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Day 14

Mimi 58 (diagnosed at 47)
Patient-to-patient topic: POTS & Sjögren’s
I wish I knew earlier about a possible overlap of Sjögren’s and POTS.

I began to experience a very fast heart rate whenever I tried to do any activity. I felt like I was going to faint and would have to lie down to get relief. I saw three doctors before I was finally diagnosed. It is important to be patient because it takes a while to figure out what treatment is going to help you the most.

Most difficult Sjögren’s symptoms: Fatigue, pain, and gastrointestinal (GI) symptoms.

Best advice: Know that there are still doctors who don't know about this condition and it’s important to advocate for yourself. Prepare for your doctors' visits by writing down ahead of time what you want to discuss. Review notes again while in waiting room. Living with Sjögren’s and POTS is challenging, remember to focus on the small victories.

Go-to products/tools: A refillable water bottle, a collapsible stool that has a strap to carry it like a purse, a cooling towel for when outside in heat, following a FODmap diet, taking breaks when needed and exercising three times a week.

Click here to learn more about a new Foundation funded grant studying Sjogren’s and dysautonomia.