I'm so sorry to hear that you've been basically ignored by your Doctors for the past 6 years (((hugs))). You should be angry at your Doctors for not listening. However, lupus is a tough disease to get a diagnosis with. It can present itself as so many different diseases. What you experienced can be very common with getting our lupus diagnosis. It took my doctors 13 years before the finally committed to saying yes I do indeed have lupus.
I noticed you said that you're not taking any medication for your lupus but medications for your symptoms, can you please share what you're taking? I'm not sure if you know that lupus isn't curable, but it is treatable and you need to take specific medications to keep under control IF NEEDED. Your Doctor will be the best person to make that decision. Most lupus patients take plaquenil at a minimum with their lupus. Others take a bunch of medications.
Lupus varies from patient to patient. It can be mild in one person and severe and life threatening in another. We have a member here who is waiting for a kidney for a kidney transplant. Yet, we have another who had a severe case where he was paralyzed and is now medication free. I'm hoping Bill will be along to give his story to you.
Are you seeing a Rheumy to treat your lupus? If not I would make sure that you get one that knows how to treat lupus and auto immune disorders. They are the ones who are best qualified in prescribing medications that will keep your lupus quite.
I'm sorry about your friends, lupus can really take a lot away from us. Once your pain and symptoms get better you'll begin to feel and may make new friends. If you have any questions please ask away. This is a great bunch of folks and there is bound to be someone who can answer any questions you may have.
Again welcome to the lupus forum, looking forward to getting to know you better. Please let us know how you're doing.
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.