Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@swiss

I am Swiss, born in 1939 and have been diagnosed idiopathic polyneuropathy some 13 years ago, the illness progressed slowly so that i now have regular chronic pain which can move from 2 to 9 out of 10 at certain times such as after a sleep change horizontal to vertical. Only cold – warm baths of feet and leggs can influence it positively although I am on a daily medication of 400mg Palexia retard (an opioid), 350mg of Lyrica and 900mg of Gabapentin. I do not like this quantity of chemistry having to pass through my system, I guess my liver does not like it either. Only under certain circumstsances and by medical
prescription can we obtain the new medication based on Marihuana, I wonder what could help such attacks, it is like a flame is passing through the feet into the leggs and back with burning and itching pain. It may stay with me for a few hours or go away within 30min – 1h. The bilateral knee arthrosis does not help to make my walking any better, I have been using a walking stick in particular when taking my doggie for a walk. Cold is my biggest enemy so that I have created all sort of socks out of thermal leggins or similar material covering parts or the leggs or all of it, thicker or tinner, depending of the season.
My neurologists never have an idea how to fight my chronic peripheral nerve pain, Lyrica seems to be the state of the art and all kind of other trials
did not show any improvement other than Opioids which I would like to avoid and slowly move out of it. For that I will go back to a hospital in order to check what could be reduced first and in what relationship to the rest. Anyhow is is frustruating and I wonder if anyone has some new idea, I am also read anytime to answer questions you may have by mail. felix

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I had some type of neuropathy from 2006-2008; not much help from Medical University Center(nerve tests), / much depends on quality of neurologist.  Tried Turmeric , food medicine based on chemistry/science; helpful.  Along with start of spiritual support friends in Philippines, symptoms passed , short of going to Mayo.  There is much in food research as medicine, the science is there even though many food suppliers are short of science based insights.  JIM> Now lately, over a year dizziness; again the neurological maize, to define the symptoms to the right medical words, half the battle, and then get back into the food research and always rely on my spiritual support friends in the Philippines.  Good Luck. JIM>>>>

Have dealt with peripheral neuropathy ever since two bouts with cancer–radiation with both, and chemo with one. Gabapentin does nothing; a therapist agreed that the only thing to do is just keep moving–and so I do. No cure–no meds that help.

@pedie

Have dealt with peripheral neuropathy ever since two bouts with cancer–radiation with both, and chemo with one. Gabapentin does nothing; a therapist agreed that the only thing to do is just keep moving–and so I do. No cure–no meds that help.

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Hi @pedie – you are right about the meds and neuropathy. They do nothing for numbness and are all directed to mask or block the pain from nerve damage. I’m guessing your neuropathy is from your chemo treatments. I’ve had numbness in my feet for over 20 years but got a diagnosis in March 2016 when I decided to start becoming my own advocate. My neurologist diagnosed me with idiopathic small fiber peripheral neuropathy which was in both legs from just below the knees down through the toes. He also told me there was nothing that could be done – no meds or topical creams/oils help for numbness.

I started doing a lot of reading and online research and have tried many things that didn’t work. Since there are no drugs that will fix or repair damaged nerves, I started looking at nutritional and mineral supplements. Someone pointed me to a book by Dr. Terry Wahls – Wahls Protocol Diet and I got the book to check it out. She suffers from Multiple sclerosis (MS) and did her own research into treating her MS through diet and nutrition. She has an amazing story to tell if you want to read it – http://terrywahls.com/about/about-terry-wahls/. This got me looking at nutrition and diet from a different viewpoint.

In September 2016, I started taking a specific group of over the counter high quality supplements/vitamins. By the end of the year the numbness in both of my legs seems to have reversed a little or at the very least has stopped progressing which is what my neurologist told me it would do. He said it would continue spreading upward in the body until if affected a vital organ and told me to let him know if it gets worse. To date the numbness has gone from just below my knees to just above the ankles. It might not seem like much progress but to me it means the upward spreading of the neuropathy has been reversed or at a minimum stopped. It may not work for everyone but it has definitely helped me. Others taking the protocol have been able to completely get off of the pain drugs once they are on the full protocol for awhile. I found this treatment in a Facebook closed group which has now become a 501c3 – Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/spnpd/).

There are a lot of scams out there so it’s always best to do your own research to avoid them. There is a lot of good information on what to look for to avoid a scam:

Avoiding scams and snake oil treatments post on Mayo Connect:
http://mayocl.in/2gcdDNt

FDA’s HEALTH FRAUD PAGE:
http://bit.ly/2n6kpHr

Hopefully you will find something that helps with your neuropathy.

John

Liked by caf132

John,
Thanks for the suggestion about the Wahls book. I just checked it out of the Hennepin County Library. I’ll read the book and see if I can incorporate some of Dr. Wahls’ recommendations into my life. Even if none of her suggestions work for me, I’m always intrigued and inspired by a person’s struggle to overcome one of life’s challenges, especially something like MS.
Margaret

@magg

John,
Thanks for the suggestion about the Wahls book. I just checked it out of the Hennepin County Library. I’ll read the book and see if I can incorporate some of Dr. Wahls’ recommendations into my life. Even if none of her suggestions work for me, I’m always intrigued and inspired by a person’s struggle to overcome one of life’s challenges, especially something like MS.
Margaret

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Hi Margaret, I try to follow the basic diet she has but still have my days. She has some great breakfast recipes for green smoothies which I make from my breakfast 4 to 5 days a week. I do think nutrition plays a major part in a lot of autoimmune conditions. I just found an interesting YouTube video that talks about the importance of gut health. It’s 44 minutes long but worth watching.

How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg:

John

@pedie

Have dealt with peripheral neuropathy ever since two bouts with cancer–radiation with both, and chemo with one. Gabapentin does nothing; a therapist agreed that the only thing to do is just keep moving–and so I do. No cure–no meds that help.

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Yes, advocate.  I am a retired nurse, similarly.  Had neuropathy when I retired, visited the large city medical University Center, not impressed(with a nurses background), knew the routine. I was not going to take NSAID’s to make the physician happy(and research knows what high dose NSAID’s can do to kidney’s(over looked by care giver).  Yes, there is plenty of science based reseach daily, science based food medicine and biotech. advances.  All physicians are not generic, but they are taxed with either the motive in that profession(if solely for money), a disaster.  Or taxed with paperwork.  I used turmeric for two years, and ready to visit Mayo, but symptoms (neuropathy) subsided.  10 years later, since trip from Holy Land, some type of dizziness. Again, a science based research trail. First to define what type of dizziness(many generic physicians want to say vertigo and go through some simple action).  There are folks out there with passion for science, passion for patient and passion for science based neurological treatments. Also relied on an overseas spiritual support group, in the Philippines, which help allay the neurological changes.  Yes, holistic advocate, science, spirit and a new day.  JIM>>>>

hi, everyone not really sure how this works but I have foot drop and sever neuropathy and have been on heavy pain meds since Sept. of 08 Morp hine 60 mg 4 times per day dialuad 2mg 2 times per day and tramadol. I have been to many pain doctors and my last pain doctor fired me accusing me of using a paper script that I never received. A long story anyway a got a detective involved and he got the picture of the woman that was trying to fill my scripts. So, I went through withdrawals for about a week. It took me a couple of day to figure out why I was so sick. So, I finally found one doctor out of my plan that would take me and he has put me on Suboxone. Has anyone ever heard of that for chronic pain? It is supposed to be for people that have been on Heroin and they give them that drug to help them come down. I was on it for about a month and went back and told him it was not working and please give me some Hydrocodone and he told me the pain would be worse and he was right. So, now as of 2 days of ago I am on Suboxone again. I ask him how long it would take for me to fill better and he told me it could take up to 6 months. I have this cream that I started putting on my feet and I think that it is really working and my feet do feel better, but I am really concerned about the 6 months. But at this point I really do not have any other options. I might have one other doctor i could go to but if he would not give me any opiods I would be shit out of luck. Excuse my language. I am so frustared at this point. So, I have been looking around about surgeries for neuropathy. Has anyone ever had that done. I do not know if that would even work on me since I have Foot Drop. And of course I waited to long to have something done about my Foot Drop because I did not know someone could do something about thanks to my neurologist. Anyway I guess my main 2 questions
: Does anyone know about Suboxone?
And has anyone done anything for ther neuropathy? Surgeries or something called the Scrambler at John Hopkins?
Thanks for input .

@mikween

hi, everyone not really sure how this works but I have foot drop and sever neuropathy and have been on heavy pain meds since Sept. of 08 Morp hine 60 mg 4 times per day dialuad 2mg 2 times per day and tramadol. I have been to many pain doctors and my last pain doctor fired me accusing me of using a paper script that I never received. A long story anyway a got a detective involved and he got the picture of the woman that was trying to fill my scripts. So, I went through withdrawals for about a week. It took me a couple of day to figure out why I was so sick. So, I finally found one doctor out of my plan that would take me and he has put me on Suboxone. Has anyone ever heard of that for chronic pain? It is supposed to be for people that have been on Heroin and they give them that drug to help them come down. I was on it for about a month and went back and told him it was not working and please give me some Hydrocodone and he told me the pain would be worse and he was right. So, now as of 2 days of ago I am on Suboxone again. I ask him how long it would take for me to fill better and he told me it could take up to 6 months. I have this cream that I started putting on my feet and I think that it is really working and my feet do feel better, but I am really concerned about the 6 months. But at this point I really do not have any other options. I might have one other doctor i could go to but if he would not give me any opiods I would be shit out of luck. Excuse my language. I am so frustared at this point. So, I have been looking around about surgeries for neuropathy. Has anyone ever had that done. I do not know if that would even work on me since I have Foot Drop. And of course I waited to long to have something done about my Foot Drop because I did not know someone could do something about thanks to my neurologist. Anyway I guess my main 2 questions
: Does anyone know about Suboxone?
And has anyone done anything for ther neuropathy? Surgeries or something called the Scrambler at John Hopkins?
Thanks for input .

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Hello @mikween, thank you for staring your story and frustrating with neuropathy pain. It sounds like you were on quite the regiment of pain medications. I had to be on high doses of dilaudid after I had my ankle fused and experienced a week long period of withdrawals when I weened off it as well. At first, I didn’t understand that it was withdrawal either, it was a weird feeling.

I would like to invite @coolrufus and @mskay to share their experiences with suboxone.

As you may have noticed, I moved your discussion to the Brain & Nervous System group and combined your post with an existing discussion taking place on Neuropathy pain, specifically peripheral neuropathy. I did this so you could meet the other members talking about the symptoms and experiences that are similar to yours. If you are replying by email, I suggest clicking on the VIEW & REPLY button so that you are brought to the full discussion. Then you can read through the other members posts about neuropathy pain.

NOW, I WOULD LIKE TO KNOW IF ANYONE HAS EVER HAD THE SURGERY FOR PERIPAL NEUROPATHY? And if you have has it worked? I have an appt. May 12th with a doctor for a consult to see if I would be candidate? It might not even work for me since I have foot drop or maybe because it has been to long. Back in Sept. Of 08. I inhaled Carbon Monoxide on my boyfriends boat sitting down in the cabin Indian style fir about a day at least. That is how this horrible journey of neuropathy and foot drop began. Of course years later I found out that my foot drop could have been corrected within the first couple of years that I had it. But my neurologist just told me if it did not come back in a couple of years it would never come back. Told me nothing about these surgeries that were out there. One day I was done research and found out it could be done. I am currently still working with one doc, but I am sure I am way out of the time frame. Thanks to the doc… If anyone knows anything good for chronic pain for neuropathy please let me know. As I said earlier I am on Suboxone after being on opioids for many years. I just ordered some cream called lidocaine from Amazon that I read is good. I have been doing so much research myself… I also read about lidocaine injections.. Has anyone ever heard of that?

1. I am using Gabapentin,300 mg, twice daily, for jabbing/pins and needles. Some people are using 900 or more daily. My cold feet are probably from nerve damage and reduced circulation.

My neuropathy is from diabetes.

2. Two other persons at my senior residence use Lyrica with much success.Their neuropathy is not from diabetes. Some neuoropathy is just idiopathic (no known source) and possibly genetic.

3. Lidocaine is a pain reliever I believe.

On previous blogs I mentioned Ketamine as a possible pain reliever, even by itself.

@mikween

NOW, I WOULD LIKE TO KNOW IF ANYONE HAS EVER HAD THE SURGERY FOR PERIPAL NEUROPATHY? And if you have has it worked? I have an appt. May 12th with a doctor for a consult to see if I would be candidate? It might not even work for me since I have foot drop or maybe because it has been to long. Back in Sept. Of 08. I inhaled Carbon Monoxide on my boyfriends boat sitting down in the cabin Indian style fir about a day at least. That is how this horrible journey of neuropathy and foot drop began. Of course years later I found out that my foot drop could have been corrected within the first couple of years that I had it. But my neurologist just told me if it did not come back in a couple of years it would never come back. Told me nothing about these surgeries that were out there. One day I was done research and found out it could be done. I am currently still working with one doc, but I am sure I am way out of the time frame. Thanks to the doc… If anyone knows anything good for chronic pain for neuropathy please let me know. As I said earlier I am on Suboxone after being on opioids for many years. I just ordered some cream called lidocaine from Amazon that I read is good. I have been doing so much research myself… I also read about lidocaine injections.. Has anyone ever heard of that?

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Hello @mikween, I have not heard of a surgery specifically for peripheral neuropathy. I’ve done a lot of research this past year looking for answers myself although I do not have the chronic pain that you have. Do you mean foot drop surgery? Have you thought about getting a second opinion? I’m not a medical professional and have no medical background but I definitely would want a second opinion. Also, I would have a very frank discussion with the doctor about the associated risks and outcomes for a surgery.

Here is a link to a Google Scholar site search for foot drop surgery – http://bit.ly/2pVuJUr that might give you some more information if foot drop surgery is what you are looking at.

Hope you find an answer that works for you…

John

@ujeeniack

1. I am using Gabapentin,300 mg, twice daily, for jabbing/pins and needles. Some people are using 900 or more daily. My cold feet are probably from nerve damage and reduced circulation.

My neuropathy is from diabetes.

2. Two other persons at my senior residence use Lyrica with much success.Their neuropathy is not from diabetes. Some neuoropathy is just idiopathic (no known source) and possibly genetic.

3. Lidocaine is a pain reliever I believe.

On previous blogs I mentioned Ketamine as a possible pain reliever, even by itself.

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I have written before about the nine prescriptions I have used, acupuncture,deep massage and creams….to no avail. Now I am getting certified for the use of cannabis. In Minnesota a doctor must certify you and there is no one in the town where I live that will do that. I am in the process of finding someone in a larger metropolitan area. Then I will use a pharmacist run clinic in Hibbing to obtain the oil I need. There has been some research done with peripheral neuropathy and cannabis relief. Has anyone experienced this relief???

@ujeeniack

1. I am using Gabapentin,300 mg, twice daily, for jabbing/pins and needles. Some people are using 900 or more daily. My cold feet are probably from nerve damage and reduced circulation.

My neuropathy is from diabetes.

2. Two other persons at my senior residence use Lyrica with much success.Their neuropathy is not from diabetes. Some neuoropathy is just idiopathic (no known source) and possibly genetic.

3. Lidocaine is a pain reliever I believe.

On previous blogs I mentioned Ketamine as a possible pain reliever, even by itself.

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Hello @fonda, I belong to the Minnesota Neuropathy Association and we have monthly meetings most months. We have a board member who has benefited from medical cannabis. We had a meeting back on March 25 where we had a guest speaker come and talk to us about the use of medical cannabis for chronic pain. More information about that meeting can be found here – http://mayocl.in/2qpMzOZ.

Also, for those living in and around the Minneapolis area or don’t mind driving, our meetings are posted on our website at:
http://www.neuropathy-mn.org (this will re-direct to a new website that we just made active – http://www.minnesotaneuropathyassociation.org/).

Hoping you hear from others that have tried it. I only have the numbness associated with my peripheral neuropathy so I’m fortunate that I don’t have the pain.

Hope others that have tried it will share their experience. I have to believe it would be better than the pain drugs and their associated side effects.

John

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

@mskay I HEARD THAT YOU HAD SOME KNOWLEDGE OF SUBOXONE. THE DOCTOR JUST PUT ME ON IT FOR CHRONIC PAIN. DO YOU KNOW IF THAT REALLY WORKS FOR THAT. HOPEFULLY I WILL NOT HAVE TO WORRY ABOUT THAT ANYMORE AFTER I GO TO THIS FOOT DOCOTOR ON MAY 16TH. BUT BEFORE THAT I WAS ON HEAVY MEDS SINCE SEPT. OF 08. SO IT HAS BEEN A BIG CHANGE TO SAY THE LEAST.

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