Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@timmckinney

Hi all. Have been dealing with chronic pain associated with neuropathy for the past five years. Not diabetic and have been to the University of Iowa hospital for extensive blood work, nerve conduction studies etc. and have never been able to locate a cause. Idiopathic neuropathy is what I’m told. Have tried every cream, lotion, tens device and prescription pain med. for the burning and crushed glass feeling in my toes and balls of my feet with little positive result. Any miracles out there that I have not heard of or tried? Went from running 25 miles a week for 20 years to barely able to walk a few blocks now, very frustrating. The golden years are not so much. I’m 66 years old and would like to be able to enjoy my grandkids and retirement. Thanks in advance!

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Hi Tim (@timmckinney). Welcome to Connect. I can share my story and maybe offer some hope. I also have idiopathic neuropathy but do not have the burning pain, etc. Mine has just been the numbness that started in the toes of both feet and progressively worked up to just below my knees this past year. I’ve dealt with it for 20+ years because when I first discussed symptoms with my doctor he said I had nerve damage but I would need tests to confirm. When I asked what could be done if it was determined there was nerve damage he told me nothing so I stopped asking and didn’t get the test. I got a little more proactive last year and in March had 2 MRIs and an EMG – the gateway for me to meet with a Mayo neurologist. He confirmed idiopathic small fiber neuropathy for the diagnosis along with the standard there are no creams, lotions, etc. that will make the numbness go away (dead/damaged nerves?). He also mentioned that it would get progressively worse and to let him know if it did. That was March 2016.

That started my search and along the way, I like you tried pretty much everything that I thought would help. Some offered a little relief, others were out of my price range (not covered by insurance), and others I felt were pretty much a scam taking advantage of people in pain – and there are a lot of those out there (Mayo Connect avoiding scams – http://mayocl.in/2gcdDNt). I ran across a book that is written by Dr. Terry Wahls who has MS started me on my journey of possible diet and nutrition changes that I can make to help my autoimmune disease and slow down progression. You may find it interesting also – http://terrywahls.com/about/about-terry-wahls/.

I joined the closest neuropathy support group looking for answers that might help (before I found Mayo Connect!). The closest group was the Minnesota Neuropathy Association which holds monthly meetings in the south Minneapolis area. This helped me realize how big the problem is with PN and gave me hope with so many people looking for the same answers. It also helped me realize that each of us are so different that what works for one may or may not work for another person.

Then in my Internet searches I found a few active Facebook closed groups for neuropathy. The first couple I joined were really just offering emotional support and not much else. Not saying that isn’t needed but it just wasn’t what I was looking for at the time. I did find something that works for me – a protocol of over the counter nutritional supplements that I started taking September 2016. When I started the numbness in both legs was just below the knees. This is subjective but it now feels like it is just above my ankles. So to me what I’m taking is repairing some of the nerve damage or at a minimum slowing down the progression so I’m happy with it. Others in the group with the burning pain have been able to titrate off of the pain medications which can sometimes have side effects worse than the pain. I discussed the supplements with my primary care doc and she passed them on to the Mayo pharmacist. His only concern was that the omega 3 dosages were too high…but that was quickly refuted by looking at Mayo Clinic research recommendations for omega 3 oils – http://mayocl.in/1pebH3A. The group has over 3600+ members and has recently obtained 501c3 status and are looking for ways to help people with PN who can afford the supplements.

I am not a medical professional. I made my choices on my best judgement knowing that neither my doctors nor my neurologist can offer anything to help me, I decided to try the protocol if it’s something that is not going to make it worse. What I do know for the pain part from listening and doing my own research is that all of the pain drugs do absolutely nothing to fix the problem. They all address or mask the problem which is causing the pain – damaged or dead nerves mis-firing and sending those nasty pain signals to the brain. If you want to do some research for yourself, you can join the closed Facebook group (https://m.facebook.com/groups/952340464830989) and then read their intro information to see if it’s something you would that like to investigate. You can use the search icon at the top of the group page and search for the term #theprotocolworks which will find all of the stories shared by members who have been helped by the protocol.

Keep asking questions and looking for answers – you are your best advocate!

John

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@JustinMcClanahan

Hello @timmckinney, welcome to Connect. Thank you for taking a few minutes to share your frustrations you are experiencing with peripheral neuropathy. I moved your discussion post from the Chronic Pain group and combined it with a discussion called “anyone here dealing with peripheral neuropathy?” in the Brain & Nervous System group. If you are replying by email, I suggest you click on the VIEW & REPLY at the bottom of the email so that you are brought to the full-length discussion that you can read through for some answers to your questions.

In this discussion, you will meet members like @johnbishop, @jczarkowski1270, @mfobrien36, and many others who have discussed living with peripheral neuropathy and various remedies to help ease the symptoms.

@timmckinney, have you discussed with your diagnosing physician that the prescribed remedies have not had much success for you?

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5000 mg b-12 under the tongue every day did wonders for me

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as i stated last month, ask your neurologist about Lyrica abd Gabapentin.

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@ujeeniack

as i stated last month, ask your neurologist about Lyrica abd Gabapentin.

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Have tried both with limited success. Taking 600 mg of Gabapentin 3 times a day currently but really not a big help. Lyrica was just an expensive alternative that really wasnt any better.

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@timmckinney

Hi all. Have been dealing with chronic pain associated with neuropathy for the past five years. Not diabetic and have been to the University of Iowa hospital for extensive blood work, nerve conduction studies etc. and have never been able to locate a cause. Idiopathic neuropathy is what I’m told. Have tried every cream, lotion, tens device and prescription pain med. for the burning and crushed glass feeling in my toes and balls of my feet with little positive result. Any miracles out there that I have not heard of or tried? Went from running 25 miles a week for 20 years to barely able to walk a few blocks now, very frustrating. The golden years are not so much. I’m 66 years old and would like to be able to enjoy my grandkids and retirement. Thanks in advance!

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Hi,
In response to your Idiopathic neuropathy. I have had it for the last about
4 years. One of my Doctors a neurologist suggested a cream to use on my feet. I
have been using it now just maybe a month and then can quit for several months
without pain.
at first you will have to use it about three times a day then .
The name is Dermatran. You need a prescription from your Doctor but you
just have to try it.Your Dr can contact them at Deratran Health Solutions.
Deratran Health Solutions.
2700 Stanley Gault Parkway
Louisville, KY 40223
You can contact them  855-675-5240
I hope you will give it a try and if you do please let me know how if it
works for you.
There are a lot of people that can use this and get some relief from the
pain and would like people to be able to try it.
Good luck,
Jan

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Interesting research…
UCSD “Blocking Neuron Signaling Pathway May Lead to New Treatments For Peripheral Neuropathy.” NeuroscienceNews. NeuroscienceNews, 17 January 2017. http://bit.ly/2jJ7Eho

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@timmckinney

Hi all. Have been dealing with chronic pain associated with neuropathy for the past five years. Not diabetic and have been to the University of Iowa hospital for extensive blood work, nerve conduction studies etc. and have never been able to locate a cause. Idiopathic neuropathy is what I’m told. Have tried every cream, lotion, tens device and prescription pain med. for the burning and crushed glass feeling in my toes and balls of my feet with little positive result. Any miracles out there that I have not heard of or tried? Went from running 25 miles a week for 20 years to barely able to walk a few blocks now, very frustrating. The golden years are not so much. I’m 66 years old and would like to be able to enjoy my grandkids and retirement. Thanks in advance!

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Thanks for the information. I will discuss with my Doctor.

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@timmckinney

Hi all. Have been dealing with chronic pain associated with neuropathy for the past five years. Not diabetic and have been to the University of Iowa hospital for extensive blood work, nerve conduction studies etc. and have never been able to locate a cause. Idiopathic neuropathy is what I’m told. Have tried every cream, lotion, tens device and prescription pain med. for the burning and crushed glass feeling in my toes and balls of my feet with little positive result. Any miracles out there that I have not heard of or tried? Went from running 25 miles a week for 20 years to barely able to walk a few blocks now, very frustrating. The golden years are not so much. I’m 66 years old and would like to be able to enjoy my grandkids and retirement. Thanks in advance!

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Hi Jan (@twinky), Thank you for the information. I don’t think it will work for numbness but probably does reduce pain for a lot of people. I only have the numbness with my idiopathic SFPN.

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Will it work 4 my knee?

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Hi ALL,
I have been on a Chronic pain group and I ran across this one recently. I have had peripheral neuropathy for at least 12 years. At first it started with restless legs, then gradually started in my feet, burning, tingling then progressed to extreme burning,stabbing pain. my knees and my hands. I would cry and walk. Tylenol helped some, And just recently has progressed up to knees and hands. Finally went to an orthopedic pain Dr. He diagnosed me with peripheral neuropathy. I had an event that had me admitted to the hospital. During that visit a neurologist was checking me over and asked if I had taken gabapentin for the neuropothy. I was given a 300mg with a 50mg of tramadol, and had the best sleep I had had in years. so I started taking 300 mgs a day now I have progressed to 600mg 4 times a day, sometimes more, if I have to. That doesn’t happen as much as it used to. But I always take a 50mg of tramadol with the gabapentin. I have tried taking it without the tramadol, with tylenol, but the gabapentin does not seem to work as well without the tramadol.
I am told that I have that I have peripheral neuropathy because of cervical neck surgery, nerve damage to my upper spinal cord because of bone spurs. And I have severe spinal stenosis in my lower back.. I have tried to get cymbalta that was prescribed by my present pain Dr, but since I do not have drug insurance, I could not afford it….$360 for month supply. The neuropothy gets worse at night. Many nights I cannot sleep even when taking meds. Walking seems to help, something about the pressure that seems to help/ Many times I cannot walk because I cannot feel my feet, that is usually when I have waited too long before taking my meds. I use a rolling walker most all the time, it helps when I cannot feel my feet, and my balance is very iffy. I feel so very bad for those who are suffering with this. Hope any of this sharing helps.
PEACE & LOVE..JJ

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@jjwest

Hi ALL,
I have been on a Chronic pain group and I ran across this one recently. I have had peripheral neuropathy for at least 12 years. At first it started with restless legs, then gradually started in my feet, burning, tingling then progressed to extreme burning,stabbing pain. my knees and my hands. I would cry and walk. Tylenol helped some, And just recently has progressed up to knees and hands. Finally went to an orthopedic pain Dr. He diagnosed me with peripheral neuropathy. I had an event that had me admitted to the hospital. During that visit a neurologist was checking me over and asked if I had taken gabapentin for the neuropothy. I was given a 300mg with a 50mg of tramadol, and had the best sleep I had had in years. so I started taking 300 mgs a day now I have progressed to 600mg 4 times a day, sometimes more, if I have to. That doesn’t happen as much as it used to. But I always take a 50mg of tramadol with the gabapentin. I have tried taking it without the tramadol, with tylenol, but the gabapentin does not seem to work as well without the tramadol.
I am told that I have that I have peripheral neuropathy because of cervical neck surgery, nerve damage to my upper spinal cord because of bone spurs. And I have severe spinal stenosis in my lower back.. I have tried to get cymbalta that was prescribed by my present pain Dr, but since I do not have drug insurance, I could not afford it….$360 for month supply. The neuropothy gets worse at night. Many nights I cannot sleep even when taking meds. Walking seems to help, something about the pressure that seems to help/ Many times I cannot walk because I cannot feel my feet, that is usually when I have waited too long before taking my meds. I use a rolling walker most all the time, it helps when I cannot feel my feet, and my balance is very iffy. I feel so very bad for those who are suffering with this. Hope any of this sharing helps.
PEACE & LOVE..JJ

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hi jjwest – have your vitamin b-12 checked. I am on 900 mgs of gabapentin. I also have vit b-12 shots and take 5000 mg of vit b-12 under the tongue every day. Ideally your vit b-12 needs to be in the upper limits of normal

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