Potsygal

I haven't been formerly checked, but I can do all but one of the test markers for hEDS. All of this is just hard to handle. I want a life back.

Thank you! I'm glad to know I'm not alone in how I feel.

Thank you!

I've been having a very hard time lately with what I'm now understanding is a bad POTS flare. My joints hurt, I'm having GI issues, fainting spells, horrible pains in face and head, etc. I have appointments scheduled with Dr. Grubb soon, but have seen another cardiologist and PCP, who gave me little to no help. The cardiologist gave me yet another tilt table test that landed me in the ER because of tremors after it, and a huge bill, but then never followed up with help. The PCP told me pains in my joints and face, along with GI issues don't fit the POTS profile and has me going to see other specialists. All of this has left me feeling very defeated, mentally unstable as if I'm making it up, and scared. Working is becoming difficult, and it's been a month and no word back from my employer on ADA accommodations and FMLA. They're backed up because of COVID-19 they say. At this point I'm very down. My thoughts turn to having this life where I will never feel well again. And wondering if it is all in my head, if I just tried harder to feel better I would. I'm just feeling very lost right now. I'm also wondering if the physical flare is causing my emotions to be wonky as well. Has anyone else felt like this, and how did you get through it to feel better?