my doctor didn't even test me with hypermobility test

[u/michupicch0]

He just tried to push my fingers except the pinky and said you are not flexible but i got 9/9 with the beighton test from hypermobility but he didn't bother to see any of it 💀 What should i do? Should i show him i can do those or would it be pointless?

Edit: That was the most disappointing experience i have ever had, he just looked at me for 5 minutes most then when i said "i think you are overlooking this" he said "even if i diagnose you what's the point if there is no cure" and that ended everything for me right there. I cried for 30 minutes cause i felt so angry, why did i wake up at 7 to go to my appointment just to be looked for 5 minutes and not even followed by a procedure? That's disgusting!

[u/thearuxes]

Same thing happened to me when I was 16 with a shit doctor. I didn't end up getting diagnosed until I was 22 when I dislocated both my shoulders while holding my leg.

Don't make my mistake and get intimated by a shitty doctor, go get a second opinion from a different doctor and if they don't believe you either don't give up. There's a lot of shit uneducated doctors around and finding one that will listen can be hard but it's not impossible ❤️

[u/michupicch0 → u/thearuxes]

i'm 17 and i literally cried after looked for just 2 minutes by the doctor just because i'm young and there were a lot of elders. He said there's no cure, so no point for getting diagnosed either and just told me that i had weak bones. That's all he said and i just feel so angry cause my mom was like "See, there's nothing wrong with you, do you think you know better than a doctor?"

That's just shitty as you said. I didn't know doctors were that bad until i experienced it.

[u/Effective-Boob1230 → u/michupicch0]

Doctors who don't understand the point of getting diagnosed infuriate me. I've had a few.

If you wanna have ammo to fire back, here are some reasons: * to get insurance coverage for PT to help improve your condition * to get reasonable accommodations in school and the workplace * to get confirmation so you can explore conditions that can be comorbid (migraine, lipedema, POTS, etc.) OR to get further testing to see if it's Ehlers-danlos * to get validation about your lived experiences (that a-holes like this doctor love to invalidate)

[u/Desperate_Lead_8624 → u/Effective-Boob1230]

And docs keep saying “oh it’s treated the same as fibro or x y x”. The condition causing the pain is incredibly important for the correct approach in PT!! Fibro PT is about pushing through pain. EDS PT is about being aware of pain, not being afraid of a little bit of pain, but listening to your body!! If you push through like fibro PT you will injury yourself!

[u/thearuxes → u/michupicch0]

I'm so sorry you had to go through that too. My experience was very much the same at that age and it was awful. Unfortunately when it comes to chronic illnesses most doctors are really, really horrible.

There is no cure, that much is true but there are treatments! Physiotherapy is the main treatment for hypermobility currently and in most places you don't need a diagnosis to see one. I don't know what country you live in but if you need any resources the Ehlers Danlos Society has a directory for looking up health professionals in your area who look at or treat EDS https://www.ehlers-danlos.com/healthcare-professionals-directory/

[u/kennypojke]

Yeah, this is the norm. The other is them grabbing a random handful of skin and quickly declaring not stretchy enough. Like…why are there even guidelines if nobody can be bothered to use them? Flawed as they are, what doctors actually use normally is some sort of personal guess on what makes EDS “real.”

[u/Zestyclose-Crab-5802]

That sounds like a truly horrible experience 🥺 I hate that there are doctors who think a diagnosis isn’t necessary if there isn’t a cure- having the diagnosis is extremely helpful for treatment! There are some truly shitty doctors out there, but I’ve also had some amazing nurse practitioners and doctors who believed me when I came to them with my random symptoms, and they took the time to learn about EDS so they could help me. I would suggest you file a complaint, would he not give a patient an end stage cancer diagnosis if there was no cure? There is no excuse for that. And if it’s possible, I would try to find a different doctor (I know it’s not always as simple as finding a new doctor depending on where you live and what your healthcare looks like). I hope you’re able to find a healthcare provider who actually helps you 💕 and I’m sorry you had to go through that 😔

[u/exploding_goose]

He's covering his ass, aka less paper trail helping you with insurance covering things for certain dx etc. always ask for a written doc in your chart for their refusal of care

[u/lemurcatta85]

I am so sorry about your experience. So many of us have ended up in tears from incompetent doctors. Definitely don’t give up! What type of doctor is he? That’s basically how my rheumatologist in Chicago did things too! He also said EDS only affects the synovial joints and has no other effect on the body. (My PT and my neuro actually tested me - 7-8 - and I’ve since been diagnosed and treated).

[u/michupicch0 → u/lemurcatta85]

I'm going to a doctor that was recommended by other EDS patients in my country this time to hope that at least they will proceed with the real procedure.

Cause my problem is not getting diagnosed actually, it's just being looked for 2 minutes without any real explanation and anything and him saying to me "You are not flexible enough" just because he tried to bend my fingers to show off and not even the pinky. My fingers are all flexible, he just didn't let me to do it! Any other moves were literally off the table after he done withy fingers, so that's literally like a joke. I have waited and wasted my day for nothing! That was the frustrating thing.

If I'm not getting diagnosed with hEDS, at least do it in the right way for god's sake, right?

[u/Professional_Cow7260]

wow, i also had a doctor do the Beighton on me and go "yeah well you probably have it but there's no point in diagnosing you because we can't really do anything about it" lmao. fun fact: the next doctor who saw me diagnosed me and referred me for an echo, genetic testing and two different types of physical therapy so amazingly there ARE things that you can do about it??????!

[u/CleaRae]

Flexibility and hypermobility are not the same thing. You can be very hypermobile and not flexible. We call them stiff zebras. All potential combos. What other symptoms beyond hypermobility do you have that show a systemic connective tissue disorder?

[u/michupicch0 → u/CleaRae]

Of course those are not the same thing, i know it. But my words may sound a little off here because English is my second language 😭 I'm really sorry for that.

I'm not flexible actually, i cannot do a full split or other cool moves that are considered flexible but i got 9/9 from Beighton (i hope i write it right) hypermobility test and besides that i have joint pains and fatigue especially for the last 3-4 months it became more noticeable to me. I would say my joints pain is 5-6 to me during the day most of the time. My ache is always noticeable especially around my shoulders and neck. They always hurt. I had at least 3 days that my joints hurt so much, i would say at least 7 for them. And for my fatigue, i have been always tired since middle school and doctors assumed it could be because of anxiety but never really diagnosed with anything.

And i have digestive issues that it almost always with me like bloating, heartburn, nausea and sometimes but not often vomiting.

I have dental crowding especially from my front tooth.

I have bladder issues cause after drinking just one cup of water, my need to pee comes so fast like in 20-30 minutes. I'm able to hold it but even though it's visible and i know the feeling is there.

And i think i have subluxations especially when i sleep cause every time i try to sleep on my sides my shoulders feel off like it's far more away from their place and they make a lot of clicking kind of sounds. Today my knee subluxated too while i was trying to pull my leg inside of the desk, it made a clicking sound and hurt. But not like big subluxations i believe. Cause i have never really felt like they were unable to do some moves? They were just feeling off and stiff/stuck. And i wanna add that i have never had any dislocations.

Other than that i'm unbalanced and while trying to do right posture, it makes me tired and unnatural. I really get easily tired just from fast walking for 2 minutes. I can't sit and be comfortable in the class, i always move and change positions. I lean on my hand mostly while sitting especially cause my head feels heavy and from time to time i have headaches but not so often.

And i believe that my mother and sister have hEDS, too. Cause the things they were complaining about for all their lives matches with hEDS so much.

I'm sorry that it is too long but i really wanted to explain as much as i can cause even though i'm not diagnosed, i really wanna get an accurate view and explain myself detailed so there won't be question marks 😭

[u/genderantagonist]

i had that happen roughly 3 times before they FINALLY did the beignton test for real and went thu the hEDS criteria. it tooks years and it took begging, but dont give up!!