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?

@blocker

I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

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First this site will help you find suggestions and information to discussion with your healthcare providers. Information is empowering and power helps with regaining control of your life. Search for a therapist who deals with chronic pain, not just sport and surgical injuries. It takes understanding to help us with the difficulty we deal with everyday and will not be solved with a quick fix. Firmness and resolve are needed to find what works for you. My provider changed my meds from Gabapentin to cymbalta due to balance issues and it also treats depression. Good science based website are valuable but there is a lot of garbage type of sites offering misinformation. Keep looking for helpful people and support, it is out there.

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@johnbishop

Hi @lynnaustin, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy but I only have numbness in my feet and just above the ankles. I don't have the typical pain or stinging/burning. I'm tagging @artscaping who may be able to share from her experience. You can read what has helped me in an earlier post on Connect where I shared my story: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might also be interested in another discussion here on Connect:
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your PN diagnosis and what you have tried for treatments?

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Hi John..I was on TheProtocol website and read that the newer program will be out in Fall of 2019. I know you had success with it but I was disappointed that there weren't a lot of testimonials from people who were successful. I only read a few of the moderators that wrote of their improvements.

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@zorrospouse

First this site will help you find suggestions and information to discussion with your healthcare providers. Information is empowering and power helps with regaining control of your life. Search for a therapist who deals with chronic pain, not just sport and surgical injuries. It takes understanding to help us with the difficulty we deal with everyday and will not be solved with a quick fix. Firmness and resolve are needed to find what works for you. My provider changed my meds from Gabapentin to cymbalta due to balance issues and it also treats depression. Good science based website are valuable but there is a lot of garbage type of sites offering misinformation. Keep looking for helpful people and support, it is out there.

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I was changed from gabapentin to Cymbalta & I started with 30 mg & I was just increased to 60 mg & I have been on it for 4 days now & I still don't see any improvement & I was on the 30mg for a month. I sure hope it helps bc I haven't noticed any side effects as of yet.

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@lynnaustin

Hi John..I was on TheProtocol website and read that the newer program will be out in Fall of 2019. I know you had success with it but I was disappointed that there weren't a lot of testimonials from people who were successful. I only read a few of the moderators that wrote of their improvements.

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Hi @lynnaustin — The website was setup after the Facebook group started growing as an easy way to order the different vitamins and minerals through Amazon. You are right, they've only shared a few testimonials on the website. If you want to see all of the testimonials from members who have had success with the protocol, join the Facebook group – http://www.facebook.com/groups/spnpd. You may have to answer a few questions to join but once you join and read through the new member welcome message you can easily find many, many testimonials by going to the top of the groups Facebook page and typing #theprotocolworks. This was the tag that members used to post their success using the protocol in group. The groups Files section has a wealth of research information in it which was one of the highlights for me.

I've been a member since August 2016 when the group was less than 500 members. The group is currently 8.9K members in numbers which will give you an idea of the all the folks with PN looking for relief.

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@johnbishop

Hi @lynnaustin, I agree with Chris's @artscaping approach to neuropathy. I have dealt with numb feet for over 20 years and when it seemed to be getting worse in 2016 I started worring which didn't help me. I had avoided having tests to diagnose the PN because years earlier when I asked the doctor what can they do to fix it if they determine it's nerve damage. The doctor said nothing and I just avoided thinking about it until it started getting worse. After my diagnosis of idiopathic small fiber peripheral neuropathy mostly likely genetic the neurologist told me there are no topicals or medications that can help with the numbness and I didn't have any pain or burning. I was depressed until I started doing my own research and learning as much as I can about neuropathy.

One of the first things I did was join the Minnesota Neuropathy Association when looking for a local support group. At one of their meetings I heard some words of wisdom from an 80+ year old neurologist still doing research at the University of Minnesota. He said if you live long enough you will get neuropathy because nerves eventually die. So I started looking for alternative ways of helping with my particular numbness only neuropathy. You can read about how I found the supplements I taked in my story in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Bottom line that I have learned from all my research is that there is no cure for neuropathy but you can find treatments for the symptoms and live a more normal life. My great hope for the future is stem cell therapy for neuropathy but it's just not there yet. As promising as stem cell research is for a lot of things, I don't believe there has been any successful treatments for neuropathy. There is another discussion that you might find interesting and a warning from the FDA.

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

There are also some warnings about all the stem cell clinics popping up.

Consumer Updates > FDA Warns About Stem Cell Therapies
https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm

There are a lot of things that I can no longer do, some because I'm a lot older and some due to my health conditions. Like Chris and others I try to take each day one at a time the best I can and find something that gives me joy each day. I do like taking photos from the window next to my computer ☺

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Nice photos ! Relaxing I’m sure.
Thanks for your suggestions and guidance for all of us dealing with various forms of chronic pain. You really are an inspiration with your positive attitude and always researching for others for treatment that might help.
Keep up the great work- to you and the other moderators as well.

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@mlross4508

Nice photos ! Relaxing I’m sure.
Thanks for your suggestions and guidance for all of us dealing with various forms of chronic pain. You really are an inspiration with your positive attitude and always researching for others for treatment that might help.
Keep up the great work- to you and the other moderators as well.

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@mlross4508, thank you for the kind words! That was one of my surprise photos. I think I might have spilled some sunflower seeds when filling the bird feeder and the neighborhood cleanup crew took care of the mess I made ☺

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@blocker

I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

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Hello. This forum is wonderful and will provide you with support, ideas, examples and encouragement. I feel your pain on many levels as my world significantly changed when I was 43 with multiple health problems. I'm now 49 and my youngest child is off to college in one week. My oldest left for college at the start of my down slide. I have felt horrible over the past 6 years that my youngest had to endure alot with me. Some days it's hard to understand or believe that things happen for reasons in our lives but, I try to keep that focus.
I'm so sorry for your pain and hope that knowing you are not alone in this miserable journey can help you someway, somehow. Warm regards.

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@tigreyes2004

I was changed from gabapentin to Cymbalta & I started with 30 mg & I was just increased to 60 mg & I have been on it for 4 days now & I still don't see any improvement & I was on the 30mg for a month. I sure hope it helps bc I haven't noticed any side effects as of yet.

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The one thing I learned about Cymbalta, for me personally, was that it took well over a month to combat the constant nausea. I almost gave up but then realized that by taking it closer to bedtime, I was able to sleep off side effects. Good luck to you in your journey.

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@rwinney

The one thing I learned about Cymbalta, for me personally, was that it took well over a month to combat the constant nausea. I almost gave up but then realized that by taking it closer to bedtime, I was able to sleep off side effects. Good luck to you in your journey.

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I don't have any nausea & I do take it at bedtime so that I would not notice the side effects. I do notice I urinate a lot more so that could be a side effect. Do you feel the cymbalta has helped with your pain & how many milligrams do you take. I have stage 3 kidney disease & my kidney dr said that I need to have my electrolytes checked periodically.

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@tigreyes2004

I don't have any nausea & I do take it at bedtime so that I would not notice the side effects. I do notice I urinate a lot more so that could be a side effect. Do you feel the cymbalta has helped with your pain & how many milligrams do you take. I have stage 3 kidney disease & my kidney dr said that I need to have my electrolytes checked periodically.

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To be honest with you I began it when my PCP suggested it for pain and anxiety (over not knowing what the heck was wrong with me) and no I do not believe it touches my pain. As evident by being on Lyrica and Norco. I think it helps me with anxiety and depression.

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@rwinney

To be honest with you I began it when my PCP suggested it for pain and anxiety (over not knowing what the heck was wrong with me) and no I do not believe it touches my pain. As evident by being on Lyrica and Norco. I think it helps me with anxiety and depression.

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@tigreyes2004, @rwinney It appears that both of you have been trying to find the best medication for pain, depression, and anxiety and especially as those quests apply to Gabapentin vs Cymbalta.

Since most of us have to deal with all three symptoms, it is interesting to see what works and what doesn't, what side-effects have interfered with the purpose of the medication, and what is the best time of day to take these medications?

Sometimes when changes are made, we wait somewhat anxiously for positive results whether that be the disappearance of side effects or the appearance of pain amelioration. And when they work, we want the positive results to make a difference and last a long time.

Just for the record, after some restless and inconclusive experimenting, I am pretty settled on Cymbalta (duloxetine) 60 mg in the morning and gabapentin,1200 mg before bedtime. We are all so very unique and are bodies seem to march to their own drummer. Can you imagine what our medical providers must filter through for each and every patient? Thanks for posting your information today and please let us know of improvements in pain control or decreases in anxiety and depression which should actually translate to pain reduction.

Have a lovely, breezy afternoon. Chris

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@tigreyes2004

I was changed from gabapentin to Cymbalta & I started with 30 mg & I was just increased to 60 mg & I have been on it for 4 days now & I still don't see any improvement & I was on the 30mg for a month. I sure hope it helps bc I haven't noticed any side effects as of yet.

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I just started the 60 mg and not finding any side effects so far but do feel like it has really helped better than Gabapentin 1200 side effects.

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@artscaping

@tigreyes2004, @rwinney It appears that both of you have been trying to find the best medication for pain, depression, and anxiety and especially as those quests apply to Gabapentin vs Cymbalta.

Since most of us have to deal with all three symptoms, it is interesting to see what works and what doesn't, what side-effects have interfered with the purpose of the medication, and what is the best time of day to take these medications?

Sometimes when changes are made, we wait somewhat anxiously for positive results whether that be the disappearance of side effects or the appearance of pain amelioration. And when they work, we want the positive results to make a difference and last a long time.

Just for the record, after some restless and inconclusive experimenting, I am pretty settled on Cymbalta (duloxetine) 60 mg in the morning and gabapentin,1200 mg before bedtime. We are all so very unique and are bodies seem to march to their own drummer. Can you imagine what our medical providers must filter through for each and every patient? Thanks for posting your information today and please let us know of improvements in pain control or decreases in anxiety and depression which should actually translate to pain reduction.

Have a lovely, breezy afternoon. Chris

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Thank you. Cymbalta & gabapen 1200 mg seems a lot to take. Don't you feel tired all the time? That is the reason I got off the Gabapentin but everyone is different. I'm glad it works for you.

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@rwinney

To be honest with you I began it when my PCP suggested it for pain and anxiety (over not knowing what the heck was wrong with me) and no I do not believe it touches my pain. As evident by being on Lyrica and Norco. I think it helps me with anxiety and depression.

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Thank you. Norco gives me nausea all pain pills do & plus the constipation. I sure hope this Cymbalta doesn't. The Lyrica doesn't give you any side effects?

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@zorrospouse

I just started the 60 mg and not finding any side effects so far but do feel like it has really helped better than Gabapentin 1200 side effects.

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Thank you. I hope it works bc I'm afraid to try other stuff like the Lyrica. I have heard a lot of bad things about that one.A lot of people said they ended up in the hospital.

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