Neuropathy due to long untreated diabetes

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.

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.

Hi Gary (@gman007), CoQ10 and turmeric are two of my favorite supplements. Would you happen to know what a therapeutic dose of CoQ10 is? I was taking 100 mg capsules once daily but recently went to a 300 mg capsule once daily. I know it's good for your heart and I also have high blood pressure for which I'm currently taking medication.

Thanks, John

@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

I do not, but also take a 300mg tablet that is just slightly smaller than a robin's egg. It works amazingly well for the hand pain I have always experienced with a statin drug. I would be interested if anyone has a doctor's recommendation for a therapeutic dose as opposed to just googling it.

There's a guy in my Facebook neuropathy group that said he is taking it for a heart problem. I'll have to see if I can find out from him what a therapeutic dose is. I did try Google Scholar and a few other search engines but didn't find any info.

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!