Sue,

It sounds like you have a lot to deal with, having CNS lupus as well as Sjogrens.  Not to discourage you from posting here, but you might also want to find a lupus forum and post there.  I'm sure there are many to be found on the internet. You might find somebody whose lupus has attacked their CNS as yours as.  

I don't know if you will find anyone on this site that has lupus, but there are people who have neurologic autoimmune diseases that have symptoms that wax and wane just as your lupus symptoms do.  I guess that is pretty typical of autoimmune diseases in general.  I have been sick for about 13 years and have read everything under the sun/on the internet regarding autoimmune diseases, including the connective tissue diseases/lupus, because I initially thought I had a CTD.  I still am not sure what my dx is, but hopefully will be finding out in the next couple weeks.  Most recently, after reading more and more, I thought my symptoms were most consistent with MS with an autonomic neuropathy component, but I just returned from Mayo and the neurologist there thought my symptoms were consistent with something called autoimmune autonomic neuropathy.  I left without a dx, and hopefully will hear the test results soon.  I know I have autonomic neuropathy already, just don't know what the cause is.  

As far as exercise, I am the same way.  When I feel well I walk three miles almost every day.  I had gained a LOT of weight and developed severe sleep apnea because of it.  I couldn't tolerate the CPAPs.  I already have something wrong with my breathing/weak chest (possible diaphragm involvement), as well as asthma, so that made my breathing problems worse.  I decided about 16 months ago that I had to do something about it and started walking almost every day and eating a mostly vegan/low-cholesterol diet, etc., and have lost most of it.  The way I figure it is I want to do what I can to make my body healthy in general (when I am able/feeling well enough) because I can't do anything to stop whatever disease process is going on that has made me sick for so many years.  I can walk three miles a day one week and the next week, if I have an exacerbation, be so faint, light-headed, short of breath/breathing slowed down, that I have trouble getting through the day much less walk.

I saw what you wrote about prednisone (blood sugar levels, osteoporosis, etc).  I guess that is the unfortunate down side to being on it long-term.  It's really not much of a choice to have to choose between a drug that is so harsh on the entire body or exacerbation of one's awful disease.  I am hoping to God I do not have to go back on this drug myself.  What is the highest dose you were put on and do you get maintained on a lower dose?  You mentioned you are on it chronically, so I wondered how that worked.

hi,annie the methyleprednislone was 1gram and 5 days.I also took up swimming due to not being able to walk without chronic pain so swimming was the right exercise and also weights is easier as don't have to move and sit while doing the weights.I have found walking difficult since 1992 after birth of my youngest daughter.The higest dose of prednisone i have had is 80mg and yes i was able to taper down and be on 20mg with other medications,This illness took over me on holiday in spain in hot weather i think and wish i had never gone now.Not been well since september,Just wish i could get back to my swimming and at least feel steady enough to even get out the chair alone.I have health service help while i am ill and husband at work emergancy alarms etc. I also had brain operation in 2001 due to intercranal pressure it was up to 36 while the norm is about 16 i beleive.I am on the lupus site but not alot known about the CNS Lupus i was just wondering if anyone on this site has more knowledge.Thanks for any replys all helps.

bye for now sue xx