Hi and welcome, I am new here also.. ;0)
What I have to suggest is might sound very strange, and may or may not be suitable for you. It is only a suggestion and it seems to have worked ok for me.
I'll give you an outline of my history first.
I have had Fibromyalgia for about 4 years, and over the last couple of years my symptoms have changed, and I have an awful lot more joint pain, swelling, arthritis in my fingers, extremely painful feet, oral and nasal sores, alopecia, psoriasis, and many more symptoms. I knew there was something else going on, especially because fibro is not an inflammatory condition.
I had to push to see a rheumatologist, and when I got there he did a lot of tests. I got a letter saying I had showed positive for antibodies for SLE lupus, and rare related conditions. But not to worry as it was probably nothing, (5% of healthy population could show at this level). I didn't think much of it until I started looking into it. Everything started to fall into place, especially the fact that I had been on a holiday to Turkey 2 years ago. In the second week, In EXTREME Turkish sunshine, I developed a rash and felt pretty awful. When I got back to UK the rash persisted for another week I think, but my health went rapidly downhill. It was then that I stopped working. I had a few jobs to finish, which took me about five times longer than normal, and most I had to send back to the customers with an apology. And I have not worked since. I miss my work so much. My symptoms just continued to get worse.
So when I went back to the rheumatologist with a huge list of my symptoms and a letter explaining the history since Turkey especially, he agreed it looked very much like lupus. And in any case was a 'connective tissue disorder'. He prescribed plaquenil, and I have just started that.
Here's where my suggestion comes in. But I am slightly reluctant to tell you, you will see why.
Iknew when I went back to the rheum. doctor, he would be taking more tests, and I didn;t know he would go by my symptoms. I was very concerned like you that I wasn't feeling at my worst, and that my tests might not show anything.
So I thought that for the sake of being diagnosed properly if I did have lupus, it was worth a bit of suffering. Rather that than risk going undiagnosed and not being treated.
So I sat on the sofa exactly where the sun shone through the window every morning for a week before going for my tests. My lupus(?) does not make me break out in a rash in this Scottish sun...lol, but I really do feel quite a bit worse than I did before I did this. My joints are a lot more painful, but I am very used to pain, and can handle it for the sake of a diagnosis.
Now obviously you have to be really cautious to do something like this, and only do this if the sun doesn't affect your skin too much or cause a drastic change in your symptoms, it may just show the lupus to be a little more active in your tests, if indeed it is lupus.
To some this might sound a bit stupid, but to me it makes perfect sense.
But that is knowing my body and reading it pretty well. I haven't had the results back yet, but as I say my list of symptoms along with the first tests have been enough anyway.
If you do decide to push it along a little bit, be really careful and listen to your body. Please let us know how you get on.
On the plus side if there is no change maybe you don't have lupus after all..
Good Luck
Sue ....
(sorry for such a looong post)
I have just realised that you don't necessarily suspect lupus, and I don't know if the sun would affect any other autoimmune diseases, but it may help to show lupus if it is that particular condition.
