It’s miserable I don’t know where to start

For me, it’s scary and painful, especially since i have to figure everything out myself. It’s hard to know when a spell comes, and what causes it for me.

It’s frustrating and painful. I know for me heat really makes my symptoms worse. But other than that I’ve been lost. It’s really hard to know why I’m suddenly flaring up.

A daily battle with myself, constantly drinking water and eating helps

10 years of pots here. Get compression stockings. Check for “Hypoglycemic pots” with a Glucose censor patch, since hypoglycemia causes dizziness, hot flashes when your sugar drops. Also arrange your living space so you don’t have to bend over frequently. And if you do buy a “grabber stick”. Measure your sleep with an OURA RING. Try to sleep 7 hours. It will make a difference. Take a lunch box with you everywhere. Any questions, contact me. Hope this helps.

It’s miserable and exhausting. I’ve had worsening symptoms for over 7 years now, and I’m still going to doctors for answers. It’s mentally draining having to explain your symptoms over and over for doctors to simply dismiss you because they don’t know enough. I carry around my medical history and symptom list to every doctor I go to, because at this point it’s easier to just give them the paper instead of listing it off. A lot of people around me don’t believe me, or think I’m making it worse then it is, when in reality I feel like I downplay just how bad it is. It’s just…tiring.