Apparatus for Neuropathy

Rachel @ rwinney, I have SFPN (small fiber peripheral neuropathy) idiopathic in origin for 8+ years. The pain in the feet is intolerable at times and made worse by walking. My hands started hurting years after the feet which supports the diagnosis of length dependent peripheral neuropathy (SFPN)( the nerves farthest away are affected first) I avoid shopping. Lately I have used the electric carts when grocery shopping. It became easier to use when I decided not to let my pride get in my way. I have not worn shoes for years as they make the pain worse. I wear orthotic type flip flops all the time except for cold days, then I wear a loose fitting,lined zipped boot. I have become more reclusive. I have read that some folks who have not responded to normal medicines like, (Neurontin, Lyrica, Cymbalta, Nortriptyline) and the Peripheral Neuropathy becomes further debilitating they get relief from fentanyl patches. I was pleased to read that several people are doing well on those fentanyl patches. Has anyone had a spinal cord stimulator inserted for very painful peripheral neuropathy ?
Rachel, unfortunately people do not recognize SFPN as a disability by sight, even if you are using an assist device as an electric chair at Targets. I use
ski poles made for walking on ice or snow,I have hand holds in my bathroom and shower, i use wooden walking sticks to help with balance. I know that if I close my eyes i will lose my balance within 10 seconds, so i keep lights on at night where I will be walking. I clear obstructions out of the way. Where it all goes? I do not know. I did read about getting tested for autonomic neuropathy or at least being aware that you are at risk of developing autonomic neuropathy.
and how it affects elimination,heat rate, blood pressure (orthostatic hypotension). Thanks for asking good questions. Best to you, David

Rachel @ rwinney, I have SFPN (small fiber peripheral neuropathy) idiopathic in origin for 8+ years. The pain in the feet is intolerable at times and made worse by walking. My hands started hurting years after the feet which supports the diagnosis of length dependent peripheral neuropathy (SFPN)( the nerves farthest away are affected first) I avoid shopping. Lately I have used the electric carts when grocery shopping. It became easier to use when I decided not to let my pride get in my way. I have not worn shoes for years as they make the pain worse. I wear orthotic type flip flops all the time except for cold days, then I wear a loose fitting,lined zipped boot. I have become more reclusive. I have read that some folks who have not responded to normal medicines like, (Neurontin, Lyrica, Cymbalta, Nortriptyline) and the Peripheral Neuropathy becomes further debilitating they get relief from fentanyl patches. I was pleased to read that several people are doing well on those fentanyl patches. Has anyone had a spinal cord stimulator inserted for very painful peripheral neuropathy ?
Rachel, unfortunately people do not recognize SFPN as a disability by sight, even if you are using an assist device as an electric chair at Targets. I use
ski poles made for walking on ice or snow,I have hand holds in my bathroom and shower, i use wooden walking sticks to help with balance. I know that if I close my eyes i will lose my balance within 10 seconds, so i keep lights on at night where I will be walking. I clear obstructions out of the way. Where it all goes? I do not know. I did read about getting tested for autonomic neuropathy or at least being aware that you are at risk of developing autonomic neuropathy.
and how it affects elimination,heat rate, blood pressure (orthostatic hypotension). Thanks for asking good questions. Best to you, David

@phoenix0509

I had an Abbott scs implanted in June 2017. It's a Burst DR, so I don't feel any vibration like others do. I had unbearable pain in my feet as you described, and the scs gave me 75%+ relief. It was wonderful!

The first year or so I continued to have significant relief. Since then I've seen the Abbott rep for adjustment of the pain coverage every 3 months. I have tried every medication for pn, and many others that my pain specialist prescribed. Everything either did nothing or had unacceptable side effects. Lyrica was the first one that was helping, but I had a serious reaction to it that put me in the hospital for a few days. A real bummer.

A few months ago I talked with a new doctor about the possibility of having a dorsal root ganglion stimulator implant. She was the best doctor I've seen about stimulators, and she talked with the Abbott rep about different ways to adjust the stimulator. At about the same time my pain specialist tried yet another medication and wanted me not to change any of my meds or have the scs adjusted until we could assess the effect of the new medication, imipramine. Turns out that it really does reduce my pain in my feet. Last week the Abbott rep worked with the scs controller and I can feel some benefit.

Even with the scs, Imipramine, and the morphine sulfate contin that I've been taking for several years, I have days like yesterday when my feet have terrible burning pain. I imagine that it was so bad because I was in town for two doctor appointments for my wife, and had lunch. Town is an hour away from home, and driving generally makes my pain escalate. I took an extra morphine tablet and rubbed lidocaine cream on my feet, and the pain abated enough to go to sleep.

Indeed, shopping becomes greatly reduced. At Walmart I can order online and pick up the order either just inside the store or they will bring it to my car.

Until recently I have been most comfortable walking with shoes with extra insoles, and socks. I can't walk barefoot or in footwear without socks. But now it's been hurting if I'm in the recliner with socks on, so I've had to start sitting barefoot. I don't think that the increased pain is an indication that the scs isn't helping, rather that the pn is progressing.

I didn't say what form of pn I have. It's small fiber polyneuropathy, idiopathic, and I'm also in the beginning of autonomic neuropathy. That's worse in some ways than sfpn because of the risk factor, even though it's not painful.

Electric shopping carts can surely make it possible to move around the store much more than on foot. Sometimes the carts are all in use, and sometimes the parked ones are being charged. It's not a good feeling to be far away from the checkout and the battery dies.

I can tell that a cane or a walker are in my future. How long did it take you to get there after the symptoms began? I know that it progresses at different rates for each person.

The medical issues that I have could possibly have a neuropathy involvement, but doctors can't say for sure. From head to toe, I have diplopia, esophageal dysmotility, uncoordinated motion at the back of my tongue, tinnitus, decreased sense of smell, loss of sensation in my face and fingertips and the end of my penis and my feet, sudden urgent urinary and bowel movements, ED, tingling in my legs and feet, loss of sensation in my feet, and severe pain that has recently progressed from my toes to my ankles.

I don't know if there's a definitive test for autonomic neuropathy. I think it's diagnosed by observation of the signs and symptoms - maybe there's a test I don't know about. You certainly are exhibiting signs of AN, specifically balance, elimination, and BP. Do you have any unusual changes in sweating? One of the tests is the tilt table and placing electrodes in various places to to test changes in sweating.

Are you working with a pain specialist or met with a pain therapist? They have been a big help for me. It sounds like you're doing a number of things to keep yourself active. Try not to give up, David.

Jim

Rachel @ rwinney, I have SFPN (small fiber peripheral neuropathy) idiopathic in origin for 8+ years. The pain in the feet is intolerable at times and made worse by walking. My hands started hurting years after the feet which supports the diagnosis of length dependent peripheral neuropathy (SFPN)( the nerves farthest away are affected first) I avoid shopping. Lately I have used the electric carts when grocery shopping. It became easier to use when I decided not to let my pride get in my way. I have not worn shoes for years as they make the pain worse. I wear orthotic type flip flops all the time except for cold days, then I wear a loose fitting,lined zipped boot. I have become more reclusive. I have read that some folks who have not responded to normal medicines like, (Neurontin, Lyrica, Cymbalta, Nortriptyline) and the Peripheral Neuropathy becomes further debilitating they get relief from fentanyl patches. I was pleased to read that several people are doing well on those fentanyl patches. Has anyone had a spinal cord stimulator inserted for very painful peripheral neuropathy ?
Rachel, unfortunately people do not recognize SFPN as a disability by sight, even if you are using an assist device as an electric chair at Targets. I use
ski poles made for walking on ice or snow,I have hand holds in my bathroom and shower, i use wooden walking sticks to help with balance. I know that if I close my eyes i will lose my balance within 10 seconds, so i keep lights on at night where I will be walking. I clear obstructions out of the way. Where it all goes? I do not know. I did read about getting tested for autonomic neuropathy or at least being aware that you are at risk of developing autonomic neuropathy.
and how it affects elimination,heat rate, blood pressure (orthostatic hypotension). Thanks for asking good questions. Best to you, David

Hi David (@phoenix0509)
I have exactly the same problem that you have. I also wear flip flops in the winter.
I take the same meds, but I don't want to get involved with opioids like fentanyl. I'm not sure the standard meds work, but I take them anyway). I'm also consulting with a pain management specialist soon about low dose naltrexone.
I have discovered some tricks, which may help you or others.
Ugg boots and shoes are the most comfortable for me. In fact, I have lined all my other shoes (including flip flops) with shearling. I think the fact that shearling wool holds a lot of air is why they help.
My symptoms vary dramatically from day to day. Who knows why? I'm generally better in the summer and on vacation to warm places.
I'm also better when I'm in a good mood, or distracted. I believe there is a strong psychological element.
When the pain is very bad, I try to calm myself down, and even invite the pain in, so as to at least feel that I have some control over it.
I try to do physical, outdoor things even when the pain is bad. It serves to distract me some, and I feel better with exercise.
I hope some of this helps.
Jeff

2 thumbs up for one size larger Ugg boots. 👍🏼👍🏼

I also wear flip flops in the shower, and have a memory foam bath mat to step out onto. I have a grab bar that I'm going to put in the shower, to give me something to hang onto when I wash my feet. I don't do standing on one foot anymore.

When I'm lying in bed with hurting feet, I will focus on the pain and note the various feelings. If I focus on the tingling my mind shuts off the burning part. Another thing the pain therapist suggested was to place my attention on a body part that feels well. I've been surprised by the positive results of focus. The mind is an amazing organ.

I agree that the pain can be less present when I'm working in the yard or in the shop. My brain is occupied more with the activity than with the pain. It's always there, but distraction is a good tool for managing the pain.

Jim

Hello David and thank you for responding to my questions. It's always good to learn of others experiences with neuropathy and all of it's varieties. It seems you rely on and accept use of apparatus based on necessity. I'm curious if you are able to drive???

This winter, the only semi comfort on my feet are Ugg boots. I wear Muk Luk slipper boots and on occasion Uggs inside if need be. Currently, I am searching out a therapeutic cushioned tub mat. Showering is difficult all around and not pleasurable any more. Bars are great ideas for balance. Luckily no balance issues as of now. There are folks on the forum who have positive results from spinal cord simulators.

I find this disease to be so confusing. For instance, during the time I was receiving lidocaine infusions, my legs had begun a decline simultaneously. When new symptoms arise...I don't know if it's strange side effects from a treatment or strange new neuropathy symptoms. I have not tried fentanyl patches but thank you for the idea.

I still don't fully grasp how one gets diagnosed with more specific neuropathy such as autonomic or motor? My Dr is one of very little words but I will find out after blood results are back.

I'm curious if anyone requests their medical doctors notes? Well, I did for last year and it's so interesting to read! Found out I'm a "PITA" patient, in not so many words. Because I have mentioned this Neuropathy forum to my Dr., and some things I've learned from it, my notes actually state that I'm in "online chat groups!". Hahaha...I found this humorous. How they must talk about us behind our backs simply because we present our knowledge and findings. I guess I get both sides, to an extent but, don't mess with my Mayo Connect forum and down play it to a CHAT GROUP! This here is counseling, support and encouragement without a co-pay! 👍🏼

All the best to you David. Be well.
Rachel