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Gabapentin for non-diabetic neuropathy

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Destiny7
Destiny7

I have been dealing  with severe burning in my feet and hands for about three months.  I am currently taking gabapentin 300 mg four times a day, which provides limited relief.  I have not encountered any problems with the gabapentin, but it is certainly a drug that I do not wish to take for the rest of my life!  Does anyone in the forum have burning in the bottom and heel part of their feet? Also, at times my hand are red and burn also.  If so, what have you done for it?  The doctors I have seen so far do not seem interested in finding the reason for the non-diabetic neuropathy.  It is so frustrating.  I would appreciate any feedback!!

0 likes, 43 replies

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  • george26396
    george26396 Destiny7

    Posted

    I'm new here have had a history of back issues that rarely bother me now. I have a burning on the bottom of my feet.The right foot more than the left. About a year ago I had this feeling on both feet that felt like I had wax paper or glue or something on the bottom of both feet. I asked my Doctor about it and he,without doing any tests said it was neuropathy and he would prescribe gabapentin to me. At the time it didn't hurt, it just felt strange so I declined but now,for about the last several months the burning is really getting to me. No problems with my hands/fingers but I've been getting severe cramps in my legs mostly at night that go away usually by getting out of bed and taking a few steps. The muscels get hard as a rock. My question is, does gabapentin take away the burning and has anyone had the cramps and the wierd feeling of something stuck to the bottom of your feet. Thanks
    • Destiny7
      Destiny7 george26396

      Posted

      Hi George!  For me, the gabapentin does help with the burning to a degree.  For example, today I have had the burning pain non-stop and even the back of one heel hurts too.  Other days the pain is much more tolerable - mild.  Honestly, not sure I could handle this pain without something.  I do not want to take narcotics.  I have not experienced the cramps and weird feelings/sensations that you asked about.  I suspect that my pain is coming from my back.  Interestingly, a few weeks ago I went to a chiropractic and he did an adjustment.  Good news- I had no foot neuropathy pain for about two weeks.  Bad news - after the adjustment, I had back pain.  Now the back pain is gone and my feet are on fire!  Can't win....
  • tracy35015
    tracy35015 Destiny7

    Posted

    Ask for your B12 value (get the actual number) -- don't let the doctor tell you it is "normal". A big problem is that the accepted range for normal goes way too low, typically here in the US it is 200 pg/ml (units same as ng/L in the UK). Neurological symptoms can occur in the gray area between 200 and 450. Anything under 500 should be investigated.

    In the fall of 2014 I became gravely ill with terrible neurological symptoms (burning feet, pains up and down my legs and back, depression, insomnia, horrible awful feelings of malaise). I'd complained earlier in the year to several doctors about fatigue, waking with numb hands, pains in my feet, and hair loss, all they would do was prescribe antidepressants. Finally one doctor thought to test my B12 and it was 196, just barely under the low cutoff of 200. My GP did not think my symptoms were due to low B12 but he was wrong. Mine was caused by pernicious anemia so I have to get B12 shots regularly.

    Risks for B12 deficiency include taking certain drugs long term (PPIs, H2 blockers, metformin), gastric surgery, vegan/vegetarian for a long period of time, and pernicious anemia (which can run in families).

    • Destiny7
      Destiny7 tracy35015

      Posted

      Tracy - thanks so much for sharing your experience regarding your B12  -- interesting and helpful to me.  I will get a copy of my most recent blood work and check things out.  Doctors, and their staffs, are too quick to say everything looks normal these days.  My white blood count was low last time - first time ever.  No explanation was given...  Are the B12 shots helping you?  Are you taking gabapentin?  Hope you are feeling lots better now!
  • tracy35015
    tracy35015 Destiny7

    Posted

    I have been on gabapentin, then later switched to lyrica, then weaned off of lyrica. Even though my foot neuropathy is bad I found the side effects of those drugs to be far worse. Currently the only med I take regularly is remeron (antidepressant) at night which helps me sleep and keeps my appetite up. The B12 deficiency induced depression caused all sorts of GI issues and I lost 25 lbs which wasn't good since I was tall and relatively thin to start with at 5'10" and 150 lbs. I also take various vitamins and minerals, and betaine HCl for digestion. I'm gluten free now as during the course of this illness I discovered I'm sensitive, as many others are finding out these days.

    We will see what happens in the long term. Lately I have been having lower back pain and weird pains in my legs at times. I'm never sure if it is back trouble flaring up (I've had several disc bulges over the past few years) or just more fun with B12 neuropathy.

  • Margot49
    Margot49 Destiny7

    Posted

    Interesting about the B-12 discussion.  The Neurologist I saw last week at Stanford ordered that to be checked, don't have the results yet.  Came home and checked my Labs on line with the group I go to and graphed it.  I was 416 in March, '14.  325 in August, '15.  254 in March, '16 which is "just" within the low normal!!  This last one was done by my Endocronologist!!  I think I mentioned it to her, she knows my symptoms, but was to,d it was in the not Al range.  You can bet I am going to pursue this is this last test is low.  I am not happy!!  Right that doctors are too damn busy to check records.  My GI doctor is pretty good but that is about it!  You have to be proactive.

    my tie numbness and burning in my soles may be coming from my back, which is in bad shape due to Osteo.  They want to see if PT will help which is mostly stretching and the bike.  Tried  traction and I was in bad pain for 2 days so no more of that.  

  • tracy35015
    tracy35015 Destiny7

    Posted

    Margot, there is a book about B12 deficiency written by a nurse and doctor that you really ought to read. I'm not sure what the rules about posting book titles here but it should come up near or at the top of the list when you search amazon books on B12, costs about $10.

    Your B12 is slowly dropping over time and could be the cause of your burning feet, called Grierson Gopalan syndrome. There are two other tests that can help confirm a B12 deficiency, particularly when it is "low normal" like yours: MMA (methylmalonic acid) and Hcy (homocysteine). If MMA is elevated then you are definitely B12 deficient. Elevated Hcy can occur for other reasons too, and it indicates a stroke and cardiac risk. You may also want to ask for an intrinsic factor antibodies test and parietal cell antibodies test. These last two are tests for pernicious anemia.

    Like you I have some back issues. Between that and neuropathy from my B12 deficiency, I'm not feeling very good these days.

    I live in the Bay Area too. You are very fortunate to have access to Stanford which is a world class medical facility. My HMO (largest in the state, am sure you know which one it it) was very negligent in my situation. I had an endocrinologist, neurologist, GP, and psychiatrist and NONE of them thought to check my B12 even though I was complaining about severe neurological symptoms.

     

    • Margot49
      Margot49 tracy35015

      Posted

      Shortly after I posted, I got a message from Stanford on my tests and a note from the dictir. He advised me to start B-12 daily as I was on the low side!!  What the hell are my doctors doing, or not doing, here?!  Why didn't the Neuro doc here check it?  I go to Gould over here and not I pressed but I do like my GI doctor here.  I did a self referral to a GI doctor at Stanford. Hard to choose between them and UCSF.  Yep, seen all those specialists too and some!  Specialists here in the Valley are few and far between and few good ones.  It is just a real pain to have to travel so far, never know about traffic and I care for my 94-year old mother, who lives with us, and it is a problem finding someone to stay with her.  I asked my PCP again to refer me to a Rheumatologist.  Ine here is supposed to be pretty good.  Finally got in to see him and he ran more blood tests.  I think he is pretty sure I have Sjorgen's even though blood work and two biopsues were negative.  I deal with chronic dry mouth and throat.  It is horribke and now causing major dental issues.  

      Thanks for the info on the book. Unfortunately, my reading ability is limited as I now have Macular Degeneration in my left eye and have central vision loss.  I have to get eye injections every 6-8 weeks.  I will check in to it.  I have been reading some stuff on line.  Actually, give it to my Mom daily to see if it would help with her dementia but it hasn't.  

      What dise do you take?

    • Margot49
      Margot49

      Posted

      Oh, meant to add, if you want to see a Neuro doc at Stanford,I really like this Dr. Muppidi.  He actually told me, if I had any questions, to call him and we could talk as he realizes I live so far away.  
  • andreia54740
    andreia54740 Destiny7

    Posted

    Zobria is a great nutritional product that helps with neuropathy.
    • Destiny7
      Destiny7 andreia54740

      Posted

      Have you personally taken it?  Where can it be purchased?  Thanks.....
  • tracy35015
    tracy35015 Destiny7

    Posted

    According to the Zobria web site (google it), it is vitamin B1 (as benfotiamine, which they say is a more bioavailable form) and vitamin B12 (as methylcobalamin), plus fillers. Nothing you couldn't get on your own by purchasing those vitamins separately.

    But be forewarned, if you supplement B12 then you need to stop taking it for 3 months if you are planning to get it tested. Otherwise your level can be artificially high.

    • niles49639
      niles49639 tracy35015

      Posted

      I have used Zobria, Neuropaquell and nerve renew. Neuropaquell gave me the best results by far. I believe that the alpha lipoid acid and l-arginine components are important along with the b-vitamins. Zobria was also terrible to deal with as a company. Neuropaquell was easy to buy on Amazon and I love Amazon customer service and quick deliveries. I'm a prime member so I also get free shipping which I really like Hope this helps. smile
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