I am Walter K. I have peripheral neuropathy. I would like to know if A

Teresa: When you can find the list of Neuropathy Relief, would you please send it to @walterk?
Walter K: so many of us have different degrees of this discomfort and find relief in different solutions. It won’t be lasting relief, but will keep you sane. I am sorry you are experiencing this discomfort.

Walter, I hear you and I sympathize with you because I was also recently diagnosed with idiopathic peripheral neuropathy. Neurologist who diagnosed it basically said it is what it is and provided no assistance in how to address it. He did allow me to ask questions but I was somewhat dumbfounded with the diagnosis and my mind was elsewhere. These forums have been a big help to me in the sense that we are directed to excellent articles, research and updates on neuropathy. As dbamos1945 mentioned, we find relief in different solutions. For me, my pain is when I go to bed at night. My feet sometimes feel like they are on fire and sometimes are very sensitive - so much so that the touch of a bedsheet makes me want to scream. For me, 300mg of gabapentin before bed time has made a difference and allows me a good night sleep. I also just started taking 115mg of R-Lipoic Acid during
the day but too soon to see if this makes a difference. Some people, including a physician or 2, have recommended drinking tonic water because of the quinine in it. Believe it or not, that did help me somewhat!

I was given the diagnosis of idiopathic poly neuropathy in my feet after seeing several neurologists and 2 neurosurgeons over the course of several years, and every test they have at their disposal. I was basically told to just deal with it.
I'm currently taking 3600mg of gabapentin and 1200mg of alpha lipoic acid every day to dull the pain.
There is no cure for this condition.

Hello @walterk, I would like to add my welcome to Connect along with @dbamos1945, @mikead63, @mrmacabre and others. The Foundation for Peripheral Neuropathy has a good list of treatments that it might be helpful to look through - https://www.foundationforpn.org/treatments/. They also have a lot of tips and suggestions for living well with neuropathy, including complementary and alternative therapies - https://www.foundationforpn.org/living-well/.

I think we each need to be our own advocate and search for something that will help as there really is no cure for neuropathy but there are many different treatments that members have found helpful. If you want to scan through the related discussions started by other members who have also asked the same question you have, here is a search link that lists the member discussions and comments for "neuropathy what helps" - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

I wonder the same thing, Walter, and I am very frightened of what the future holds.

Hello, Walter (@walterk)

Welcome to the Forum!

In addition to the suggestions others are making, two books that you might find informative: "Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won't Stop" by Norman Latov, M.D., Ph.D.; and "You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Full Life" by Mims Cushing and Norman Latov, M.D., Ph.D. I found used (but clean), affordable copies at one of my favorite online indie bookstores.

I wish you well!
Ray (@ray666)

I have suffered with idiopathic neuropathy for over 15 years and have spent a lot of time and money trying to relieve my pain. The first neurologist told me to live with it, well, I did that for 10 years until the pain continued to get worse so I saw a Pain Management physician. He started me on Gabapetin which I stopped taking after a few days because of the side effects. He then put a spinal stimulator in my back that helped for 4 years but then it stopped working and the company that made this product stopped calling me. I think they grew tired of my calls and left me to fend for myself. My physician told me to keep calling the support team but no response. My second Neurologist put me on Gabapetin again and then switched to Venlafaxine. Side effects were horrible and I gained over 20 pounds in a couple of months. I stopped those pills and went back to the Pain Management Physician. He now has me on 300 mg of Tramadol a day which is not working. I can’t believe an opioid cannot relieve some of my pain and anxiety. I have spent $100’s of dollars on creams, vitamins and minerals with no success. I joined this site today to see if there is another way to deal with this monster. I was wondering if anyone has tried magnesium? I have not tried this yet and it could be a another failure but I continue to hope.
I did see another Neurologist this past fall and he suggested I give up my evening cocktail. He told me for someone like me, just a drink every day can lead to neuropathy. He also said since I have been having a cocktail each evening for over 40 years, I’m now 76, the damage has been done and I will not have any relief. I did give up my cocktail, it’s been 3 months but there is no relief from that suggestion. It continues to get worse and my days are spent sitting in a recliner reading or playing games on an IPad. Walking is so painful, I don’t go shopping anymore. My husband does all the grocery shopping and cleaning and thank God for him.
I look forward to hearing about your experiences with neuropathy. As I said, it’s a monster to live with.

Hello @nebrannie49, Welcome to Connect. Sorry you haven't found anything that touches the pain. I'm fortunate in that I only have the numbness and some tingling but no real pain other than the minor joint pain from arthritis. I shared my neuropathy journey story along with other members in another discussion here - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

I also gave up on alcohol although I don't think there is any proof that an occasional drink makes things worse. I just felt it can't make things any better either. Sugar is another culprit and I do try to cut back quite a bit on it but haven't completely eliminated it. Walking is difficult for me also but it's because of my back and spine issues and not the neuropathy. The neuropathy does play havoc with my balance though 🙃.

I know you've probably looked through a lot of info trying to find something that helps. Lots of good information here - https://www.foundationforpn.org/living-well/. Have you seen the Foundation for Peripheral Neuropathy?

Hi @anneloveshorsres, Welcome to Connect. You are definitely not alone. We've all been there at one time or another wondering what the future holds. Have you been diagnosed with neuropathy? Do you mind sharing what symptoms are the most difficult for you to manage?

Mike. 115 mg of R-Lipoic Acid is a very light dosage. If you don't feel numbness fading at all, consider increasing to 300 mg. I'm now taking 600mg and believe it is holding the advancing numbness at bay. (85-year old male.)