Living with Neuropathy - Welcome to the group

Hello @safetyguy72, Welcome to Connect. You are definitely not alone and there are quite a few other members who share your symptoms. I have idiopathic small fiber PN myself but only have numbness. There is a wealth of patient experience here on Connect so we are glad you are here with us. Here are a few other discussions that you and @constitution may want to consider following and posting any questions you may have.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

@rwinney @jesfactsmon and other members may have some thoughts or suggestions for you.

You mentioned going to pain management for two years. Do you mind sharing a little more information about what they tried to help with the pain?

I take 900mg of Gabapentin daily. Plus, 50mg of Amitriptyline.

Thanks. Yes I had back surgery, but it was 6 months ago.

Hi and welcome to Connect @safetyguy72. I'm sorry to hear of your neuropathy and problematic feet. I have Small Fiber Polyneuropathy and went through a period of cold flush down my legs, among other oddities. Connect members have mentioned their experiences of water dripping down legs. Do you take Lyrica or Gabapentin for these nerve misfires? Do you take supplements for neuropathy? I have found benefit from Acetyl L Carnitine and Stabalized R Alpha Lipoic Acid along with B12, magnesium and a host of other vitamins and minerals found in the "Protocol". It is a supplement regimen that I began last September and have found between it and Lyrica, my odd sensations have reduced greatly. I understand when you say you've actually felt your leg for water! I have looked, felt, looked again at many weird sensations. It's wild that our nerves can mess with us like that.

@constitution Interesting about the compounding product you talked about. Yesterday I had my yearly contact with my cardiologist via telehealth. Could not understand how he could say my heart was good when we were on the computer. Guess he can see. /actually hast year I had an echo and it was good I guess. Anyhow we got talking about my neuropathy. I asked him if the pain I experience daily which sometimes brings tears to my eyes is all neuropathy pain. He said it could be because neuropathy can be very painful. Anyhow, long story short. After going through my medications and looking at the topicals I use he made a suggestion. Aloe gel. Yes. It has lidicaine. I tried it last night and today and it really helps. No I didn't want to dance, but it was helpful and I will continue using it. I just put a little on the top of my foot where it is so painful and it helped.. What you are using sounds great.

Hi @safetyguy72 I am married to someone who has had neuropathic burning in her feet from chemo for 6 years. Early last year it kicked up to another gear and she has been in much worse shape than before. She tried gabapentin and it did not help her. She has not tried other drugs so far as she is very susceptible to side effects. She might eventually try getting a nerve stimulator which several people who post here have tried with varying success. If you would like to read posts by various people who discuss their experiences you can put the word 'stimulator' into the search bar at the top of this (or any) page and you will see a lot of them, which you can read as you like. I have been hopeful for a new treatment coming online related to sodium channel blockers which can block the pain signals from being perceived by the brain. I did a write up on that myself which you can find at this link:
https://connect.mayoclinic.org/discussion/vgsds-a-potential-breakthrough-on-the-horizon-for-neuropathy-pain/?utm_campaign=search

In case you are interested I have heard of other things for people who want to try to get adventurous. I do not know personally anyone who swears by any of these, but I have read positive anecdotal accounts about some of them:

-scrambler therapy using a device by Calmare company from Italy
-acupuncture
-chinese medicine
-infrared light therapy
-homeopathic remedies made by a naturopathic doctor

I hope you find relief for yourself. It's turning out to be quite a journey for my wife and I, and not a terribly pleasant one at that. If you have any other questions or comments feel free to post them here. You will find an attentive and sympathetic audience with this group of very excellent fellow pain veterans.

Best, Hank

I have peripheral neuropathy - idiopathic sensorimotor axonal neuropathy. How much b12 is recommended daily? Thank you.

Hello @otisco, Welcome to Connect. I think the answer to your question could be a little different for each of us. I have idiopathic small fiber peripheral neuropathy and like others I take a lot of the same supplements others do. There is another discussion where members have shared their neuropathy journey and what has helped them -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here is an article that lists supplements and vitamins for neuropathy -- Which supplements can help with neuropathy?: https://www.medicalnewstoday.com/articles/326917

Are you able to share a little more about your symptoms and any current treatment you are on?

After bloodwork I was told 2000 mcg. The next bloodwork indicated my level was too high so I needed to reduce it to 1000 mcg. a day. **METHYLCOBALAMIN is the recommended form and My doctor also recommended the sub lingual form. I get the brand Solgar from Amazon. Apparently as we age we need to supplement B12. Unfortunately this did not seem to affect my peripheral neuropathy symptoms, but I still take it

I was told by both my neurologist and my internist that’s if my B12 levels were within normal range I did not need to supplement; I am 73 and I do feel that I get an adequate amount through my diet. I have been told by my neuro that a high level of B6 can negatively affect neuropathy so I occasionally take a low dose B complex. Helen