u/Human-Appointment480

So I’ve been trying to get diagnosed, and I finally had my appointment with my PCP—and she just DISMISSED EVERYTHING I SAID! I brought the diagnostic criteria from the ehlers-danlos society, and she didn’t even look at it, she wouldn’t even unfold the paper. She asked me to do a few “hypermobility tests” that are NOT on the Bieghton scale, and then when I was hypermobile that way she just MOVED ON while I was trying to TELL HER MY SYMPTOMS. I’m pissed. She sent me to get X-rays for my joint pain +inflammatory marker labs—which came back mostly normal of course, and now she won’t help me do anything else. They’re sending me to a physical therapist, who I can hopefully get to actually listen to me.

What am I supposed to do??? Should I try to find a specialist? I don’t know if my insurance will cover it, or if I can even get my good for nothing PCP to refer me. I feel like they’re playing gaslighting-hot-potato with me and I HATE IT. Only person who took me seriously was the nurse who took my vitals and did my intake questions. I asked for a referral to the rheumatologist for a second opinion and she said she “consulted with them” and that there wasn’t any to support sending me there—they keep trying to make it about the joint pain, when what I’ve stated multiple times that what I want is to look into ehlers danlos and try to get a diagnosis. I don’t know what else I can do. They won’t listen to me. I keep ending up with bruises from the labs and nothing else of even remote substance. I made a list of my symptoms, but all my PCP would do is talk over me and do that fucking smile they all do—you know the one.

How do I move forward? Is there something I can ask for a referral to?? Can the PT help me with getting a diagnosis??? I’m lost and I’m not happy with my ‘medical professionals’ right now.

So I’ve been looking into hEDS, and I meet a lot of the criteria (almost all, I was looking through the diagnostic checklist and I have pretty much all the ones I can understand) I think I have it and I’m going to try to get diagnosed—but I keep seeing people with it who have symptoms that are so much more severe than mine, and it’s making me doubt myself. I have near-constant daily joint pain and my joints keep popping in and out, I have stomach problems, random nausea, headaches, I need glasses (I’m not sure that’s necessarily correlated but I’ve heard vision problems and the thing that makes the lights look spiky can be related to hEDS), I randomly get a limp and pretty severe pain from my ankle that I twisted once when I was like 9, on top of a bunch of other things.
But after seeing so many people who need to use wheelchairs and have medical ports and home ivs, and they’re in the hospital all the time, and they have all these medications they need to take—it makes me feel kinda like a fraud. I just ordered a cane to help a bit with my balance, but now I almost feel like it would be sorta appropriating, even though I think it would help me a lot to use it.
I 100% respect and understand that everyone has different mobility aid needs +medical needs, and everyone should be as vocal about their conditions as they want to be and it’s great—but now I feel like I’m… not disabled enough..?

What are your symptoms and how bad are they usually? Is there anyone diagnosed here who has similar symptoms to me? I’m fairly young still, do symptoms worsen over time? I’m going to be doing college and theater and a bunch of other things, is that going to make the symptoms flare up? I did basically nothing outside the house as a kid because I was always exhausted and sickly (still am tbh) and I was homeschooled since pre-k, so did I just dodge flare ups my whole childhood and has my slowly increased daily activities made it worse? Will it keep getting worse the more I do??

Help me—

So I’ve been hypermobile my whole life, have nearly all the symptoms of hEDS (really the only thing off is my skin isn’t stretchy), etc, and i want to get diagnosed. How do I do that though??? Should I talk to my general practitioner?? Can she even do diagnostic things?? Where do they test the Brighton scale at, is it a specialist? I did a few self rating things for the scale and I definitely meet the criteria. My joints end up out of place constantly and I have terrible balance, I fall over all the time, I have joint pain, I have fairly translucent skin (you can see all the veins pretty clearly, even the deep ones), plus all the little things that vary person to person. I’m almost 100% sure I have it. Is there a genetic marker for it? What is the purpose of doing the genetic testing? How do I manage to condition after diagnosis??

Sorry this is kinda all over the place, I’ve just been anxious about all of this and I can’t seem to find the answers I want (I’m neurospicy as hell, so maybe I’m just missing it?? Idk)

Any help appreciated

Days 8-11 were ROUGH and I had a lot of bleeding I almost had to go in to the ER for, but I’m finally freeee!!! It’s so worth it my guys. I still have a bit of soreness, but my scabs are gone and I can mostly eat without pain—it just feels like I have a mild sore throat or really bad allergies. I got a case of the sneezes day 12-13 and lemme tell you, that wasn’t fun, but sneezing doesn’t hurt anymore for the most part. I’m only taking Tylenol or ibuprofen if I need it, and I mostly don’t, unless Ive been talking a lot or something. There is light at the end of the abyss my friends!!! You will be free of your pain and numerous different liquid meds soon!! I know it sounds like BS but it really just gets SO much better once the scabs are gone. Make sure you eat/drink hella cold stuff when they start to come off though—you really do not want bleeding.

I’ll be 2 weeks post-op on Friday, and I’m mostly feeling better with just some slight discomfort in my throat, but I’m worried about trying to go back to eating like regular. I’ve started moving to slightly more substantial foods, but I miss regular food. My scabs are nearly 100% gone, just a few little spots left, and I can pretty much eat warm foods and things like that. How long until I can eat regular food again? I yearn for the chips and salsa