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Sjögren’s Syndrome: how do you manage the symptoms?
Autoimmune Diseases | Last Active: Apr 10 8:16pm | Replies (158)Comment receiving replies
Hello a doc (neurologist) that I saw at Mayo diagnosed my Sjogrens. I have joint/muscle/bone pain and he said it was sjogrens arthritis (not fibro). Sjogrens is a vicious disease in my opinion and some docs still refer to as a little dryness. It caused my small fiber neuropathy and dysautonomia/POTS. I did not initially have dryness but still had a positive lip biopsy. Mine started with the POTS/dysautonomia/SFN brain fog and dropping items. I found that at larger teaching hopsitals docs are more informed concerning Sjogrens.
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Forgot to mention how I cope:) I exercise 5-7 times a week. Initially I had to start very slow due to the POTS. Once I started on Plaquenil/exercise some of the joint pain subsided. I have resigned myself to living with some pain. I was using a humidifier until I saw a pulmonologist at National Jewish Health. Interstitial lung disease is a risk factor, so she said no humidifiers, hot tubs, birds, down clothing.....all that said you have to decide for yourself what you can live with and without. Sjogrens affects us all differently so partner with a knowledgeable doc and do the best you can:) My disease has progressed, and we are still trying to find a drug to slow it down. I had an infection in the fall of 2018 which started this autoimmune cascade (sjogrens plus other AA diseases). Before that time I did not have autoimmune disease or if I did it was subclinical and I was symptom free. For dry mouth I use products with xylitol in them and I have some for night and some for day. Dry lips I use products with lanolin. I use autologous eye drops and steroid drops in my eyes daily. I drink 2-3 liters of fluids daily. Take care with meds that make dryness worse, I stay away from fans, stay out of the heat, take meds daily, watch my diet, and exercise almost every day (gentle exercise).