Eunice
Patient-to-patient topic:
Sjögren's & Symptom Management
What do you wish you knew when first dealing with this symptom/situation?
That there is a valid reason and medical diagnosis for my symptoms.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Xylitol mouthwash/mints, artificial tear drops, vitamin D and magnesium supplements, and massage tools.
What is your best advice for another patient dealing with this symptom/ situation?
Advocate for yourself and seek out multiple providers’ opinions.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
For as long as I can remember, I have dealt with chronic fatigue, pain, and systemic dryness but always felt these were just “normal” day-to-day feelings. In the last year, my symptoms had gotten much worse and began to affect my daily activities, including exercising, socializing with friends, and even work. Thankfully, my PCP was able to run multiple labs and tests on me and found that I was positive for an autoimmune disease and recomended I seek further assessments by a rheumatologist and optometrist, who both confirmed my Sjögren’s disease. I am eternally grateful for the providers I had who listened to me, and helped to pursue the answers I had been longing for. Had it not been for the wonderful care of my providers, I would have continued to minimize and invalidate these real and physiological symptoms.
Please finish the following sentence: "Sjögren's has taught me..."
To be patient and kind to myself during a flare, because I can’t blame myself for something I have no control over.
What are your most difficult symptoms?
Fatigue and muscle/joint aches.
What do you wish people knew about your Sjögren’s?
That Sjögren’s is much more than just dry eyes and dry mouth. It can manifest differently for everyone. For me, the fatigue can often be so debilitating that it’s difficult to even fathom getting out of bed in the mornings.
How do you incorporate self-care with managing Sjögren's?
Getting massages, Epsom salt/warm baths, stretching, spending time with my dog.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
It definitely exacerbated my anxiety and depression, because I feel like I can longer keep up with social events/gatherings, not being as vivacious, energetic, and/or physically as active as before, and needing days off from work to recover. However, having an incredible support system has been my lifesaver and a frequent reminder to give myself grace.
What is your go-to Sjögren's product?
Myofascial release tools, melatonin, Cerave moisturizer, and xylitol products.
What’s your best Sjögren’s tip?
Listen to your body, and don’t overdo things.
Eunice
Patient-to-patient topic:
Sjögren's & Symptom Management
What do you wish you knew when first dealing with this symptom/situation?
That there is a valid reason and medical diagnosis for my symptoms.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Xylitol mouthwash/mints, artificial tear drops, vitamin D and magnesium supplements, and massage tools.
What is your best advice for another patient dealing with this symptom/ situation?
Advocate for yourself and seek out multiple providers’ opinions.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
For as long as I can remember, I have dealt with chronic fatigue, pain, and systemic dryness but always felt these were just “normal” day-to-day feelings. In the last year, my symptoms had gotten much worse and began to affect my daily activities, including exercising, socializing with friends, and even work. Thankfully, my PCP was able to run multiple labs and tests on me and found that I was positive for an autoimmune disease and recomended I seek further assessments by a rheumatologist and optometrist, who both confirmed my Sjögren’s disease. I am eternally grateful for the providers I had who listened to me, and helped to pursue the answers I had been longing for. Had it not been for the wonderful care of my providers, I would have continued to minimize and invalidate these real and physiological symptoms.
Please finish the following sentence: "Sjögren's has taught me..."
To be patient and kind to myself during a flare, because I can’t blame myself for something I have no control over.
What are your most difficult symptoms?
Fatigue and muscle/joint aches.
What do you wish people knew about your Sjögren’s?
That Sjögren’s is much more than just dry eyes and dry mouth. It can manifest differently for everyone. For me, the fatigue can often be so debilitating that it’s difficult to even fathom getting out of bed in the mornings.
How do you incorporate self-care with managing Sjögren's?
Getting massages, Epsom salt/warm baths, stretching, spending time with my dog.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
It definitely exacerbated my anxiety and depression, because I feel like I can longer keep up with social events/gatherings, not being as vivacious, energetic, and/or physically as active as before, and needing days off from work to recover. However, having an incredible support system has been my lifesaver and a frequent reminder to give myself grace.
What is your go-to Sjögren's product?
Myofascial release tools, melatonin, Cerave moisturizer, and xylitol products.
What’s your best Sjögren’s tip?
Listen to your body, and don’t overdo things.