Hi everyone! I was recently diagnosed with hEDS.
I’m writing this from bed as my shoulders threaten to seize up again. Is there any way to get the tightness from muscle guarding to loosen up without causing problems? If I sit or lay wrong for too long do too much activity my muscle guarding gets even worse, and I overdid it the last couple of days. Any tips would be appreciated! 🫶🏼
Hi all! I'm new to this community and am so grateful it exists!
As a result of being sent on the years-long wild goose chase we're all far too familiar with, I tried out a functional doctor that helped my dad figure out what his complex network of problems was. She asked for my complete history, and after hearing it said that I probably have hEDS as well as some other comorbities like POTS, PCOS, probable mold toxicity, potential long covid, etc.
I am hyper-mobile, but my muscle guarding is so bad I can only bend over all the way to touch the floor when I've had a massage. Even still, I pass the Beighton test. My joints are constantly cracking, aching, popping out, and the tendons sometimes will just pop right over my ankles or knees, etc. My skin is quite stretchy and freaks out the few people I've shown lol! I have chronic GI issues, brain fog, POTS-swings, Raynaud's, insomnia, anxiety(OCD in my case), etc. My mom, sister and grandma are all very hypermobile with less resource guarding than I have, all have chronic pain too and all have POTS symptoms that they just thought were normal.
My question to all of you beautiful people is does it matter if a functional doctor gives you the diagnosis if the process is thorough? Does it have to be through a specialist to get insurance coverage for any management I may want to do (like PT)? We're doing an extensive blood panel and I think genetic testing is next to do the rule-outs, I have an appointment to go over the diagnostic criteria with her and fill in any gaps she has in my history. She has treated many patients with hEDS/EDS before she says, she told me they usually end up in her office because the other doctors that don't look at systemic causes typically spot this.
I'm feeling really encouraged that the possible answer to my mystery is so close to being revealed, but scared because I've been down this rabbit hole so many times chasing answers only to turn up empty-handed. How was the diagnosis process for you? Has knowing helped you?
Hope everybody has a great day ❤️