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rabbit10
@rabbit10

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Joined: Apr 07, 2016

Anyone here dealing with peripheral neuropathy?

Posted by @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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I have had my neuropathy for about 3yrs. now, they said that it may be a side-effect of the chemo and if I got it it most likely would not be reversible. Well I did develop it and have had some reduction after the end of my 1st batch of chemo that was when it moved from up to my knee to mostly my feet. as my left leg improved my right foot got worse. They never discussed with me what "type" it was, does that matter? I don't know.
It is always there but the intensity will ebb and flow. when my toes rub against the sheet at night the pain and tingling increase so much I can't sleep. Then there are the sudden stabbing pains what I really don't understand is what is going on with my big toes. Some days they feel as though I broke them and the pain runs right up the top of my foot.
The best days are when I don't have to wear shoes or (and this is stupid) when I wear shoes all day. It seems I get the broken to pain mostly when I wear shoes. I can see the measured breathing helping a lot will give it a try, I have relaxation cd's. What I have been doing is try to stay distracted.I am also dealing with cancer and am in pallative care but that doesn't mean I have abandoned treatment. I am off chemo now because the last combination seemed to be doing nothing as my tumors grew while on it. It could be it would have grown faster but it was really hard on my body so we made the decision to stop. My point was going to be I have a LOT of distractions !!! LOL It was the first round of chemo that gave me the neuropathy.

it is hard not to get cynical I had a dozen people come to me with a cure when I was first RX'd with cancer or the gov't won't let anyone find a cure. They didn't even have to know what kind of cancer I had. I just smiled accepted there video or what ever and thanked them for caring so much.

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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@johnbishop – I too have experienced relief by using vitamins and supplements. I have idiopathic small fiber neuropathy but have no pain. I had numbness on feet to my knees and tingling that was the biggest bother at night on both. I have a long history of degenerative disc disease issues , but I control it with exercise and lots of walking. I also started Yoga in January. The doctors say my back is not the cause of the neuropathy. I started taking a multivitamin, b complex and alpha lupeic acid as recommended by the rheumatologist. He said there have been some good studies about b vitamins and alpha Lopeic and he would add in a multi vitamin. Almost overnight after adding in the multi vitamin the pins and needles and tingling disappeared completely and the numbness diminished just to the ankle on one foot and just the bottom of the foot on the other foot. It's hard for me to believe this can't be related. Regardless if it's the "fix" it's worth a try. nutrition is often overlooked so I should add that I stopped eating meat in March and eat a natural food diet as I always have. None of which would hurt anyone while they look for their answers. I consider myself very lucky in comparison to most, but thought it might be worth sharing this little bit.

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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@charly I found the supplements through a closed Facebook group. They are all over the counter vitamins, minerals and supplements. When I found the group they had about 3K members and now are over 7K in numbers. Most have the PN with pain and were taking the normal drugs to block the pain. A lot if not all of those members have been able to taper off of their medications and just take the supplements. I did a lot of research and trial and error like a lot of us before I found what has helped me. I don't know if it will work for everyone but it's all natural stuff so it's not going to hurt a person. The group is now has 501c3 status and a program for members who can't afford the cost. I figure the cost for me to be about 8 to 10 dollars a day and unfortunately nothing is covered by insurance. I ran the supplements by my doctor who shared them with the Mayo pharmacist. His only comment was he thought the Omega 3 and 6 supplements were kind of high numbers. But if you do your own research on each of the supplements you can make your own decision.

The group has a website that makes it easier to join the Facebook closed group – http://solutions2pnpd.com/. I was hesitant before I first joined but I did my own research and made a decision to try it and I'm glad I did. There are so many scams out there taking advantage of people with neuropathy which is why I always recommend doing you own research. Here are of the sources I've used but not all:

Quazar's 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/ProtectYourself/HealthFraud/ucm539101.htm

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

John

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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Hi @rpierro — Thank you for sharing. I'm with you. I think nutrition plays a big part in a lot of autoimmune diseases. I got started on my journey with eating better when I found a book by Dr Terry Wahls – The Wahls Protocol. She has an amazing story of how she did her own research in her MS disease to come up with cellular level nutrition (my words) that helped eliminate a lot of the symptoms of MS. She went from a wheel chair to riding a bicycle in a year or so – https://terrywahls.com/about/about-terry-wahls/. Of course she is selling a product but she does a lot of TED Talks and helps a lot of people. Just do a Google search on her name and YouTube and you will find a lot of informative videos.

I haven't stopped eating meat but I have pretty much focused more on poultry and I eat a lot less red meat. I also only have meat 2 or 3 times a week for the most part. I try to eat more veggies than fruit but that can be a struggle for me ☺ I too consider myself lucky in that I've never had the pain with my PN that others have. It does sometimes feeling like a burning sensation in the feet but that's not very often.

John

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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Recently there was talk of using Saran Wrap on your feet. I can’t find that thread and want to know how long they kept the wrap on.

@johnjames

Charly- I'm sorry, I think I didn't explain well enough. I was asking if anyone had server jerks in the night when you are sleeping- For me they have become worse as well as the feeling of falling more than before. I have been on the medication for 4 years now and does help with some things, Sorry for the mis-understanding. Jsouth

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I have jerky legs from knees done in the evening when I’m relaxing. I always feel like my nerve ending are firing madly. I don’t feel them at night when I am sleeping.

Liked by barbarn

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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Charley, thanks for the info. How long do you keep the wrap on or do you do this everlasting times a day..

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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I just saw an interesting article that I thought I would share with the group.

Home Remedies: How a healthy diet can help manage pain:
https://newsnetwork.mayoclinic.org/discussion/home-remedies-how-a-healthy-diet-can-help-manage-pain/

John

another thing I am trying is magnesium 500mg 2-3 times a day seems to help the cramping and locking up of the toes and arches. So does anyone else here DX from chemo? Does that make it a special kind of neuropathy? how can I tell and does it makes a difference in treatments?

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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Hi John, thanks for your reply. Does it have to be the Saran Wrap Brand? or will just any plastic wrap work that you know of. Or is it like Band-Aids that apply to any brand???? We may have to wait for some feed back from someone who has tried other brands! @ gailfaith.

@charly

Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.

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Hi @gailfaith — I haven't tried the Saran Wrap yet but I'm sure any brand will work. There are several "clingy" brands which is a property I think they all share. I think @charly originally shared this treatment tip.

@allisonsnow

another thing I am trying is magnesium 500mg 2-3 times a day seems to help the cramping and locking up of the toes and arches. So does anyone else here DX from chemo? Does that make it a special kind of neuropathy? how can I tell and does it makes a difference in treatments?

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Hi @allisonsnow — I'm no medical expert, have no training or background but simple logic and some research leads me to believe neuropathy is neuropathy – damaged or dead nerves. It can be caused by chemotherapy, statins/drugs, injuries, surgeries and according to an 80 year old neurologist I heard speak — If you live long enough you will get neuropathy, nerves die.

You are spot on when it comes to the magic cures advertised – pays to do your own research. Here's some I use:

Quazar's 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/ProtectYourself/HealthFraud/ucm539101.htm

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

John

@allisonsnow

another thing I am trying is magnesium 500mg 2-3 times a day seems to help the cramping and locking up of the toes and arches. So does anyone else here DX from chemo? Does that make it a special kind of neuropathy? how can I tell and does it makes a difference in treatments?

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thank you John

@allisonsnow

what I have is a big ?. It may sound like a stupid ? but what is the difference between diabetic neuropathy and that caused by the chemo I received. They said I may get it and it probably wouldn't go away (it didn't). So when it didn't I wasn't surprised but it has gotten worse. What can I do?

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Thanks for the references. I’ll take a look at them. I take even more of the turmeric (3600, once or twice a day) and find it very helpful. The only things I’ve tried to eliminate are starches, sugars and cooked tomatoes.

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