@venki

As far as I know, neuropathy is progressive. The neurologist started me on Axathioprine recently, which is supposed to slow the progress.

Are you seeing a neurologist? Between the neurologist and the pain specialist, they're doing all they can for my pain. There are many neuropathy medications that could help you.

Jim

That is very interesting JIm....I am seeing a rheumatologist in a couple of weeks to see if she can help with the neuropathy. I will see what she says about Axathioprine.

@jimhd - did you mean Azathioprine? I wasn't able to find any drug information for the Axothioprine but did for the Azathioprine. It will be interesting to see if it helps with the horrible pain that a lot of people with neuropathy have.
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Azathioprine-Imuran
When I was first diagnosed with small fiber peripheral neuropathy the Mayo neurologist told me it will progressively get worse and to just watch it and let them know if it starts affecting other things. A little more discussion with him I found out other things were the autonomic nervous system and eventually an organ failure (if I'm remember everything correctly). I was bummed out because the PN was already just below both knees and I was worried about losing the ability to drive myself. I have no real pain with my PN, only the tingling and numbness and really cold feet in the winter time. I left depressed because he told me there are no drugs, supplements, topical creams that will reduce or eliminate the numbnessjimhd When I was first diagnosed with small fiber peripheral neuropathy the Mayo neurologist told me it will progressively get worse and to just watch it and let them know if it starts affecting other things. A little more discussion with him I found out other things were the autonomic nervous system and eventually an organ failure (if I'm remember everything correctly). I was bummed out because the PN was already just below both knees and I was worried about losing the ability to drive myself. I have no real pain with my PN, only the tingling and numbness and really cold feet in the winter time. I left depressed because he told me there are no drugs, supplements, topical creams that will reduce or eliminate the numbness. This is also what an 80 year old neurologist still in practice and working on research at the University of Minnesota told us at a Minnesota Neuropathy Association meeting. He said anyone that lives long enough will get neuropathy - nerves die as we age.

Anyway I'm a believer in supplements as I've found what works for me and at a minimum has stopped the progression on my SFPN. My neuropathy has went from just below the knees to just above the ankles. Unfortunately it hasn't gotten any better since the initial reversal but I'm OK with it since it's not getting worse like I was told it would.

There is a lot of research going into nerve repair/regeneration so I'm hopeful for all my younger PN friends.

@artscaping @johnbishop

Sorry for the misspelling. It is azathioprine. My neurologist prescribed it a couple of months ago. He said that it's to slow the progression of neuropathy. It doesn't treat the symptoms, so I won't feel it working.

I suppose you've tried lidocaine cream and arnica cream/tea, John. I use the lidocaine cream to numb my feet at bedtime so I can get to sleep. Sometimes I use it during the day when my feet really hurt. I wonder if it would help the non pain symptoms you have.

Jim

I've tried the lidocaine cream but it doesn't help with the numbness in the feet. I haven't tried the arnica cream/tea but I've yet to find any external creams or topicals that work for numbness. I wish it would though. I have been thinking about near infrared heat lamps to use at night before bed to warm them up. Have been looking into the healing benefit but it's a little spendy. SaunaSpace has a single light that is close to being affordable ...if it works. https://saunaspace.com/shop/near-infrared-single-light-panel/.

John

Hi @johnbishop, Thanks so much for this update. Knowledge is powerful. I wanted to let you know of a couple of things I am discovering. First, I have tried prescription lidocaine topicals and found them helpful for just a few minutes. I have switched to a 50/50 Medical Marijuana topical that actually does eliminate the numbness and needle pain in my hands and arms at least until I can get to sleep. It also calms the myofascial pain in my knee. I am also grateful that at my last visit my neurologist evidently noticed my anxiety and prescribed nortriptyline in graduated dosages. I have no side effects from this non narcotic drug and it has reduced the anxiety which causes more pain which causes more anxiety, etc. etc. And most important to me, I have gone from having constant thoughts of end of life and suicide to looking forward to each day and actually having positive thoughts of gratitude and even joy. In addition, my partner says my sleep is not so disturbed by pain....not so much moaning. So...you have your supplements and I have my "discoveries". We all do our best to maintain or improve our quality of life. And I am grateful that you and others here are in my life.

So glad that you have found something helpful for you. You are exactly right; our bodies, for good and bad, are very unique machines and require very different types of maintenance. I have never had suicidal thoughts, but have been in dark enough moods to not care whether I had another day or not. I still battle my depression every day, but I know what an amazing difference there is when you look forward to waking up each morning and am so happy for you that you have gotten to that point. Thanks for sharing your experience because the more people who talk about depression, the more people who will and help remove the stigma of mental health issues.

@artscaping Sounds like you have found a good balance to not only the pain related to your PM, but also the anxiety associated with these systoms to allow much better sleep which is so important! Good for you! Thanks for sharing!

@artscaping

Medications and therapy have brought me from the dark place of depression and suicidal ideation to a much safer place. I still fight the demons, but they don't drive my thoughts (most of the time). Depression is a constant companion. I wish I could say it's gone, but I'd be lying. My wife thinks it's gone on long enough, and I should have figured it out. I just don't know how to communicate to her how little control I have over it. My strategy is to wear the "I'm fine" mask so I don't cause her more stress or distress. I don't recommend that as an appropriate way to cope with mental illness, but it helps keep my wife happier.

Jim

Jim, you have saddened me. Depression is no different than diabetes, MS, cancer or any other disease that you would be offered sympathy, support and some modicum of understanding. It is not something we "figure" out regardless of how much we learn about it and make it go away. I empathize with caretakers because I have seen the level of stress it causes anyone who loves you. I am sorry you feel you have to wear a mask because that can only make things worse, or possibly the same, but certainly is not going to make things any better. Is your depression treated with medication? I know the trial and error and titration can be maddening, but I am about to embark on that journey with a new psychiatrist and while I know how difficult the journey can be, I also know how rewarding getting to the right medication can be. You certainly have my prayers and my ear whenever needed.