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Sjogren's Syndrome Support

Carol from the United Kingdom has joined us - Welcome!

@Nana5

Hi there, Carol

My name is Danielle and I am a Ben’s Friends intern. I wanted to take a moment to welcome you to Sjogren’s Syndrome Support. We are happy to have you here!

I understand that you were diagnosed with Sjogren’s 2 years ago and have a longstanding diagnosis of Fibro. How are you managing overall? It sounds like you lead a busy life as a nana of 5. I hope you find time to take care of yourself as well.

You might find it helpful to click the search icon (magnifying glass, top right). This is what I use to browse through existing topics. Please do not hesitate to create your own discussion posts by clicking the + New Topic tab. This is a great way to connect with others and ask new questions.

Hope to hear from you soon,

Danielle

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Many thanks Danielle. Unfortunately I’m not really coping with the Sjogrens at thevmoment. Don’t really know which symptoms come from which problem lol … Having lots of problems with vision changing even thoughts not long had new lenses. Find it very frustrating. Also got lots of new joint pain which I assume is from Sjogrens. Recently increased hydroxyhydraquinine but had to go hcq as I to lower dose due to excessive sweating. It was like somebody had turned on a tap! Got appointment in September so hopefully they can suggest something. Hope you are coping ok and keeping in too of things. I really find the fatigue hard to deal with too, sleep my life away.

Hi Carol,

I am sorry to hear that you are not coping well at the moment. It sounds like your joint pain is getting a bit worse too. I can see that you also have a diagnosis of Fibromyalgia, which can impact how your body perceives pain. It can cause horrible fatigue as well.

Although I do not have Sjogren’s myself, I have learned so much as an intern by reading the experiences of different community members. I do not have lived experience with this diagnosis, but I can say that you are not alone. That is great that you have a follow-up appointment just around the corner.

How are you feeling with the lower dose of hydroxyquine? Is the sweating back under control?

Danielle

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