Living with Neuropathy - Welcome to the group

Thank you

Numbness started in hands about 10 years ago. Had Carpal Tunnl procedure which helped some. The numbnes proceeds with nincreasing numbness moving up to wrists. The numbness is also in my feet and legs making t necessary to use a walker.
Taking vitamin B12. As far as pain; experiece it only occassionally. Thanks for responding

I started the peripheral nerve stimulator trial using Nalu Med stimulators. So far the stimulators have cut the pain medication in half. Before I could only stand/walk for two minutes. Now I can stand/walk for several minutes. I'm going to the grocery store later today. The trial lasts for one week; until Tuesday June 9th. So far I am impressed.

If I elect to have them installed after the trial, they will be installed inside my lower legs permanently. They never need new batteries.

@fredjan2016 Could you tell us more about the stimulator you're trying?

Jim

The stimulator is from Nalu Med, https://nalumed.com/, and it works on the same principles as a spinal cord stimulator. They install the stimulator close to the nerves that are sending the pain signals instead of targeting them in the spinal cord. In my case that would be just above my feet. A few weeks before the trial they did a nerve block on the same nerves the stimulator is targeting. The nerve block was very successful.

As you can see on the website the implanted device is very small. The size of a dime. It comes with a remote control that allows you to change the pre-installed programs and the intensity.

As the picture shows in my previous post, I have stimulators installed on both legs. They installed wires in my leg while I was out and the bandages hold the wires in place for the trial. The black Velcro pouches on each leg hold the stimulator disk that connects to the wire leads. The Nalu representatives spent an hour with me after the doctor implanted the wires setting up the programs and setting the intensity. It was a little painful setting up the intensity, but I don't feel anything now. I don't feel any difference between when the device is on and when it is off.

My idiopathic small fiber peripheral neuropathy is very painful and without pain pills the pain would send me to the ER. I would say my pain is "typical" for this disease. My feet "tell me" they are really hot when they are not, I get shooting stabbing pains, my feet are very sensitive to touch and they can't sense temperature. I can put my feet in scalding water and not feel a thing. Cold water helps my foot pain a lot.

Prior to the stimulator trial I could only stand/walk for two minutes. I couldn't walk into the dollar store, pickup a gallon of milk and stand in line to check out without having to drop down to one knee due to the pain. Today, for the first time in years, I was able to go grocery shopping for an hour. I had mild pain, but not enough to keep me from shopping. As my neurologist told me this disease will only get worse, so I'm not sure how long the stimulator will keep working for me, but it is better than anything else they doctors have tried.

Last evening I did not take any pain medication before I went to bed. I woke up at 3 AM in very bad pain and had to take a pain pill. So, the device hasn't gotten rid of all the pain, and I still take about half of the pain medication I was taking.

If you want, I'll share an update at the end of my trial. Please contact me with any questions you may have.

@fredjan2016 I see in the physician instructions that the nalumed is not MRI compatible. That was one requirement I had for the SCS implant. The size of the implant and low level invasive surgery are attracted to a lot of people, I'm sure. The SCS implant is quite small, like the size of a small match box. Most people don't really feel the battery implant, but because I'm thin, I can feel it by touch and by lying on it. Mine is just above my belt line. So, the size generally isn't an issue for most people because they have more cushion in that area.

Your symptoms are remarkably similar to mine. I can walk around, but not without pain. Hard surfaces are the worst, and the pain is worse standing still. Lying down or sitting in the recliner with my feet up is an instant elevation of pain. I realized one day that the water in my shower was too hot to hold my hand under it, but I didn't feel it hitting my feet.

The pain is slowly making its way up my legs. Right now it reaches just above mid calf. When I had my appointment with the neurologist 6 months ago, the pain was mostly in the balls of my feet and toes. At my appointment a week ago, the neurologist was concerned that my pain had spread to include the whole foot and ankles and starting up my legs. He prescribed Prednisone, which is supposed to slow the progression of neuropathy. The plan is to take it long term.

I've been taking morphine sulfate contin for more than 5 years, and Imipramine for 8 months. Morphine takes the edge off the pain. A few years ago I tapered off it to see if it was having any effect on the pain. I realized within 2 weeks of being off it, it was indeed helping my pain. So, it could be a lot worse! But clearly, it doesn't do the whole job, and Imipramine has helped. After about 6 months, it began to lose its effectiveness, unfortunately. I have an appointment with the pain specialist Monday, and we'll be having a conversation about what to do next. I've exhausted the long list of neuropathy medications, and all of the pain meds that are available. Imipramine is the next to the last medication on the pain specialist's list, and he told me that the one remaining medication isn't one that he would prescribe because of its side effects.

Do you have any indicators of autonomic neuropathy? That's a whole different set of problems. You said that you have a pain medication. Did you take it very long before starting the trial? Obviously it's not doing the whole job, or you probably wouldn't be looking at other options. I hope that you'll continue to feel the benefit of your implant for a long time.

Gotta go set the table for supper. Do keep us updated through this process.

Jim

@jimhd
I do not have any signs of autonomic neuropathy. Four people in my family (uncle, brother, sister, me) have peripheral neuropathy and none of them have autonomic neuropathy. Thank God for that.

No medications have helped my neuropathy and the doctors have tried all they could think of. The only thing that has worked is pain pills and I've been on them for four years. Started with Hydrocodone, went to Morphine and now I'm on Methadone. Methadone has the least side effects for me and lasts the longest. The Methadone controlled the pain but I still couldn't stand or walk for more than 2 minutes. So, I was surprised when the nerve block and this trial took care of most of the pain and I could stand and walk for over 30 minutes. (I might have to return my handicap placard.)

The pain management doctors I have had wanted to get me off of opioids, so they pushed some type of neuro stimulator. My old insurance would not cover a spinal cord stimulator but my new insurance would cover it or this localized neuro stimulator. My current pain management doctor said that installing a neuro stimuatlor in the lower leg is new procedure and few doctors are certified to do it.

@fredjan2016

Doctors wanting their patients off opioids are stupid. But don't quote me on that. If morphine is so bad, why did they prescribe them for us. How is it that they have treated pain for centuries and now the bureaucracy rewrites history and opioids do nothing for pain. Sorry. The whole thing angers me.

My prescription for morphine was 30mg 3 times a day, when I decided to taper off, then I only went up to 15mg 3 times a day. That was a mistake. Now he announced to me that he won't raise my dose. The PC thing is that my body has gotten used to it and if he raises it once I'll just keep needing more.

So, I've been making myself take only two a day and at the same time getting the prescription filled on time each month. There are days when 2 is definitely not enough. Sometimes I just push through, but sometimes I take 2 at night because I'm in so much pain. You know that feeling, don't you.

If something else stopped the pain, I'd be all over it, and would willingly stop the morphine. But I've tried everything that all of my doctors could offer, and nothing has helped. I shouldn't say "nothing", because Lyrica was beginning to relieve the pain, until I ended up in the ER, incoherent, couldn't walk, no memory. I couldn't live with those reactions just so my feet wouldn't hurt. I've forgotten how to cry. I would be in tears every night and every day.

After I told my doctor (not my current one - I lived in another place) that I was attempting suicide he was considerate and allowed me to make arrangements for others to do my work and I self admitted to a suicide failure facility. The normal stay there was 3 days. I stayed for 6 weeks because I knew that I would do it right the next time, as soon as I got home.

Sorry. You didn't need to hear all that. I retired at 55 on Social Security disability and Medicare became my health insurance, and they approved the SCS implant. There's very little that they have declined. Even then, a letter from the doctor gets things approved.

I wish that I had taken the advice from a man in this forum, to do a lot of research before signing on with the surgeon. As in research about the doctor. He did the procedure fine, but I have never to this day laid eyes on him except in surgery.

Well, I seem to have lived up to my usual record, and written way more than necessary. What's stopping me now is that my dog is pestering me to let her out.

Thanks for listening.

Jim

Hi @fredjan2016 my wife has the PN in our family. I am wondering how your doctor decided to go with the particular stimulation method you are getting? So far I know of the spinal cord stimulation (SCS) and the dorsal root ganglion (DRG) stimulation and this is the first I've heard of this peripheral neurostimulator. Does he think this makes the most sense because the pain is originating in the peripheral nerves instead of more centrally located pain such as lower back pain, etc.? That would seem to make sense intuitively. Have you heard of anyone else already having success with this method for SFN? I wish you good luck on this, it will be great to hear that you have had success in improving your pain situation. Best, Hank

Hi Jim this forum is so helpful. Do you mind if I ask what small fiber neuropathy is? My poly n started with unbearable thumb pain & was shrugged off with probably age, arthritis ect. Next my left leg became unstable @ my left knee & shin pain began. I walk 3-4 miles per day even if it takes all day- concerned about muscle tone. Diagnosis keeps starring at me, looks like it’s real. I thank you for your story, I keep re-reading.