Welcome, Alan. I was diagnosed with peripheral neuropathy 15+ years ago, with some numbness and tingling. The pain hit hard in 2015. Since then I've tried every medication for neuropathy and nothing helped, and most had undesirable side effects. I see a neurologist, a pain specialist, a therapist, a physical therapist and my pcp. Along the way I've also seen a cardiologist, and I had a spinal cord stimulator implant in June of last year.

I've been taking mscontin for several years, up to 30mg tid. After the implant, I reduced the morphine and am trying to get by with just 15mg in the morning, though my prescription is for 3 a day. When I'm going to be on my feet a lot, I will take a second one midday.

The Burst DR stimulator reduced my pain by around 75%, but I need periodic adjustments. With the Burst DR technology you don't feel any vibration that the older stimulators produced, which I understand is unpleasant and becomes intolerable.

I have a prescription lidocaine cream that I often put on my feet at bedtime. Usually it numbs my feet enough so I can get to sleep. Capzasin cream is helpful to many people, but it didn't help me.

I recently learned that I have both small fiber and autonomic peripheral neuropathy. The burning pain is in my feet, but I have some loss of sensation in my hands and face, and autonomic neuropathy is possibly the cause of or a contributor to several other issues I deal with, including double vision, tinnitus, esophageal dysmotility, lack of coordination in the base of my tongue, silent GERD, urinary issues, bowel issues and sexual dysfunction. I'm beginning to notice balance problems sometimes and foot drop.

My research indicates that progression of neuropathy is highly individualized, and it is rarely totally disabling, and even more rarely terminal. Of course, we're all terminal. It's part of the cycle of life.

I'm waiting to hear from a neuro specialist in Portland, OR, to see me and hopefully answer some of my questions about the involvement of neuropathy in these other things and to try to get an idea of what the progression will look like. I'm also hoping that he might have some other treatment options that the local doctors haven't tried.

I've been seeing therapists for more than 12 years for depression, PTSD, anxiety and suicidal ideation. These mental health issues complicate how I deal with pain and other physical conditions. I'm working on taking it all a day at a time, more or less, and not project the worst case scenario, which is typical of someone with mental illness.

I wish you the best in finding answers.

BTW, the one medication that was helping with the pain was Lyrica. Unfortunately, the side effects put me in the hospital. Bummer!

I'm going to be 68 in August, but because of mental illness I had to retire on Social Security disability when I was 56. Physically, I was in good health at the time, sleep apnea being my only concern. It's a challenge to grow older and have illnesses begin to pile up. I'm blessed to have several good doctors who take a genuine concern for my health.

Jim

Thanks for all this, Jim. I also have a prescription lidocaine cream that works well for my feet, though as I noted the most recent development in my case is the spread of the pain from my feet all the way up my legs to the thighs. The pain isn't as intense as that in the feet--yet--but enough discomfort so that I've had to start using the cream on my legs as well. The distressing part of it is how rapidly it's happened. This change in the legs started just a week ago and gets worse every day. The condition of the feet had been fairly stable for about a year. As you and just about everyone says, this thing is very individualized and unpredictable.--Alan

@alanhny- Hang in there my friend! Sorry to hear about the extent of your Neuropathy. It just seems that someone has to come up with something soon with as many that are having these terrible systoms! Thinking of you tonight. Jim T.