So my question is do any of you have a harder time once summer hits even if you stay inside? I had lupus symptoms for years but thought they were normal as I knew no different. Then when things started getting really bad to the point it was affecting my functioning I started to wonder. A few years ago we had a BBQ in the back yard and after the afternoon in the sun I ended up horribly sick and in bed for 3 days. Ever since then things have progressed each year it seems like end of June beginning of July I go into a flare up no matter what we do. Im on prednisone, plaquenil, and Benlysta infusions trying to combat the Lupus. Was starting to have results since starting the Benlysta and then this month have drastically gone down hill. Have been in a constant flare state the past 3 years. Had to quit working in December and have now come to the point that I can't even go to the store unless my husband pushes me in a wheelchair as the energy it take makes me flare up worse and puts me In bed for days. The last 2 years have been extremely hard as it seems like we can't get everything to level out. As soon as we start to gain some ground it seems like something causes another set back. It's so hard being 30 and having to use a cane to get around the house and a wheelchair if I have to go out for more than a few minutes as I can no longer stand up that long to walk across a parking lot without causing major issues. Last month I had about 3 or 4 good days where I actually felt human and had a couple good hours each of those days to the point I was actually able to clean the house. We were so thrilled as we thought the infusions were really starting to work and hoped I would continue to get better. Well then or weather drastically changed to warm and sunny and I've been horrible Ill ever since. All my symptoms have skyrocketed and I can barely make it around the house as I'm so swollen, the fatigue is so bad, and now I'm having terrible chest pain and shortness of breath. I'm extremely careful about sun exposure and stay inside as I know this has been a major trigger for me. But why do I still struggle so badly every summer? Do any of you have this problem? Sorry that my quick question turned into such a long post. Just really struggling with everything right now.
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