Neuropathy Suffers

[MamaTrain]

Hello DINET!

I am inquiring about neuropathy for my best friend who has been suffering with some very disruptive symptoms. Here is what she has been dealing with for the past month:

started off with all over body itchy/sensitivity on the skin that would make her want to itch it

tops off feet/shins and tops of hands felt like they had a cold sensation like icy hot was on them

one incident where top half of body was very hot but lower half was not

moved to a burning sensation on arms, lower legs, parts of back

feels somewhat anxious but thinks it's from worrying about symptoms

She has seen a neuro and they have her on 200mg of gabapentin (Neurotin) 3 times a day, 1000mg of B-12 and are going to be testing her nerves with the EMG & NCS testing protocol. Does anyone have any good suggestions for her? What are the side effects some of you have experienced from the gabapentin? Any info would be helpful! Thank you so much!

KC

[Sallysblooms]

B vitamins are good, Alpha Lipoic Acid is very important. Antioxidents in food and supplements is very importnant. You also have to make sure blood sugar is never a problem, high blood sugar is bad. Smoking is also bad.

Lipoic Acid Supreme has good ingredients. Maybe the doctor can learn about it. Really important. The dose is critical. Most docs do not know about it which is odd. Even if it doesn't completey take it away, it can keep it from progressing. Good to try if you get the brand and dose correct.

[janiedelite]

The alpha lipoic acid hasn't been helpful for me, but the gabapentin sure has been. I'm on 600mg 3 times a day. The trick is to wean up slowly. Initially my side effects were spacey-feelings and slight disruption in equilibrium. My neuro told me it can take 1-2 weeks for the pain relief to occur. For me, I got an instant lessening of my pain. It's not gone, but there are times during the day that I barely think about it.

The gold standard for small fiber neuropathy is a skin biopsy. An EMG will show if there is damage to the larger nerves, but not the smaller ones. You can also do qualitative sensory testing (I think that's what it's called) where they test your sensation of heat, cold and vibration.

For me, my small fiber neuropathy pain started with itching at night in my feet. About 6 months later, my feet and hands and face started burning especially at night. Things that exacerbate it are activity (although some activity is essential to keeping my symptoms under control), stress, heat, and at night it's worse as well. Keeping your affected body part elevated helps, cool towels if it's hot, open shoes (I wear sandals all year round), avoid caffeine or alcohol, cooling vest, etc.