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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

alfer | @alfer | Feb 2 7:01am

I am confused? I have all the symptoms of PN but only during the day! When I go to bed my symptoms stop. Very odd but happy. Every morning the day starts fresh and only after I am on my feet do the symptoms return. Anyone have that condition. I believe it’s coming from my back! I have been diagnosed with spinal stenosis but my back doesn’t hurt? Any thoughts on this? My symptoms are all in the foot toes and balls of my feet. They feel like someone is grabbing them, with some tingling and loss of sensation.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 2 7:35am
In reply to @alfer "I am confused? I have all the symptoms of PN but only during the day! When..." + (show)
@alfer

I am confused? I have all the symptoms of PN but only during the day! When I go to bed my symptoms stop. Very odd but happy. Every morning the day starts fresh and only after I am on my feet do the symptoms return. Anyone have that condition. I believe it’s coming from my back! I have been diagnosed with spinal stenosis but my back doesn’t hurt? Any thoughts on this? My symptoms are all in the foot toes and balls of my feet. They feel like someone is grabbing them, with some tingling and loss of sensation.

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Hi @alfer, I'm not a doctor or medical profession but I do think your symptoms can be related to your spinal stenosis. Here is some information from Mayo Clinic that might provide some suggestions to help:

--- Consumer Health: Treating spinal stenosis: https://newsnetwork.mayoclinic.org/discussion/consumer-health-treating-spinal-stenosis/

I'm wondering if physical therapy or special exercises might help. Have you discussed the symptoms with your doctor?

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adejuliannie | @adejuliannie | Feb 2 9:32am
In reply to @lmo "My name is Larry. I have been suffering with Nueropathy for 12 years. I do not..." + (show)
@lmo

My name is Larry. I have been suffering with Nueropathy for 12 years. I do not have Diabetes so the cause has not been diagnosed. I have also had two unrelated spine fusions that has been diagnosed as fail back surgery syndrome.
I have been through all of the drugs that are normally used to treat the nueropathy, many of them several times. I have also tried physical therapy with no change to the muscle twitching, burning feet and just general numbness and pain. Absolutely nothing had helped enough that I could tell there was an improvement.
I would like to share something that was discovered while treating a condition I have found is sometimes triggered by chronic pain (depression). After I started showing signs of depression from the pain I was prescribed Venlafaxine 150mg per day for the depression symptoms. After one day of starting the medication I noticed a huge improvement in the burning in my feet. After three months of taking it the improvement continues. This is the only thing out of years of trying different medications that has had any effect on the problem. I am not recommend anyone start a depression medication that may not be listed for nueropathy treatment. I just wanted to say what has given me meaningful relief from the pain. Good luck with everyone's struggle with nueropathy.

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I been using Dulaxetine which has helped me an the also is a Depression Medication

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domiha | @domiha | Feb 2 6:20pm
In reply to @adejuliannie "I have been using for 6 weeks Red Light Therapy by Novaalab cost me $224 is..." + (show)
@adejuliannie

I have been using for 6 weeks Red Light Therapy by Novaalab cost me $224 is FDA . Has worked for my Neuropathy in my legs, my torn Labrium in my Shoulder

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@adejuliannie Please share where you obtained your red light device? How has it made a difference in your neuropathy in your legs? Best wishes! Thank you! Mike

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adejuliannie | @adejuliannie | Feb 2 6:38pm
In reply to @domiha "@adejuliannie Please share where you obtained your red light device? How has it made a difference..." + (show)
@domiha

@adejuliannie Please share where you obtained your red light device? How has it made a difference in your neuropathy in your legs? Best wishes! Thank you! Mike

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Purchased from them ad on Facebook Novaalab.com it's there Healing pad FDA Approved. Has helped my legs Tremendously. Use for Carpel Tunnel an a torn Labrium in my Shoulder.

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joycefrack1215 | @joycefrack1215 | Feb 27 4:01pm

I don't know about you but I have found it is helping with the pain I have been experienced wont say it will cure it but finally I am getting relief

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sfdalmom | @sfdalmom | Mar 11 2:22am
In reply to @mayamae "Hello all! My name is Tori and I am a 47-year-old woman suddenly living with severe..." + (show)
@mayamae

Hello all!

My name is Tori and I am a 47-year-old woman suddenly living with severe nerve damage in my left calf and foot. In September I had bone spur surgery on my left big toe and they gave me a nerve block. Somehow, the anesthesiologist damaged multiple nerves with the nerve block. An EMG done by a neurologist showed severe damage to multiple nerves as well as muscles. What should have been a surgery with a quick recovery has become life-altering. I am in constant pain and NEVER get a break from it. At first, I couldn't walk on my left foot. Now, I can go short distances in the house, but any pressure is so painful that I can't go far. Going to work and any outings is done on a knee scooter, which has its challenges. I can barely stand wearing socks for any length of time and even having blankets laying on my foot is bothersome. There's so much that I can't do and I am struggling with this sudden change. I am on Gabapentin and it doesn't help at all. Other than that, there's apparently nothing to be done. My neurologist said it would take over two years if it can heal, but he's not sure if it can due to the extensive damage. I hope to find support and tips on this site, as I don't know anyone else with this issue.

Thank you in advance for any advice!

Tori

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Hi Tori! I saw your post — I’m so sorry about the problems you’re having from the block! (I just had several bone spurs removed from my the top of my foot and my anesthesiologist didn’t do a block.)
But I did have a block placed in my lower back for an Achilles replacement surgery. My nerve pain started after surgery as the block wore off. I started feeling zingers into my groin, which got worse and worse until it eventually led to the area feeling like it was on fire. I went to urgent care the next day and got a prescription for gabapentin.
I went to the Pain Clinic at UIHC (that’s where I’d had my surgery) and the doctor told me that the damage from the block would repair over time, but that nerves repair very slowly. It did take quite some time to get noticeably better and I had to increase my gabapentin dose several times to get relief, but the nerve did regenerate and it’s mostly normal now.
What did the neurologist tell you about how your recovery will be? The pain clinic was very helpful to me for learning to deal with the pain with biofeedback.
I really hope you got good news from the neurologist and will heal from the damage! Please update if you’d like!

Beth

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ebero | @ebero | Mar 11 7:31pm

Any tips for handling a long drive? I plan to visit my daughter and yet my hands get numb on the steering wheel, my sciatica kicks in after an hour or so and my right foot goes numbish on the gas/brake pedals. Any advice welcome, short of "stay home." Thanks!

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joanland | @joanland | Mar 13 5:51pm

Take breaks often. It will slow you arrival a bit, but that seems a small price to pay. Good luck. Please report back how the trip went.

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thomas2427 | @thomas2427 | Mar 14 11:10am

If other foot is ok, practice using it for the brake pedal, it wont take long to get the two feet coordinated. Also us cruise control, if it has a memory even better. Use the +/- to control speed to give you accelerator foot a break in between. You can also attach rotating type knob type device to the steering wheel to control it with either hand if you need to. Uber can always be a help. Also consider taking the train/bus if possible. Hope this help.

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