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Old 02-01-2009, 11:27 PM #11
jsrail jsrail is offline
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Join Date: Aug 2008
Location: Scottsdale, AZ
Posts: 94
15 yr Member
jsrail jsrail is offline
Junior Member
 
Join Date: Aug 2008
Location: Scottsdale, AZ
Posts: 94
15 yr Member
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Mine seemed to come on slow for the first couple years, mostly pain and tingling in my feet and hands, nothing I couldn't live with. In the last 2 years, the pain and burning increased intensly in the feet and hands with the worst coming in the last 4-5 months. My bum started to burn, then the burning and pain started moving up the legs and arms. Now my entire body surface feels like a bad sunburn, even scratching an itch is very painful. I wake up 2-3 times a night with heavy sweating, though I am feeling cold. My legs below the knees and my feet constantly feel like they are always cold (sometimes like they are in a block of ice) even though they couldn't be that cold (I've tried it with warmed socks-same cold feeling). My legs have intense pain and burning during the night and mornings which often makes me unable to walk or stand up, even to the point of almost making me cry! I have dizziness, balance issues, even to the point of needless babbling about things (i.e. "honey, did I lock up the boat before we left"...we do not own a boat). I can't stand for any length of time and can only sit for about 30 seconds before my bum is burning intensly. My only best position is lying on my side in bed! Typing can't be done long before it feels like tapping on sewing needles! I have constipation, difficulty in starting urination, etc. I currently take 3600mgs a day of Nuerontin and 30mgs a day of Methadone. I take a 3 day "drug holiday" per my neuro doc every month to aid in the tolerance issues. By day 2 I cannot get out of bed except to go to the bathroom. The Methadone is not working very well anymore at the current dosage. I am making an appointment tomorrow to see my neuro doc (hopefully sometime soon), but he doesn't seem that interested in me, in fact he said he just sees me because he must every 6 months due to my Methadone Rx. He says he believes my SFN is degenerative in origin and gives no other explanation nor has any interest in doing anymore tests. I guess its not a "cool enough" disease for him!

Most of this bad crap has come on very strong in the last few months (say the last 4 months). Very, very fast! I would just about give anything for 30 minutes without pain! And I am only 47 years old. My son cannot ride piggyback on me, nor high-five my hands at age 6! I am very frustrated and angry, there is no time during the day (not even 5 minutes) without some level of pain (and its mostly a 6-9 on a 10 scale). I am tired most of the time and cannot work anymore (starting the lovely social security disability claim now) even though I sit at a desk all day. It puts me in a lousy mood alot. I do not show this emotion around my son, but my wife notices the change in me and I fight daily to be more upbeat about my condition.

I don't know what to tell ya, just try to hang in there. It can come on slow and even stop the progression sometimes, but cases like mine seem to just be a steady progression of worst to worser and short bursts. Hopefully your case doesn't follow my path.

Jay
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