I was recently diagnosed with HSD but have had symptoms my whole life, including what was probably mild POTS. My symptoms got much worse during/after pregnancy though (more fatigue, more pain, more headaches...). Unfortunately it did not revert to normal once I stopped breastfeeding either. Did anyone else have that experience?
I am new to all of this. I've known I'm bendy for years but thought my various ailments (pain in arms, legs, hips, feet, back) all were unrelated to the bendiness. Now I have long covid, dysautonomia, pots and mcas, and I came across the hypermobility link so I just went for an assessment. I have a Beighton score of 7 but didn't qualify for hEDS because I only have 2 of the 5 criteria in the first part of section 2 (although some other stuff almost fits, eg I have keloid scars rather than atrophic, but either way it is weird scarring?) and no family member has been assessed.
Now, I don't really care about the diagnosis, except that I want to understand what is going on in my body. And a lot of my comorbidities seem to fit hEDS better, and most of the posts I've seen here about getting a HSD diagnosis rather than hEDS seem to be about the Beighton being too low, which isn't the case for me.
So...how I am I supposed to understand what this means for my health. I know criteria are changing. Am I probably hEDS but the criteria don't show it yet? Or does HSD have all the same comoribidities and it is irrelevant? The doctor basically gave me the diagnosis and sent me on my way without helping me understand it, so....here I am.
Edit: it was a physical assessment, I haven't had genetic testing.