Hello, I was diagnosed in September of 2015. I am very light sensitive especially to fluorescent lighting so that I have to work with my office lights off. I use a small lamp and my computer to work with. I have 4 fans in my office and my a/c at home is set on 62 degrees. Heat affects me greatly. If I stand in the fluorescent light very long my skin usually my neck area will get red blotting it. They are smooth and will disappear when I cool off. I get very hot from what seems like within but when I try to cool my skin then it seems to freeze and it's like having a very bad sunburn. .My Dr. has no explanation for this and I have not found one in my research. I currently take plaquenil as well as Lyrica which does help but does not aliviate all of my symptoms. I also have Clobex spray and Zonalan which actually deadens the nerve endings in the skin for a while. I sleep on a chillow pillow which cools me off at night but still feel like I don't have enough answers for my illness.. especially the heat that radiates from my body when I get home from work. . Hope this helps some please let me know what medications you are on and anything new that you may know...

I take plaquenil, cymbalta, neurontin, and then supplements (they're my saving grace). To help with cognitive function and energy I take ginko biloba and korean red ginseng root. Klamanth blue green algae is great, because it effectively removes all of the built up toxins and toxic heavy metals that the body can't do naturally. Those are the main three supplements that i swear by, although I take l glutathione, fibro essentials (made for those with fibromyalgia; I know it includes b12 and magnesium), and probiotics. I have found that fluorescent lights are much worse for my lupus activity than the sun. I wonder if it has something to do with the sun being natural as opposed to artificial. I have hot flashes, but I also have periods where I'm freezing; I think it's my sensitivity to temperature. Unfortunately, I have not made any headway in that arena. I have searched all of the tumid lupus academic journals I had access to, and it seems scientific research is finally picking up speed.

I take plaquenil and Lyrica but have not tried any of the other supplements you mentioned. Maybe I will try those since you have had luck with them. I too am way more sensitive to fluorescent lighting than sun but really do not have a problem with lesions. The only thing that the light does to my skin is make smooth red patches that go away when I get under a fan or air conditioner. There are no left over marks. If I stay under fluorescent lights too long I feel like I am getting sun burned but may have no marks on my skin just extreme heat that comes from my body. My dermatologist even says I have symyi shouldn't have and he doesn't know why. But I really do think I will try the supplements you mentioned at this point I am willing to try anything if I get relief.

I've read that most people with TLE have the bumps you mentioned, but I do not. Apparently it is rare to have tumid lesions/bumps below the waist, and my biopsy came from my leg. Do your bumps only form in areas exposed to uv radiation? Before plaquenil I could be wearing jeans, sneakers, a long sleeved shirt, and a jacket while wearing spf 100 sun block with helioplex and get lesions on my back, arms, legs, and feet. Multiple small lesions would form in an area of about 6"×6" before turning into one giant red plaque. They would then swell, making my arm twice it's normal size, ang my arm would turn fire engine red and be hot to the touch. Since tumid lupus bumps are mucin deposits in the subcutaneous tissue that are the result of a reaction with uv radiation, thus inflaming the surrounding tissue (as well as trapping and inflaming the collagen in the region), and the huge plaques would press on my nerves. Thankfully, I have not dealt with those in over a year. Do you get the sunburn feeling everywhere? The closest symptom I've had to yours would be the butterfly rash. I have a Swanson Health Products account, which is where I get all of my supplements. They are generally way cheaper, and they tell you the units of the ingredients, so I think they're more trustworthy. My boyfriend's mother has hashimoto's and fibro, and sent me home with a week supply of most of the supplements I mentioned. My mother and I take the same supplements, and she says they've helped her tremendously. She has tumid lupus with positive ANA and fibromyalgia. For hot flashes you may want to look into valerian root, black cohosh, and/or licorice root. They are natural as well, and my mother says black cohosh helped lessen the intensity of her hot flashes. I'm just throwing out ideas, so I'm sorry this post is so long. If you try them out, I'd love to know how they work for you. It took me exhausting all other options before I gave in and decided to give supplements a try as well. I hoped this helped!

Paula, with insomnia keepimg me up, I started doing some research for you amd found an abstract from a study done by nih on progesterone effectively treating hot flashes without withdrawals. It may be of interest to you, so here's the link: https://www.ncbi.nlm.nih.gov/pubmed/22849758 Also, I read an article a few months back about lyrica/neurontin and how detrimental they are to the formation of brain synapses.