What is your Sjögren's syndrome story? Let's share!

My first appt the Dr told me I had fibromyalgia because I am a woman and I worry. After I left I called my primary doctor and said get me a new doctor. I was convinced to go back.  Then about a week later i got a letter and brochure stating I have Sjogrens. If I had questions, I needed to call and make an appointment. I freaked out as I didn’t know what he was testing me for. So went to my next appointment determined to get answers. The whole the doctor talked about passed presidents and which one was better. I left and demanded a new doctor. I’ve been with my new doctor for about 15 years now and wished I had her from the beginning. 

Hello,

The second GP I had had noted something weird in my blood, but didn’t know what to think. He said it was perhaps non significant, just a particularity.

After a long holiday in another country, I said to my GP : « For something I don’t have, it gave me much pain ». So he send me to a specialist in rhumatology. The specialist was very tactful and kind. He took time to explain. I had to have a biopsy of salivary glands to confirm what my blood already reveled. Then I had to take Plaquenil (hydroxychloroquine) and Salagen (pilocarpine). I took the Plaquenil for 4 years and had to have an ophtalmologue watches my peripheric eyesight because Plaquenil is a hard medecine. After 4 years, it gave me cramps in the abdomen 2 hours after taking it. So now I’m off. It gave me only 10% relief anyway. I still take Salagen to relieve most of the dryness.

The fatigue and the dryness are the most bothering effects. And now that I add hormonothérapy to prevent the return of breast cancer and the NAFLD that seems to give also fatigue, I feel really tired and find difficult to exercise even with baby steps.

But I try every day: I’m a bit stubborn and very disciplined.😈. And working outside to gather leaves or other necessary works count also  as exercise after all!