Hello Jackie and welcome,
I'm sorry to hear what brings you here and that you had been feeling so rough for a while.
As you have just been diagnosed, have you started any medication yet?
The baseline treatment most people are put on is plaquenil which is generally extremely well tolerated and has few, if any, side effects. Its main "disadvantage" is that it takes rather a long time to kick in, often between 6 - 9 months.
There are also other med combinations that are commonly used and depending on how bad you are feeling and your symptoms there are plenty of options.
I really understand your fear about work. All I can say is hang in there and be optimistic. I was feeling exactly like you a while back and was so bad that I did end up having to stop work for a while (I had also had several years without treatment) but after about ten months of medication it all suddenly fell into place and I started to feel a whole lot better. Of course, that is only my experience and everyone is different, but it's just to say that at one stage I thought it would never end. I know that I will always have to be careful to pace myself and avoid stress but I am optimistic that now that the meds seem right and I have good follow up with a rheumy I will be able to keep going. I am extremely lucky in that my work is flexible and to start with I won't be doing a full time job.
Whether you will always be able to do the same job you do now, or whether you will have to adjust is something that you will only know with time. The best thing is to try and take things as they come and certainly not worry about them before. Also keep in mind that the people here on these boards are not representative of the whole lupus population as many who write here are newly diagnosed (and their treatment is not yet active), not yet diagnosed, or the rarer more severely affected people. Many people with lupus live very active lives and don't have the time to come and visit us here
It is very important to make sure your docs know exactly how any pain you have is affecting you. Don't suffer in silence. being uncomplaining has very few merits as getting someone to listen is a battle in itself at times.
I presume you are seeing a rheumatologist and that that is who diagnosed you?
bye for now,
Katharine