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.

@tgcorin

I thought I joined the group. I get the posts on my email and have responded but never got any replies.
I have has neuropathy more than 15 years and it has gradually gotten worse.
The pain is now next to unbareable at night making it impossible to sleep. nothing seems to help. My doctor is no help. I have tried everything hw suggested.
I wish somone could say how they have help that lets them sleep at night.
I walk with a walker during the day, and somehow get through it.
please let me know if you have found pain relief.
Georgia in Austin, TX

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Hello @tgcorin, Sometimes members don't know to click the Reply button under a message and type their reply to a member at the bottom of the screen in the Post Comment box which is directed to anyone following the discussion. When you click the Reply button or type the @membername, that person will get an email notification that someone has replied to their post.

Sorry to hear you haven't been able to find much help for relieving your neuropathy pain especially at night. Wonder if you might find the following discussion helpful:
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/.

You might also want to look through the list of complementary and alternative treatments listed on the Foundation for Peripheral Neuropathy website here to see if what some people have found helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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@tgcorin

I thought I joined the group. I get the posts on my email and have responded but never got any replies.
I have has neuropathy more than 15 years and it has gradually gotten worse.
The pain is now next to unbareable at night making it impossible to sleep. nothing seems to help. My doctor is no help. I have tried everything hw suggested.
I wish somone could say how they have help that lets them sleep at night.
I walk with a walker during the day, and somehow get through it.
please let me know if you have found pain relief.
Georgia in Austin, TX

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I’m so sorry you are enduring so much pain. Have you seen a neurologist about your issues rather than a GP? They are more knowledgeable about neuropathy drugs and what works for each person. If not you might want to ask your doctor for a referral. I know when I first got neuropathy I was in so much pain until I was referred to a neurologist in the hospital and my pain went away with his help. I still have the numbness though and that produces a lot of issues as well but pain is not one of them. I hope this helps you. Keep the faith. It will get better with the proper help! Hugs

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@tessie63

I’m so sorry you are enduring so much pain. Have you seen a neurologist about your issues rather than a GP? They are more knowledgeable about neuropathy drugs and what works for each person. If not you might want to ask your doctor for a referral. I know when I first got neuropathy I was in so much pain until I was referred to a neurologist in the hospital and my pain went away with his help. I still have the numbness though and that produces a lot of issues as well but pain is not one of them. I hope this helps you. Keep the faith. It will get better with the proper help! Hugs

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thank you. I have been looking for a neuroligist I can go to, and will make an appointment.
sounds like a last resort.
georgia

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I would not recommend this to anyone, but for the record I mention my recent experience. I lifted a box that was too heavy and ended up with a compressed fracture in my back. There is treatment for that, but before i could get it, I twisted my left foot and broke two toes and ended up with a huge hematoma that had to be operated on so I have a large hole in my ankle. The point is that this has gone on for about two months and my peripheral neuropathy sort of disappeared. It is starting to come back as at night I get pain in my heels especially the right one. I put blue emu on it which minimizes the pain. I guess I wonder why the other injuries minimized the P N. Solutions can be strange.

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@ronoejello1

I know what you’re going through. My doctor has prescribed 5mg oxycodone and it really works for me. It’s a low dose, and does not make me over euphoric or lethargic. It gives me short term relief and I’m not embarrassed to tell others. As for Dr. Walk I feel that he was much better than the others whom I felt gave me the once-over- cursory inspection UGH!!
He had me receive a cat scan, blood tests, and he personally will be performing an EMG test in a month.
I will keep you in the loop as to the outcome.🙏🙏🙏
We all know that there is no silver-bullet, and that hope and spirit are our greatest gifts.
Susan May tomorrow find a warm and peaceful light on your path!
Stay confident
Warmest Regards
Ron

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@ronoejello1 How did the EMG test go? Did you learn something new from that?

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@tgcorin

I thought I joined the group. I get the posts on my email and have responded but never got any replies.
I have has neuropathy more than 15 years and it has gradually gotten worse.
The pain is now next to unbareable at night making it impossible to sleep. nothing seems to help. My doctor is no help. I have tried everything hw suggested.
I wish somone could say how they have help that lets them sleep at night.
I walk with a walker during the day, and somehow get through it.
please let me know if you have found pain relief.
Georgia in Austin, TX

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I usually take a Tramadol 50 mg pain pill around 9-10 pm for my foot pain.
Since I’m a night owl,I will take 400mg of Ibuprofen, around 2:00am before bed.
That helps me sleep,but around 7-8 am I will wake up with pain in my feet, horrible pins and needles, and stiffness in my right hand.
I’ve also started using CBD salve and it helps a little, not as much as I thought it would.

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Hi everyone my name is Leslie and I am 46 years old. I have sensory ganglionopathy. With my disease I have hard core neuropathy in my hands and feet. I have had this for a year. I was on Gabapentin for a year to realize it made everything worse. Got tapered off and things got a bit better. I have equilibrium, balance, and dead nerves. They go from my elbows to my hands. And from my knees to feet. That is why my neuropathy is so bad. My question is do compound creams work for neuropathy?? And if anyone needs to chat. I am no expert with any of this. But am a good listener and think I could benefit from other’s experiences.

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@leslie04

Hi everyone my name is Leslie and I am 46 years old. I have sensory ganglionopathy. With my disease I have hard core neuropathy in my hands and feet. I have had this for a year. I was on Gabapentin for a year to realize it made everything worse. Got tapered off and things got a bit better. I have equilibrium, balance, and dead nerves. They go from my elbows to my hands. And from my knees to feet. That is why my neuropathy is so bad. My question is do compound creams work for neuropathy?? And if anyone needs to chat. I am no expert with any of this. But am a good listener and think I could benefit from other’s experiences.

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Hi @leslie04, There is another discussion started by @jeffrapp that might be helpful for your question on do compound creams work for neuropathy.
--- Topical creams and lotions for Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/topical-creams-and-lotions-for-small-fiber-neuropathy/

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I have neuropathy from alcohol abuse and liver disease. I stopped drinking over three years ago and the neuropathy is continuing to get worse. Any advice or hope it will improve?

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@ppier

I have neuropathy from alcohol abuse and liver disease. I stopped drinking over three years ago and the neuropathy is continuing to get worse. Any advice or hope it will improve?

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Good evening @ppier and welcome to Connect. Good for you to be able to control your alcohol abuse. Unfortunately.......at this point in time, there is no cure for neuropathy and it is a progressive disease. It takes so long for the nerves to regenerate that the brain continues to respond to the pain as the process continues.

My diagnosis was confirmed in 2013. Immediately I was referred to medical cannabis. It has been on my daily list of treatments for 10 years. My usage has increased and so has my tolerance which happens with many medications.

May you be safe, free and protected from inner and outer harm.
Chris.

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