So so sorry that you don't have the support that you are needing right now. Please email me so that I can give you my phone number. I would love the idea of us being able to "vent" to one another. Eastafricamissions@me.com.
(We use to live in Africa but now we are in Alaska)
I am originally from Texas.
I have seen dermatologist online recommending them. I have Extreme sun sensitivity. When I am in a flare, even some indoor lighting makes my face get red, nausea, headace, fatigue and jittery feeling. I think I am going to try these pills but was curious to see if anyone else has tried them.
I Google Everything, and yes, sometimes it doesn't help, but sometimes it does. I know that the "what ifs" can drive you crazy. Just keep an open mind. One thing I keep seeing is that with Lupus there is sometimes a definite diagnosis, and sometimes there isn't. Others here on this forum may be able to go into that more. I have heard some doctors say that it depends on which lab the blood test were run in. Sometimes the lab may say one thing, sometimes another may not. And sometimes the doctors are just so causal about it all,and are like.. "just come back if you get worse" or they pass you on to another doctor or specialist. The big picture is that you need to study Your body, get an idea about what is going on, and know the best way for You to treat it. Treatment can be personal and different for every person. Most of the time doctors look at your symptoms and just treat the symptom at the time. Inflammation/joint pain, nerve pain, depression, etc. If you want to "talk"more, just email me: SamfordMissions@me.com I can tell you more about my story. BonnieView Thread
So sorry to read about your situation. My mother in law has recently been dealing with Multiple Myleloma. I will be praying for you and if you need anything from someone in Alaska, just email me.
My Dr. had me sign a waver stating that I was aware of the risk of Plaquinel and aware that it could make my sun sensitivity worse. I would call your Dr. about it. In the mean time make sure you are wearing your sunblock indoors and out. Neutrogena ultra sheet dry touch SPF 100 is my favorite. When I am in a flare the indoor lightbulbs even bother me, so I spend a lot if time with more dim lights around the house. Fish oil (Carleson brand) helps a lot with pain and stiffness.
Glad that you finally have a diagnosis, sorry that it is Lupus.
Hope you are on your road to feeling better !
Sorry to hear that you are having problems and a doctor that isn't determined to figure things out. I have learned that you have to be proactive with your health and be determined to help yourself make your own quality of life better. Do follow up with a rheumotoidlogist and get some answers. You may also look into (Google) Sjogren's symdrome. I have read that many auto-immune problems can go together, or one can be misdiagnosed as another. You may not have Lupus but this instead. Not sure exactly which titer test the doc did but sometimes the positive titer just means that there is whole body inflammation, which could be an auto-immune disease, like lupus. But there are also so many others.
Keep doing your research and being pro-active with your own health.
Yes those can make you Very sick. I am VERY light sensitive. The lights a Walmart, hospital type lights, long tube florescent lights, and even the florescent "energy saving" light bulbs are all tough on me. I have read that the computer screen/lighting, shouldn't effect you, but it does me. I also get a red, hot face with a burn feeling. It even sometimes burns and tingles like I put bengay muscle cream on it or something. The lights also make me "wiped out" with fatigue, nausea, and feeling flu-like.
I now wear sunscreen everyday. I have tried Many different brands, but have found that the best one is:
I think you can get it at walmart, but I have ordered it online, at drugstore. com, just to be lazy and have it delivered.
Side note: I let it sink in and dry a little bit before I put on my makeup. If I try to put on my foundation I sometimes get the sunscreen to close to my eyes and it burns my eyes. (But I have found this true with all sunscreen and not just this one. )
My skin does funny things with indoor light and sun exposure, make sure you are wearing your sunscreen, even indoors. Also, even if I don't have dandruff, the selsun blue seems to help my scalp when it itches.
I read a post on here a while back with another woman with severe itching, hers seemed more of a nerve problem, so that might be a possibility.