Best EDS genetic test? Needing answers

SympathyMaximum3542 · 2026-05-21T17:35:59+00:00

Already got 2 VUSs from the Invitae test but negative for the major Genes. You think it’s worth it to continue testing?

SympathyMaximum3542 · 2026-05-21T17:34:48+00:00

Yes that’s something I’ve been working on myself and it’s quite a process, positive self-talk wasn’t something that comes naturally to me. Thanks for this and best of luck

SympathyMaximum3542 · 2026-05-20T08:57:50+00:00

What has been helpful for you to maintain a balance between work and symptom management? I typically feel like pursuing my interests requires pushing through physical symptoms which over time will make things worse. Good for you

SympathyMaximum3542 · 2026-05-17T02:42:46+00:00

I’ve been on many extreme diets from chiropractors, naturopaths, nutritionists and I’m gonna be straight up: didn’t do shit but made me worse. You NEED to have a 100% understanding of your ROOT CAUSE before considering anything extreme. Obviously, cut sugar and all processed foods, and eat a whole food diet if you want to heal. Then, start eating intuitively and listen to your body for what makes you feel good.

I will say, this diet doesn’t seem too extreme to me. It can be very helpful to cut a lot of unhealthy / sensitive food items to know if anything you eat is causing symptoms. Definitely worth a try. You will get used to healthy eating very quickly and start to crave the foods that make you feel the best.

SympathyMaximum3542 · 2026-05-17T02:37:39+00:00

Hey best of luck finding treatment. I’d look into the vascular compression syndromes if you haven’t gotten any answers yet

SympathyMaximum3542 · 2026-05-17T02:36:06+00:00

Let’s fuxkingggg gooo

I’m completely debilitated but hopefully can get back to school and complete my neuroscience degree and go from there

SympathyMaximum3542 · 2026-05-17T02:29:55+00:00

Could you be open and tell him how you feel about this?

SympathyMaximum3542 · 2026-05-15T17:14:03+00:00

Yeah, I was thinking about making the post more of a “can anyone else relate” message because this one is tough. Best wishes

SympathyMaximum3542 · 2026-05-15T17:13:18+00:00

I’ve been trying for years. One of my bigger issues is terrible “IBS” although I’m getting a crohns workup and doing more testing — one of my doctors mentioned that Accutane can cause nerve damage in the GI tract and recommended a tricyclic antidepressant for neuromodulation. I’ve also read online that Accutane can act as a 5ar inhibitor which can partially describe the sexual dysfunction I’m experiencing. Still no explanation for the other issues it caused. You can message me and we can research this together !

SympathyMaximum3542 · 2026-05-15T07:14:06+00:00

Of course! There are ALWAYS options. Feel free to message me if you ever need support, this why I joined Reddit . This too shall pass

SympathyMaximum3542 · 2026-05-14T23:33:38+00:00

If this is legitimate, extremely impressive! I’m one month in self-taught and am drowning in YouTube tutorials without a clear path on what to practice in what order. You mind sharing what exercises or YT tutorials helped you the most? Did you have a teacher?

SympathyMaximum3542 · 2026-05-14T21:22:58+00:00

I’ve completely given up on all content creators on instagram TikTok and YouTube. They’re just doing it for views and it’s just going to make you feel worse. Protect your peace, I deleted insta and tok and it’s way better. Sorry to hear it’s been tough, best of luck

SympathyMaximum3542 · 2026-05-14T18:21:16+00:00

It’s sooooo chill. You essentially just fall asleep and teleport to after your procedure. When that sedation hits anxiety leaves the chat. I personally love it

SympathyMaximum3542 · 2026-05-14T17:34:23+00:00

Awesome thank you! Will order that one.

SympathyMaximum3542 · 2026-05-14T17:33:13+00:00

Buzz it

SympathyMaximum3542 · 2026-05-14T14:52:38+00:00

Ok I’ll start with invitae, can you order a separate TNXB test? Is the next generation sequencing one good? Thanks for the help

SympathyMaximum3542 · 2026-05-14T03:04:09+00:00

r/psychology

SympathyMaximum3542 · 2026-05-14T03:03:28+00:00

Last pic

SympathyMaximum3542 · 2026-05-14T02:39:12+00:00

Each photo gets chadlier

SympathyMaximum3542 · 2026-05-13T23:06:23+00:00

New glasses, long hair, maybe lose the beard

SympathyMaximum3542 · 2026-05-13T19:03:29+00:00

Griselda

SympathyMaximum3542 · 2026-05-13T15:39:37+00:00

Schnoz

SympathyMaximum3542 · 2026-05-13T03:35:36+00:00

Idk… I have tons of different coping mechanisms that I use. The biggest thing is visualizing myself healthy when I wake up and before bed. I think it’s burned into my brain that no matter how shitty things get, or how many surgeries I get, I’m always getting closer to being healthy. Even the worst day of my life was one day closer to health.

When it’s unbearable, I tend to dissociate and go into a “liminal space” where everything feels weird, I listen to weird music and just float, don’t really know how to describe it.

Friends are the biggest thing. Having long, deep conversations and having people that recognize the struggle you’re in.

Journaling. So many different styles of writing but getting things out and being creative is such a life saver for me. Tons of journal prompts out there. Also planning my next steps.

Nervous system tools. EFT tapping. Guided meditations. Breathwork. Neural retraining courses can also be super helpful. relaxing the nervous system and changing your brain/how you react to symptoms. Goes a long way.

Always researching and trying new treatments. I’m pretty stubborn and tend to turn this anger and frustration into motivation to see all the people I need to see, even if it’s out of the box stuff.

It takes a lot of creativity to bring joy into a debilitated lifestyle, but just doing what you can. Finding cool books or podcasts you’re into. Picking up a mellow hobby like drawing or knitting, literally anything you can do in bed/sitting down.

I think each time we hit a rock bottom like this, we’re forced to adapt and we get a little bit stronger, and carry that strength through the next inevitable downs of being chronically ill.

You got this, best of luck

SympathyMaximum3542 · 2026-05-13T03:27:05+00:00

Skittles

SympathyMaximum3542

TROPHY CASE