@katec

I know just what you're saying. I've seen neurologists, neuro specialists at a university hospital, a pain specialist, a pain therapist and my PCP. I'm blessed to have a PCP who is happy to refer me to specialists.

Have you considered a spinal cord stimulator implant? I had one put in in June of 2017. It reduced my pain by more than 75%. I've learned that everything I've tried gives me only temporary relief. I know that the stimulator is still helping with my pain, but not as much as it did the first year. After that, the pain got worse, and the company rep adjusted the settings, and since then, I have to have it adjusted every 3 months. Each time it gives me pain relief, but gradually the pain gets worse and the rep changes the settings. It's pretty much a 3 month cycle. It's helped me enough that I'm willing to recommend it to others.

Maybe you've already heard all of this. I think that the Burst DR stimulator is probably the best - that's what mine is.

The burning pain was only in the bottom of my feet, in the ball of my feet. Now it's in the top of my feet, as well. Walking, especially on hard surfaces, is very painful, but even on good days, when I lie down in bed, the pain kicks in with a vengeance.

My taste in shoes has changed. Now I look for shoes with a wider toe bed, and roomy enough to put in some gel insoles. If necessary I buy shoes a size larger than my size 13 feet. I especially like the Air Plus industrial work insoles. They're less than $9.00 at Walmart. The shoes I've started collecting are Clark's, but I'm still picky, even with the Clark's label. I found a pair of Nike's that are comfortable enough for working around our place.

I have a good pain specialist who has gone down a long list of medications, trying to find one that helps. Last month, he had me start Imipramine, and it's really helped a lot. The only other medication that helped was Lyrica, but I had a bad reaction to it that put me in the hospital for a few days. I've also taken morphine sulfate contin for several years, and it takes the edge off the pain, but it doesn't do the whole job. I tapered off it twice, and after a few weeks without it, my feet hurt much more, so I went back on the morphine.

I haven't tried CBD oil or medical marijuana, but a lot of people here in Connect have found it helpful.

Has your son tried topical cream of any kind? Do you have a pain specialist? Mine has been very helpful. The pain therapist I saw for 6 sessions showed me some useful techniques for dealing with the pain.

The neurologist at the university hospital confirmed my diagnosis of small fiber idiopathic peripheral neuropathy, and noted the beginning of autonomic neuropathy.

Finding a treatment for the symptoms of neuropathy can be a long, frustrating process. It seems to be a matter of trial and error. I empathize with your son. I never experienced pain before that never stopped, and was bad enough to make me cry. I hope that you'll find something that will bring relief to your son.

Jim

Jump to this post