Hi, I just joined yesterday. After my first child was born I was DX with raynauds and a biopsie confirmed sLE rash. The SLE rash went away after spending time in the ocean (don’t ask, I don’t understand). Few years later the specialist said its autoimmune but not lupus since my ANA is neg. He said he didn’t know what it was but come back in a few months. Since I was a divorced single mom (ie. poor) I never went back. 20+ years many doctors have comment about my raynauds and/or the butterfly rash (different then the biopsied rash). About last year I started to complain to the doctor about joint pain and “over all just not feeling well”. I told him I thought it was a side effect to my antidepressants and stations. I went off ALL meds. Still didn’t feel right. Joints ache and tried most of the time. I brought up lupus. Dr. Said no he didn’t think so but would run blood work. To make a long story short, he ran the ANA three times over 8 months because the lab couldn’t run the test. Something with my blood wouldn’t work. Three times. A year later, I am having symptoms of sjogrens. I may have two or three days where the dryness isn’t to bad. But my blood sugar is usually high on other days. I have started eating a paleo type diet. When I am strick I notice major improvement. Last few days I’ve made paleo treats but feeling great. Finger joints ache. Any advice?? Should I see a specialist? They don’t take medical insurance and cost so much. I am just frustrated.
Welcome !! I was diagnosis June 2013. I find swimming in the ocean very interesting. I am curious about the relationship sun and lupus have . I have been on paleo for a while and I have removed gluten. This has made a big difference in clarity of thinking and energy. I am in the process of removing sugar I find this difficult . Yesterday I ate bread and paid for it last night . My experience shows for me food is a biggy. I am sure you will get some wonderful advice on this site 
Hi, welcome to this wonderful site! I have lupus sle and Hasimoto's. My latest ANA and other tests are all negative too. I do have lupus though. The Rheumatologist tells me that the tests being negative doesn't mean you don't have the disease. Lupus is different in everyone so the treatments are varied. You have many of the same symptoms I have, however since I have been on Plaquenil for a year now I am doing much better. Does the sun bother you at all? If it does that could be a big sign that you have sle. Can you go to a Rheumy or just see if a doctor will work with you? There are many people on here who have a lot more experience and knowledge than I do. Keep reading and you will learn a lot.
Feel better,
Geneva
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Hello and welcome! You'll read about many on this and other sites who don't test positive ANA for quite some time but are still diagnosed with Lupus. My doctor was resistant to say lupus until the test showed but knew i had it. I had already been dx with Hashimoto's (thyroid), sarcoidosis, reynauds, scleritis, scleraderma, etc..
Be careful in the sun, for most it will start or intensify a flare - consider yourself lucky if it doesn't - enjoy some for me please.
I take plaquinil, medrol (steroid), snythroid, folic acid, cymbalta, methotrexate, 3 asthma meds, Hugs and spoons, Robin
Hi Jabber, Welcome to the site. Im new also and I feel great being able to correspond about my good feelings and bad. I just want to say Im sorry for you feeling frustrated. Such a lousy feeling. Glad paleo is helping. I wish I could say more that would help. Im learning a lot myself after all these years of SLE. This site is amazing.
Hi jabber, yes if the sun makes you feel bad and intensifies the butterfly rash I am pretty sure it is lupus. Most any doctor can identify the butterfly rash and especially you said it was biopsied. I also had a spot on my shoulder biopsied and it came back positive for lupus. Hang in there and stay out of the sun and see if someone will start you on plaquenil. It took between 3 to 6 months to really kick in, so see if you can get it soon. This is the drug they start most of us on.
Good luck and keep in touch!
Most doctors aside from Rheumatologists are incredibly thick-skulled (and so are many Rheumatologists… Look for one that actually sub-specializes in lupus!) It’s very fortunate you haven’t had serious complications after all those years without treatment; maybe your case will be manageable just with plaquenil and lifestyle management (stay out of the sun!!! It’s not just an annoying rash, it actually contributes to systemic disease activity aka damaging your body little by little as it establishes a stronger and stronger hold by the lupus…) If you must be outside between 10 and 3, which you should strongly avoid, wear high-SPF sunscreen and clothes/hat that cover you well! Umbrella or not, lupies are vampires not beach-goers… At least that’s fashionable these days. But as a surfer and former lifeguard, I’m really sad to be an indoor-cat for until there’s a cure. Anti-inflammatory eating is important too, and although you’ll probably have to give up some favorite foods you find are inflammatory for you (in my case, I miss cheese and tomatoes like crazy, but having them makes me so miserable it’s an obvious choice… Same with the sun!) Anything is better than a severe flare and/or irreversible damage. And since the drugs are so damaging as well, whatever you can keep under control with as few of them as possible is the best route to go. Wishing you luck and more clear-headed doctors.
About the ocean… Obviously I love it and believe in it doing great things. Just swim after the sun’s a lot lower and with plenty of sunscreen Luckily I live in a cold-water area, so if I do ever get the energy to surf (not so common), I’m covered head-to-toe in 3-5mm of neoprene. That’s pretty much SPF infinity 
All but my face is covered, and unfortunately that’s where we’re all sensitive for that butterfly rash! As far as systemic activity, though, it’s total skin dose. More on the face and upper chest is of course damaging those areas even worse, but keeping as much else covered as you can is highly advisable. I’m trying to accessorize more with scarves to protect my chest, too
Hi
I have 3 skin diseases. SLE, lichen planus and eczyma. My rash is bad all the time. Got a script for Halobetasol for the itch which works great for the extremeties but not my itchy head. Just came from the dermotologist, was told to wash my hair every day with Head and shoulders and head and shoulders conditioner. use a humidifier and Aveno lotion every day. I spend my whole day either takng pills, eating so I can take other pills, moisturing, washing my hair or filling the humidifierLOL I should get paid for that, it's a full time job! LOL.
Does anyone know the symptms of sjorgrens??
Cindy
Hi faldora;
If you live near Nashua NH I can recommend a Rheumy.
Cindy
Hi jabber
My rheumy mentioned that the last time I was there. I have an appointment next week. My mouth is so dry when I wake up in the middle of the night that I can' t close it until I get a drink of water. Might as well have that to add to my list of DX. My hands are freezing also. Sometimes I wear mittens around the house. My thermostat in the living room is 75, so I shouldn't be cold.
Thanks for replying to me.
Cindy
I recommend you try to get health insurance. Healthcare.gov can connect you with different options including no cost, reduced cost, and subsidized insurance based upon your income.
I know there is controversy surrounding the affordable care act, but people with conditions like ours are better protected and served because of it. I hope you find a treatment that works for you.
(P.s. This is only relevant if you live in the US)
Great responses....
When I was diagnosed - my rheumie handed me a pamphlet after giving me the news. Wow, really? That's it? I learned all I know about Lupus here, and the first book I picked up. I read all I could.
I didn't think I was sun-sensitive because I didn't have the rash - wrong, very wrong. It saps my energy and increases pain for me. And, I experienced the rash recently when I colored my hair, using a different product. I stick to the same products now, if it works, don't mess with it.
I'm also turning to diet to improve, and I plan to get back to exercising after I've adjusted to working full time again. I feel so much better when I do, time is just an issue since I drive 30 miles to work and back.