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  • From: benbren121866
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  • 1 of 2
  • 1/5/09

I have it all!  Started with Trigeminal Neuralgia in "86.  Used tegratol for many years.  Surgery at Duke to clip and wrap 5th cranial nerve in December 1994.  Pain-free for about 5 years.  Another procedure at Duke (Feb; somewhere between 1999 and 2001). This one called Radio Frequency lessioning.  Sudden electrical pain stopped, but was replaced with Antithesia Delorosa.  It is constant and extremely uncomfortable. I've tried many different short and long term pain meds.  The only thing that helps when it is unbearable is to take enough meds to make me sleepy and go to bed.     All this was on the right side of my face.  Dec. 2006, I started with the stabbing, electrical pain in the left side of my face.  It is not constant.  In fact I sometimes go months without a single pain on that side.  Then it will flare and I cannot stand to even brush my teeth or do many other ordinary things.

About 4 years ago, I learned I had a thyroid deficiency, now take Synthroid.  Then 2 years ago I was diagnosed with some sort of arthritis.  Looks like RA with the swollen joints and joints that fused together and quit working altogether.  But, blood test do not show RA.  Also have mild sjogreens and fibromyalgia.   I have taken a number of different meds for the RA.  Now taking plaquenil, evoxac and ultram for RA.  Also just began Remicade infustions Dec 17. Had another Dec 31.

Here's the bottom line: My face never quits stinging, burning from the Anthesia Delorosa.  The RA is continuing to work on my hands and feet.  Most mornings it is hard to get up and moving and my hands fingers look more twisted everyday.  I drink at least a gallon of fluid everyday and fear the diet sodas (75% of fluids) are harming me.  I cannot pick up or hold heavy pots, dishes, etc.  And I cannot sleep at night because I cannot get comfortable.  Something hurts all the time.

Am I doing enough for my RA by taking all my meds, remicade infusions, keeping all appointments for exrays, labs, etc.  Also, what in the world can I do to keep my face from stinging 24/7?

Thanks for your attention and reply.

bms