Non Diabetic Peripheral Neuropathy


I'm brand new to this website and what an informative website it is.

To give you an idea of my background, I have suffered from non-diabetic peripheral neuropathy since August 2011.

I was prescribed Gapapentin, which did not have any effect. I am now on Zydol and at last am leading an almost normal life practically free from pain.

I would love to talk to anybody else who might suffer from this horrible problem.

Thank you, Lesley_J

48 Replies

  • Hi, welcome to the site. the drug Gabapentin seems to be prescribed for alsorts these days. Its an anti epilectic drug. I was prescribed it for a persistant cough, when I questioned this my GP said it was good for nerve pains, but my pain is arthritic. Glad you have now been given a different drug and it works. Sorry I don't have your illness, it was just the drug prescribed was the same. Hope you find someone with like illness soon to chat to

  • Hi Lesley,

    Really not sure what's wrong with me...but I have nerve pain...that's for sure....had so many tests.....they still don't know! I have been on so many drugs too. If you want to chat then I'm here.


  • I am not diabetic but I am pre diabetic and I suffer from this especially in my feet and its painful ,when I told my doctor he just said I will keep my eye on that but no more has been said .I am sohappy you have some relief .x

  • Dear Lesely

    I am so glad you have found the med to relief your nondiabetic pn pain. I will try to check it out because .

    My case is similar to yours, I found this article regarding to the issue :

  • Hi Lesley,I have just joined this site too,I also have peripheral neuropathy,I see you posted a couple of months ago,so hopefully you are still here!

    I noticed that there are not many many recent posts,that seems a shame.I don't have diabetes either,but was found to be very deficient in vitamin B12,& have to have regular injections now.

    I was also supposed to take an anti epilitic medication,for the pain,but my lung specialist, said not to,as it could interfere with my lungs? Not sure why!

    I find night time,is sometimes the worse,when in bed,do you have that problem?

    Hopefully,you are still around,as it would be great to talk with someone,who has the same problem.

    Take care, Wendells.

  • Hi Wendell's just wondering if your still around as it would be good to talk to talk to someone with PN mine is due to B12 deficiency.


  • Hi Vikki,good to hear from you! Yes I put a post up, but never had any feed back,so gave up with it!

    yes mine was also found to be from being B12 deficient,I still have the injections, but monthly now,it hasent been to much trouble, till the last 2 weeks, where i find my legs are giving me a problem,will have to ask the Doc. about it.Dont know about the memory,is that connected with this?

    Anyway, let me know how you go,will be glade to hear from you,

    Love Wendells xx


    The above video is a presentation by Professor Smith who did research at Oxford into B12 and brain shrinkage....It starts 4 minutes into the video. Well worth a watch. I doubled my dose immediately and bought B12 patches from Amazon :-)

  • Hello Wendells, I have just joined this site too and I have had peripheral neuropathy for about ten years.

    Luckily I no longer work (retired), because I don't think I could manage a single day's work now. I make it through the day with the help of a rest about 2 o'clock, because I get dizzy from the effects of a stroke I had last year. Mornings I keep busy with housework and the radio, which distracts me from the pain. Then, if I've managed to sleep, I can go out somewhere - more pain distraction! I try to exercise in some way every day, even if it's just walking. In the evening I settled down in front of TV, and occasionally dunk my feet in cold water with ice cubes in it - natural pain relief, but I also rely on gabapentin, which I can't do without. I think what I've found helpful is to keep looking for and doing things I enjoy, because stress, worry, anger, loneliness etc definitely makes the pain much worse. I just can't afford those things now. If I wake in the night, I keep an enjoyable book to read, as this again is distraction, and if you're not going to sleep anyway, why not? Hope you still check out this website, because I'd like to share stuff re PN with you. Hope you are finding some solutions for your pain, and taking gentle care of yourself.


  • Hi Scilla,lovely to hear from you,I dont know why,but people come on the site,give there story,& never heard of again!!

    Congrats to you,it seems you have it all worked out on how to cope!

    Interesting to note,the gabapentin helps you.

    I have been having a bit of driving probs. at the moment,even though it's an automatic.My left foot ( which I use for drive & brake) seems to curl up at times,& I find it hard to feel,if this makes sense!

    Anyway,it will be great,if we can share together,you're always welcome to PM me.Talk soon Wendells xx

  • Hi I've just joined I have non diabetes PN had it since 2010, I was wondering how you are now ? It affects me all day long, if you don't mind asking does it affect your memory as it does mine really bad !



    ...a talk by Professor Smith who did research at Oxford into B12 and brain shrinkage. Starts about 4 minutes into the video.

    Also lots of information.....

  • Hi Marz,txs for posting,very interesting,worth while to watch certainly.

    Makes you think doesn't it? xxx

  • Hello Vikkioby

    My name is Eddie and I suffer Too. If you are still here let me know and I will tell you my story. Eddie G.

  • hi I don't know if you are still here but I do to. I have short term memory loss. I do things that I simple don't remember. Like it never happened. My wife would ask me a question about a dentist appointment I was at and I don't remember. And it goes on and on. I can't remember peoples names or names of place I've been recently .Is this what happens to you?

  • Hi Wendell's, Having a real bad day today, legs are painful and weak, will keep in touch as it would be nice to speak to someone with similar condition x x x Vikki x let me know how you get on with the Dr if you haven't been already x

  • Hi Vikki,txs for replying!

    My legs are still playing up,went to Doctors,but not very helpful! I have to see Specialist April 4 I think,so hopefully better luck with him!

    Sorry you're not the best either,do you take any drugs for it? Take care & keep in touch xxxx

  • Good morning Wendells I've tried both the anti epileptic drugs no use just use regular pain killers my specialist wanted me to take a mild antidepressant ! Not sure about doing that at them moment. I also go to the specialist in April not sure why as they've already told me there's little they can do x did have a MRI in Nov as,GP thought I had MS ! As NP symptoms are identical thankfully scan was clear x

  • Have you read up on vitamin D ?

  • Good evening from me!(in OZ) thank goodness you didint have MS,yes I heard it can mimic that,& something else I can't remember now,lol!

    That's interesting those meds. Didint help you,I refused to take them,because I read they can exacerbate lung probs.My Doctor wasn't impressed though,as he feels they are the great answer!! I have Copd,by the way,that's why I was reluctant!

  • Sorry it flew away on me! Good luck with the specialist,at least they're keeping an eye on you! Don't disregard the mild antidepressants as they could help you! xx

  • Hi everyone. I feel better just knowing you are out there and working on solutions. I have neuropathy primarily in one foot and some nights gabapentin works and sometimes it does not.

    When it does not, I go nuts in the night. Maybe i will try B12 even though my doctor did not tell me too. My daughter has restless leg syndrone which is related and after many other suggestions, her doctor put a patch on her and it seems to work. Some nerve drug.

  • I started having tingling feet when I was pregnant with my son. He will be 3 years old and I have had numerous tests done. I am not diabetic (or pre diabetic) although I am overweight. Unfortunately I believe doctors feel like that is the issue. I have had a CT done to rule out MS since others in my family have had it. Glad to see these posts and now I can go back to my doctors with other information. I am learned to live with the discomfort and pain but I am hopeful I can get some relief! I am only 40 years old and have a young child I keep up with!

  • Hi Michgal,how did you go with the Doctor? Don't feel guilty about being overweight,I was not,but still got it!

    I don't know what your Doc.put you on,I take Lyrica( pregalbin) 1 in am & pm,have found it quite effective.Im only sorry I didint try it earlier!

    I can quite understand with having a young child,you need to keep up with him/her!

    Let us know how you go,good luck! xx

  • Hi,

    I am new to this site too. My problems started January with chilblains which then progressed quickly to burning/tingling feet and legs. Doctor prescribed Nifipidine but they made the flushing and pain much worse and I didn't stay on them after a week. I have also been on the beta-blocker Atenolol for 12 years which I gathered from doctor can cause problems with circulation and has now prescribed me a different one. I have symptoms of neuropathy and Raynaud's and still have chilblains. I have an appointment next week to see a specialist has doctor thinks RA could be involved. I have been pre-diabetic for over a year now so am very interested in your post regarding non-diabetic neuropathy which my doctor has not discussed the possibility of.


  • Hi, I am a 35 year old woman , I found out that I have neuropathy in both arms and hands along with down both legs into my feet !!! I hurt pretty much all the time . I am on medicaid cause I am already disabled because of back surgeries and seizures !!!! Does anyone know how it has spread so much in me and what should I expect to happen !!! I am so scared of not being able to use my legs soon by the way it is spreading , can anyone please talk to me and help me to understand what is going on ??? I am so dang scared !!! I have a great husband of 15yrs and two kids one 16 and the other is 12 !!! I just wish I could make this go away so my Family didn't have to see me go though this !!! Thank You to anyone who can help me understand !!!

  • Hello Weebeth

    Your post was nine months ago. Hope you are still here. I have neuropathy also, but it started in my legs. I'm not a diabetic but suffer all the same. I was told my neuorpathy was caused by alcohol. I didn't stop drinking for about 9 months give or take. My question to you is, do you drink any alcohol ? I mean even one drink. If you do, that could be your problem. It was mine. If you don't drink, then I really don't know. My problem has spread now to my hands. I've been diagnosed with carpool tunnel syndrome. My operations are coming in Dec 2015. I too am depending on my wife and kids to help me do all the work I use to do. Pls. respond. Hope your life is good as possible Eddie G.

  • I developed that almost a year ago & like my physician

    keeps saying, "You're not a diabetic". I passed my last

    two fasting blood sugar tests. And test every few days.

    My physician just put me on Gapapentin 300 MGS , 3

    times a day. And soon I will go through a nerve study

    through a different physician. One time my mom tested

    me with hers & I was was at 210, so after being tested at

    physician's office, he got me a tester & supplies, I changed

    my diet which worked. Mom has to test & take a pill & her

    mom was on a early morning injection.

  • just came across your post (Nov. 2015). I have the same nitemare since May 2013. I take Gabapentin 2 tabs 600 mg 4x daily and it helps keep in line. I never was prescribed Zydol. I also take Oxycodine 30 mg 8x daily to maintain all my other pains. My pain in my feet is so bad I can only work two hour (avg) daily. I was forced to retire, The pain is in my legs and I was just diaignosed with carpool tunnel syndrome in both

    my hands. Life has not been easy on me in my 60's. let me know if your pain has progressed or your pain has stopped. Eddie G.

  • Hi,I'm new to this site.had p/neurophathy for 4years.don't like taking medication If I can avoid it.Taking a low dose of Lycria at the moment.i'ts helping a little.I find this site very helpfull.reading other people's comments. regards to all

  • Hi,I'm new to this site.had p/neurophathy for 4years.don't like taking medication If I can avoid it.Taking a low dose of Lycria at the moment.i'ts helping a little.I find this site very helpfull.reading other people's comments. regards to all

  • I have the same thing. My dr. Can't diagnose me properly without diabetes. But I have no diabetes. There has been speculation about my old doctor that said that my neuropathy without diabetes was caused by me being severely beaten for a number of years by my foster mother

  • Hi, I just came across this site while researching PN. I'm not a diabetic either. I have been suffering with this pain for about 7 months now. My doctor has taken me off work going on my 3rd month now. She doesn't want me on my feet for more than an hour, I work 12 hour shifts. I'm only 43 and I can't see myself getting approval from disability nor being able to survive off it. I have also been prescribed gabapentin 300mg and nabumetone 500mg, neither seems to be helping out much. I'm schedule to see a spine specialist tomorrow and nerve specialist 3 weeks afterwards. I hope & pray they find a solution for this pain real soon. I'm sorry to hear about your pain but I am glad to hear I'm not in this alone. 

  • It's so strange. I do not understand. Mine started like as if I had a sun burn on the bottom of my feet, now I feel silly telling people I can't feel my feet hardly at all, but yet they hurt very badly. Seems to be be going upward a little above my ankle now. No diabetes, every blood work comes back perfectly.

    The only thing I can think of is all this started after I had a hernia surgery which was elective and the biggest mistake I've ever made.. I also am on gabapenten, no affect on feet, but helps me sleep, somewhat. Even put on some other med I stopped taking because it caused extremely vivid bad dreams... (Edit) the drug was Lyrica. I could not tolerate it. Really messed with me mentally

    I have no idea what to do. My quality of life is going down hill everyday.

  • Hi @Bpriddy74 I think we are all in similar situation. Mine started 7 months ago. All bloods normal, no idea what is causing it or a cure. Quality of life is going downhill as you say. As for what to do, you just have to keep going and trying different things. I am trying walking for 30 mins and vitamin b12. so far no effect but its early days.

    Good luck with coping with it, you are not alone.

  • Thanks! It's got so bad, I've seemed to have developed hammer toe and apparently when walking, I'm bruising my toenails. I have even placed a TENS Unit on my feet (4 probes) and placed 2 ends on areas of my leg I can feel, such as under my knee and absolutely no feeling in the feet, but could feel the tapping under my knee. So weird. Posting long term meds I've been on to see if anyone else has been on these, only thing I can think of.

    Adderall XR




    Thiatrampizide-HCTZ (SP) wrong

    I've been on these meds, the past 10+ years. Curious if there is anyone in common taking any of these long term.


  • I am so glad to have found other people with PN. I have RA and developed PN a couple of years ago. I noticed he numbness in my feet for some time and then it started creeping up my legs. Also my hands are very painful. I am not sure what happened but my Rheumy tells me the arthritis must be damaging the nerves in my spine. I have trouble with my left eye, focus is bad when walking about, feel a bit drunk!. I am due to see a Neuro man but it seems to take forever for an appointment. Get so tired. Wonder if it is MS.

  • There has to be some common denominator that we all have. The key would be sorting through what is what. Possible long term medications, surgeries, illness, life events, etc...

    I posted long term medication's I am on and a surgery I've had. Also I am currently only 42 and this all started back in 2008-09.

    Bummer for me right now is I currently do not have good insurance.

  • How bad is your neuropathy and what gives you relief from the pain ? I was told mine neuropathy was from alcohol. But it could have been many other things. I've had it now over three years and I do see some improvement in my condition. I don't have to take gabapentin as much and I can stand on my feet and work for longer periods. So I do see some light at the end of the tunnel. So don't give up. Your condition, non diabetic neuropathy has a better chance of improvement than diabetic N.

  • @eddymo My pain is pretty intense, especially at night when going to bed. Close to the point where if it was any worse I would go to the E.R.

    What kind of alcohol? Like heavy liquor drinking or drinking a beer after work? I've done that and I do not even finish that. I did take an alcohol assessment and was in the "social" area. Not close to abusing it, but I've always wondered about that, however I know a lot of people, both over weight and average to fit, that drink extremely heavy and have no problems whatsoever. I was told it was my weight and I'm a big guy. Mostly muscle though, but do admit about 30lbs over weight. 6'2" 290lbs... I have dropped down to 255lbs about 9 months ago and no change at all.

    I can feel the numbness starter to go up my ankles up toward the mid part of my chins / calfs. Feels like I'm wearing socks. So weird!

  • My friend, if your still drinking you gotta stop. I my have read you wrong but sounds like your drinking. I'm 5' 6' 175lb at 67 years . This neuropathy has no favorites, it attacks where it wants. I had one beer after three years and it went right to my feet the next nite. Nite is the worst time for this nerve problem. I couldn't sleep with my feet under the bed covers, even in the winter. then when my system got cleaned out from alcohol it got better. Hot burning needles, the weirdest f--k up feeling. You should read about it on the inter net so you can know what to expect from this. Now I've heard of a cure for is type of neuropthy, but I don't know. I went to a doctor here in my area and for five thousand dollars to start, he would with special vitimins , minerals and what ever, they would (with no guarantee) cure you. So let me know if this helps you. I still take Gabapentin at nite to stop the burning in my feet.

  • I would like to suggest toxic chemical exposure. Read up on Anniston, Alabama and/or Ft McClellan.

  • in the above replies, two people have used the term "carpool tunnel syndrome". Please know that there is no such thing. The correct term is "carpal tunnel syndrome".

  • Hi Lesley, I have lived with a genetic form of neuropathy for 25 yrs, diagnosed by Mayo Clinic. It has rendered me disabled and been a horrible condition to live with. If I don't pace myself and overdo my activity, I am rendered to the point where I can not walk due to the pain. I am on medication, but right now I am in a severe flair and in a great deal of pain. But responsibilities go on and I have to manage them also. I agree with you, it is a horrible problem

  • Hi- I just discovered this site. I have had peripheral neuropathy for about 30 years. I developed type II diabetes 12 years ago, secondary to taking Lipitor and a cortisone asthma inhaler, but it was quickly brought under control and has stayed in good control all that time. The doctor I had for 25 years was well aware that the neuropathy preceded the diabetes by many years, but it was worked up twice with no definitive diagnosis to account for it. The problem is, I moved 600 miles to another state and got a new doctor. This doctor just assumes it is diabetic neuropathy, and wrote that diagnosis in my chart. When I pointed out to him that I had the neuropathy for many years before the diabetes, he just snickered and said "oh, you probably had the diabetes all along and just didn't know it". (!) Now I have to figure out what IS causing it, so I can shove his opinion up his butt! I'm not sure where to start. If two neurologists in a major East coast city couldn't figure it out, I'm not sure how to get any answers in a small town in the rural South. To make matters worse, it seems to be progressive, and I am also (for the past 2 years) getting other weird symptoms that might possibly be related, but I'm not being listened to for any of that, either. I'm not sure I will get any answers on this site either; I'm just sounding off. I'll keep searching.

  • Hi, my name is Tammy. I have neuropathy pain three lower extremities, especially the left side. I am not a diabetic. The doc put me on cymbals. It helps, but like I'm getting immuned now. I had EMG done, MRI, Xrays, all test are mormal, can't figure out why I have this pain, it's scaring me more than anything.

  • I am a 46 year old male the doctor put me on 800 mg of Gabapentin 4 times a day it helps very little he also put me on 30 mg of oxycodone 4 times a day I hate it because i am addicted to the oxycodone and the neuropathy that i have affects the bottom of my feet and a area of about 8 in x 6 in on my upper left leg I have no feeling there and it is always hurting it hurts to walk sit and even wear clothes but I have found out for the feet that if you buy a pair of crocs at a shoe store it will help with your feet they run about 40 bucks so they are not to expensive. And yes i do feel for anyone who has these problems I hope this helps who ever reads it. Please have a wonderful life and be kind to everyone you meet.

  • Hi I too am new to this site and have posted one post. I am on Gapapentin and have had some luck with the combo of medication I take. What is Zydol and can you get a good nights rest? I would love to hear what you have tried :) Pammy x

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