Living with Neuropathy - Welcome to the group

I've been a member for a few months but have found it hard to understand how to communicate well. Right now I am on Gabapentin 1800mg daily which is as high as my neurologist will go. I have been referred to pain management. Until then the burning is almost unbearable. Also electric shocks to my toes. I need any and all suggestions. Thank you.

Hi, I’ve just joined. I’m 67 years old, have had neuropathy in my right lower leg since a ruptured disc three years ago, with subsequent surgery for spondelothesis. I’ve had 4 courses of Physical Therapy- to establish and update my Home Exercise Program and for treatment to “normalize gait pattern”. I have weakness in my leg, numbness/tingling in my foot, the start of hammer toes due to the muscle imbalance. PT has made special orthotic shoes which give me a push-off when walking. I went to a University Med School PT Clinic to be evaluated for and to try the “Walkasins”, didn’t work for me due to the reduced feeling in the sole of my foot. My balance is off, I need to concentrate on my gait pattern while taking each step and avoid uneven surfaces (no more walking on the grass or gardening). I have been able to discontinue Gabapentin. I use visualization techniques to short-circuit the feeling of pain, have been very successful. During this time of COVID, I am finding it very discouraging and disheartening to have this “new” me, had a little too much magical thinking that somehow this PN just would go away.

Hello @centre, Welcome to Connect. The changes we sometimes have to make to compensate for our neuropathy symptoms and other health conditions can be difficult to say the least. It is great that you have been successful in managing your neuropathy pain without medication. The technique you describe sounds much like neuroplasticity. I'm wondering if you might also find the following discussions helpful.

-- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
-- Amazing website/App in Dealing with Chronic Pain; curablehealth.com: https://connect.mayoclinic.org/discussion/amazing-websiteapp-in-dealing-with-chronic-pain-curablehealth-com/
-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Have you tried any exercises or physical therapy to help with your balance?

Hi @mcd123, I'm wondering if you might find the following discussion helpful - Mayo Pain Rehabilitation Program where @rwinney has shared this video from Dr. Sletten, Mayo Clinic Pain Rehabilitation Center describing Central Sensitization - https://connect.mayoclinic.org/comment/595133/

I was very concerned about gabapentin side effects but to date, no side effects at 900mg a day and adding 100mg every week to 3600mg daily. I believe it is helping reduce the tingling of my feet and lower legs. unfortunately, the PN progresses but with less discomfort I am told. Following WinSanTor trials for pirenzepine touted as a potential reversal of PN as the nerves regrow or so described. Good luck my friend.

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

Glad to join up, thank you. Noticed a bit of numbing under the toe pads, fingers too , beginning a few months ago. Now the doctor has me on Metanx the last month. Not sure it's helping yet. It seems to be progressing a bit....ugh.

Hello @korgman123, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You mentioned that you have a little bit of numbing in your toes and fingers starting a few months ago and the doctor started you on Metanx (vitamin B supplement). Here is some more information on Metanx in case you want to find out more -- Metanx Review – 8 Things You Should Consider: https://www.brainreference.com/metanx-review/

Did your doctor run any nerve conduction tests or other test and provide a diagnosis of neuropathy?

He says it's neuropathy.