Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@bree010

hello, am new here. have had neuropathy for many years now. didn't know what it was when a little numbness or some light pain would bother me till one day ibuprofen wouldn't handle it any more. went to medfast and finally a dr there told me I had periferal neuropathy and said should have been diagnosed years ago. prescribed tramadol and have been taking it for 13 years now. 2 years ago had the needle test done and was told didn't have peripheral but had small fiber neuropathy. any one here also have that?

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Welcome @bree010, Peripheral Neuropathy does involve the small fiber nerves so it does sometimes get confusing. At any rate, the bottom line is there are many different treatments and therapies and no cures so we have to figure out as patients what gives us relief. The only way I have found is to learn as much as you can about your condition and the treatment options that are available. You can find more information here:
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. You may also find the following discussion helpful:
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/.

Have you tried any other treatments?

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@janicemjackson

I have severe neuropathy and take BOTH Gabapentin AND Lyrica. I have taken Gabapentin, probably too long. The Lyrica is a recent addition. I am 83 years old. Neurologist sez that for my age, I am on the maximum G. dose. I STILL am not getting any kind of relief. I so look forward to bedtime where I can stretch out but NOW, I have screaming Sciatic pain in both legs. At the beginning, I suffered only at night but now it is almost with every step. I have had multiple Physical Therapy sessions for balance issues. I have been tethered to a walker for the past few years following a spiral fracture of my right tibia. I am loaded with metal. Spinal fusions 20 years ago on lower back. More recent neck surgery. This is getting to be a real 'Pain-in-the-Arse for a play on words and trying to maintain a sense of humoor!! What to do??

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Hi @janicemjackson, Welcome to Connect. Since you mentioned you also have sciatic pain, I'm wondering if you might find the following discussion helpful:
--- Peripheral neuropathy and sciatica: What helps with the pain?: https://connect.mayoclinic.org/discussion/peripheral-neruopathy-injections-not-working-tramadol-to-control-pa/.

Some people have found that Myofascial Release Therapy (MFR) has been helpful for sciatic pain. There is another discussion on the therapy here:
--- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

Have you heard of Myofascial Release Therapy?

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@johnbishop

Hi @janicemjackson, Welcome to Connect. Since you mentioned you also have sciatic pain, I'm wondering if you might find the following discussion helpful:
--- Peripheral neuropathy and sciatica: What helps with the pain?: https://connect.mayoclinic.org/discussion/peripheral-neruopathy-injections-not-working-tramadol-to-control-pa/.

Some people have found that Myofascial Release Therapy (MFR) has been helpful for sciatic pain. There is another discussion on the therapy here:
--- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

Have you heard of Myofascial Release Therapy?

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I have been making numerous attempts to JOIN but there is NO 'JOIN' in
the upper right corner of my screen!! AD, when I put i my e-mail and
password~~~NA, except I am not enrolled. I cannot get in to reply to
johnbishop or retrieve other messages .  Janice M Jackson

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@janicemjackson

I have been making numerous attempts to JOIN but there is NO 'JOIN' in
the upper right corner of my screen!! AD, when I put i my e-mail and
password~~~NA, except I am not enrolled. I cannot get in to reply to
johnbishop or retrieve other messages .  Janice M Jackson

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Hi Janice @janicemjackson, You were able to reply to my post so I'm pretty sure that means you are logged into Connect and you don't have to Join. Did you see my previous message? If you click the VIEW & REPLY button at the bottom of this email notification, it takes you to this post. Then if you just scroll up a little you will see my reply to your previous post with a couple of links to other discussions. Since you are already logged in you don't have to join or login to reply to my post or post a new comment/question.

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@larry4343

Hi @gleng, I’m in the same boat and don’t have a solution. I’ve tried a few things with mixed results.
- just keep walking, as others have suggested.
- switching some part of my exercise to things that are easier on the feet. I’ve tried cycling (regular and stationary) and joined a gym for elliptical and rowing machines
- wearing extra thick socks. You can find some that are thicker on the bottom but they’re probably not going to be cheap.
- putting more rugs around the house to help recovery between walking sessions.

For me, walking in nature is my main form of physical and mental therapy so I really don’t want to give it up.

Best of luck with everything.

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Hi. Thanks for the responses to my message. I'm sorry it has taken me so long to reply. I don't know much about my neuropathy. A Podiatrist did a biopsy on my feet and it indicated that the nerves are healthy. A few years ago a Neurologist conducted electrical tests of the nerves in my legs and feet. I can't remember what he said about the results. They weren't too encouraging. He told me if I started to have pain, to contact him. I need to talk to him again. I'm going to continue monitoring the forum to learn about neuropathy. I have spinal stenosis. Lumbar surgery about 6 years ago, and neck surgery 5 years ago. glen g

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@janicemjackson

I have severe neuropathy and take BOTH Gabapentin AND Lyrica. I have taken Gabapentin, probably too long. The Lyrica is a recent addition. I am 83 years old. Neurologist sez that for my age, I am on the maximum G. dose. I STILL am not getting any kind of relief. I so look forward to bedtime where I can stretch out but NOW, I have screaming Sciatic pain in both legs. At the beginning, I suffered only at night but now it is almost with every step. I have had multiple Physical Therapy sessions for balance issues. I have been tethered to a walker for the past few years following a spiral fracture of my right tibia. I am loaded with metal. Spinal fusions 20 years ago on lower back. More recent neck surgery. This is getting to be a real 'Pain-in-the-Arse for a play on words and trying to maintain a sense of humoor!! What to do??

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Oh, let me see~~~My Neurologist asked if I had ever taken Tramadol & I did have it when I had the broken Tibia. I tolerated it well & was dependent on it during the extreme Physical Therapy sessions. I had a real hummer for a Therapist but after many tearful sessions she was able to get me walking & the balance in tact. Now, however the balance is shot to~~~~! You know, I have other complications like Degenerative Disc Disease. Had a heart attack in 2010, no one in my family had that heart issue. I had the 2nd heart attack in the ICU, had stent and then emergency surgery to correct a faulty connection. I was hospitalized in theDenver/Wheatridge area for 8 days. I have had NO heart issues since!! I also have had Melanoma (1999) with a large biopsy in the middle of my forehead. NOW I have a peculiar mole that has manifested itself smack in the middle of the old scar~all these years later. I always attributed it to High Altitude living and a heavy ski schedule in my 30's, 40,s & 50's. HHHHHMMMM isn't this interesting? NO~~~ My Mother always said "No one cares to hear about our ailments &, you know, she never complained about anything. I know she suffered terribly with osteoporosis! BTW, I have that too! Have lost 4"'s. Aging has not been fun & yet I have so much to be grateful for~~~I live in one of the most beautiful places in the world (Rocky Mountain Nat'l. Park ) is just outside my door and I overlook Fall River. I do have caring family members. Regards, Janice P.S. More than you wanted or needed to know.

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@bree010

hello, am new here. have had neuropathy for many years now. didn't know what it was when a little numbness or some light pain would bother me till one day ibuprofen wouldn't handle it any more. went to medfast and finally a dr there told me I had periferal neuropathy and said should have been diagnosed years ago. prescribed tramadol and have been taking it for 13 years now. 2 years ago had the needle test done and was told didn't have peripheral but had small fiber neuropathy. any one here also have that?

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what was the dosage fo the tramadol

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@ccmt

what was the dosage fo the tramadol

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hello. have been using tramadol 50 mg since the beginning. for a few years only needed 1 a day then had to up it to 3 a day for many years. only about 18 months ago have had to take up to 5 or 6 a day, some 2 at a time depending on the level of pain. during the day I can kind of ignore the pain if it's not too bad by keeping busy and my mind off it so as not to have to take so many pills but sometimes that backfires on me and have to double the pills to dull the pain. can't win. lol.

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@johnbishop

@amaze02, @bloufitz - Mayo Clinic has a good explanations and a starting place to learn about peripheral neuropathy on their website:
http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944

Also here is one of the best and easy to understand explanations of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
https://youtu.be/8nrv7lRvvwU

Mayo Clinic info on Trigeminal neuralgia:
http://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/basics/definition/con-20043802

Hoping other Connect members will also share what works for them.

John

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I am looking for help with foot peripheral neuropathy guessing would be the term. I have been to many doctors but only a band aid. I am on gabapentin 300 mg 3 times a day for 8 years. I am wondering or looking for advice on maybe a surgery which could help me out instead of adding more pain medicine. Any suggestions?

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@rez2019

I am looking for help with foot peripheral neuropathy guessing would be the term. I have been to many doctors but only a band aid. I am on gabapentin 300 mg 3 times a day for 8 years. I am wondering or looking for advice on maybe a surgery which could help me out instead of adding more pain medicine. Any suggestions?

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Hello @rez2019, Welcome to Connect. I'm not knowledgeable about any surgery that can provide relief for peripheral neuropathy. The only situation I can think of is if you have a specific compressed nerve issue somewhere and surgery can relieve the nerve compression.
I have idiopathic small fiber PN and shared my story in another discussion here: Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

The Foundation for Peripheral Neuropathy has a list of complementary and alternative treatments if you are trying to avoid more pain medication: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Have you looked into any complementary or alternative treatments for neuropathy?

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