Orthostatic Hypotension

So, after insisting that I did not have joint laxity/instability the first time my physical therapist (who specializes in chronic pain and always screen's for hEDS)- I finally realized that I do meet most of the diagnostic criteria. Some of the issue was me being taught to ignore the constant pain as a child and minimizing my symptoms. My PT and I reviewed the diagnostic criteria that she could check and I'm within 1 point of a diagnosis. She said that means we will definitely address hypermobility in our sessions. Next step is talking to my primary doctor about referral to a geneticist.
Even without the genetic conformation or an official diagnosis, EDS explains so much about my experience of pain, medical complications, mental health, and even dental issues. I know it wasn't all in my head before- but somehow that's so much more real to me now. It's not a defect in my character (which it never was anyway but sermed like because the tests always came back "normal"), it's a physical problem that makes the everyday so much more challenging.
Just so relieved to potentially have so many answers to questions I was afraid to ask. My symptoms haven't changed- but knowing more about why seems to make them a bit easier to manage.
Thanks for reading my ramblings. Looking forward to more information and a deeper understanding of what this condition means for me and how I choose to live my life going forward.
#HypermobilitySyndrome #PTSD #Fibromyalgia #ChronicFatigueSyndrome #PolycysticOvarySyndrome #OrthostaticHypotension #Migraine #longcovid #Dysautonomia

Hi, my name is chronically_cole. I'm here because I have Ehlers-Danlos syndrome, gastroparesis, superior mesenteric artery syndrome, and orthostatic hypotension. I want to find braces that work, meal ideas, and motivation.

#MightyTogether #HypermobilitySyndrome #Gastroparesis

I was recently diagnosed with orthostatic hypotension with labile blood pressure. The cardiologist told me not to stand too long or sit too long. Wear compression socks and increase hydration. Can’t increase salt intake.. can’t take any medication. Cardiologist said I should see a neurologist because he can’t figure out why I have this.. I am 58 years old.. this condition is found in either young or older people. Three weeks later the neurologist office gets in touch and can’t get me in until October! Wow it’s hard to get answers! I had a tilt table test October 2022. Plus I broke my wrist and had surgery.. my OT thinks I have CRPS.
What other tests should I be having? How can I advocate for myself? Do I just sit around and wait?
I’m really frustrated with the medical system..
I think I may have EDS.. but I don’t know..
I know this is a long post so thank you for reading!
Any advice would be welcomed 💚

#Dysautonomia

Hi, my name is Melanie. I'm here because hEDS and POTS suck, but my brain is stronger than my pain! sharing the love. 🫶

#MightyTogether #Fibromyalgia #AutismSpectrumDisorder #PTSD #Migraine #ehlers-DanlosSyndrome #OrthostaticHypotension #Anxiety #Depression

Hi, my name is soulcolorss. I'm undiagnosed and currently doing the specialist shuffle. We are thinking hEDS and CO

#MightyTogether #Depression #ADHD #EhlersDanlosSyndrome #ChronicFatigue #OrthostaticHypotension #ChronicPain

Hi, my name is thedaniellerhea. I'm looking for friends

#MightyTogether #OrthostaticHypotension #PosturalHypotension #Anxiety #PTSD #Depression #Dysautonomia

Hi, my name is Ekh563. I'm here because

#MightyTogether #PTSD #Migraine #Anxiety #EhlersDanlosSyndrome #OrthostaticHypotension