← Return to Past Discussion: test to determine cause of Small Fiber Neuropathy

Discussion
Comment receiving replies
@johnbishop

Hello @lexilulu, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm really sorry to hear you have burning pain in your feet with your neuropathy and now it's starting to go up into your calves. I only have numbness with mine. There is another discussion which you may want to read through the member posts to see what they have shared helps them and a few other discussions that also might be helpful.

— Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
— Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

This may answer your question on Mayo Clinic treatments for neuropathic pain in the treatments section – Peripheral neuropathy – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

Can you share a little more about how your neuropathy was diagnosed and how long you have had it?

Jump to this post


Replies to "Hello @lexilulu, Welcome to Connect, an online community where patients and caregivers share their experiences, find..."

The supplement recommendations discussion is great, John, thanks!

Have had it about 2 years now. It took forever to get a diagnosis. My physician sent me to Spine Clinic. I had 3 different tests & passed all of them. So they sent me to a Podiatrist. He said it was in S1, the sensory core in my spine. I have problems L4 & L5 as well. He sent me to the Pain Clinic. They gave me an epidural that helped my back, but not my feet. After this I got referral for a Neurologist. They did a circulation test that turned out fine. With the paperwork I filled out, he said I had SFN. I was already on Gabapentin, max dose (4-3x a day). He took me down to 3-3x a day & added a anti-seizure medication, couldn’t tolerate pain in stomach. He prescribed a different anti-seizure medication… same problem. Then he prescribed another type of medication that caused me to be a total zombie, weighted down & couldn’t function… stopped that & he prescribed same type of drug but different one, same thing happened. There was nothing else he could do. I decided to get a 2nd opinion & went to another Neurologist & he was of no help either. They just want to push drugs. I went back to Pain Clinic, as the dr there told me if I didn’t get answers he could help as a last resort… a Spinal Implant. I put in for a pre-authorization to insurance, but in reading about this I was too scared to have it done & decided against it. Went to a Chiropractor who was Certified in Peripheral Neuropathy. I went with his program, very pricey, but it helps a lot. I have a Re-Builder, where I put my feet in water w/ electrodes that restore your nerve fibers; an Infrared velcro sock & calve that helps w/ circulation; and a massager for circulation. The only thing I can do is the Re-Builder, which is the most important. It really calms my feet down. Thirty minutes in morning & in evening. I also do the Infrared Velcro Calve strap 30 min on ea side. I am unable to tolerate the infrared foot pad & the massager, as it burns my feet & flares it up worse!!!!! I’ve had significant improvement, but am still suffering badly. It’s very life altering. I will put my feet on large frozen flax pillows when I need them while sitting & have to have them to put feet on when I go to bed. I can’t elevate my feet w/o flaring them up burning. I am pre-diabetic & take Metformin for approx. a year. This has been SO mentally hard!!!!! I’m very scared as SFN is a progressive disease, not curable & is fatal. Yet I’ve asked what I can expect & Neurologists will not answer my question because they say everyone is different. I can’t imagine burning pain in my body & arms as well. I’ve read so much on line & get no where! Help, anybody!!!!! I don’t drink, have always exercised & watched my diet my entire life, don’t smoke & am 64 yrs old. WTH did I do to get this?????