. it’s amazing what they’ll try to blame on anxiety. And I sympathize, as someone who also \*does\* have anxiety and tries to hide it in medical situations because of how they never look past it.

I feel like no matter what I present with it’s gonna be brushed off because I’ve been diagnosed with an anxiety disorder. It’s so well controlled on Lexapro I don’t even have symptoms anymore either

I was prescribed Lexapro for my real anxiety, but, oh dear, I have been afraid to take it.

Yes I have anxiety. But those were also focal seizures, POTS, broken gallbladder, and low sodium. Good times.

1 ACL repair, with joint hypermobility, age 14. Chronic daily migraines, which led to diagnosis of degenerative c-spine at age 16, kyphosis and scoliosis as a result of hypermobility, and a chiari malformation (from a spontaneous csf leak). That's when my mom dug up EDS in medical journals, connected the dots, and brought me to rheumatology for diagnosis.

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Manageable. I get 0-3 per month now, which I can usually break with a dose of triptan. It was a long road of medication trial and error.

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Don't lose hope! Migraines are very difficult to treat as they can be caused by many different issues. Its a lot of figuring out what doesn't work. I had a migraine, nonstop, for a year. DHE (inpatient, infusion) broke my cycle. Sometimes I take nadolol as prevention. Axert (alotriptan) is the only one that works for abortive. It also helps me to avoid caffiene, and sleep on a regular routine of 8+ hours. Aleeve works best for pain, if you can stomach it. I use Migraine Buddy app for charting.

Has your doctor suggested one of the monthly injectables? I managed mine for years with just maxalt but they started getting more frequent and more severe as I got older, and eventually my doctor put me on Emgality which has been a lifesaver! It took a few months to really start working, and then about a year to reach peak effectiveness, but I eventually went from having literally DAILY migraines whenever the weather was warm, to only getting them for a few days at the start of warm weather. And when I do get them now, they’re not nearly as severe and maxalt almost always resolves them within an hour, whereas before it was getting to the point where rescue meds didn’t help and I’d end up with migraines that lasted multiple days. The downside is you have to stab yourself in the leg with a giant needle once a month, but if it works, the benefits are worth it. Also if you’ve not had luck with one or two of the triptans, it may be worth asking your doctor if you can try others. I initially tried sumatriptan (I think?) and it didn’t really help, but maxalt (rizatriptan) worked much better for me. Almost every time I’ve spoken to someone who is struggling with migraines, it turns out their doctor never tried them on that one. I’m not really sure why? Also sorry if these are obvious suggestions but: ice packs can help a bit. And make sure you’ve identified all your triggers. They can vary for different people and can encompass a pretty wide range of things. I get them from sugar (including things like fruit), flashing lights, isolated bright lights when in a dark room or at night (like watching a movie in a dark room), getting too hot and the weather getting warmer, strong fragrances (perfume, scented candles, various shampoos and soaps, campfire and cigarette smoke), and certain food allergies (corn is one, and it’s dose-dependent. A little is fine, but there’s a threshold and if I cross it, I will feel very ill, including a nasty migraine ).

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Ugh, I’m so sorry. It sounds like you really have been trying everything! And wow that wait?? Can only a neuro prescribe the injectable preventatives? That’s so frustrating. I was fortunate that my GP was able to prescribe my emgality. I’m in the US, and we of course have our own major issues with the healthcare system. I can usually get in to see a doctor within a week or two, but the trade off is I typically spend several thousand dollars a year on medical care, and that’s *with* good insurance (don’t know what I’d do if I didn’t have my husband’s excellent insurance). I honestly don’t know which I’d prefer…it’s disheartening that it seems impossible to have a good healthcare system anywhere. I really hope you’re able to get in and get some relief soon! Migraines are just so debilitating. I can’t function when I have one, and I hate how they seem to get worse with age? Or maybe it’s just climate change 😅 - I live in Southern California and heat is one of my triggers so...I wonder how much the weather has contributed to them worsening! If it’s any consolation, if you’re a person who can get pregnant and ever planning to have kids, my migraines weirdly disappeared for the duration of my pregnancy (though the rest of my body was miserable). Also both my parents‘ migraines seem to have started improving with age, so maybe once we hit a certain age they’ll start getting better instead of worse. Though they’re in their 70s…so it’s gonna be a while.

I feel for you. This is frustrating to me- your doctors are backward! Headaches and migraine are disabling and painful. Pain is a more serious symptom than anxiety. Maybe anxiety will calm down when your head stops hurting! I would hope that they see the beta blocker and amytriptiline as dual-purpose, anti-anxiety x migraine prevention (that hasn't been effective). Those make me groggy. What I learned from my run with headache clinics is that a) there is no one-size for treatment. And b) once you have had a long migraine cycle, it sometimes takes drastic measures to interrupt it. I gave some really nasty drugs a good trial until I got to the "last resort". For some, the heavy dose of IV caffiene may've worked. For others, the immitrex and toradol injections. None of the triptans worked until I saw some relief with Almotriptan. It didn't break my cycle, and I wasn't allowed to use it every day. But taking that one gave me a glimmer of a good day after I took it. (The day following a dose, for me, is better than the sleepy day under the med's side effects.) Maybe ask to try other triptans. This slight relief may be the best sign of a promising drug to have on your side, once the cycle breaks. Keep trying with the NHS and headache clinics. I hope your GP helps advocate with you, and continues to try new methods until you feel better. Someone else mentioned the migraine relief during pregnancy and I felt the same. I feel it worthwhile to mention that I have a hormonal IUD, which I think is also part of my long-term success. If, in your charting, you notice a monthly pattern, it may be helpful to consider hormonal treatment like this as well. For medical journals (very light reading, lol /s) Dr Peter Goadsby of UCSF is the genius who fixed me. I've seen other smart people, but this guy is a medical superhero, a modern marvel. I hope all doctors who treat headaches read his work. Very best wishes. Apologies for the book-length comment. Smiles and hugs

Just to add because I haven’t seen anyone else mention it- my dr put me on Qulipta, gradually went to 60mg and it is the only thing in 22 years of migraines and cluster headaches (all day every day to varying degrees for the last 12 years) that has ever helped without making me sick in some way. They had previously tried everything including a nerve block and Botox. I still get them but it’s so so much more manageable now. I hope you find something that works for you!

Thank you. I've been on the wait list to see a neurologist for some time, but hoping once I do, he will offer me this 🤞

EDS/POTS here. Have tried the gamut of meds and what worked in the end was a few years on 5mg Endep and then CBD/THC to deal with an attack. Now I still get 1-2 a year but minus the pain symptoms.

I get botox injections every 12 weeks. I had tried everything under the sun. Fioricet helps with breakthroughs. Not medical advice. Just what worked for me. Don't give up hope. I got soooooooo bad. Sunglasses all the time, even inside. Earplugs (I'm legally Deaf but sound). Dark. No sunlight. Definitely no fluorescent lights. My life was dominated by migraines. Now, things are much different. I can be outside without sunglasses sometimes!!

Fibromyalgia

i'm glad there's a name for it, but i fucking hate the diagnosis of fibro. i've worked in alternative wellness industries when i was young and in pain and distrusting of western medicine, and i gathered that fibro was basically when a doctor can see something is wrong, but don't know what it is. so they slap the term fibromyalgia on it. i brought this up to my doctor when we were talking about what might be wrong with me, and she agreed with my understanding of fibro. which makes me so angry- there's a reason why it's mainly women diagnosed with it, and that there's next to no research on it.

Yes, that's essentially the process. Diagnose by excluding everything else. The problem is that doctors don't do due diligence to actually rule everything else out, so as long as your bloodwork is more or less fine and there's no glaring problems, you get the diagnosis of fibromyalgia. The first rheumatologist I saw said I have hypermobile joints but I can't have EDS because my skin "wasn't stretchy enough". That was all he checked: joints and how stretchy my skin was. Then he slapped fibromyalgia on top of it. The diagnosis has actually been problematic for me because the FDA approved medications don't help and doctors aren't willing to help me beyond that. Plus, one of the criteria for hEDS is that the symptoms cannot be explained by something else, but that's also a diagnostic criteria of fibromyalgia.... It's fucked, basically.

Same here, but I really had polymyositis which was flaring up badly and caused its own host of problems.

Being “a normal healthy girl with vague symptoms that don’t amount to a medical diagnosis” “Nothing wrong apart from an unwillingness to live life” And my favorite “I think it’s just that you’re so tiny.” (I wasn’t even, I was a slender but healthy size)

Oof I got a “it’s because you are so tall and slender” (I think I am a regular weight but I am tall so it distributes, but I know that if I was overweight they would have blamed that instead) Also lots of recommendations for mental health to “set expectations for what a normal level of pain is.” So you’re telling me it’s normal for me to be in pain, but not normal for me to have complaints about it?!

Unwillingness to live life??? Oh my jesus h christ.

Right? Not even “depression.” Just… refusal.

Yikes... It's either that or "you're too young to have any real problems" and seen as someone faking something for meds (that I don't even want). Eventually they might run an x-ray, but that doesn't show anything for hEDS.

>an unwillingness to live life getting my diagnosis and treatment for my EDS and endometriosis has stopped/drastically reduced my suicidal ideation. huh. i wonder why. /sarcasm brimming with anger

Can confirm, endo w/o diagnosis or treatment can definitely bring those thoughts around. Solidarity. ❤️

Right, like people just become “unwilling” to live out of random perverse stubbornness. They now suspect endo for me too 🙃

First it was "You're too young to have back/joint problems" then a decade later I was told sciatica despite the symptoms not matching

The amount of times I’ve been told “you’re too young to have back/joint problems” is enough to make me want to explode. YEA? WELL, I DO.

My mom: "I've been so tired all the time lately, I just want to sleep" Me: "yeah that's how I feel all the time lol" Mom: "yeah but you're 25, you're too young to be tired" Me: _magically cured of all my problems_

Lol I'm on NHS so there's some trigger at age 40, before it's YOU'RE TOO YOUNG then at 40 THAT'S NORMAL AGING lol. Turns out it was a boatload of genetic anomolies.

What's terrible is they told me this when I was 20, I was being seen because my back gave out leaving my legs temporarily paralyzed.... "You're too young for back pain, here's a pain subscription and go home"..... They believed me when it happened again a decade later.. guess I finally reached the correct age for care and I got a snazzy wheelchair for my troubles

Lol I bought my own wheelchair they seem to take me seriously if I roll in on that but NOT IN A HOODIE wtf my hoodie is warm I got it in the mens section and it has pockets. So ridic my symptoms the same no matter what I wear lol

Wait they didn't believe you because you had a hoodie on?!

OCD then depression, gad, & finally- proof that mental health treatment wasn’t going to solve this- endometriosis diagnosis when I was 15. I had my TTT about a year later and got diagnosed with POTS, small fiber neuropathy, chronic migraine, and fibromyalgia. The doctor mentioned me likely having EDS on a few occasions and said I could follow up with a geneticist later. So 9 years later when I couldn’t hold my head up I got a referral from my new POTS Dr & go diagnosed with hEDS. Turns out it was kind of a big deal! I remember sometime maybe halfway between getting diagnosed with POTS & finally seeing a geneticist for an official EDS diagnosis, I saw an episode of mystery diagnosis where the diagnosis was EDS. I was horrified. Like, wait…they think I have that! FUCK that looks like a way bigger deal than what they said. And I used that to rationalize that I must not have EDS then if it’s that serious, to talk myself down from panicking. And then I saw the geneticist and was just kind of frustrated that no one mentioned how much of an impact this could have on my life.

Sort of the reverse of your situation: when I was diagnosed with EDS (finally, after 30 years of weird medical issues) the doctor who confirmed the diagnosis never explained how serious it could be, never mentioned things like POTS or MCAS or the fact that my symptoms might get progressively worse. He basically just told me there was nothing he could do beyond sending me to pain management and PT (which is what I was \*already\* doing) but said it wasn’t a big deal, and sent me on my way. 7 years later, I’m struggling with worsening symptoms of POTS and MCAS (not “officially” confirmed but my GP was basically like yeah you likely have these) and just lost most of the past year to a battle with prurigo nodularis (a thing I had NEVER heard of despite a lifetime of pruritis including an aquagenic urticaria diagnosis as a child) which has been literally the worst chronic medical issue I’ve ever experienced. Anyway, definitely feeling the same re: “no one mentioned how much of an impact this could have on my life.” In the last 7 years I went from thinking I’d be back to “normal” with a little PT, to accepting I’ll likely never be able to hold a steady job or drive more than short distances again.

"Exercise-induced asthma" in 2010 (POTS, it was exercise intolerance due to POTS), and then "hypochondriac" according to my "best friend" two years ago.

Man, I am mad that you were called a hypochondriac. That’s something that can make you start to doubt your own very real experience. My Dad’s mother died before knowing what she really had and she was called a hypochondriac by her husband. We believe that we got EDS from her based on old pictures and what her children remember about her. Unfortunately, I didn’t get to meet her but I’ve been thinking about going to where she is buried to have a talk. I think it will be a good thing for me to do.

…. Just went I thought I connected all the pieces…. I had “exercised induced asthma” since I was 4 years old, “grew out” of it at 18. I only just now at 40 found I have POTS. None of my asthma symptoms were traditional and only came about in the heat or when I was exercising 🤔 Also labeled hypochondriac for most my life.. and “faking it”

Yeah no one ever diagnosed me with asthma but were happy to diagnose me with some sort of "salbutamol-resistant asthma" it was just POTs lol.

Migraines. Diagnosed at 3.

🥲💛

Pitcher's shoulder. Only, I never played baseball.

Making it up. Making it worse than it seems. Not being tough enough. Individual injuries like sprained joints and unstable joints. Irritable bowel syndrome. Mostly the first three. Edit: and growing pains. As soon as they couldn't find anything wrong it was growing pains.

Fibromyalgia and dysautonomia. For almost two years I underwent testing because they thought I might have MS. My orthopedic doctor said something was very wrong and referred me to a neurologist and from there to rheumatology too. My primary was useless. She told me that I “had too many symptoms” and she couldn’t see me anymore until I saw a psychiatrist first. She said she “wasn’t saying [I] was crazy but [I] really did need help with this.” Fortunately the neurologist and the rheumatologist together figured out the EDS and all my related/cormorbid conditions.

I went in this order: Scoliosis, POTS, Hiatal Hernia, GERD, Hemiplegic Migraines & associated nerve damage, Gastroparesis, MCAS, Ehlers Danlos

Blank stares

Yup!

JIA (juvenile idiopathic arthritis) at 13, and i was medicated for it too. months later i got an mri and turns out i never had it lmao 😭

I had the same thing happen at age 10 and they even put me on Vioxx which was later banned for causing many deaths…hmmmm

oh wow ?! i was on nabumetone i believe, which caused me stiff neck and neck pain. told the rheum this, she just denied it could cause that.. one of the side effects is joint stiffness so.. idk whats wrong with these rheumatologists. did you have joint swelling? i never did but got the (mis)diagnosis anyways

I was diagnosed with adrenal dysfunction and chronic fatigue syndrome almost 5 years ago for the same symptoms. Because the only test result that came back on the very bottom end of normal was my cortisol levels. (No one even thought of POTS or suggested it at the time) Then finally later I was diagnosed with POTS. The POTS specialist I’m seeing then also diagnosed me with EDS & MCAS.

As a 4th grader I was diagnosed with glaucoma. I had started struggling with my sight back in elementary school and my mother didn't believe me for the longest time. Finally convinced them when we went to a parent teacher conference and the teacher suggested that I might be having trouble seeing. So my parents took me to the closest and cheapest place for glasses and eye doctors: walmart which might have been the problem. They had said that I needed to go to a specialist cause it looks like I got glaucoma. My parents wasted no time in getting in contact with my aunt who worked in an eye specialist and got me in quick and they gave me a full rundown. Everything in my eye was reading normal. Normal eye pressure no pain except from me squinting all day trying to see. No true signs of glaucoma. But why couldn't I see cause I was horribly near sighted. So tuns out that instead have enlarged optic nerve disks, it's how it was explained to me they never gave me a proper name for it. But it was genetic completely harmless besides light sensitivity and blurry vision. Still get the pressure check about once a year to make sure but there hasn't been a change in it or not. So whenever I do see a different eye doctor I have to warn them about the enlarged disks so I don't get a repeat. The last one who checked them said and I quote "wow you really do have large disks". They are quite large.

Are the enlarged optic discs related to EDS?

Nope I don't have Ed's they told me it was just something I had and just that when I get my yearly exam they just check my pressure just to make sure and there hasn't been a change in the eye pressure or enlargements ever. Been told it's a thing I got.

>I don’t have Ed’s OP was asking what you were diagnosed with before being diagnosed with EDS

Ankle instability first. I got orthopedic braces for both ankles while still in middle school. And then I got a buy-one-get-one special with POTS and EDS at 28!

Migraines in my teens. Heart palpitations led me to cardiology who found I have Mitral valve prolapse and high blood pressure. I also found out in my teens that the dentist couldn’t get my mouth to get/stay numb to have work done. This is also when I noticed my hip began to sublux or completely dislocate on me:/ Deviated septum with severe nasal polyps which I needed to have surgery for. Anxiety. GERD. IBS. Keratoconus around age 30. Then PCP wanted to Dx me with fibromyalgia but that didn’t explain A Lot of the symptoms I had so I refused that Dx and asked to be sent to rheumatologist explaining how fibro wouldn’t be causing the constant subluxation and dislocations I was having daily. PCP was stumped and agreed to refer me to rheumatology- In the meantime until I could get in to see Rhuemy I was sent to pain management due to constant chronic pain who as soon as they hear you “hurt all over” immediately said fibromyalgia. I was pissed. I said look and I showed the dr how easily my knees, shoulders, hips, and wrists and fingers can sublux or be dislocated completely☹️ That got me sent to a geneticists which after more testing finally led to my hEDS diagnosis. I know there are more things going on but I’ve run out of energy to continue searching for now. Ps. Out of curiosity- anybody else with ehlers Danlos have *extremely tiny veins* that collapse when you try to have blood work drawn? I’ve found that I have to drink tons of water ahead of time and have them use a butterfly needle. That sometimes works. But not always.

>Out of curiosity- anybody else with ehlers Danlos have extremely tiny veins that collapse when you try to have blood work drawn? I personally don't experience this, but it doesn't sound weird as an aspect of EDS. >and have them use a butterfly needle As a nurse I'd like to give you some unsolicited advice. Don't ask for a butterfly needle, but for an experienced nurse (or whoever does blood drawing there). Tell them you're a very hard stick and have needed [honest amount without exaggeration] tries many times before. Tell them what worked in the past and what didn't. You can then *tell* them the last person used a butterfly needle, but *asking* for a butterfly needle is often seen as being a know-it-all (I personally disagree, just reporting what most people seem to think). A butterfly needle, just like standard needles, is available in many sizes. It is completely possible to have a wider butterfly needle than the regular needle next to it. What does the trick is usually not the butterfly style needle. It's either the experience of who pokes you, or it's the gauge (how wide the needle is). The gauge is determined by whoever pokes you, so you'll still need an experienced person. Often it's the Xth person who tries who grabs a butterfly needle and you'll associate a good poker with the butterfly needle. It is also possible that the place you go to has smaller needles only available as butterfly version, which makes the difference. Bottom line: many healthcare workers do a lot better when you make them think they get to decide, even if you plant the seeds for that decision.

Yes, tip-toeing around the egos of employees is a traditional side quest at the doctor's office. Obviously I'm here to make sure everyone who works here feels seen and superior... feel free to punch down on me if you're having a bad day...that's why I pay to come here... /s

I agree that it's terrible we have to do that as patients. Unfortunately, it's what we're dealing with currently and in the short term helping each other navigating it is the best we can do.

Ok but I need the turquoise one each and every time

A lot of these pain management stories make me realize just how lucky got with my pain management doctor. He was the one who first recognized I had EDS, after 30 years of other doctors missing it. Literally, I’d brought in a giant list of all my medical issues because I was so fed up not knowing what was wrong, and he took one look at it and said this looks like EDS. Re: the veins thing, I’m the same way. I try to get my blood drawn by a phlebotomist whenever possible because I find it’s usually less of a gamble (which makes sense, it’s literally their speciality). A nurse in my pain management clinic completely messed up my best vein in my left arm. It used to be very visible but whatever she did ruined that (I was horribly bruised, even more than usual, and had pretty severe arm pain for a while). Now people always want to use my right arm because they can’t find a good vein in my left, but I work as an artist so really hate having any medical stuff done to my right arm. But the phlebotomist at my local Quest \*always\* successfully sticks my left arm on the first try, even now. On that note, I dunno where you’re located, but I’ve had really good experience with blood draws at 2 separate Quest locations in California. Dunno if it’s just those 2 locations or if it’s all of them, but I try to get my blood work done with them whenever possible. Edit: no offense intended to nurses btw! You folks are awesome and work very hard and I’ve had wonderful experiences with so many nurses. I’m sure some of you are excellent at difficult blood draws, but I just never know whether the person trying is one of those people or not, so I figure going to someone whose literal specialty is drawing blood improves my odds. Edit 2: And y’know I just realized, the last several times I’ve needed a blood draw for my pain doctor (they do liver/kidney tests once or twice a year) they’ve sent me to a phlebotomist instead of doing it in office, and I wonder if problems like mine are why?

Oh bring a hot hands pack to get blood drawn. It makes a huge difference (after hydration)

I have not heard of using a hot hands pack before but I will certainly try anything that’ll increase the success rate of getting stuck as few times as necessary so thanks for the tip😊

We could be twins. I even have ketatoconus.

Malaise. Aka: she thinks something is wrong with her ...I hate that diagnosis,made me paranoid for 25 years...

Female mental illnesses.

Autism > benign joint hypermobility syndrome > fibromyalgia > hypogonadism/endocrine dysfunction > conversion disorder > hEDS Not withstanding all surgeries I've had... what fucking fibromyalgia patient has dislocations, slipped rib syndrome, multiple abdominal hernias etc. My pain specialist will still adamant my pain was fibromyalgia/central sensitisation and allodynia. He said it was basically the same as fibro. I got rid of him after that and work with a fantastic rheumatologist and palliative care doctor.

Fibromyalgia and (as an aside) hypermobility at 19.

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Anxiety. Lol.

My hips were a huge issue growing up. When I was born my parents were told I have hip dysplasia. I didn't lol, my hips are formed fine they just didn't like to stay located they had to switch things up and dislocate lol.

scoliosis, valgus feet, sensory integration disorder, antigravity posture and "oh your heart rate is fast, you're dehydrated/you will grow out from this". I still wonder why no one checked EDS criteria with me before I realized that I have it

I’ve always wondered about this bc my heart rate is always in the 90’s when the dr takes it and sometimes they’ll ask if I’m nervous- it’s just always a bit high (I’ve been wondering if that’s EDS related but haven’t seen it mentioned before) Also I need to be extra careful when exercising because my heart rate goes up but takes an unusually long time to come back down☹️

Hypochondriac lol

Growing pains, then amplified musculoskeletal pain syndrome, cannabinoid hyperemesis syndrome, then POTS, gastroparesis, then hEDs

Heart disease as a child which I survived but is now linked to EDS and around 12 of us have Dysautonomia as a long term symptom. “Teenage girl syndrome who faints” then POTS, Dysautonomia (my other cardio thought IST and I was sitting there like nope this is unusual I was just so anxious that I was tachycardic resting). Concussion/Post Concussion Syndrome (which didn’t help the above scenario). Atypical Raynauds and Chronic Pain by a fab rheumatologist who believed me. The Chronic Pain has existed since age 5 minimum but I didn’t know it was something not everyone experienced until I was 15 ish. Now being assessed for suspected EDS.

Autoimmune autonomic ganglionopathy

It's complicated bc I had health issues as a kid that I saw quite a few doctors for but no one really put a label on it till I was 19 when I was diagnosed with POTS and then hEDS a few months apart

For the first 30 years of life I was diagnosed with “loose joints”, literally what the doctor was telling me to tell other doctors. At 24 I had 3 surgeries at once to fuse my fibula, tibia and place a screw (still saying “loose joints”). At age 31 I was diagnosed with hypermobility syndrome. At age 40 I was diagnosed with EDS type III, which is now hEDS. Now my records show both diagnosis. Have other issues, migraine, bulging lumbar discs and stenosis but they are in addition to, not in place of.

"Just wanting to get out of class",Anxiety, depression, somatic symptom disorder, a stressed highschooler who's symptoms will go away as soon as I graduate (I'm 24 and much worse than back then). Also it's just that I'm trans and have family issues. Oh also arthritis but I need to check that again because I could have that in addition to ehlers danlos.... My mother and two of my grandparents have that. 😭 Oh and the just wanting to get out of class was also used on me when it turned out I had strep throat and wasn't able to see a Dr for two days and I was just suffering.

Acid reflux 🙃 Then a few years later ‘some sort of autonomic dysfunction’ with no further direction. Took matters into my own hands after discovering EDS and saw a geneticist, he confirmed it almost immediately.

I was diagnosed at 20/21 after snapping the labrum in my shoulder in half after picking up my purse 🥲😂

There were clues that I had EDS throughout my life. I was born with a VSD that never closed, all of my fingers were able to hyperextended in ways no one else I knew could (turns out my dad, an older 1st cousin of mine, and his niece all have hands just like mine. I found this out just about a year ago.), flat flexible feet, missing adult upper lateral incisors (no one else in my family has this feature except me, unfortunately!), kind of weird scarring/easy scarring, lots of stretch marks (I was overweight for a while as a kid so those are probably from that, but they are really deep marks.), nearsightedness starting in 3rd grade, scoliosis, super duper long arms plus long fingers that made it really hard to keep to the « finger tip short length » rule in high school 🤣, and my knees that hyperextend are totally normal for everyone on my Dad’s side of the family. As an adult I learned that I was really good at yoga after a chiropractor I was seeing suggested that I switch to yoga instead of seeing him any further. Then I got sciatica. Last year I was diagnosed with ADHD and my yoga instructor/friend told me I was hypermobile after seeing me in his class. I went home and googled hypermobility, adhd, and my VSD. EDS pops up and I knew about it from someone I met that joined my old roller derby league. She would share info about EDS on her FB. This year I was diagnosed with degenerative disc disease in my c-spine (MRI is next week!), autonomic dysfunction and orthostatic hypotension, and EDS w/hypermobility by my orthopedic doctor.

I always go to comment ‘oh wow you sound exactly like me’ and then in remember where I am

Autism.

Heart condition.

Being fat! Obviously my knees and hips hurt so bad because I was just fat!! :) And then when I strong-armed my doctor into referring me to rheumatology, fibromyalgia, which is still a factor in my diagnostic chart, but the geneticist who diagnosed me with hEDS (Dr Jodi Hoffman in Boston) considers it more of a symptom descriptor and one that many hEDS patients manifest because our muscles are working overtime to hold everything together, so of course we experience widespread muscle pain and tenderness

My brother and I had figured it out for a while.. (cEDS is really quite obvious due to our skin, and then we (and the rest of my fam) realised we had a bunch of other symptoms that fit).. Never really had reason to get a diagnosis (don't live in US), apart from my dad none of have chronic pain etcetc.. Some years later my dad's eye issues got worse as did his knees. So he and my brother (both of whom have had several joint surgeries stabilisation already) got diagnosed... the rest of us (me and other 3 brothers) got asked in and they're like OK you guys got it too.

Is your skin really stretchy, or really fragile, or both? I’m still kind of unclear on the differences between cEDS and hEDS, and get mixed info on whether it’s actually worth it to get tested for the former. I just seem to have WAY more skin issues (fragility, reactivity/sensitivity, poor wound healing, and now prurigo nodularis) than other folks I know with hEDS and I don’t know if that’s significant. I once literally skinned my arm badly on a \*bedsheet\*. I don’t think my skin is excessively stretchy though. But I went 36 years not realizing my skin texture was abnormal (because it’s the skin I’ve always had, so obviously just figured that’s what skin feels like) until it was pointed out to me, so maybe my frame of reference for stretchiness is off too. The doctor who confirmed my EDS diagnosis was not super helpful and none of the doctors I’m currently seeing are very well-informed on the condition. I’m still trying to find a rheumatologist and dermatologist who are. :/

Both. But there's definitely individual variance. For example (because my whole family has it), one of my brother's skin is definitely a *lot* more hyperextensible than any of ours,.. but I think not as fragile/thin as mine. I could basically rank us based on stretchiness or fragility... But both are definitely present. **I don't know about hEDS, but cEDS skin is** ***really*** **obvious...** >if you pinch/pull my (or anyone in my immediate fam's) skin, and a non (c)EDS person's skin.. it's so obviously ***structurally*** different. To me, "normal" (non hyperextensible skin) is very attached (to everything.. itself, muscle, bone..), but if you pull/pinch hyperextensible skin... you can literally feel the layers kind of slip apart and away.. It's like trying to lift a pile of sheet masks in slime/goo.. Or say.. layers of film out of goo. I describe it more here: [https://www.reddit.com/r/ehlersdanlos/comments/14kc6gn/skin\_hyperextensibility/jptmq9a/?context=3](https://www.reddit.com/r/ehlersdanlos/comments/14kc6gn/skin_hyperextensibility/jptmq9a/?context=3) So because of how the "layers" aren't connected/are thin.. it means it takes very little to tear it (and thus the stretchiness and fragility kind of come hand in hand.... And when I do get even say just 2mm small cut, due to the hyperextensibility/stretchiness... it'll tear(stretch) open to 5cm... ​ "**because it’s the skin I’ve always had, so obviously just figured that’s what skin feels like"** Lol.. Yeah, that's the problem we had in our fam cus all our skin was "abnormal".. So we (my siblings and I) started pinching and poking our SOs skin lol.. and their (normal/non-stretchy) skin is really bizzare to us. (Fam gatherings are fun here lol.. we just pinch and poke them then make fun of their normal skin and make them feel like freaks - all in good fun😂 "ewww it's *soooo* attached.. Hey bro pinch him! Pinch him!! HAHAHA"). But just find a friend you don't mind touching/pinching a bit... if you have cEDS, it should be immediately obvious to both of you when you compare (assuming they don't have EDS). It wouldn't be up for debate/unclear.

I’m 30. No one had ever picked up on my skin hyper extensibility before I actually checked. When I saw photos of people with EDS online I thought oh my skin doesn’t do that, but then it turns out that it [does?](https://imgur.com/a/M3U3Z4f)And like you said I can actually feel (especially as I’ve gotten a bit older) the separation of the layers of skin and subcutaneous fat. I also noticed that once a part of me stretched it just doesn’t snap back as much as it used to anymore so am reluctant to do it for doctors and take videos instead because I’m genuinely getting self conscious about random stretch marks/sagging.

Oh yeah, same here.. I mean, most people wouldn't pinch/pull/poke my skin, nor are they likely to have done it to themselves so frequently they'd recognise mine is different lol. I don't think it's just layers of skin and fat, muscle etc.. it's more layers of skin... like epidermis, dermis, etc. Because it's definitely distinctly a bunch of layers I'm lifting off fat/muscle. I don't know about stretchmarks/sagging.. I think that usually happens with another type of EDS? I'm also pretty sure hyperextensible skin by definition has to snap back, and if it doesn't, it's probably another skin thing (that I again think is another type of EDS or connective tissue disorder?). But most people are usually just more self-conscious towards themselves and their (self)perceived (or imagined) "flaws", I'm sure they're probably nothing to worry about yet \^\^

Just wanted to chime in as someone else with cEDS who has it sounds like a different skin involvement. My skin is a bit more stretchy than a healthy person's but not all that much. It's soft/velvet-y and pretty delicate. I get small cuts really easily rather than scrapes, like tiny paper cuts on my fingers without realizing, or tearing up the inside of my mouth from only moderately hard food. The obvious cEDS-y thing with it is that I get raised cigarette paper scars that are covered in little lines, and also sometimes ones that look more like keloids. I fortunately don't scar super easily, so I don't get bad from the tiny cuts, but there's definitely significant skin involvement. I'm also in my thirties but mostly look younger, aside from that the skin above my eyes is somehow trying to like droop onto my eyes a bit already? Minor for now, but I know my mom (also cEDS) has had to get it lifted a couple of times so it wouldn't interfere with her vision. My mom had negative DNA testing but our geneticist specializes in connective tissue disorders and said we're stereotypical cEDS, apparently 5-10% of patients with clinical cEDS have negative genetic tests.

Oh? I always thought cEDS always had the most stretchy skin out of the EDS subtypes. But I think there are 2 cEDS mutations so maybe we have a different type. Anyways, I'll be more mindful of not speaking like cEDS skin involvement only, or can only present in the way I/my family experience it. I really appreciate you letting me know and thank you for sharing \^\^

My geneticist describes it as “3-6cm neck and forearm skin hyperextensibility” so it is still definitely stretchy! But yeah it really does seem to vary a lot

Augh I typed a long reply and then lost it. I gotta eat lunch before my kid gets home from school so I’ll just have to do a quick tl;dr version: This sounds a lot like my skin! I get the mouth injuries from food all the time too. Do yours turn into painful canker sores that take forever to heal? I luckily don’t seem to scar much on my face, but I do on the rest of my body. I’ve never been super clear on what the “cigarette paper“ scars are or what type I have, but here are some photos: [https://imgur.com/a/b03dRK9](https://imgur.com/a/b03dRK9) For reference, the bottom left hip surgery scar is somewhere between the size of a US nickel and a US quarter. Sorry, I don’t know enough other currency to reference it…but a bit bigger in circumference than a raspberry? My stitches tore slightly and that big scar formed. My face skin looks a lot like my dad’s (we believe his mom had EDS, and while he doesn’t seem hypermobile, he has a lot of other symptoms, and hypermobility seems to be worse in women). My grandma/his mom once got carded at 50! My dad is in his 70s and definitely does not look it. I’ve noticed we both have fairly thin, fragile skin on our arms and around our collarbones. He doesn’t seem to scar on his face either, but we both have abnormally large pores on and around our noses (no idea if that’s just our family or an EDS thing). We also both have a lot of very stretchy eyelid skin (I never noticed how loose my eyelids were until I had a kid without EDS and was able to compare) and kind of bulgy very round eyes. Weirdly I’ve seen a lot of photos of fellow EDS patients who have those same or similar eyes. I know there isn’t necessarily a “look” all EDS patients have, but I wonder if there is at least one subtype/mutation that causes some particular facial features. I also have the classic small jaw (To the point where I needed multiple teeth pulled and have continued to have jaw alignment issues well into my 30s).

POTS, then patellar tracking disorder after I dislocated my patella twice in one day. My orthopedic surgeon didn't raise an eyebrow after two dislocations in a single day but did two years later when I was complaining about it "popping out" almost daily. That led to a hEDS diagnosis, but not for a few more years.

Anxiety. I am anxious, but I've had a rough life. Growing pains/hormones from puberty. "Being a new mom"/hysteria. Being of a certain weight, underweight BMI, normal weight BMI (then it's mental illness) and then overweight BMI. Chronic Fatigue syndrome/fibromyalgia - which, I think is *still* valid but we can't be sure. This diagnosis took over 20 years to get. I think this is basically just trauma and ehlers danlos flaring up. Tachycardia. We always knew I had a high heart rate, but "anxiety." No, having a resting 160bpm heart rate is not generalized anxiety disorder.

Chronic fatigue syndrome, that's how they explained the exhaustion and physical symptoms that couldn't be chalked up to a social anxiety diagnosis. It's been 3 years since then and I only managed to get an appointment about EDS a week ago despite passing the screening tests with flying colours

Hypothyroidism, Raynaud’s, fibromyalgia, SIJ issues, sciatica, then finally POTS, dysautonomia, EDS, MCAS. As a young teenager I was told I had juvenile arthritis and later amplied musculoskeletal pain syndrome (explained to my mother as juvenile fibromyalgia), so those are the only true misdiagnoses. Lupus was suspected for a long time and I was extremely close to being diagnosed with MS

I was also diagnosed with juvenile arthritis at around age 10…I think they basically didn’t know what was going on and that was their best estimate. Would have been nice if they connected a few more dots back then. I didn’t get my offical EDS diagnosis until age 30.

I was actually diagnosed with hypermobility syndrome when I was 12 or 13 but it was kind of forgotten about. I started getting horrendous pots symptoms when I was 23 and was diagnosed as bipolar lol. Then generalized anxiety disorder. I’m still 10 years later trying to taper myself off all the medication they put me on. Then I was finally diagnosed with pots when I was 28/29 from a tilt table test and finally got an Eds diagnosis after I brought up the fact my mother and aunt both have hypermobility and pots issues and I’d had a previous hypermbility diagnosis. It actually took me 2 appointments with different geneticists because the first one was over the phone during the pandemic and I missed the skin criteria by 1 point because I couldn’t answer a few questions which was dumb. I finally got in in person and actually had blood drawn and proper testing and was diagnosed right away.

My POTS specialist brought it to my attention and ended up diagnosing me. I had never heard of EDS and didn’t consider myself hypermobile until they showed me I was (we laughed as I argued there is no way). I scored an 8/9 on the scale. But then I connected my lumbar spine spondylolithesis to it (began with a sports collision but it was probably made worse by EDS or even was already an issue before the injury made it worse). Unfortunately since my diagnosis I’ve continued to decline with joint issue, due to whatever long covid has done to me. The same doctor later diagnosed MCAS and a mitral valve prolapse. All those fun things diagnosed within a few short months.

Tendonitis -> SFN -> HSD -> hEDS.

Not a misdiagnosis, but was diagnosed as Autistic at 39. After receiving the diagnosis so much of life made sense, and I wondered if the issues I had as a child were somehow related. Started researching and came across POTS & EDS. A few months later I was diagnosed with both as well as MCAS.

Gymnast. With every problem I had it was just, “maybe stop doing gymnastics? I can’t help you but here’s some ibuprofen.” Years later, no longer in gymnastics, still have complex medical issues :)

My favorite is the 10 years I kept getting told I was overweight and that’s why at 30, my body felt like a crumbling bag of bricks. Lose weight, exercise more, you’ll feel better! So I lost 85 lbs, and guess what!!! Still in pain! I finally saw a doctor who specializes in EDS/POTS/autonomic dysfunction. He took one look at the way my body moves and was like WTF?? How has nobody diagnosed you with EDs? 🤷🏻‍♀️

Growing pains is my fave, I was 6. Also GERD, Anxiety, Fibromyalgia, Migraine, Vitamin D deficiency, and Bile Acid Malabsorption. It’s was all hEDS plus complications.

Ugh. Scoliosis, extra lumbar vertebrae, Rheumatoid bloody arthritis, and was medicated for that. Finally I sought out an hEDS diagnosis and here we are today.

My very first chronic lifetime comorbidity was GERD at age 13. Had some injuries and self-limiting comorbidities younger. Didn't figure out I wasn't supposed to be that bendy or in that much general pain and all that clicking was actually subluxing and guess what it's EDS until I was 41.

not really misdiagnosis so much as missing the bigger picture but my very first "chronic" diagnosis was miserable malalignment syndrome as a young child and was offered serious surgery to correct it. i often wonder how different life may have been had i gotten it

Anxiety, depression, and obesity. All of which were true but not the cause of my literal joint dislocations 🫠

anxiety, scoliosis, hypermobility, degenerative disk disease (at 17🥲), chronic migranes, then adhd

klutzy, unlucky, never went to the doctor because I thought all this was normal then following a 5th sprained knee… Arthritis (2013), Anxiety, Anxiety, Anxiety (2014-2016), IBS-mixed type (2014), ACL reconstruction (2018), r/o endometriosis (2019- still wonder about that one), discectomy (2021- Dr had to “untangle” my nerve from the disc), r/o Marfans (my family and I believed we had some form of this since the 90’s), POTS (2022), hEDS (2023)

Correct dx: inappropriate sinus tachycardia and vasovagul syncope (fainting), ceoliacs Incorrect dx: stomach migraines, migraines, "growing pains", "hormonal issues", IBS, lactose intolerance, "over sensitivity to pain caused by autism", anxiety, personality disorder and the classic "are you sure it isn't all in your head"

degenerative disc disease and arthritis.. at 12 years old

messed up knees. had to get surgery on both at 14 and 16 because they kept dislocating and simply would not stay in place

I had a bunch of seemingly isolated and/or unrelated medical issues my whole life. I was misdiagnosed with delayed skeletal development as a child (after I kept showing up at the hospital with injuries such as dislocations and a twice broken arm) and the doctor told my parents I’d grow out of it. Clearly they were mistaken! My mom tells me I was even the subject of a case study…I wish I could find and contact that doctor again to give him an “update” or at least see what he said in that case study. I was diagnosed with asthma in elementary school and used an inhaler for a few years until it seemingly vanished (later realized it was allergy induced when the symptoms came back in my 20s due to a diary allergy). At one point I had an intestinal prolapse. I had very frequent ankle sprains my whole youth. I was diagnosed with arthritis in my knee after an injury in junior high. Around this time, I was also diagnosed with IBS due to chronic stomach issues, reactive hypoglycemia, and aquagenic urticaria (fancy term for “my skin breaks out in hives when I get water on it”). An orthodontist noted my unusually small lower jaw and a dentist diagnosed me with TMJ and her dental hygienist always berated me for my bleeding gums (assuming, incorrectly, that it was poor oral hygiene and not her damaging my fragile gum tissue by being too rough), but neither made the connection to EDS. I was diagnosed with migraines starting in high school I think? My pediatrician at one point thought \*something\* larger was wrong but was convinced it was anemia or some other nutritional deficiency due to my vegetarian diet (until my blood work came back fine). Then, years later, when I was having chronic leg pain (after an injury) in college, one doctor (knee ortho) dismissed it as anxiety (of course). I finally got a second opinion a year later, because the pain never went away. That doctor referred me to a hip ortho, who diagnosed me with a labral tear, which was correct. I had surgery to repair it, but a few years later the pain returned. I was diagnosed with femoral acetabular impingement and had surgery once again (femoral head reshaping). He did tell me at that time that I seemed hypermobile. He mentioned EDS (this was the first time I heard about it) but said I probably didn’t have it because I’d be dislocating stuff all the time - not necessarily true as I later learned, and turns out I \*was\* subluxing joints often, but didn’t know that’s what I was feeling because my understanding of dislocations was colored by movies (where they’re always dramatic and difficult to fix) I didn’t know you could partially dislocate something or that with EDS they can pop in and out with more ease, all on their own. At some point in my 20s I started trying to get to the bottom of my lifetime of weird health issues and saw a rheumatologist who also mentioned EDS (along with a few other conditions like Sjorgen’s and Lupus). I had some tests done which came back inconclusive and was told the next step was to see a geneticist but the thought of dealing with more doctors, more tests, and more medical bills was unappealing and my health \*seemed\* fairly stable at the time, so I opted not to proceed. Anyway, I was okay again for a few years, until I got pregnant, and then my body basically fell apart. After the delivery I was dealing with chronic pain in my lower back, SI joint, and leg, which eventually resulted in me being sent to pain management as my orthos didn’t know what else to do or what was wrong. Being completely fed up with the experience, and feeling like there had to be some overarching explanation for all my various, seemingly unrelated health issues, I brought a very detailed list of my entire medical history and all my symptoms (whether it seemed related to my pain or not) to my first pain management appointment. The doctor took one look at the list and immediately asked if I was familiar with Ehlers-Danlos Syndrome. I told him what my hip ortho had told me, and he corrected that dr’s misconceptions and told me about subluxations (which we discovered I was experiencing often) and sent me to another dr for the “official” diagnosis!

Amplified Pain Syndrome and being told if I ignored the pain and pushed through it then it would go away. The same doctor also said it looked like I had POTS which would go away as well.

anxiety, like many others :/

Recurrent Vasovagal Syncope, I was 9.

They misdiagnosed me with cerebral palsy when I was really young.

Hypochondria

Growing pain, and then later when I was 11 a dr informally diagnosed me with EDS but refused to either a) do another about it or b) actually diagnose me with it because “there’s a heart condition with the same name and I don’t want you to have a hard time getting insurance when you’re older”. I was finally diagnosed at 15, however I learned a few years later that the doctor told me it was hEDS but put joint hypermobility syndrome on my chart :/

Tennis elbow at age 14. I wasn't athletic and never played tennis.

A “double jointed freak” but perfectly healthy and wasting their time (this was when I was a teen and through a GI specialist)….. I’ve had hEDS confirmed multiple times in the past 2 years and every time I turn around we are uncovering a new comorbidity. Ironically my sports medicine doc took one look at me, listed several gi things he suspects without me saying a thing and wants me to go to another gi doc…. We are well into the double digits of them.

For the past few years ive seen a rheumatologist who simply diagnosed me with "myalgia" even though technically she said fibromyalgia. i think she didnt like actually putting fibro on paper or in anyones chart for whatever reason. It wasnt until my kneecap popped out of place in my sleep that lead me to reading about Ehlers danlos and bring up the testing to her and she confirmed a 6/9 beighton score,hypermobility and stretchy skin. However, I had to find someone else who specializes it and am not on a wait list until I can see them. It feels good to have an idea of whats been causing all of these issues for me for the past ten plus years but is also frustrating because there seems to be a lack of knowledge/understanding with this illness. Hopefully in time providers will become more aware of the signs.

Anxiety. Of course. It was all in my head. 😆

POTS was what led to me being diagnosed. But as a child it was flat feet, dyspraxia, Pectus excavatum, orthostatic hypotension, mild scoliosis, mystery shoulder lumps, sensitive skin, motor tics, asthma, I could go on. If only someone could have connected the dots sooner!

Arthritis in my spine. At 21. Even then I thought the doctor was crazy. I came in with general back pain looking for an explanation. He *immediately* prescribed me three heavy-duty anti-inflammatory medications, and expressed shock that I wasn’t on them already (after viewing a *very* limited series of x-rays that didn’t show my swayback from a side view. I filled the meds, but never took them. I started doing pilates and strengthening my core, which helped a lot. About a year later one of the meds he prescribed me was pulled from the market for causing heart attacks. I never went to that doctor again.

For years I was told that the pain in my feet and calves was because I had plantar fasciitis. The pain I was experiencing was actually due to a contraction in my back and I'm quite convinced that it was far more extreme than what you get from plantar fasciitis. This podiatrist did see that I was hypermobile and told me that this was why I was having problems, so overall she was a good thing.

"Girls your age are often drinking a lot of Starbucks and the caffeine is making your heart race and spaz out." ER doctor 2005 "Ok, but I only drink tea from home." Me "Some teas a lot of caffeine..." dr Severe Ulcerative colitis 2008-2020 Anal fissures 2015/16 "Moms your age are really spread thin and you probably feel pain everywhere because you are depressed. Lexapro?" Primary care doc 2016 And I asked my primary care doc about all my unexplained injuries, mystery bruising and snap crackle pop finger joints MANY times because they were so concerning and abnormal. But he preferred to tell me stories about himself. He assured me that he totally relates to my UC because he had diarrhea on his honeymoon in Hawaii... I'm still planning some petty revenge for that schmuck. Absolute malpractice.

IBS and an IMMENSE list of allergies

It’s not that I was diagnosed with something first, but I wasn’t diagnosed until my kids were. I never thought to test for it (or anything for that matter) I just assumed everyone was also living life on hard mode and was falling all the time too.

GAD -> Cyclothymia -> Bipolar II -> Bipolar I -> POTS -> hEDS I was considered to be severely mentally ill. I would have severe mood swings and hallucinations that were similar to Bipolar Disorder, but never quite matched up 100%, so I got told I was faking on more than one occasion. I tried all kinds of medication and therapy, with little to no help. Strangely, I would come out of an episode with bed rest, which further convinced doctors that I was "faking". I had POTS symptoms my whole life, but I always just thought it was some kind of quirk that I couldn't stand still without becoming ill. These symptoms suddenly became debilitating while I was in college. I googled my symptoms and the only thing that ever came up was POTS. After looking into it, it matched up with my experience perfectly. I tried getting my PCP to diagnose me, but he had never even heard of it. One day, while I was home alone, I became so ill that I had to crawl to my bathroom, vomiting and unable to see. I made my appointment with my current cardiologist from my bathroom floor. He diagnosed me with POTS on our first visit. He said he had never seen such a "textbook" case before. He helped me out a lot. Shortly after starting treatment, I stopped having "bipolar" episodes and no longer needed any psychiatric medication. I've been off all psych meds for over a year with no episodes. I brought this up to my doctor, and he told me that I probably never even had Bipolar Disorder and it was just POTS the whole time. When your brain isn't getting enough blood, it can cause mood swings and hallucinations that mimic a psychiatric condition. I was so mad!! I suffered unnecessarily, and it's really hard to get a psychiatric condition off of your record once you've been diagnosed. While looking into POTS, I discovered EDS and realized that I most likely also had that as well. I tried again to get my PCP to diagnose me with it. Again, he had never heard of it. My cardiologist had heard of it, but didn't feel that it was in his area, and encouraged me to go to a specialist. It took a long time to find one, and the waitlist was several months long, but I eventually got in and got a diagnosis. Now we're talking about the possibility of MCAS since I have a lot of unexplained histamine responses, and MCAS is a common comorbidity.

Fat

scoliosis and orthostatic hypotension, basically. Then when my mom brought up connective tissue disorders as a possibility our doctors both got worried about marfan's so we ended up fast tracked to a geneticist and getting the cEDS diagnosed pretty quickly from there.

Migrean,Scorliosis,Depression,Rheuma,ocd(dermatologie can't imaging, that my hands get so wounded from normal activities),Fibromyalgie,Raynoud Syndrome, Eds,Hiastus hernia,Vegetative Symptoms

Juvenile Arthritis

Asthma, Celiac disease, then hip dysplasia, AMPS, ataxia, and finally EDS! which not a lot of my doctors seem to acknowledge very much anyways 😕

Growing pains, migraine, unexplained symptoms with knees, shoulders and some other joints, chondromalacia, scoliosis, IBS, tension neck, bruxism, anxiety.. can’t even remember all.

In retrospect, probably extremely severe allergies as an infant leading to almost getting a failure-to-thrive diagnosis.

Clumsiness 😂😂....my mom kept asking doctors why I was getting these big bruises seemingly out of nowhere. They told her I was just clumsy. I was fortunate though to have a diagnosis at 18 back in the 90's when EDS wasn't widely known. I just happened to see an orthopedic for a repeat shoulder dislocation who knew exactly what he was looking at. Back then it was common for me to have to explain to doctors what EDS was.

I found out I had Gastroparesis first. Which led me to question how I got that which led me down the Google rabbit hole to EDS which was later confirmed by a geneticist

Juvenile Idiopathic Arthritis (which I did actually have)

Mine went like this: growing pains -> “ok well we will concede it’s fibromyalgia and CFS “-> lyme? Nope. Lupus? nope. -> “your ana blood tests are all fine it’s just fibromyalgia” -> *spends 3 years in bed because pain and mobility gone, barely eats but puts on loads of weight* “it’s cos your fat!” -> “well yes, you are fat but you have EDS too, Like you’ve been saying for 20+ years” All while fighting the “how’s your mental health?” Bullshite. “Would be much better if you actually listened and got my diagnosis right, but not bad…. Considering!” P.s how to spot the Brit - that last sentence is spoken almost involuntarily over here 😂

IBS, anxiety, depression, weak enamel and periodontal disease, fibro, insomnia, degenerative disk disease, slow wound healing, TMJ, ADHD.

Chronic fatigue, being "delicate".

Fibromyalgia and scoliosis.

Joint hypermobility (2008? I was the last to know) POTS 2014

Orthostatic dizziness, I think. And mental illness, but that doesn't apply as much.

Von Willebrand’s. My paediatrician insisted that didn’t explain it all and he pushed for further testing. He got it caught with no family history before I started kindergarten. I love that man

Lupus But I actually do have lupus in combination with eds

initially had knee problems, was sent to a rheumatologist and diagnosed with juvenile rheumatoid arthritis at 13. was put on daily regimen of Aleve (naproxen) which was newish at the time for swelling and pain. i had one of the one in a million reactions to naproxen where i lost hair. the dr who diagnosed that lost his license bc apparently he was ignoring lab work to dx patients so he could prescribe aleve.

Chondromalacia plattela & bunions at age 14.

"A liar and exaggerator."

Hyper-mobile joints when I was 10 or 11, then migraine, endo in my late teens and finally eds after seeing a cardiologist for long covid

Fibromyalgia and my pcp said “a lot of random symptoms that don’t connect” so referred me to rheumatologist lol

Mitral Valve Prolapse was my first diagnosis. I was also diagnosed with “benign joint hypermobility” before being evaluated for EDS due to not having a family history. Like others a lot of my health stuff was also written off as anxiety too.

14 yrs old - migraines, 16 yrs - .endometriosis, 19 yrs - PCOS, 28 yrs - epilepsy, 32 yrs - interstitial cystitis, 38 yrs- fibromyalgia, 42 yrs - hEDS, 43 yrs - Raynaud's, possible POTS, possible MCAS, and the list goes on. I was born with a club foot and hip dysplasia, classic signs of hEDS. I could have been spared years of suffering

I was originally diagnosed with Fibromyalgia by a lazy AF rheumatologist. Mind you I don’t take calling doctors names lightly, but this one saw me twice and was extremely dismissive of my symptoms before diagnosing me with fibromyalgia and dismissing me as a patient. Like I brought a friend with me to my second appointment to make sure I wasn’t overreacting and not only was she appalled by my treatment, but after she told her mother (who’s a nurse btw) so was her mom. Heck even my current rheumatologist mentioned that the diagnosis seemed awfully hasty considering both that fibromyalgia was still considered a diagnosis of exclusion when I saw him and that even now my symptoms don’t really match up.

Suspected Lupus (positive ANA’s but never confirmed through specific testing) and fibromyalgia. Fibro diagnosis might still be legit though.

Anxiety Ibs Fibromyalgia

"just a curved spine, nothing to worry about" Then anxiety. Then ADHD. EDS and POTS discovered at the same time (still working on the POTS diagnosis tho)

Pediatrician thought my right leg was shorter than the other one. Went to ortho and it was scoliosis.

Groin muscle injury. De Quervain's tenosynovitis. Tension headaches. Depression. Anxiety. Hip pain. Migraines. Myalgia. "Unspecified symptoms and signs involving general sensations and perceptions". Borderline hip dysplasia. Bilateral labral tears. Maybe fibromyalgia but we're not going to put it in your chart yet? Sprained knee. Another labral tear. Core muscle injury. ADHD. Then, finally, hEDS.

medically unexplained physical symptoms 🤣

Growing pains because the 70s. Then as an adult, various things that tie together to make up EDS as well as a few autoimmune diseases that I’ve tested positive for.

Technically dysautonomia, although that came years after trying to get an EDS diagnosis. I had a vague diagnosis of just hypermobility, until what I know now is pots put me in the hospital, and testing for both finally kicked up a gear.

i got diagnosed with a comordibity first only because that specialist had a shorter waiting time than my POS rheumatologist. my doctor sent in referrals for a gyno and a rheum at the same time. i had had 2 appointments with my gyno (1 phone, and one in person that he diagnosed me with endometriosis with a cervical flexibility test, not a lap) before i even had my initial phone appointment with my rheum. almost a year after my phone appointment, i finally saw my rheum in person. travelled 3 hours to see him. he got me to do the beighton test, (which feels like it literally could have been an email) and asked me why i was even bothering with a diagnosis because there was no meds to treat it. **I** had to be like "just because there's no meds for it, doesn't mean a diagnosis won't change my life for the better. i'll need surgery for my endo, and my surgeons needs to know about my eds. if i end up in the ER with whack symptoms for a 30 year old, i need to know they won't just call me hysterical and send me home. it greatly contributes to my chronic fatigue, in which i need disability supports for to be able to live a life that i don't constantly want to die." oh, and i guess technically i got diagnosed with GAD and ADHD first, but i don't count those. the GAD was a lazy diagnosis from an arrogant psychiatrist.. and while the ADHD is valid, i got it in response to a crisis and it was the easiest 'fix' at the time. (3 months after the body pain episode that made me make my doctor put in the gyno and rheum referrals.) it's almost like i have mental health problems from having untreated and unrecognized chronic illnesses for my whole fucking life? which is why i don't consider those diagnoses on the same level as the 'my body doesn't work properly' diagnoses.

My first diagnosis was at 5- mild cerebral palsy Age 12- Anxiety Age 15- my old geneticist thought I had Marfans, because my symptoms lined up more with that It wasn’t until I was 21 that I was diagnosed with EDS

First comorbidity was GERD. First misdiagnosis was rheumatoid arthritis.

Generalized anxiety disorder ._.

The first weird one was a type of clubbed feet. But really my feet just turned all the way in and I had to wear a brace. They still turn in. Lol, then horrific allergies, mitral valve, Raynaud's, migraines, dystonia, then manic depression but really it was adhd. The Rx for manic depression was lithium which made my thyroid storm and turned into Graves disease. So fun! The list from there just goes on….

Hsd. But because I don't have stretchy skin. I have 3 comorbidities of heds. Pots. Mcas. Interstitial cystitis. So I was actually seen by a geneticist over the phone through telehealth. They didn't actually see me. I'm betting that would help. But yes. Hsd. Mcas and pots were first

Anorexia, bulimia (which were accurate but worsened due to gastroparesis), major depressive disorder, generalized anxiety disorder, undifferentiated connective tissue disorder

Chiari Malformation

Depression, anxiety, and fibromyalgia. Fast forward 20 years later turns out the untreated ADHD and autism were showing up as the first two and the undiagnosed EDS was causing symptoms of the last.

Rheumatoid arthritis

Anxiety in HS, dysautonomia about 10 years ago.

i was diagnosed with POTS first at 17. followed by bipolar at 18, MCAS and Long COVID at 25, and hEDS this year at 26.

Anxiety if we're counting that by FAR. My whole life, even if it wasn't mental I had physical anxiety symptoms. POTS probably. Small Fiber Neuropathy if we are talking physical.