f my life the same way, but I've been diagnosed with Sjogren's Syndrome - Primary. The Primary means that Lupus is not included in it (yet), but then why did the rheumy provide me with both pamphlets??? Anyway, I'm on medication for the Sjogrens. It is an autoimmune disease where your own body attacks it's mucus membranes and dries them up along with other organs such as your kidneys, heart and lungs. Sjogrens also causes "chronic fatigue along with inflammation inside your entire body)! I've been like this since 2003. The Salagen causes problems with my eye sight and so does the pain med. The pain med causes dizziness and nausea, but does reduce my pain so I'm not in so much pain. I'm not hungry but I'm gaining weight!! I don't go one day without feeling dry, tightness in my muscles, pain in most of my body, and stiffness and pain in my joints along with sleepiness, but I can't sleep at night! Now after mental testing they've diagnosed me with Schzieoaffective Disorder (in other words they think a lot of my pain is in my head!), Undifferentiated Somatoform Disorder and Cognitive Disorder - Subtle (which means I'm in a low profile of those with a Cognitive Disorder). I have had sciatica pain since having a neuro testing done for nerve pain over six months ago. I'm having trouble walking, bending over and standing back up and using my arms to lift, open jars, bottles etc. I have no strength in my body to do much of anything and I used to do Swedish Massage before I got sick! I'm also on Thyroid medication for low thyroid but it's normal now. I have outbreaks of blisters on my skin that sting and bleed. I have "visions" which the doctors are calling psychotic episodes...then how come most of them come true? And now I have a very high level of emotional stress that is causing anxiety attacks. My doctor says we can keep going up on the pain meds...but then the side affects get worse and when I try to back off of them my pain gets worse. I can't think most days I'm in "Brain Fog" and I want my old self back!! I feel like I'm slowly dying. I'm in bed a lot of my days, I try to do household things but my energy level is so low, they call it "chronic fatigue". Some days I can't keep my eyes open even though I want to stay awake. And I'm getting very angry now after all this time. I've tried to be patient, most days just trying to do what I can, then I have days like today when I get angry and impatient...I ask God "how much longer Lord?" I've had MRI's of my brain and EEG along with numerous other tests and everything looks okay says the neuro doc. I've had MRI of my hypocampus and all looks good. I have arthritis in my C-6 (neck) and my L-5 (lower back). But nobody is treating me for these except the pain meds. I have a life but can't function in it! Anyone have any ideas?[/QUOTE]

My mother suffers from the same horrible symptoms u describe. She says sadly that she feels her life is over. OMG what a thing to say, but the constant burning in most of her body has robbed her of the quality of day to day living. I and the rest of our family are very upset and very depressed about all of this. Is there any hope? Anyone out there with ANY suggestions? Please it really is a matter of life or death. Thanx!