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Hi everybody I am new to the site but not new to Lupus I was diagnosed in 2009 and until just recently I was lucky I guess in that I only dealt for the most part with skin issues. However, my sister and best friend took her own life at the begining of this year and since then it has been bad headaches nerve pain in both my arms and legs my hands and feet feel that way most days I have had to go on disablity through the state and they say it is CNS Lupus. I am afraid because nothing they do is working to get it under control it only seems to continuely get worse. Now I am having sezuires and can not even drive due to them.....anyone have any suggestions or insights it would be is nice not feel alone in this fight.

5 Replies

Im so sorry for your lost and sufferring ,you are facing..I too have serious skin issues..very painful..i get nerve pain too..what test was given to know you have cns lupus...i wish i had some words or advice to help......just keep fighting..and i will do the same......godbless


Hi Newbie

PLEASE PLEASE do not despair - that is exactly why we are here.

Even though they say it is CNS Lupus- you can feel better on so many ways and I for one is here for you..I really do understand your despair- gone through it myself, but please, hold on , things CAN get better with the right treatment. What have they said at your treatment centre/hospital, what is the treatment plan? Are you getting steroids/methotextrate ? You are not alone- please just remember that- and tonight, although I do not know your name I will pray for you... Talk to me whenever you want - together is always a better way.....


Hi Amy, so sorry for your loss, cant begin to imagine how your feeling or coping, I only joined this site myself a short while ago & have found it comforting. You are not alone, welcome


hi amy, sorry to hear about your loss (have been thru it myself 3 yrs ago) if u need to talk feel free to drop me a inbox..same goes if u want to off load about the lupus too, this site is fab for bein able to talk to ppl who know what you r goin thru,

take care,

lucy x


I am new to the world of Lupus...still having a bunch of tests after a positive for Lupus. I have also been diagnosed with Fibromyalgia, Lymphedema/Lipedema and they were planning to take my license because an EEG revealed seizures, but a four day video EEG with monitor revealed seizure activity but no full seizures so I still have my license as long as I agree to use caution. Right now, I am sick as a dog with a terrible head cold full of sinus and nasal congestion and feel awful, praying it passes soon. No medicines for colds,no cures and I really don't like medicine much but I prefer feeling well. My deepest condolences on your loss. On my fifty first birthday, I lost good friend when she passed in her sleep. Five months later in Feburary, another mutual friend (and very good one)chose to leave this earth and then I had an umbilical hernia repair in March and got pneumonia. I was so sick, in a hospital bed over three weeks and nothing wanted to work. Only the grace of the good Lord saved me and kept me alive and in psite of it all, I feel better than I had in years. A week after I got home from the hospital, another friend (also friends with the other two ladies,we are all writers)decided to check out. I thank the Lord for keeping me here and placing a desire to live in me. One thing I have learned with all these illnesses and afflictions, NEVER GIVE UP and keep the faith.I will keep you in prayer.


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