If you’re on a progesterone-based birth control, it might be exacerbating joint pain/increasing dislocation frequency. I only had issues with my wrists, elbows, jaw, and right knee and ankle before BC and while on it I started having back, shoulder, hip, and rib pain along with left kneecap dislocations. Took me two years to put it together and I feel like my ribs aren’t going as far out, my left kneecap has stayed in place, and I’m not rolling my ankles as much.

16

Low dose naltrexone (I talk about it on here every chance I get because it changed my life so much) if you can get someone to prescribe it. It has kinda passively helped my POTS in a smooth way because I can miss a dose or a few without negative effects, though that’s not everyone’s experience. It mostly eliminated some pain like my low back pain but left more acute pain like from overuse and I’ve only had one or two significant subluxations since starting it.

13

Compression garments. Helps keep blood from pooling and helps stabilize my joints

11

Out of ordinary af, but my blood pressure is a lot better when I sing regularly. I know singing is good for oxygenation and promoting lung capacity and I've seen that choirs heartbeats will sync up so I guess it makes sense. I rested too much and that caused joint problems, but my dr suggested pilates and that has helped a lot

4

I keep those little salt packets from the movies in my backpack and take them like shots. Compression socks/shorts are life savers. Shower stool or sitting on the flop of the shower (as well as slightly colder showers). KT tape on any joints that hurt (my knees are a big one!) Staying inside if possible (I don’t know why but the outdoors makes my POTS worse, probably bc of temperature regulation and being upright)

3

compression garments are great for both. sometimes blood pools in the abdomen too so making sure your recovery position is very angled helps. i also drink coffee to keep my blood pressure up but it's not a great solution.

3

PT!! Getting a pt knowledgable in Eds can be a complete game changer. They can recommend devices too to make sure you’re not using them wrong and making things worst. My pt got me my custom chair, and that helped a lot. I’m now entirely ambulatory and don’t use it but I was dependent on it for a year and a half and knowing I have it for flares is really helpful. Swimming if you have access to a pool is a great low impact excersize. I have orthotic shoes to help with my flat feet that I just got.

1

i second low dose naltrexone. and also getting your ferritin up above 125

1