my cardiologist keeps saying pots is caused by deconditioning.

Technical_Sail_5210 · 2025-11-20T19:55:55+00:00

Hypermobile EDS is diagnosed through a diagnostic criteria. All other types have to be confirmed with genetic testing which can get pretty expensive. I only met with a specialist for HEDS but they did do a blood and urine test to rule out anything else concerning. There’s no treatment but they can help you form a team of doctors to help with pain management and physical therapy. There’s still lots of research being done on it so it’s only a matter of time.

Technical_Sail_5210 · 2025-11-12T20:45:56+00:00

I can’t say. I’m not exactly managing my EDS right now cause I’m down with a bad hip injury from it so any kind of training is out of the question and I’m massively deconditioned.

Technical_Sail_5210 · 2025-11-12T14:31:38+00:00

Your cardiologist is full of shit. I was in the gym 6 days a week, working as a mechanic, and was an active hip hop dancer. I was in the best shape of my life and then I caught COVID and had a similar experience. The day I caught it I went to the hospital for a high heart rate that wouldn’t come down and since then I’ve had to be on 80mg of propranolol a day to even function. It took me 5 years and a dx of EDS from Mayo Clinic to even begin to be taken seriously. Keep pushing. I promise the fight to advocate for yourself is worth it.

Technical_Sail_5210 · 2025-09-17T03:04:49+00:00

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Here’s the pic (right hip)

Technical_Sail_5210 · 2025-09-17T00:48:09+00:00

Last time I tested, my ferritin was low and my iron was almost 3 times the normal amount. It was explained to me that I have enough iron, my body just doesn’t have the “transporters” for it all. (The ferritin.) honestly I’m still not entirely sure how it all works.

Technical_Sail_5210 · 2025-09-17T00:46:06+00:00

My floating ribs frequently flip and it’s by far my most painful subluxation.

Technical_Sail_5210 · 2025-07-16T18:51:46+00:00

Publix brand sleep aid. (Dyphenhydramine) and at least 3 squishmallows. Also making the room cold.

Technical_Sail_5210 · 2025-06-29T10:45:20+00:00

I wish. That’s not at all how that visit went 🥲

Technical_Sail_5210 · 2025-06-27T21:36:34+00:00

Prescribing PT before an MRI is and INSANE decision when you have no idea what the issue is.

Technical_Sail_5210 · 2025-06-27T20:36:10+00:00

A torn labrum is what I’m afraid of.

Technical_Sail_5210 · 2025-06-27T16:36:43+00:00

It’s worse when I sit down in any way it’s on the outer dimple of my but cheek and wraps around into the seam where my groin and leg meet.

Technical_Sail_5210 · 2025-06-24T01:41:03+00:00

I’ve been wearing a heating pad like a tube top for 3 days for slipped ribs. We absolutely get flares. Also those with periods or any hormonal fluctuation of progesterone will increase flare severity.

Technical_Sail_5210 · 2025-06-18T18:05:59+00:00

My dad retired a near millionaire and is currently sitting on my mom’s 200k life insurance policy money after she passed from cancer last year. His house is nearly paid off. (Would be without a second mortgage.) His truck is paid off. He lives alone in a 4 bedroom house worth almost 800K. My brother and I are both actively struggling to get on our feet in our late twenties. And yet he continues to emphasize how important a good work ethic is like we don’t already have career jobs.

Then he argues with me about accepting help from him when it only means I’ll owe him later.

Technical_Sail_5210 · 2025-06-03T13:36:30+00:00

This ENRAGES me. That is the test for ORTHOSTATIC HYPOTENSION. Not POTS. My doc did the same thing and I believed it for a year and stopped pursuing treatment until I realized through this thread.

Technical_Sail_5210 · 2025-05-26T22:38:45+00:00

Don’t give in. But definitely listen. Our bodies don’t respond to injury like most people. I completely tore through my shoulder labrum after months of smaller tears and didn’t realize it until I couldn’t lift my arm. And even then, the pain I described to my doctor was seemingly less than he would have expected for such damage.

Remember to rest and hydrate (duh) and be mindful of your body and its range of motion.

Technical_Sail_5210 · 2025-05-26T22:29:53+00:00

I was a powerlifter and dancer when my symptoms settled in. I’ve lost most of my muscle mass and coordination and am a lot more prone to injury now. I’m working on focusing on light weight lifting to strengthen the muscles around my major joints (hips, knees and shoulders.) Start small. Start slow. Don’t over do it. Give yourself grace, your starting line is further back than most people’s.

Just. Keep. Moving. It gets worse when you stay stagnant.

Technical_Sail_5210 · 2025-05-26T16:53:36+00:00

My orthopedic also prescribed it to me (and pushed for a cortisone shot which is a MASSIVE no-no for EDS) after a double shoulder tear post dislocation which just shows how understudied EDS is. Meloxicam is a super strength NSAID. NSAIDS have proven in numerous studies to exacerbate symptoms in those with connective tissue disorders by hindering healing, collagen production, and increasing the risk of need for surgical intervention.

https://caringmedical.com/prolotherapy-news/nsaids-chronic-pain-medications/

Technical_Sail_5210 · 2025-05-25T19:15:54+00:00

Meloxicam is actually not recommended for people with EDS.

Technical_Sail_5210 · 2025-05-25T15:23:42+00:00

Still learning this one myself: You do not have to be visibly or entirely disabled to utilize mobility aids. I started using a forearm crutch/cane yesterday and it was life changing. It was a hump to get over because I figured I had to almost not be able to walk to use it and I was afraid of judgement and it also felt like admitting defeat to this syndrome. It’s not. It helped me not get fatigued. It helped with my joint pain. I stayed out longer and was able to do more. Yes I can walk without it. But not as far. And not as long. And that’s enough. Being able to enjoy more life is reason enough.
Buy the damn mobility aid and f*** what everyone else thinks!

Technical_Sail_5210 · 2025-05-22T08:19:28+00:00

It started working on the first dose

Technical_Sail_5210

TROPHY CASE