I'd like to offer some HOPE.....
...for those new to all this and who are suffering....
I was diagnosed with Lupus, Sjogren's, APS and Raynaud's a year ago after several years of suffering. When I was diagnosed I was pretty disabled by these diseases - I see that now. I was in a fog back then and my symptoms came on gradually over about 5 years, so along the way I just kept pushing myself and "normalizing" how I was feeling because the doctors said there was nothing wrong (of course, in my heart I knew better - but sadly I listened to the doctors above my own body).
My fatigue was so severe I sometimes had to pull over and sleep halfway through a half-hour drive to and from work. I work only part-time, and had to drink huge amounts of coffee just to get through two to three hours of work - then I'd get home and collapse for 5 hours - then drag myself PAINFULLY off the couch to make dinner, then I'd be asleep by 9pm - sleep for about an hour and then toss and turn - night sweats, body pain, etc. I look back at it all now and want to cry - I really was being SO STRONG by simply carrying on with 'normal life', but I kept beating myself up for being lazy. I wasn't lazy - I WAS SICK. I can see that now, and it breaks my heart.
Anyway - I'VE BEEN THERE.
Now, a year later, on Plaquenil and Methotrexate (both of which I really feared at first) I feel SO MUCH BETTER. It has been a long year with a zillion appointments, and ups and downs...I have had flares, I lost my hearing in one ear to autoimmune inner ear disease, and I still have bad days - but the bad days aren't NEARLY as bad, and most days I feel almost totally normal.
I am protective of my sleep - I make sure I get enough because if I don't, the diseases creep back. I am on a special diet under my doctor's care because some foods trigger the autoimmune process in me - if I cheat, the diseases creep back. And sometimes they creep back "just because"....they are not GONE, but they are not running my life anymore. I think of them kind of like a sleeping dragon inside me...the drugs I take and lifestyle choices I make lull it to sleep. I am aware that it can stir, or awaken, and I know I am not cured - but I feel so much better. I am sure I will have bad times with it again - but right now, I feel better than I ever thought I would and I am SOOOOOOO appreciative of any "good days" I get.
So please work with your doc to find the right meds and stick with it and PLEASE HAVE HOPE that you can get a lot of your life back. Sometimes this road is very dark - get support, advocate for yourself, and find the right doctor. It can make a world of difference!
The Following 6 Users Say Thank You to SleepyInSeattle For This Useful Post:
Derrie (09-12-2012), jmail (09-13-2012), Leahc (09-13-2012), Saysusie (10-10-2012), steve.b (09-12-2012), tgal (09-12-2012)