Suzanne 53 (diagnosed at 52)
Patient-to-patient topic: Dysautonomia
I had full autonomic failure 3 years ago. I was out of work for months and was worried not only about if I was going to survive but how I was going to make a living to support my family with my limitations. Find a support group of people who understand what you are going through.
Most difficult symptoms: My most difficult symptoms are neurological: orthostatic hypotension and bradycardia which lead to brain fog, fatigue, dizziness, and headaches
How has Sjögren's impacted my life: My life has been impacted physically, emotionally, and financially by Sjögren's. I lost my position because I was not able to handle it physically or cognitivly any longer. Which not only effected me financially but has greatly effected me emotionally.
What is my best advice for another patient dealing with this symptom/ situation:Find a neurologist and a electrophysiologist that specialize in autonomic dysfunction.
How do I incorporate self-care with managing Sjögren's: I stay out of the heat and balance my fluid intake with my electrolyte intake. I listen to my body, when I'm fatigued I rest.
What’s your best Sjögren’s tip? Take your symptoms serious, do not let anyone minimize what you are experiencing.