Anyone here dealing with peripheral neuropathy?

Todd, so sorry to hear about your wife's troubles. You are doing the right thing exploring all options and like John Burns says - don't give up hope. There also is a Facebook group - "Our Neuropathy Friends" that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I've been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book "Wahl's Protocol" by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I'm halfway through the book and am attempting to try the first part of the diet but I'm 73 and so set it my ways it's a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

Salena, you can also get it as a softcopy if you have an iPad or tablet. I was able to order it through iTunes and view it in iBooks on both my iPad and iPhone. That way if I'm waiting somewhere (story of my life) I can read it using my phone. I've only started the basic diet this past week and have lost about 5 lbs (a side benefit). Hoping if I can stay on the diet I will see some reduction or improvement in my neuropathy but I know it's not an overnight thing. Good luck. John

JohnWBurns: I'm so sorry to hear about you and your wife's trials. I
know it can be discouraging when you haven't received the care your wife
deserves. The insurance company I'm with isn't anything to brag about!
"But" I can truly say that my Dr. does everything he can for me, and when I
have one of my ugly flair ups, he has compassion and understanding of my
pain in my flair up difficulty in walking. I have suffered migraines since
I was 10, due to an accident. At 22 had a histerectomy, due to a tumor, at
23 had my gallbladder removed, one doctor told my husband I was trying to
get attention. Needless to say by the time I finally got the help I needed
they had to do emergency surgery. (They said I was to skinny to have
gallbladder disease) LOL!!! I always have had problems due to my accident I
had at 10years old. Have arthritis in my neck in 3 vertebras. Before I
changed my Major in education, I was a Veterinary Technician and surgery
assistant, my husband and I trained cutting horses, and farm work, all
these things took its toll on my body, a woman wasn't made for some types
of work. Was always active, but paid for it afterwards. Know I can't be
active. It was difficult for me. I went back to school studied in Christian
Counseling, loved everything about it. It helped me mentally and
emotionally, physically and gave me back purpose, which we all need to
feel. I hate being a burden to my husband on those bad days, but he always
have something to lighten my load. Your wife is on Lyrics, I hope it works
for her. I couldn't take it, and I know others it effects their emotions,
and mobility. Will be praying for you and your wife. salena54

salena

@johnbishop :Thanks again. I know can read it as I wait for my book. As you progress on the diet let me know how it effects you health.

Thehubbytodd, I feel for you & wife. I had to go through much of the same issues. I'd soaked my feet in warm water in a foot massager and my wife would rub a sports cream on my feet every night before bed. I took tramadol to sleep which made me loopy though. I'd elevate my feet and hopefully fall asleep before everything wore off. <br />
I couldn't walk for 2 years, forced to retire, moved into assisted living and in an power chair to get around. We even bought a van with an automatic ramp so I could get out once and awhile. I've tried Embrel, methotrexate, Lyrica, prednisone, oxycodin, and have settled in with gabapentin, fentanyl patches, mycophenalate (cellcept), and cymbalta. I've since developed ulcers and GERD from all the meds and worry but my neuropathy pain is tolerable between doses. I'm out of assisted living and walking again. Nearly 45 doctors, dozens of ER visits, and countless thousands of dollars til Mayo figured it out. It was hell on my wife and we had NO life. But we got through the worst of it for now. We've been waiting for the other shoe to drop, but it hasn't (yet). <br />
I hope I was able to give you some insight as to what we went through. I know it may not give you much solace for your situation, however there could be some light at the end of the tunnel for you. God bless<br />
<br />

I had burning, tingling numbness in my feet and buttocks back in 2008. I was diagnosed with lumbar spinal stenosis and tried many meds and physical therapy. Nothing helped so I had a L4/L5 laminectomy in 2010. The burning, tingling numbness continued and again I tried Gabapentin and a prescription topical cream. When that didn't helpI went to Johns Hopkins Neurological Department in 2012 and after extensive testing they told me that I would have to live with the pain. In 2015 I saw a different neurosurgeon and he recommended another L4/L5 surgery. After that surgery, I had some relief and now have burning pain and numbness only in my left foot and lower leg. I take 900mg of Gabapentin daily. It helps some and I take Tramadol when the pain is strong. I actually have pain flare ups that last for several days when I am on my feet too long. My pain is increased when I stand or walk but I still have the ability to walk.

Does anyone relate to this? Any other things to try?

Welcome to this discussion @robertlclark. I think a lot of people can relate to what you are describing, especially @kmintx @johnwburns @bobsconnect @luladavis.

I know this message is rather buried in this thread, but I hope you can offer some thoughts to Robert about his ongoing pain and neuropathy issues.

Pain warrior - Thank you for the information on the Fentanyl. I will ask my Dr. About it. Are there any significant side affects? My neuropathy in my left foot and lower leg has only affected my sensory nerves. I still have my motor nerves intact so I can still walk. Hope this neuropathy doesn't affect my motor nerves. Are there any other meds to try?

Hello Martid, no I don't have chemo induced peripheral neuropathy. Evidently it is idiopathic, no known cause, My issues are pins and needles in legs and hands and arms, pain in my legs and numbness in my hands. It seems to affect my walking as sometimes I am so unsteady on my feet. At the same time I am dealing with restless legs syndrome which is also painful. I use a TENS machine for the neuropathy and requip for the rls along with tranadol. At night I place a heated pad under my legs and prop them up with a pillow. That seems to help.

Hello Johnwburns I have had the neuropathy for about 3 to 4 years. It doesn't get any better and sad to hear that yours got worse. It is not chemo induced but of unknown origin. And I also have restless legs syndrome which also created pain. The neuropathy is treated with a TENS machine and the rls with requip and tramadol. At night I put heated pad under my legs and prop them up with a pillow. I do have the pins and needles in legs and arms and numbness in my hands. And my walking is ofte unsteady. I agree that their is probably nothing that can be done for either condition just try to cope with it. Good luck. Im interested to hear what your neurologist has to tell you. Please share,.