I'm sorry to hear that you have this horrible condition and haven't been able to find any relief. I urge you to try an integrative pain specialist because they apply both rx medications and natural therapies. Maybe call a handful of offices and explain your situation and ask if they treat this. Make a list of questions to ask ahead of time and don't worry about having too many. I've learned that wasting your money jumping from place to place just isn't worth it, not to mention all the bills adding up. My integrative pain specialist has agreed to work with my pain management doctor, PT, and PCP. I hope the information below helps you and anyone else that checks it out.

Dr. Tennant - http://www.arachnoiditishope.com Under 'Medical Care Guides' you will find the medical guide for care and self-help guide. I urge anyone that has neuropathy, Tarlov cysts, arachnoiditis, and any other nerve pain disorders to do some general reading on this site. All nerve realated diseases/conditions have similar symptoms and some of these treatments may help you. After I started reading I could't stop. I think I read everything on the site. One important thing they recommend is to print some of the guides and other info. out and bring it to your doctors for consideration. maybe if they are willing to take a look they will be open to other treatments.

Eliminate Nerve Pain Naturally:
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally
Alpha Lipolic Acid 300mg 2x per day
Acetyl-L-Carnitine 2000 mg per day
Inosistol 500-1000 mg per day
Vitamin B6 50-100 mg per day
Vitamin B12 500-5000 mcg per day

Take care and let us know if you find the info. informative and if you try any of the treatments.