Living with Neuropathy - Welcome to the group

Welcome @jmmyj22, So sorry to hear that you have joined our neuropathy club. It can be frustrating trying to find something that provides relief and it sounds like you are at a point where a lot of us have been in your neuropathy journey. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Probably the best suggestion I can offer is to learn as much as you can about your condition and what treatments are out there that might help. If you haven't already seen it, the Foundation for Peripheral Neuropathy has a lot of great information including webinar videos that you can view on their YouTube channel.
- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
- FPN YouTube Channel: https://www.youtube.com/@foundationforperipheralneu4122

You also might want to scan through the Neuropathy Support Group to see a list of the discussions started by members with neuropathy - https://connect.mayoclinic.org/group/neuropathy/

You mentioned you have tried everything. Are you on any medications for treatment?

@jmmyj22
How long have you had neuropathy? Since you have lost feeling in both your feet & legs it should be 10+ years. I got neuropathy from an auto accident before they really knew much about the condition 30 years ago. I was put on Gabapentin 25 years ago when they said fibromyalgia for me back then. I was properly diagnosed at Cleveland Clinic Weston but it was found to be idiopathic parallel peripheral neuropathy.
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The side effects from 2400 mg Gabapentin per day became horrific once my neuropathy started attacking my autonomic nerves about 5 years ago. I have switched all but 300 mg to using medical marijuana instead. However, I am still on a max dose of Cymbalta & 75% near max of Lyrica.
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I only get 3 hours a day sleeping. I substitute 3 hours a day meditating for the missed sleep (yes I count getting stoned & listening to music as meditation). I never miss taking Cymbalta since I would likely be a complete jerk without it due to the nonstop pain. I never use Sativa marijuana only Indica. Sativa is brain food, but Indica is more for the pain & stress.
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Never trust what the doctor tells you. If you have idiopathic neuropathy, after a decade or so the nerves have died, but your body will remain unscarred with a Teeny Tiny Risk to their practice. Plus, they will only make pharmacy kickbacks off you. They do not make any “real” or “easy” money from you. I ending up telling my new replacement neurologist how to prescribe my drugs. I had read about the side effects already & knew I had been overdosing on the drug. He never even studied my file.
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Googling will tell you once the nerves have died your pain will go away. Has anybody had this happen for real? Not me! Same pain as it ever was.
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You know how people have a really long waiting list to get life saving surgeries? If you have idiopathic neuropathy, once our list reaches 1,000, they throw it away & start over.

Thank you for this group. I have had neuropathy for several years . Last December I had a stroke. Since then my neuropathy has gotten worse along with balance. Some shoes that I wear mess with my balance more than others. IS there a good solution to getting some shoes that help me walk like I am sober?

I dont know for sure but I wear shoes made by Orthofeet. I have recently been diagnosed with sensory idiopathic neuropathy - tingly in my body everywhere - they just started me on generic Lyrica - 2 doses so far - some improvement in the pain but not 100% yet but hoping in a week will be even better - does cause fatigue but am on the lowest dose 25 mg twice a day - what do you take for your pain and how is it helping you. Take care.

Hello @delta1, I would like to add my welcome along with @gnocchi and others. There are a lot of us with neuropathy and balance problems, me included. I switch between barefoot type shoes with flat soles and not much padding and OrthoFeet shoes. The barefoot shoes provide a little more stability for me but are hard for walking any distance due to the jarring effect on the feet and the more cushy shoes feel better walking but also play havoc with my balance if I'm not careful. There are quite a few discussions on shoes for neuropathy if you want to scan through them to read what others have shared - https://connect.mayoclinic.org/search/discussions/.

There are also quite a few discussions on neuropathy and balance that might be helpful - https://connect.mayoclinic.org/search/.

Do you have pain with your neuropathy?

Why do I have to sign in every time I want to read anything? Crazy. Yes I have needle pain and hoping generic Lyrica helps. I do not know why I got this but have to accept it as I am 82. I hate this. Hopefully meds will work. Only had two doses yet. I am not hosting Xmas. Restaurant that’s it. I am not diabetic but got this anyway. Sorry to sound crabby. There r worse sickness. Tx for listening.

@gnocchi Being crabby is A - OK. All of us have had those days at one time or another and life is not easy when you have neuropathy, especially if you have pain as part of the symptoms. I hope the generic Lyrica provides some relief for you.

I'm not sure why you are always having to sign into Connect when you want to read anything. If this keeps happening, you might want to use the Contact a Moderator form and let them know the specifics of what is happening - what device you are using - computer, phone, tablet, etc. and if it only happens if you click Reply to an email notification. Here's the link for the contact form - https://connect.mayoclinic.org/contact-a-community-moderator/.

My name is Marika. I was told I have peripheral neuropathy. I also was told Lupus. The pain in my toes and feet can be quite painful. Is this normal? Is there relief? I already take Gabapentin but has no effect,400mg three times a day. Really could use advice for getting through the pain.

@johnbishop I copied and pasted but got Just Answer which is a scam - maybe eventually it will know who I am and dont have to keep signing in with a verification code as life is complex enough. But thanks for responding - I have only taken two doses so hopefully I will be better by Thanksgiving. Have a good evening.

Welcome @marika0711, Sorry to hear that the Gabapentin is not providing any relief for the pain in your toes. Wished I had an answer for is it normal, is there any relief but it's a little different for everyone with neuropathy as a treatment that works for one person may or may not work for another person. There are a few other discussions you may want to scan through to learn what others have shared:
-- Peripheral Neuropathy caused by Lupus - Anyone?
https://connect.mayoclinic.org/discussion/autoimmune-diseases/
-- Toe Pain Associated with Peripheral Neuropathy:
https://connect.mayoclinic.org/discussion/toe-pain-associated-with-peripheral-neuropathy/
Have you talked to your doctor to see if there may be some alternative medications that might provide some pain relief?