Anyone here dealing with peripheral neuropathy?

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

I developed peripheral neuropathy because of chemo. My oncologist says the only thing studies have proven effective is gabapentin (neurotoxin) It doesn’t work for everyone and if the dose isn’t high enough it won’t work at all. I think it has gotten slightly better but my fingers and toes and soles are pretty numb and cold makes it worse. I know others suffer more severely and at least I’m not in pain but you might want to ask your doctor about medication. I’m glad to read above there may be new treatments down the pipe. Ones based on science, not snake oil

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Most interesting, this is the 2nd on Laser Therapy, thanks a lot – I have just replied to another one, see on Mayo Clinic Connect, These support my effort to make my own laser with high output and possibility of scanning the legs and see what happens!do you no longer need any pills such as Lyrica and other?I am still trying to get off Opioids and this may be the answer.Nice to hear you have succeeded to get rid of the pain  – does it last you think or will you repeat the treatment?

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@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 @gratefulone, @jazzy27 and @lindy1956.
I just tagged you in a discussion about CIDP where you’ll meet others talking about this condition. Hope you’ll join us there:

– Anyone been diagnosed with CIDP? http://mayocl.in/2m6rsMw

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@melperez1223

I was recently diagnosed with peripheral neuropathy and autonomic neuropathy. I’ve had pain in my feet (primarily left), knees, hands, chest pains, heart palpitations and dizziness. Nerve conduction tests were negative, but my Neurologist performed 5 punch biopsies from my ankle up to my upper arm and they all came back positive for small fiber neuropathy. I am taking 600 mg of gabapentin for 2 weeks and will move up to 800 mg 3 times a day. I have primary Sjogren’s syndrome.

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I had some type of neuropathy for about two years, not much help from local University Medical area, then research food medicine.  Turmeric helped, a small daily dose.  And started a supportive spiritual communication in Philippines on line, helpful.  Was short of traveling to Mayo.  Recovered from neuropathy in about two years. Recently with some dizziness(again, a foggy term: can be veritgo(positional ), imbalance(proprioceptive), but with second inspection to my MRI over a year ago(first by Radiologist), and now Neurologist), seems no physical cause(tumor or bleed).  The symptoms of dizziness are less, and good sign in neurology.  Much research on science level in food medicine today, and don’t over look spiritual support systems, even if you do not believe.  JIM>>>>

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@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>>>>

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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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@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

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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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@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

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@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>>>>

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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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@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.

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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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