Recently Diagnosed with Small Fiber Neuropathy

Hi helennicola. Thanks for your feedback and sharing which is so helpful. I was fine for two days and nights and woke up today with a burning feeling in my left leg which goes away when I get up and walk around. No cold feeling, it seems to alternate. Be well and hope you continue to improve.

I read most of the posts on Mayo Connects relating to Neuropathy as it’s relatively new for me and still being diagnosed. I’ve determined that everyone seems to be different in their symptoms. Causes of neuropathy also are widely varied. As are what seems to offer at least some relief for some and sadly no relief for others.

I have an autoimmune disease that caused Stage 3 liver cirrhosis. I had a transplant in August 2020. In October my stomach was numb and I began having tremors. My liver doctors said the numbness was normal and tremors caused by one of my anti rejection meds.

Tremors continued to get worse, numbness went down my right leg, hands became stiff and tingling, sharp pains in my right foot and lower leg. Terrible back pain. Liver doctors said see a neurologist.

Following the Covid vaccinations my symptoms increased. Numbness now in both feet and legs and all other symptoms increased. The neurologist gave me a bunch of labs, said I probably have another autoimmune disease, and referred me to a rheumatologist and a hematologist.

I have an impeccable diet, low carbs, no refined sugar, walk at least 2 miles a day and exercise. I do Gabapentin for sleep and pain. Can’t do cannabis anymore, unfortunately, as it conflicts with meds, as do many other drugs for neuropathy pain management. I started the ALA supplement a couple of months ago.

So, I’ll continue to read the posts…the mentors and many fellow “posters” have fabulous ideas and words of encouragement; I keep notes to ask my doctors, and, I do a lot of research. I have visits with all three doctors next week. I’m sure I’ll have more labs done and hope for an answer and maybe a solution.

I think my best advice is to keep observing and experimenting as you are, keep notes of what symptoms you have and when they occur, keep reading these posts and ask your doctors about the suggestions that may be right for you, research if you feel up for it, and most importantly, keep positive as much as possible.

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

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