Welcome - and I am sorry you are dealing with all this.
The road to a solid diagnosis (if there ever is such a thing...) can be a long one, and a lot of it is often trial-and-error. It can be really rough, not just physically, but also psychologically, emotionally, and socially. I am quite sure we all have our hermit-like times because, as you say, sometimes it's just easier than constantly EXPLAINing everything all the time.
But it's important not to isolate yourself - reach out when you can, however you can. Sometimes that may just be through your computer while you lay down with your feet up, but hey - that's what we're here for!
Also, I don't know how you went off meds, but I would STRONGLY caution you not to go off medications without guidance from your doctor. If you really don't want to take them, discuss it with him/her before taking action. Some medications (Plaquenil, for instance) can take a long time - up to 6 months - to make any real difference, but it's worth it to wait and stick with it. Others, like Methotrexate or other immuno-suppressants, can be kinda rough at first and even make you feel worse for a while - but if you stick with it and work with your doc to adjust doses, timing, delivery systems, etc, they can often work out pretty well in the long term.
And if you are on any kind of steroid (prednisone, etc), it is CRITICAL that you only stop taking it UNDER MEDICAL SUPERVISION...you have to titrate the dose down slowly. Suddenly stopping even a moderate dose of steroids can result in hospitalization or even death, depending on the dose and how long you have been taking it.
Sometimes people have to try several different medication and diet/lifestyle adjustments before they find something that helps them feel better. It can be a long, frustrating process - but don't give up.
And please don't leave this disease untreated. If you do indeed have Lupus (and hey - maybe with more investigation, they will find you don't!), it is critical that you keep the disease in check. Believe me, 99% of us also dread being on the medications and hate the dependency and hate loading ourselves with chemicals....but this disease can also kill you, so PLEASE take it seriously and work to keep it in check.
Sometimes in life you just have to choose the less-crappy of two very crappy alternatives...in this case, taking medication is less-crappy than letting Lupus destroy you from inside. Find a doctor you like and respect, who likes and respects you (and LISTENS), and then commit to the long-term project of working WITH your doc to maximize your health.
Best of luck - and we're always here to listen and talk with you!!!!