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Recently Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Jun 13, 2021 | Replies (24)

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@avmcbellar

Hi @athenalee I am so sorry to hear of all health issues you are facing. With a liver transplant do you need to be careful with medications that are broken down in the liver. Medications are either broken down in the liver or kidneys. Luckily you have the option of which medication for the proper breakdown route for you.
I feel you are exactly right. Everyone is different. To find help a person needs to experiment. Keeping a log is a great idea. Since doctors know very little about my illness, I have been able to find help for myself through my experiments. I find information through my physicians. I had concerns with my health which caused them to perform labs for answers. Now I am relieved.
How is the ALA working for you? I had discovered eating a diet with low carbs and performing exercises decreased my neuropathy pain. I also try various supplements. Although ALA was somewhat helpful in decreasing my neuropathy pain I had a burning in my stomach and stopped it. I came to a conclusion that eating a well balanced diet is more important. Many supplements that others found helpful, I did not. It all depends on each person’s diet. Last week I received my Fitbit. It offers tremendous help with keeping track of my exercise activities and other health information like heart rate, steps, calories( burned and intake), water intake, etc. I believe it helps me to meet goals and in the long run improve my overall health. I wish you well to find more answers for yourself. Keep experimenting. Toni

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Replies to "Hi @athenalee I am so sorry to hear of all health issues you are facing. With..."

Thank you Toni for your kind words. I’ve done extensive research on what conflicts with Tacrolimus…unfortunately many natural supplements I’d like to take. I’m not sure if the ALA is helping, doesn’t seem to hurt me, so I’ll give it a little longer.

I have very high levels of B12 for reasons not yet clear, so don’t take any Vitamin Bs other than biotin to counteract hair loss due to Tac. And, I have low platelets, probably an autoimmune thing, so I read that I shouldn’t take Acetyl-L-carnitine. Curcumin seems to have promise, but studies show it interacts with Tac. Have you tried it?

I do take fish oil, and I eat a lot of chia seeds, walnuts, and other things high in Omegas. I’d be curious if you tried N-Acetyl cysteine…I wasn’t impressed with what I’ve read about it.

Like you I’m a firm believer in eating well, walking, and exercise. Someone said walk backwards some, so I’m doing that and stair exercises for the balls of my feet, along with other foot exercises. John says keeping his feet moisturized helps him, so I started doing that every day. I’m hoping to get more answers with my upcoming doctors visits.

Take care and let me know if you discover anything helpful! Athena