Experience With Sjogren's Syndrome
Last updated: March 2022
Sjogren's syndrome and lupus can mix with each other. Sjogren's syndrome is another autoimmune disease and mimics lupus also. As many know, lupus can mimic other diseases. It can attack your glands, mouth, eyes, and hands. It can also be linked to arthritis. It can affect almost everything lupus can that is why sometimes lupus and it can go together or you can be misdiagnosed a lot.
When I was diagnosed with cutaneous lupus I was also diagnosed with Sjogren's. My hands would turn purple and my toes. I would catch sores in my mouth and on my skin to where I have open wounds. I would not know what to put on my skin so it would dry and crack and bleed and it use to be so painful.
Lupus skin flare
One time I was going to Dallas to visit and my skin was open, flared, and dried. I would put vitamin E on my skin but rub it against something and my skin was back crusty and flaky. One day I was at the barbershop sitting in the chair and I decided to lift my arm up and my skin cracked and blood gushed out and a blood clot came out of my skin and I screamed. It randomly happened. Then one day I decided to put Carmex on my lip and the same thing happened to my lips.
I had rashes worse in my mouth and super moist areas. Sometimes around my vagina would flare up to where when I went to the emergency room it became a class session where all the nurses were curious and wanted to see how my vaginal area looked and why it had gotten like that. I had to do treatments and creams on my skin. I had to change my diet and prioritize myself. When I started to do chemotherapy overtime it cleared my skin up but it took me about a year to get myself together. Now I am healthier and better and I love myself even more.
How I coped with lupus and Sjogren's syndrome
But doing stuff like oatmeal baths, oil baths with Epsom salt, and more. When my skin started to heal I started to do more with my skin like everything should be nonscented so it would affect my skin. I would watch the sunlight and when I go out to help my skin. Wear sunscreen and stay moisturized.
When it took my hair I really went through it. Pieces of my skin would just peel and open and bleed and some of my hair would not grow back due to it. So some spots are permanent alopecia. I learned to love myself after I cut all my hair off. Sometimes my skin would bleed so bad to where I would have blood all over my sheets and covers. I completely looked like I had third-degree burns all over my body. I had to gather up the courage to be okay. Sjogren's affected my body in the worst way. When my skin came back it was like a newborn baby. New skin and a new me.
Have you ever participated in a clinical trial?
Join the conversation