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Regular Member

Date Joined Jun 2008
Total Posts : 59
   Posted 9/25/2017 5:59 AM (GMT -6)   
Good day all. I hope this post finds you doing okay.
I have not posted for a long while.
I am a mess. I am tired, so very tired.
Our lives have taken a big hit and you know how lupus likes that...
Currently we work toward a new normal but my body is a mess.
Normally flares come and go and I have a tool kit to help the process along. Normally it is my brain that is my very best tool.
Nothing seems normal now though.
The flare has been ongoing for four months, and severe muscle/tissue involvement body wide including my head.
The headaches are such that I cannot lay down, even the skin and tissue on my scalp hurts, I can't lay on my pillow. So I don't sleep.
I am on 10mg of prednisone and Tylenol 3. I hate Tylenol 3 it helps the pain some but mostly it makes me feel sick and drugged.
The prednisone I giving me horrible dreams, all bits and pieces of just crazy thoughts. Snippets of nothingness that keeps me in a state of suspended animation when I try to sleep through the night. I awake in a sweat and crying trying to sort out the in sortable. For example, constant thoughts of the word "unhappy" and this morning a thought of "a half cup of oregano" nuts is that! And lots and lots more of these kind of crazy thoughts all jammed together equalling nothing.
My heart races and the fear of losing my mind is palpable.
I know that lupus has lots to offer with regard to the brain and cognitive
function....panic disorders, anxiety and worse....
I fear this so much as as mentioned it has been my brain that has been able to get me this far, and now am I to lose it? Then what?
What happens to a person with severe brain involvement? How bad does it get? Or is this just a bad flare and meds?
Thanks for being here and thanks for listening. Hangingon

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 9/25/2017 10:41 AM (GMT -6)   
Not sure what would be classified as "severe brain involvement". I had brain involvement to the point where neuropscyhological testing showed I'd lost 15 IQ points. I could not follow a 20-minute sit-com, read a book, or drive. Basically I spent my days and nights sleeping or trying to attend to basic tasks like showers, laundry, and food.

What kind of Dr are you seeing? A rheumatologist should be treating you with Plaquenil and one of these (Imuran, Cellcept, MTX). If none of those 3 have helped, there are even more serious medications. But you should certainly be given more than Prednisone and Tylenol.

I spent the better part of 3 years trying the different medications, etc, before Cellcept was my miracle drug and gave me back my brain. It couldn't give me back my business, my PhD, or make me run marathons again, but I have a grateful life.

Let us know what the Dr says.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde
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