Just wanted to let you all know that there is hope.
In 2010 I was diagnosed with Lupus after many years of chronic fatigue, aches and pains, but now I am in remission and I've stopped all medication! The meds didn't agree with me anyway, so I was forced to try an alternative approach. I use acupuncture, diet, mindfulness and natural herbal medicine to treat my symptoms and I have had success. To be clear, I never had any organ involvement (just joints, nerves, muscles and tendons) and I had full support from my GP and Rheumatologist when weaning off my drugs. Initially I tried Hydroxy but just made me feel terribly nervous (like waking up with exam nerves every morning) and since I'd had a history of anxiety and depression I stopped taking it. Then I tried steroids, which I had a terrible reaction too (I became suicidal), so I was left with Naproxen, 500mg twice a day, but suffered side effects such as dizziness and bladder discomfort, so my consultant supported me in coming off those gradually. Now I take no Naproxen, and a year since I stopped taking it and used a natural approach instead, my ESR is the lowest it's ever been!
You will need support if making drastic changes to your diet, or thinking of making lifestyle changes. I found it difficult but now I've found a happy balance. I found that joining a buddhist centre and attending regular mindfulness meditation sessions really helped. I went gluten free 18 months ago, I avoid sugar and limit dairy. I make my own gluten free cakes with coconut sugar or honey. I use anti-inflammatory herbs teas (medicinal camomile, calendula and yarrow) and make ginger and manuka honey cordial. I still eat meat and seem better when I avoid eating too many carbs (grain based). I am better in winter than summer, as the UV does definitely have a negative effect on me and I can't do as much. I feel so much better in myself, more in control (rather than lupus being in control!) and I have more energy than I've had in years! I even talked to my consultant about the concept of 'recovery' and he admitted that he had seen people recover from Lupus.
If you want any info about any of this, I'll do my best to help you. In the mean time, here is an interesting TEDtalk to watch "How to make stress your friend" (trust me, it's very interesting!) ted.com/talks/kelly_mcgonig...
Hang in there fellow Lupies xx