I'm So confused. So I finally feel mostly better but not perfect. My fevers have been gone for about a week and a half. My blood test shows my ana is back in the normal range even. But I'm confused and I don't understand because I still get rashes and some pain just the pain isn't as bad. In fact, the rashes are getting kind of worse. I still get tired. Is it normal to still get rashes while the lupus isn't exactly active? I'm trying to learn when and when it is not active so I can better plan… read more
That's the unfortunate thing I've found out with this disease. Some days I won't be able to get out of bed and others I'm totally fine. Even though you may be out of a major flare, you can have minor ones that pop up out of nowhere. If you have photosensitivity then it is probably normal that the rashes are getting worse with the summer settling in. I know I'm the same way. The best thing you can do is rest and drink lots of fluids especially if you have a fever. I've found that drinking water all day has been reducing my pain and helping get through the feverish days quicker.
Your story sounds a lot like mine! 24-7 Neutrogena 110 spf helps outside in natural lights and under UV lights (you know those give off the same feeling). At my job Id leave rashy in pain and felt like crap. The sunscreen helps, i traded in all my makeup for sunscreen. Ask your employer if you can wear a hat to shield your eyes and skin, this helps. Also ask about fish oil and evening primrose - it's supplements that do good things for the skin! Lupus has stolen my vanity, sending hugs!
Keep us updated and let us know how those supplements work for you! Florescent light is difficult on me as well. I've found that the worst combination is florescent lights and a cold room. My body HATES it. Thankfully my heating pad is always in my car just in case.
I feel that I'm either too hot or too cold and both "extremes" affect me. It's annoying
I started taking fish oil and I have evening primrose but haven't taken that. I will certainly try. I've notice that in florescent light it bothers me quicker than the sun but the rashes don't last as long. The sun takes longer to effect me but the effects last longer as well.