Progression of Symptoms in hEDS and POTs

does anyone have any experience with hEDS getting progressively worse? I feel like I continue to be in more and more pain/ notice more that I didn't before. or Noticing symptoms of POTs as you get older. I've always had some symptoms of POTs but never considered that I might have it till recently where the symptoms have progressed. It might be that since I was diagnosed/ getting treatment, I finally have noticed and can put language to things. It also could be that I genuinely have gotten worse. Or Both. hEDSs and POTs can get worse with time right?

Your answer

SarahRina

2y ago

Mine got way worse before it started getting better. I do lots of physical therapy exercises specially for skeletal muscles so my joints don’t dislocate as easily. I found that super helpful!

Ophelia01

2y ago

Both have gotten worse over the last 5ish years for me.

UnluckyUnicorn

2y ago

Both have definitely worsened for me over time. Especially without proper treatment. Even with proper treatment and doing everything right you’ll still have flares. There’s also this cycle of the more you pay attention to your pain the worse it gets and the worse it gets the more you pay attention to it. Distracting myself is a helpful break from that. On one hand, I’m glad my symptoms progressed because that’s what it took for doctors to finally diagnosis me but also it’s an exhausting daily battle. Best wishes on your journey!

floralfailure

2y ago

all the specialists i see tell me that my POTs should go away as i get older, but personally it’s gotten worse over time. so i definitely think it’s not always just a “childhood disorder” like they explain it to be.

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