[onebeed]

Just wanted to post this for all those on this forum who have idiopathic small fiber neuropathy. Big thanks to those who suggested getting a Lyme disease test, most especially LizaJane. I got tested and found out I do have Lyme disease and Anaplasmosis - a tick borne co infection. Read LizaJane's postings on how to get properly tested. Don't go to your GP like I did. He refused to sign the form to get the test. Found a good LLMD doctor and got tested properly, and now am being treated. My GP, neurologist, cardiologist, opthamologist never breathed the word "Lyme" to me. I did not even know Lyme can cause neuropathy. I find this shocking. Even more shocking is how little the medical community knows about Lyme. I have probably had Lyme for at least 20 years and had absolutely no idea. It was causing serious heart rhythm problems and visual disturbances. My neurologist never even attempted to find out what was causing the neuropathy. Both my neurologist and my GP had said that I would be in pain for the rest of my life and I was idiopathic and that was that.

My LLMD also had me tested for heavy metals. I was shocked to find I had high levels of lead, which can also be a cause of peripheral neuropathy. I tested the dishes I had inherited from my dear sweet mother in law and found them to contain lead! I had no idea! I had been microwaving on them and filling my food with leached lead for years. These particular dishes were the Currier & Ives blue patterned dishes from the 60s and 70s.

So, if you have been diagnosed with idiopathic SFN, keep looking. I don't believe this happens to us for no reason.

Also, don't let people drug-shame you if you feel you need drugs to help you deal with the pain. Some people make others feel bad about needing things like Lyrica or Cymbalta. Other people can have no idea how badly it hurts and some of us really need something to help take the edge off so don't feel bad if you need the help.

I am very grateful to the people on this forum. If it wasn't for this forum, I would have no idea that I had Lyme disease.