Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@jimhd

@fuzzy1southernga

This has been a good forum for me, as well. I've had idiopathic small fiber peripheral polyneuropathy for 7+ years. It was diagnosed in 2013.

Sometimes I prefer to see a doctor alone also. I haven't been able to see the neurologist since February and my next appointment with her was bumped 3 months out. When doctors were seeing patients again I had my appointment moved back several weeks, but since then I've been called twice to change the date. So now it's back to the day they bumped me to, at the end of June. If she weren't such a good doctor I might be looking for a different one. The more they postpone it the worse my pain is.

What areas are affected by neuropathy? Mine started with pins and needles in my feet and legs, then pain was in the balls of my feet, but over the past few months it's spread to include the tops of my feet and ankles, and I feel it moving up my legs. I'm a person who wants to have life organized. That's not possible with neuropathy because every person has their own unique progression. The neurologist can tell us that it is a progressive illness, but they can't predict a prognosis.

You said that the pain is bad at night. Are there other times when it flares up? Every time I lie down my feet jump up to at least 8. Same thing with the recliner. Are there any things that you've found that ease the pain? Have you tried many medications? I hope you will hit upon the right one sooner than later.

I had a Burst DR spinal cord stimulator implant in June of 2015. It was wonderful! I had 80% pain reduction. It continued to be effective for a year. During the second year I had to get the settings adjusted every 3 months. Since the start of 2018, the adjustments have been less and less helpful. I turned it off for the month of March, and then turned it on again, and I could feel no difference. Again, we are each unique in how we respond to the multitude of treatments. For some people, the SCS implant is effective much longer, while others don't find it effective at all. We just move on to the next treatment options.

Jim

Jump to this post

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.

REPLY

@jesfactsmon I had to change pain management doctors and my former pain management doctor recommended my current one. With my former pain management doctor we applied with insurance for a spinal cord stimulator cause he had success with it. When I switched doctors the new one said he applied the stimulator at the lower leg instead of in the back. He had more success placing the device in the leg. So, I just went with his suggestion.

My former pain management doctor had tried a nerve block in my back instead of in my lower leg. That didn't seem to help. I figured if the nerve block in my lower leg worked but the one in my back did not, why not go with the stimulator in my lower leg where the nerve block worked.

I don't know of anyone else who has tried it. I'm going to ask the Nalu representative that calls me everyday to check up on my progress to see how common this procedure is.

REPLY
@fuzzy1southernga

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.

Jump to this post

My small fiber neuropathy was dx by two biopsies – one in the thigh and one lower in the leg. I started with intense burning in my feet followed by numbness but not numbness to pain unfortunately, just to sensation.. It has traveled up to mid-calf and also in my hands. I have lost sufficient feeling in my hands that I drop things frequently. In addition to SFN I also have Complex Regional Pain Syndrome in both feet and left leg. It is hard to distinguish one from the other. Like Jim, the balls of my feet are very painful but I believe that is the CRPS for me. I have shiny, red skin in my feet as well as edema up to just above my ankles. The balls of my feet are so painful I use a power chair in my house to get around and only shop where there are mart carts. I do have a Boston Scientific stimulator implanted that I keep on 24/7. It works well for my back, legs, and knees and fair for my feet. I do not see a neiurologist, simply haven't had good luck with them. For the past 8 years I have been seeing a pain management doc rather frequently as I have a very painful body. I have RFA done to eliminate my occipital headaches, low back pain, and sciatica problems. They can last for up to two years for me. I hate headaches and am happy I am without for that period of time. I enjoy gardening and try to be as active as I can. It's amazing what pain I can endure just to have some fun, creative time in the yard. I also use Lidoderm pain patches and lidocaine prilocaine cream to help limit pain and when I have had it extended release oxycodone. .Hope this helps you understand some of this stuff. Get back to me if you have questions on anything I wrote about.

REPLY
@fredjan2016

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.

Jump to this post

@fredjan2016 My heart just goes out to you. Why do we suffer so, in this life. I am scheduled for a Dorsal Root Ganglion Stimulator next Thursday due to excruciating, incapacitating, foot pain from Peripheral Neuropathy. I pray for relief. I hope your new device helps you immensely. Know that their are other types of stimulators, and that one may not help, and another will. I also know that the surgeon's expertise is crucial. Yes, please keep us all posted at the end of your trial. I plan on doing the same after/during my trial. Dorsal Root Ganglion stimulator is for below the waist only, and when pain is very focal. This means a very specific spot. In my case, it is my feet only, with pain so severe that is unimaginable. I wish you great luck in managing this horrible illness. God Bless, and stay safe. Lori Renee

REPLY
@barbbie

My small fiber neuropathy was dx by two biopsies – one in the thigh and one lower in the leg. I started with intense burning in my feet followed by numbness but not numbness to pain unfortunately, just to sensation.. It has traveled up to mid-calf and also in my hands. I have lost sufficient feeling in my hands that I drop things frequently. In addition to SFN I also have Complex Regional Pain Syndrome in both feet and left leg. It is hard to distinguish one from the other. Like Jim, the balls of my feet are very painful but I believe that is the CRPS for me. I have shiny, red skin in my feet as well as edema up to just above my ankles. The balls of my feet are so painful I use a power chair in my house to get around and only shop where there are mart carts. I do have a Boston Scientific stimulator implanted that I keep on 24/7. It works well for my back, legs, and knees and fair for my feet. I do not see a neiurologist, simply haven't had good luck with them. For the past 8 years I have been seeing a pain management doc rather frequently as I have a very painful body. I have RFA done to eliminate my occipital headaches, low back pain, and sciatica problems. They can last for up to two years for me. I hate headaches and am happy I am without for that period of time. I enjoy gardening and try to be as active as I can. It's amazing what pain I can endure just to have some fun, creative time in the yard. I also use Lidoderm pain patches and lidocaine prilocaine cream to help limit pain and when I have had it extended release oxycodone. .Hope this helps you understand some of this stuff. Get back to me if you have questions on anything I wrote about.

Jump to this post

@fuzzy1southernga

I think you could get a better answer about small fiber from someone else or from Google. I'm just not very good at explaining all of that kind of thing.

Jim

REPLY
@fuzzy1southernga

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.

Jump to this post

Hi @fuzzy1southernga, I found a really good YouTube video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that explains the different neuropathies and how they are diagnosed in easy to understand language. Here is a link to the post I shared in the Testing for Neuropathy discussion: https://connect.mayoclinic.org/discussion/testing-for-neuropathy/?pg=1#comment-359974

REPLY
@maylily

I'm 79 yo & have numbness in feet & slightly in hands. Have had back issue for yrs. GP referred me to Neurologist but virus halted that. What can I expect when I do go?

Jump to this post

@maylily

Have you been able to get an appointment with the neurologist yet? The doctors in my area are seeing patients now, but it's the squeaky wheel that gets the attention. Most of my doctors see patients in as many as 3 locations, so when I call to make an appointment I always tell them that I want to see them at any of their locations, whichever is soonest.

I know too well how hard it can be, waiting for an answer. Keep squeaking that wheel.

Jim

REPLY
@artscaping

Good evening, @southwind Wow! That took some doing. Did you expect Lyme disease? If not, this is really a new development. Please continue to share with Connect. Your words, your story, with lots of sharing, will help so many others who are seeking answers.

Be safe and protected,
Chris

Jump to this post

Good afternoon @southwind, It may be too early to ask for you to share your new direction but I was just wondering what the Mayo Lyme Board had to say?
May you be free and protected.
Chris

REPLY
@fredjan2016

@jesfactsmon I had to change pain management doctors and my former pain management doctor recommended my current one. With my former pain management doctor we applied with insurance for a spinal cord stimulator cause he had success with it. When I switched doctors the new one said he applied the stimulator at the lower leg instead of in the back. He had more success placing the device in the leg. So, I just went with his suggestion.

My former pain management doctor had tried a nerve block in my back instead of in my lower leg. That didn't seem to help. I figured if the nerve block in my lower leg worked but the one in my back did not, why not go with the stimulator in my lower leg where the nerve block worked.

I don't know of anyone else who has tried it. I'm going to ask the Nalu representative that calls me everyday to check up on my progress to see how common this procedure is.

Jump to this post

Thanks so much for your reply. Your experience with the spinal stimulator is very interesting. I do wish my neuro would give me further info, all I have to go by is my Portal Idiopathic Progressive Polyneuropathy. Very helpful to hear from others that have information on dealing with each stage. Best regards! F1sg

REPLY

My name is Vic.I suffer from peripheral neuropathy for about 15 years now take 2400 mg of Gabapentin daily. Feet pretty numb and now beginning to move to my fingertips. Dr. Is no help.. I believe that cause originally was a Statin Zocor switched to lipitor the last 10 years likely no difference.

REPLY

Wondering if a foot vibrator may help improve my foot control while walking

REPLY
@vik

Wondering if a foot vibrator may help improve my foot control while walking

Jump to this post

Didn’t help me

REPLY
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

Jump to this post

Thank you all so much for your kind & helpful replies. My emg report came today, means nothing to me. 1. NCS showed abnormalities of the bilateral sural sensory response. 2. EMG testing showed CRDs of the left IP muscle.
3. Sensory neuropathy. Thanks for any input you might have!!!

REPLY
@fuzzy1southernga

Thank you all so much for your kind & helpful replies. My emg report came today, means nothing to me. 1. NCS showed abnormalities of the bilateral sural sensory response. 2. EMG testing showed CRDs of the left IP muscle.
3. Sensory neuropathy. Thanks for any input you might have!!!

Jump to this post

Hi @fuzzy1southernga, When it comes to interpreting test results I think your best bet is to give your doctor a call and ask him if he can explain the results to you in layman's terms which is what I do if something is not clear.

REPLY
@vik

My name is Vic.I suffer from peripheral neuropathy for about 15 years now take 2400 mg of Gabapentin daily. Feet pretty numb and now beginning to move to my fingertips. Dr. Is no help.. I believe that cause originally was a Statin Zocor switched to lipitor the last 10 years likely no difference.

Jump to this post

Hi Vic @vik, Welcome to Mayo Clinic Connect. Sorry to hear that your neuropathy seems to be progressing to your finger tips. Gabapentin and other drugs prescribed for neuropathy only address the pain associated with neuropathy and do nothing to help with the numbess. Do you also have pain with your peripheral neuropathy?

You may also be interested in the following discussion where other members have shared their neuropathy story along with what helps them. Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

REPLY
Please login or register to post a reply.