Patients Sjögren syndrome
What is your Sjögren's syndrome story? Let's share!
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How are you doing today?
I thought I would open this discussion so that we could all get to know one another better!
So, let's talk about your experiences with Sjögren's syndrome! How and when were you diagnosed? What symptoms did you have before your diagnosis? How long have you had it? How are you doing today? Feel free to share here!
@ColeenCoon @Jen-ny @Mickey2369 @SusannaH @tammiorw69 @DeeKris @mendykay @camcfadden57 @Carolynsheart60 @Jucompton13 @L.izzzy @Francine @Sharon70
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.
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!
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