Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@user_ch1df4426

I am dealing with neuropathy in my feet and finger tips. I take lyrica daily. Have a problem wearing shoes. My neuropathy came from chemo treatment. Would like to know if anyone can recommend help.

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@user_ch1d4426 @johnbishop
I, too, acquired PN in my feet, legs, and hands from chemo (Paclitaxel) for breast cancer a year ago. Numbness, stiffness, burning, electric shocks, and the subsequent insomnia were driving me crazy. I have been unable to tolerate gabapentin nor venlafaxine.

I then went to a doctor of Chinese medicine and discovered that I couldn't tolerate acupuncture either, but he recommended that I try herbal pills called Zhi Bai Di Huang Wan. I took 6-three times/day and they turned my feet and hands icy cold within minutes. I was able to sleep all night for the first time in about five months.

One day while researching treatments for neuropathic pain I came across a blog, abstracts, trials, etc. on an endogenous fatty acid called Palmitoylethanolamide (PEA) which, for years, has been used successfully in Spain, Italy, Netherlands, Germany, etc. to treat neuropathic pain from numerous pathologies. I have been taking 400mg twice a day since the beginning of October and experienced greatly lessened pain within three-four weeks. Recently, it has allowed me to discontinue the Chinese herbs and still sleep. There are no reported adverse effects from it (except minor bloating for which I take an OTC gas pill). For me, among the best advantages of taking PEA (besides sleeping) is that I no longer experience a rebound of burning and electric shocks following exercise. (I exercise about 4-5 hrs./week to retrain my brain from the loss of balance and coordination when I acquired the PN, and the lingering cognitive issues of chemo.) The PEA has done nothing for the numbness, stiffness, and occasional swelling, however.

I still cannot tolerate closed shoes and look ridiculous, I'm sure, wearing socks/sandals on the treadmill at the gym, and throughout the cold weather, but that's the way it is. (It's a fashion improvement over wearing a hat, scarf, sweater, and sandals at the gym before my hair grew back!)

Will PEA's benefits continue? We'll see, I guess.

@johnbishop

Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem – damaged nerves which cause the pain signals to be sent to the brain.

I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it's out of sight, out of mind for a lot of folks. Here are the ones I've used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's HEALTH FRAUD PAGE
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

You can also link to this great resource from NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:

http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372

This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

Hoping all of my neuropathy friends find a treatment that works for them!

John

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@johnbishop
Which supplements do you take specifically for neuropathy? I am unable to tell from the sites you have provided. Thanks!

@elizm

@johnbishop
Which supplements do you take specifically for neuropathy? I am unable to tell from the sites you have provided. Thanks!

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@elizm — the over the counter supplements I take are listed on the closed Facebook groups website on the instructions page here:
http://solutions2pnpd.com/instructions/ The group is a registered 501c3.

I would recommend joining the group and reading all of the new member information first. Also, it's always a good idea to run the list of supplements by your doctor or pharmacist. There are over 8,000+ members in the group and it's very easy to search and learn the specifics of how each member was helped by the protocol by reading their stories.

Does anyone have any knowledge or experience with Wharton's jelly injections for PN? There are clinics offering it and claiming that there are no risks. Wharton's jelly is taken from the umbilical cord of newborns (normally it is disposed of with the afterbirth unless the parents want it stored for future use). The clinics claim that it can help with PN plus arthritis and other inflammation and auto-immune damage.

@johnbishop

@elizm — the over the counter supplements I take are listed on the closed Facebook groups website on the instructions page here:
http://solutions2pnpd.com/instructions/ The group is a registered 501c3.

I would recommend joining the group and reading all of the new member information first. Also, it's always a good idea to run the list of supplements by your doctor or pharmacist. There are over 8,000+ members in the group and it's very easy to search and learn the specifics of how each member was helped by the protocol by reading their stories.

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Thanks for the recommendation. I'm so glad I joined Connect. I've gotten so much valuable information.

Hello @ndttech, welcome to Mayo Clnic Connect. I've not heard of Wharton's jelly injections for PN but I did find some information that may help. I'm not sure there has been any clinical trials for stem cell therapy for peripheral neuropathy. There have been a lot of clinics popping up all over the country touting stem cell therapy treatments which is why the FDA put out a warning. I think stem cell therapy holds a lot of hope but I don't think it's quite there yet. I would want to see some extensive clinical trials that show it works.

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

Porcine Wharton’s jelly cells distribute throughout the body after intraperitoneal injection
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5813394/

Long term effect and safety of Wharton's jelly-derived mesenchymal stem cells on type 2 diabetes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4997981/

@johnbishop

Hello @ndttech, welcome to Mayo Clnic Connect. I've not heard of Wharton's jelly injections for PN but I did find some information that may help. I'm not sure there has been any clinical trials for stem cell therapy for peripheral neuropathy. There have been a lot of clinics popping up all over the country touting stem cell therapy treatments which is why the FDA put out a warning. I think stem cell therapy holds a lot of hope but I don't think it's quite there yet. I would want to see some extensive clinical trials that show it works.

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

Porcine Wharton’s jelly cells distribute throughout the body after intraperitoneal injection
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5813394/

Long term effect and safety of Wharton's jelly-derived mesenchymal stem cells on type 2 diabetes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4997981/

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Thank you John. This is very useful information.
I followed all links and the articles are very positive about the potential benefits of Wharton's Jelly injections for diabetics and PN.
Looks like a human clinical study was done in China with very positive outcome.
If you hear of any human trials here, I would volunteer.

@elizm

@user_ch1d4426 @johnbishop
I, too, acquired PN in my feet, legs, and hands from chemo (Paclitaxel) for breast cancer a year ago. Numbness, stiffness, burning, electric shocks, and the subsequent insomnia were driving me crazy. I have been unable to tolerate gabapentin nor venlafaxine.

I then went to a doctor of Chinese medicine and discovered that I couldn't tolerate acupuncture either, but he recommended that I try herbal pills called Zhi Bai Di Huang Wan. I took 6-three times/day and they turned my feet and hands icy cold within minutes. I was able to sleep all night for the first time in about five months.

One day while researching treatments for neuropathic pain I came across a blog, abstracts, trials, etc. on an endogenous fatty acid called Palmitoylethanolamide (PEA) which, for years, has been used successfully in Spain, Italy, Netherlands, Germany, etc. to treat neuropathic pain from numerous pathologies. I have been taking 400mg twice a day since the beginning of October and experienced greatly lessened pain within three-four weeks. Recently, it has allowed me to discontinue the Chinese herbs and still sleep. There are no reported adverse effects from it (except minor bloating for which I take an OTC gas pill). For me, among the best advantages of taking PEA (besides sleeping) is that I no longer experience a rebound of burning and electric shocks following exercise. (I exercise about 4-5 hrs./week to retrain my brain from the loss of balance and coordination when I acquired the PN, and the lingering cognitive issues of chemo.) The PEA has done nothing for the numbness, stiffness, and occasional swelling, however.

I still cannot tolerate closed shoes and look ridiculous, I'm sure, wearing socks/sandals on the treadmill at the gym, and throughout the cold weather, but that's the way it is. (It's a fashion improvement over wearing a hat, scarf, sweater, and sandals at the gym before my hair grew back!)

Will PEA's benefits continue? We'll see, I guess.

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@elizm – I have a friend who has had bad toes for 20 years – and she, like you, wears sandals all year! Friends don't care what friends wear!!!!

@lindy1956

My husband had Guilliane Barre Syndrome in 2013, he is now dealing with residuals. Hands, feet and belly pain are the worst. It seems we have tried everything but neuropathy in his feet is bad. Does anyone else have GBS or CIDP? We are always open to suggestions.

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Hi Lindy, I too have been battling with residuals in the wake of gbs 2013. I have numb toes fingers knees & a band around my ribcage. Does hubby find that different weather, such as humidity effects the severity of these residuals?

CBD oil works for few days. lidocaine ointment 5% more effective

Many of you have crossed paths with @thankful in the Neuropathy group. Check out today's member spotlight and learn a bit more about him.

– Fly Fishing, Gardening and the Northwest: Meet @thankful https://connect.mayoclinic.org/page/about-connect/newsfeed/fly-fishing-gardening-and-the-northwest-meet-thankful/

Follow the About Connect page to read all the Member Spotlights: https://connect.mayoclinic.org/page/about-connect/

Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all…..my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you

Liked by angelarisstrom

@pammy922

Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all…..my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you

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Hi @pammy922, welcome to Connect. It sounds like you have a lot on your plate to deal with but I can tell you that you are not alone. I think we've all tried a multitude of shoes. I found the ones I like were Sketchers slip-ons but they do not offer much side support so I have to be careful using them for balance problems. I also struggled with socks and found that bamboo thread socks were really soft, comfortable and very easy to put on and take off.

I take over the counter supplements that I found in a closed group on Facebook that helps me and has also helped others that were in a lot of pain with their neuropathy. It may or may not work for you but it's worth a try if nothing else has provided relief. I have links to the group in an earlier post where I shared my neuropathy story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@artscaping and @jenniferhunter have shared some great information on dealing with pain in many of their posts. I'm hoping they might have some suggestions for you.

@pammy922 it sounds like you have made significant progress being able to walk again. What is the biggest thing that would help improve your quality of life?

@johnbishop

Hi @pammy922, welcome to Connect. It sounds like you have a lot on your plate to deal with but I can tell you that you are not alone. I think we've all tried a multitude of shoes. I found the ones I like were Sketchers slip-ons but they do not offer much side support so I have to be careful using them for balance problems. I also struggled with socks and found that bamboo thread socks were really soft, comfortable and very easy to put on and take off.

I take over the counter supplements that I found in a closed group on Facebook that helps me and has also helped others that were in a lot of pain with their neuropathy. It may or may not work for you but it's worth a try if nothing else has provided relief. I have links to the group in an earlier post where I shared my neuropathy story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@artscaping and @jenniferhunter have shared some great information on dealing with pain in many of their posts. I'm hoping they might have some suggestions for you.

@pammy922 it sounds like you have made significant progress being able to walk again. What is the biggest thing that would help improve your quality of life?

Jump to this post

Hello john, i just joined this and also have neuropothy stemming from agent orange. I take lyrica but dont like it because it causes me to sleep super deep and excess hours. Trying CBD now with no effect but ive been 100% off sugar for a couple weeks and i believe it has lessened th acuteness. Rob

@ospreysurf

Hello john, i just joined this and also have neuropothy stemming from agent orange. I take lyrica but dont like it because it causes me to sleep super deep and excess hours. Trying CBD now with no effect but ive been 100% off sugar for a couple weeks and i believe it has lessened th acuteness. Rob

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Hi Rob @ospreysurf, welcome! I'm glad you found us. It's good to be off sugar for many different reasons not only neuropathy ☺ Alcohol also is not good when you have neuropathy. If you are interested in trying over the counter vitamins and supplements, you might be interested in checking out the website for the closed Facebook group where I found what I use – http://solutions2pnpd.com/. It's a lot of reading but it has helped a lot of people. The group has about 8,000 members now with all different types of neuropathy. It may or may not work for you but it's an all natural solution – no drugs and a lot of members have been able to taper off of pain drugs after taking the supplements.

John

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