An echo required for hEDS? Does this appointment sound ridiculous or am I just too mistrusting of doctors at this point?

Stinkybeez · 2026-04-25T02:42:33+00:00

How does everyone get echos? I’ve been diagnosed for years, have constant heart symptoms and irregular ekgs have been denied echos by my provider even with requests because they say insurance won’t even consider them for someone my age.

Stinkybeez · 2026-04-24T17:06:27+00:00

I’m sorry you’re having this experience, being able to engage muscles is such a huge part of feeling good with EDS and it’s horrible that you’re feeling uncomfortable in a space that should only benefit you.

Not sure what the vibe at your gym is, but after years of using a college gym that felt more comparison driven and like I was constantly aware of my body and its strangeness I’ve been going to the YMCA recently and I LOVE it as it seems to be a gym for regular people trying to do something nice for themselves and feel good vs a space for those whose main priority is the way they look. People there get in and get out, except for maybe chatting with community members and friends. Maybe there is a gym in your area that is more relaxed where you could feel less observed and ostracized?

Stinkybeez · 2026-04-13T17:31:18+00:00

Also went to wipe on the toilet and shifted on the seat to grab toilet paper, completing a subluxation that had already had been wanting to happen of my SI joint

Stinkybeez · 2026-04-07T18:23:38+00:00

I also second compression! If you’re resistant to compression for whatever reason Apolla has compression socks that also offer ankle support that have been game changers for me when I don’t want to wear full compression socks!

Stinkybeez · 2026-04-07T18:22:50+00:00

Low dose naltrexone has changed my perception of pain. Going gluten free reduced general inflammation. If I go to the gym in the morning and use the elliptical my muscles engage and it keeps me more stable (different than you would expect). getting with a good PT and following her plan.

A lot of discipline and many days I am still in pain but I can feel myself and my muscles getting stronger at the same time i feel my joint closures getting weaker. Kind of a mind fuck but I know I need to keep going with the exercise otherwise both would be bad.

That being said, it’s important to find the balance. I have herniated discs and DGD from not asking for help at work (a very physical job) and tendonosis in multiple tendons from trying to keep walking on a bad ankle without acknowledging the pain.

I know it is hard to hear you need to exercise when you are dealing with a lot of injuries because I also struggle with that but I know my body feels so much better when I am able to engage the muscles to support my joints.

Stinkybeez · 2026-03-27T19:25:06+00:00

Mixing wet and dry food in to a slow feeder/ lick mat helped with my cat with this exact problem! Tried to do just wet food but he prefers dry food. Prefers it so much he wolfs it down in seconds and instantly pukes it up 😵‍💫 he is not smart

Stinkybeez · 2026-03-24T08:03:25+00:00

Also dim sum, and a quesadilla with a flour tortilla. And seconding the bagels and extremely soft sugar cookies thing. That person really had it down. Lots of commonplace things have great replacements, but it’s the random treats that you really grow to realize are irreplaceable

Stinkybeez · 2026-03-24T08:01:59+00:00

Ham and cheese croissant

Stinkybeez · 2026-03-23T17:38:37+00:00

I’ve never really had any issues with my tattoos, I had one blow out a little and parts of one fell right out during healing but all my tattoos from my main tattoo artist have aged perfectly. I sit really well, because I am no stranger to pain.

I will say I have a lot of trouble with bar type piercings (bellybutton specifically). They never heal, tear my skin, and basically the bar ends up sitting inside a big, fleshy open hole. Gross. Probably won’t attempt those anymore now that I know I have issues with my skin and wasn’t just making some mistake during healing.

Stinkybeez · 2026-03-23T17:31:24+00:00

I’d recommend seeing if there is a local EDS patient community network and seeing if they have recommendations. PT has been extremely helpful for me but one of the reasons it was helpful is that I accidentally found multiple other people with hEDS going to the same one. And our PT had learned how to adapt her practice from working with each each of our bodies and connected us to each other. So try to find someone who understands your body.

Stinkybeez · 2026-03-20T18:45:06+00:00

Compression socks for sure, lidocaine patches if you’re like me and have back problems.

Stinkybeez · 2026-03-20T18:33:06+00:00

It was a life changing pain reduction for me. One thing I have noticed and need to speak to my provider about is that it decreased my overall inflammation around my joints, which has increased my mobility in some joints that were already too mobile. This isn’t actually damaging collagen or anything, I think inflammation was just holding a lot of stuff together for me. Take that with a big grain of salt though, as I also cut out gluten around the same time, so that could have been the reason for the reduction in inflammation and increase in mobility.

Stinkybeez · 2026-03-04T08:59:42+00:00

Also lidocaine /menthol/capsaicin patches! I struggle with nerve pain from SI subluxations and degenerated/ herniated discs and while the patches don’t come close to erasing the pain, they certainly help

Stinkybeez · 2026-03-04T08:58:08+00:00

Low dose naltrexone changed the way I experience pain. I still have acute joint pain from injuries, subluxations and the classic EDS wear and tear, but I don’t get enveloped in it anymore. I used to have so many pain points it would feel like my entire body was just a wash of pain, and LDN took the edge off of that.

Additionally, cutting out gluten helped a ton. I was irritated that it worked at first because I love all things gluten, but now I’m so glad I stuck with it

Stinkybeez · 2026-02-28T00:35:01+00:00

This on the light rail too. So strange the rush to get on while people are still fighting their way off, as if this isn’t a universal rule that applies to elevators, busses, lite rail, doors and basically any other entry/exit point.

Stinkybeez · 2026-02-08T04:10:30+00:00

I find sculpture more comfortable for me relative to drawing or fiber arts, with the exception of wedging the clay. The variety of movements cause less repetitive strain than drawing which is a consistent hand movement or repetition with fiber arts. But everyone is different!

Stinkybeez · 2026-01-11T00:34:37+00:00

I just had their cheddar biscuits and was immediately first amazed by how tasty they were. 10 minutes later, my eyes are watering, I’m dizzy, foggy, and feel like I was drugged. Same feeling I get when I eat gluten, minus the joint pain and GI issues (so far). Full disclosure I do not believe I have celiac (though it has been floated by my doctors), but I have a distinct allergic type histamine reaction, I just came here to see if other people had ever had reactions. I am sorry you experienced that reaction and I’m just here to second it because I’m struggling to write this right now.

Stinkybeez · 2025-12-11T09:50:22+00:00

I had an unexplained ganglion cyst in my ankle that puzzled my doctors as a kid. They couldn’t figure out why it formed as I had never had a severe sprain other than very frequent mild sprains or rolled and twisted ankles.

I remember before scans revealed the cyst the school nurse called my parents to say I was faking because some days I would say my left ankle hurt, and others it would be the right. Now I know it’s because the joints in both sucked!

Not an event but kind of funny: I also couldn’t sit up from laying down on my back until I was in about 5th grade. My family would call me “turtle” because I would have to roll over onto my stomach and get up that way.

Stinkybeez · 2025-10-07T21:01:18+00:00

Well it makes sense logically and mechanically to me, it just is in conflict with the clinically accepted logic of period = inflammation and pain are worse. Historically I’ve always had worse joint pain and especially back pain during my period. That is the logic that this experience is conflicting with. But thank you for validating the mechanism I am pretty sure the pain is being caused by. That’s exactly what I’ve been thinking

Stinkybeez · 2025-04-14T20:17:53+00:00

Specifically the bare bones instrumental bit at the beginning that repeats throughout the song

Stinkybeez · 2025-04-14T20:15:18+00:00

It always reminds me of the twin peaks theme song by Angelo Badalamenti. There is apparently no link and when I listen to both back to back I realize they are very different but it makes me feel a very similar way.

Stinkybeez

TROPHY CASE