Hi - I posted this today in the new members area, and am posting here as as well.
I am new to this forum. I’m 46. My small fiber neuropathy symptoms began suddenly in April 2012. The symptoms started in my feet and then spread to almost my entire body within a 2-3 week period.
My current symptoms consist of pain, burning, pins & needles and tingling in my feet (wet, liquid, cold), calves, thighs, hands, arms, torso and sometimes face – essentially over most of my body. The surging of pain, tingling, pins & needles, etc is so bad it causes my thighs, torso and arms to shake. My symptoms appear to have worsened in the last few months and it is severely disrupting my life.
My sleep has also been significantly disrupted by the neuropathy and also by ongoing back issues, which are both worse at night.
I initially saw a neurologist at a renowned national center who thought my condition would resolve quickly given that it had come out of nowhere and progressed so rapidly. He thought it was some variation of Guillen-Barre that would likely fade out as quickly as it came, but that didn’t happen.
I’ve tried Neurontin, Nortryptyline, Tramadol, and Cymbalta and none have been helpful. I also did a 5- day course of IVIG which had no effect. My neurologist is now out of ideas, so I am now seeing a new one who seems to be aggressive in trying to address these issues. I had an initial appointment a few weeks ago and am going back next week to hear her recommendations. I’ve had the full battery of testing done by both doctors to search for a cause but none has been found. I’ve also had 2 skin biopsies which confirmed the diagnosis. I am taking alpha lipoic acid, acetyl L-Carnitine and other supplements like a multi-vitamin, Vitamin E, fish oil, C, and CQ-10.
Now that this hasn’t dissipated and appears to be getting worse, it has turned my life upside down. I’m not sure that I’m asking for any advice, but wanted to join the community and see if anyone has ideas. Thank you.