[Sandy04029]

Hi everyone. I have just joined this support group. I have read a few of your posts and wanted to add my experiences with the hopes that someone has had the same experiences and can tell me what to expect. I began to experience the pain/tingling/numbness in January of 2011. By March it was so bad that I was hobbling all over the place, could not stand to have the sheets on my feet, etc. I talked with my neurologist and he started me on a low dose (75 mg) of Lyrica. My SFN has progressed as it seems to do with everyone. I have been taking 600 mg of Lyrica since approx. 2013 and have tried everything else from Gabapentin to Keppra with no relief except for from Vimpat. I still take 600 mg of Lyrica but cannot take the Vimpat because although it helped tremendously, it was extremely expensive and it made me so loopy I shouldn't have been driving or working and actually lost my job at that time because I shouldn't have been working! I also take Hydrcodone, 10 mg. several times a day. I had back surgery in 2013 and 2014 but my neurologist has said my neuropathy is NOT related to that at all. I am not diabetic. I have had numerous blood tests and I have had the biopsy done and sent to Johns Hopkins, who found nothing wrong. This is the most painful thing I have ever experienced. Right now though most of the areas of my feet feel totally numb, I still experience "break-through" excruciating pain. I also have numbness running up the side of legs from my feet towards my knees, but thankfully no pain there. My greatest fear is that some day I will no longer be able to walk and will end up wheelchair bound (though my neurologist assures me he has never heard of anyone with SFN ending up in a wheelchair!) Who has had SFN the longest on this forum and who takes what drugs with relief? I promise not to be so wordy in future posts. Thank you in advance for your replies!