Being taken seriously
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Age 34 Sex F Height 5’7” Weight 155lbs Race W Duration of complaint 25yrs Location systemic Any existing relevant medical issues: see post for details Current medications Duloxetine, Zyrtec, adderall I want to start by saying that I am strong believer in evidence-based medicine. I say that because I’m afraid that when we talk about self-diagnosis, the assumption is that the person in question doesn’t trust the medical community at large and is seeking confirmation bias. I truly don’t want to fall into that trap and am open to any gentle enlightenment if that is indeed what I am doing. Here’s my issue: Female, 34, never smoked, 5’7”, 160lbs (fluctuating); RX for duloxetine and Zyrtec; extensive list of symptoms ranging from generalized pain and fatigue to gastrointestinal, cardiac, skin, etc. Can be as specific as you like in the comments, upon request. I have had a lot of medical problems since around puberty. Really weird, out-of-nowhere symptoms, and some quite debilitating. My parents took me to every doctor and specialist and not much came of it. Lots of theories, several diagnosises that one dr would put on my file only for the next to remove it. Then once I aged out of my parents insurance at 26 I’ve just been floating from GP to GP because I’ve never had the same insurance two years in a row. Now I finally have decent coverage and I want to dig into this more, especially as I’d like to start a family soon and need to prioritize my health first, and that starts with building a medical team that takes me seriously. I honestly, truly think I’ve found answers to decades of weird, painful symptoms. Here’s a small overview: EDS (I score a 8 on the Beighton Scale); POTS; ME/CFS; MCAS. I have a formal diagnosis for idiopathic hypersomnia. Drs can’t agree on fibromyalgia but I don’t think I have it. I had mono at 8 and never rebounded. We didn’t know why. They tested me for Lymes, diabetes, lupus, Hashimotos, hypothyroidism- nothing. So how do I pursue these diagnosises without sounding like another Google know-it-all? Should I play dumb and hope the dr stumbles on it themself? Or present my evidence and risk being written off as another Tik Tok trend follower? How do I get started? Funds are so tight, and I don’t have the energy to do hardly anything but work and shower. The state I live in (Iowa) only has one lab that tests for EDS and they only take patients with family history. Which dr should I start with? I know these conditions don’t have cures or even treatments, but I think I deserve recognition and understanding from the medical community and my family. I’m happy to provide any extra personal or family history that might be enlightening but, fair warning- it’s a lot. Advice appreciated. Please be kind. Thank you all.
Details
- Subreddit
- r/AskDocs
- Author
- u/surveillance-pigeon
- Posted
- Feb 12, 2026 at 2:29 AM UTC
AI Analysis
- Condition
- Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), idiopathic hypersomnia, fibromyalgia (possible)
- Barrier
- gatekeeping
- Geography
- us confirmed