Suggest Remedy For Severe Pain While Suffering From Lupus

Question: Hi. I'm a 47 year old female living in Michigan diagnosed about 8 years ago with Multiple Connective Tissue Disease (I have Sjogrens and a serum-negative ANA case of what seems to be Lupus). My case of lupus is not textbook perfect by any stretch of the imagination; I have a lot of joint pain (no RA appears to be present, although my dad had serum negative RA for MANY years before his rheumatoid factor showed up. I appear to have OA in several joints, ranging from mild to severe). My problem is that I didn't have a sudden onset of any disease. I was a VERY active and fit kid, adolescent, and young adult. Between the ages of 25-30, I began getting sick. A lot. Whatever was going around, I'd catch (and I worked with very young children with disabilities). I never caught the chicken pox as a kid, even though my mom made quite an effort to get me exposed (she want d me to get them over with). I never caught them, which was confirmed by blood test when I was 30. So I was given the chicken pox vaccine. I then developed chicken pox! Like I said, I started getting sick a lot. i also became fatigued, which was VERY unusual for me. I started having to cancel plans because I was too tired. Docs put it to my hectic schedule. I began sleeping instead of working out, or working out very minimally. My joints were sore and I was tired. It felt like the flu but it never went away. And then, as I was working on my PhD dissertation (I'm a psychologist), I had what my docs assume was a TIA. Follow up tests showed nothing, but neurologists thought I was having precursors of MS. But I had absolutely NO symptoms of MS. That was eventually ruled out for good. But I was still having pain and more and more fatigue, to the point where it was really up in the air if I was going to be able to go out after work. As my 30s wore on, the fatigue and pain got worse. My husband had to carry me to bed from the chair I'd plopped down on right when I got home. This started happening at work, too. I had to lay down in between seeing patients, and I often had to be helped up. My GP decided to pull me out of work. My rheumatologist and my Dentist confirmed Sjogrens (within a year and a half, I also lost all my teeth to dry mouth causing my enamel to disappear. I now have a mouthful of crowns). My rheumatologist started treating me as if I did have lupus and Sjogrens - I started on Plaquenil and Methotrexate. We eventually added Cellcept when my blood work started getting funky. I now show mild kidney failure, liver enzymes off, GFR ranges from 45-72 depending on the month, and my Sed Rate now runs from the low 60s to the high 80s (I know that's just a general measure of inflammation in the body, but since we have so little else to go on the looks like it's following the course of whatever disease is, we watch that. I'm also very anemic; my GP and rheumatologist agree that that appears to be anemia of a chronic illness. My point, and my ultimate question is that even with the treatments (oh, the one med that seems to be helping the most is Methotrexate), I'm getting slowly worse. I can no longer drive a car (because when I go somewhere, I have a tendency to run out of energy, and then I'm stuck at that place), I haven't worked for 10 years (and I miss it greatly). I MISS the "me" I was. I have lots of love and support from family and friends, which is wonderful. But what I'd like to know is why I seem to be declining? I now often use a wheelchair when I'm someplace I need to be for a while or that requires a lot of walking. Things like having my hair done wear me out, and I pay for it for a couple of days - I hurt so much, and I'm so tired, that I end up in bed for a couple of days. When I'm feeling ok, I try to do gentle exercises like yoga or stretching, or some very mild weight lifting. I wonder if you have any thoughts about why my health might be continuing to decline. My docs seem to be grasping at straws these days.