CatJ - I was researching something on my own medical issues and saw your post. I read lots of them and I've never replied to anything, but I am not the only medical mystery out there it seems as your friends symptoms seem so much like mine that I felt compelled to offer some insight even though the post is a year old. I am fortunately getting some answers at age 39 and have been recently diagnosed with type 3 Ehlers-Danlos Syndrome (hypermobility) and POTS - postural orthostatic tachycardia syndrome. EDS is a collagen disorder so anything in your body made with collagen can have problems and this only affects, oh say, your eyes (80% collagen), skin, organs, veins and all your connective tissue. I'd be willing to bet your friend has body aches, joint issues, chronically tired, vitamin deficiencies she may not even be aware of (particularly B's &D), may have poor wound healing, feel like she just needs to sit, holds her head up with her hands a lot, bleeding/bruising issues, nearsighted, exercise intolerant, has difficulty waking, poor memory, gets sensory overload, difficult to concentrate, possible joint dislocations, back issues, weird food allergies, chemical sensitivities, sleep disorder, immune issues, TMJ, gastric reflux or heartburn, spacey feeling or feeling disconnected, bouts of dizziness, palpitations, OMG I could go on forever about all the symptoms these 2 issues can cause. Bottom line, the EDS causes the POTS, which might explain some of her heart issues. Maybe she's been diagnosed with orthostatic hypotension or something or maybe she has valve issues with her heart? They're made of...surprise...collagen! Ask her if she's double jointed or really flexible. This blew me away when I found out that not everyone can bend their fingers backwards or touch the floor with their palms. If any of this sounds familiar to her, have her look up the 9 point scale for hypermobility and see what she scores. You can get 1 out of 9 and still have it even if you're not obviously double jointed. If any of this sounds familiar to her, have her get the books on Amazon by Brad Tinkle. He's my geneticist at Children's Hospital in Cincinnati and runs an EDS clinic there or just research and get in to see someone to get a definitive diagnosis. She should also see a good electrophysiologist for the POTS.
I have stumbled through 39 years of my life with so many issues, but because I never "looked" sick, no one ever took me very seriously so I truly feel for your friend knowing that she is probably dealing with something similar and doesn't even have a name of what she's fighting. I've been called lazy, I'm late for everything and have never been a morning person because I can't get up due to the sleep issues with the low BP so you get labeled a slacker. I have been misdiagnosed with so many things and had all but given up on anyone ever truly figuring me out when I stumbled across a family member that was diagnosed with it and it sounded like my medical history exactly. Turns out that there are lots of us out there that with these disorders and it bugs me that so many suffer quietly like I did for almost 40 years all because there's no awareness for this. Whatever her issues, you're a good friend to have posted this so bless you both and good luck in your quest for answers!