[brookevale]

Hi,

My story is a long one so I will try my very best to shorten it. It was recently confirmed through a nerve biopsy that I have severe small fiber neuropathy. I already knew this but of course you have to convince the doctors I guess. First let me start off that I am not diabetic. If anything, my sugar is low (70-90). I was very ill from 2011-2012 with Sphincter of Oddi Dysfunction, a disorder in which the pancreatic and biliary valves were spasming shut. I went from 130 lbs most of my life to 90 lbs and on feeding tubes. I nearly died and went a year before a doctor performed the diagnostic test (they really thought I was a crazy anorexic woman). I had major open abdominal surgery last year to have sphincters sewn permanently open. Two weeks later I got sepsis, had a 106 degree temp, and my adrenals failed. I was given a hefty dose of steroids and Levaquin. A few weeks later I couldn't walk. My tendons in my ankles and feet felt like they were being ripped from me. Then I developed burning painful nerve pain in my feet, inner thighs, and hands which was worse after eating.

Fast forward, all roads lead to Fluoroquinolone Toxicity. I never had a nerve pain in my life before. But, doctors won't confirm this and there is no cure/treatment. Today, my tendons are better, but every time I eat my feet burn and throb to a 7-8 out of 10 on the pain scale. I have tried Lyrica, Neurontin, and Cymbalta. They did nothing but give me terrible side effects. I went through the horrible withdrawal of Cymbalta recently and am now on a different gabapentin drug, Horizant. I think it helps bring pain down to a 6 (whoopee). I see a dozen specialists and none can get to the exact nature. None of these dopes will prescribe pain medication either. The neurologist wanted to apply Qutera patches (prescription strength Capsaicin) but it turns out they are $1500 and I have a prescription max so that is out. Next is to see about a nerve stimulator. Anyone have success with this? I am so angry I can't get pain relief. I have spent thousands of many we don't have on acupuncture, hypnosis, supplements, naturopaths, etc. Lidocaine patches do help a bit. This is so depressing and scary!