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?

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

Profile picture for rblogan @rblogan

So far the only thing that gets me a goodnight sleep is imovane (zopiclone) but it is very addicting. I get only 10 for a month

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i take 1 half pill of Effexor at 9pm every night and it helps me sleep and another half at 91am-my doctor said it is good for neuropathy

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Profile picture for tgcorin @tgcorin

I have severe neuropathy only in my feet, & I am not diabetic. I also have RLS often.
I have tried neuronton & gabapenten (sp?) to no avail. I have insomnia mostly because of the pain and restlessness. I would like to know what others with this condition do for relief. I have had this for over ten years, I am 92 years old, female.

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I also take 2 gabapentin at night, naproxen 500 mg, Nature’s Bounty Sleep3 (purple tablet works best for me). It gets me to sleep & I stay asleep. Best rest ever! I suffer from spinal stenosis and use cold packs, sometimes heating pad, getting my 4th epidural inj tomorrow for a better Spring☺️

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Started getting pins and needles about a year ago out of no where.. my night started with 3 brain zaps, went to the ER all brain and heart testing was normal. After leaving I started getting the pins and needle pricks currently seeing a neurologist and they just cant seem to figure out the cause 🙁

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I had a broken ankle which resulted in surgery with pins and plates. After 20 months I saw surgeon and complained that my foot still did not feel normal. He sent me for nerve testing which came back as neuropathy. He told me to have B12 injections. My new PCP did blood work and said I didn't need it and there isn't much to be done for me. I was going through a sleep study and found I have Restless Leg Syndrome. Was prescribed gabapentin. This has helped with RLS and sleep and the sensations in my foot.

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Profile picture for dettal @dettal

I had a broken ankle which resulted in surgery with pins and plates. After 20 months I saw surgeon and complained that my foot still did not feel normal. He sent me for nerve testing which came back as neuropathy. He told me to have B12 injections. My new PCP did blood work and said I didn't need it and there isn't much to be done for me. I was going through a sleep study and found I have Restless Leg Syndrome. Was prescribed gabapentin. This has helped with RLS and sleep and the sensations in my foot.

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Hi @dettal, Welcome to Connect. It sounds like the gabapentin gave you back some quality of life with the neuropathy symptoms when it was prescribed for the Restless Leg Syndrome. Were your symptoms only in the foot that had the surgery?

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Profile picture for John, Volunteer Mentor @johnbishop

Hi @dettal, Welcome to Connect. It sounds like the gabapentin gave you back some quality of life with the neuropathy symptoms when it was prescribed for the Restless Leg Syndrome. Were your symptoms only in the foot that had the surgery?

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Pretty much for now. Foot/ankle and lower leg sometimes.

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Question on compression socks. What is a good brand to wear?

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Profile picture for dettal @dettal

I had a broken ankle which resulted in surgery with pins and plates. After 20 months I saw surgeon and complained that my foot still did not feel normal. He sent me for nerve testing which came back as neuropathy. He told me to have B12 injections. My new PCP did blood work and said I didn't need it and there isn't much to be done for me. I was going through a sleep study and found I have Restless Leg Syndrome. Was prescribed gabapentin. This has helped with RLS and sleep and the sensations in my foot.

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you are fortunate that gabapentin works for you. It did not for me.

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Profile picture for taytamar @taytamar

Started getting pins and needles about a year ago out of no where.. my night started with 3 brain zaps, went to the ER all brain and heart testing was normal. After leaving I started getting the pins and needle pricks currently seeing a neurologist and they just cant seem to figure out the cause 🙁

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I'm assuming that you have gotten an EMG and MRI and and imaging to see if you have a nerve damage in your back I have a couple discs that are missing in my lower back I have degenerative disc and sciatica I think that adds to my diabetic neuropathy I have type 2 diabetes I might take gabapentin I am praying and changing my diet and I've got my A1C from 6.4 down to 6.1 and my cholesterol is better I'm eating berries blueberries mixed berries avocados spinach occasionally broccoli I'd like to eat more salmon I try to eat a low fat cottage cheese and yogurt and just making tweaks like this my cholesterol is getting better my triglycerides are getting better I drink a lot more water I don't drink pop anymore I am battling with coffee the caffeine is not good for nerves I was told this by American diabetic Association I was told this by Calgary neuropathy Association and so I am really battling to cut back on coffee and also chocolate which has caffeine in it and the sugar is not good for my diabetes either but just I trust in the Lord and I keep praying I ask other Christians at church to pray at different churches and a lot of Christian friends that I have I asked them to pray I am making progress It's it's slow I was misdiagnosed for 4 years with depression and the Lord sent a doctor to me that gave me the right medication for anxiety and it helped me to be able to start driving the car and to be able to quit rocking when I was sitting and I was able to sleep at night without sleepwalking and also I am able to watch movies and read concentrate better and I just thank God he's my savior he died on the cross for my sins and rose from the dead he's the great physician

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