Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@dancermurphy

Thank you Chris ! I have sighed up for calm have not tried yet but hope to when I travel this weekend . I also do the wim hof method of breathing you can goggle it I find it helpful. I am walking by the beach which hearing the waves chills me out. I don’t have anxiety and hope I don’t . I am not depressed all the time only get saddened when I have a bad day or night . I am a workaholic and sometimes overwhelming exhaustion can surface I think from the Gabapentin. I think I might lead a meditation class so I can practice more . Thank you again

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@artscaping I feel like I have a alien eating me up inside . Today I chose to laugh , smile and live in the moment , this alien will not conquer my spirit as it has only been part of me since Feb . I am grateful I am still here and can walk , talk and laugh . I was told I was born with a extra happy gene . Like everybody I will continue to search for answers . Today feeling grateful!! Hoping you have a peaceful day and watch a funny movie I suggest The Upside !!

REPLY
@kansasgal

Hello John, thank you for your reply. I received NO help from the pain clinic, they told me to ask my neurologist about Lyrica. I told them I had already done that, and Neurologist told me since I was already on 2 different nerve pain medications that we should not throw another one into the mix. It was a total waste of my time and money to go to a pain clinic. My latest symptom is heart palpitations, about 1 per minute. Anyone else experience this while on gabipenten or duloxetine or having to quit Norco 5 cold turkey? Also my BP is extremely high, even with BP meds 2x a day, Neurologist said it is due to the pain, but I was given no idea to ease the pain. I only get out of the house to grocery shop or go to doctor, since it hurts to walk.

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Update: I am now on Lyrica (100 MG 3x/day), Nortriptyline (20 mg/night), gabapentin (600 mg 3/day). Is anyone else on this combination of drugs to help with PN? Has it helped? Cymbalta gave me PVC's, abnormal heart rhythm, so I had to quit that suddenly which was absolutely terrible because of the massive depression that ensued.

REPLY
@kansasgal

Update: I am now on Lyrica (100 MG 3x/day), Nortriptyline (20 mg/night), gabapentin (600 mg 3/day). Is anyone else on this combination of drugs to help with PN? Has it helped? Cymbalta gave me PVC's, abnormal heart rhythm, so I had to quit that suddenly which was absolutely terrible because of the massive depression that ensued.

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Wow I really feel for you !! I am only on 600 Gabapentin.

REPLY
@dancermurphy

@artscaping I feel like I have a alien eating me up inside . Today I chose to laugh , smile and live in the moment , this alien will not conquer my spirit as it has only been part of me since Feb . I am grateful I am still here and can walk , talk and laugh . I was told I was born with a extra happy gene . Like everybody I will continue to search for answers . Today feeling grateful!! Hoping you have a peaceful day and watch a funny movie I suggest The Upside !!

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@dancermurphy So good to read about your enthusiasm for life and how you conquer the aliens. Checked out The Upside…..an amazing relationship between two very different people. Thanks for the tip. I need movie suggestions. Have a restful sleep tonight. Chris

REPLY
@steeldove

An interesting article from The New York Times. My own experience is that I've had absolutely no pain relief with gabapentin. I take 800 mg at bedtime, as it does help me sleep.
Steel Dove

PERSONAL HEALTH
Millions Take Gabapentin for Pain. But There’s Scant Evidence It Works.
“There is very little data to justify how these drugs are being used and why they should be in the top 10 in sales,” a researcher said

By Jane E. Brody
May 20, 2019

One of the most widely prescribed prescription drugs, gabapentin, is being taken by millions of patients despite little or no evidence that it can relieve their pain.

In 2006, I wrote about gabapentin after discovering accidentally that it could counter hot flashes.

The drug was initially approved 25 years ago to treat seizure disorders, but it is now commonly prescribed off-label to treat all kinds of pain, acute and chronic, in addition to hot flashes, chronic cough and a host of other medical problems.

The F.D.A. approves a drug for specific uses and doses if the company demonstrates it is safe and effective for its intended uses, and its benefits outweigh any potential risks. Off-label means that a medical provider can legally prescribe any drug that has been approved by the Food and Drug Administration for any condition, not just the ones for which it was approved. This can leave patients at the mercy of what their doctors think is helpful.

Thus, it can become a patient’s job to try to determine whether a medication prescribed off-label is both safe and effective for their particular condition. This is no easy task even for well-educated doctors, let alone for desperate patients in pain.

Two doctors recently reviewed published evidence for the benefits and risks of off-label use of gabapentin (originally sold under the trade name Neurontin) and its brand-name cousin Lyrica (pregabalin) for treating all kinds of pain.

(There is now also a third drug, gabapentin encarbil, sold as Horizant, approved only for restless leg syndrome and postherpetic neuralgia, which can follow a shingles outbreak.)

The reviewers, Dr. Christopher W. Goodman and Allan S. Brett of the University of South Carolina School of Medicine, found the drugs, called gabapentinoids, wanting in most cases for which they are currently being prescribed.

As Dr. Goodman said in an interview, “There is very little data to justify how these drugs are being used and why they should be in the top 10 in sales. Patients and physicians should understand that the drugs have limited evidence to support their use for many conditions, and there can be some harmful side effects, like somnolence, dizziness and difficulty walking.” Furthermore, for patients prone to substance use disorders, like an opioid addiction, the gabapentinoids, although they are not opioids, are potentially addictive, he said.

The gabapentinoids are symbolic of three currently challenging problems in the practice of medicine: a deadly national epidemic of opioid addiction prompting doctors to seek alternative drugs for pain; the limited training in pain management received by most doctors; and the influence of aggressive and sometimes illegal promotion of prescription drugs, including through direct-to-consumer advertising.

Gabapentin and Lyrica, both sold by Pfizer, have been approved by the Food and Drug Administration to treat only four debilitating pain problems: postherpetic neuralgia, diabetic neuropathy, fibromyalgia and spinal cord injury. Even for these approved uses, the evidence for relief offered by the drugs is hardly dramatic, Drs. Goodman and Brett reported in JAMA Internal Medicine online.

In many well-controlled studies they found there was less than a one-point difference on the 10-point pain scale between patients taking the drug versus a placebo, a difference often clinically meaningless. For example, among 209 patients with sciatica, Lyrica did not significantly reduce the intensity of leg pain when compared with a placebo, and dizziness was more commonly reported by the 108 patients who took the drug.

But when patients complain of pain related to conditions ranging from sciatica and osteoarthritis to foot pain and migraine, clinicians often reach for the prescription pad and order either gabapentin or the more costly Lyrica.

Following the approval of Neurontin, its producer at the time, Warner-Lambert, engaged in what the government determined was an illegal marketing campaign that resulted in sales exceeding $2 billion a year before its patent expired in 2004. Still, the campaign succeeded in bringing gabapentin to the attention of many doctors who treat patients with persistent life-disrupting pain.

It’s not that there are no other alternatives to opioids to treat chronic pain, among them physical therapy, cognitive behavioral therapy, hypnosis and mindfulness training. But practicing clinicians may be unaware of the options, most of which require more effort for the doctor than writing a drug prescription and are not as easy or accessible for patients as swallowing a pill.

As Dr. Michael E. Johansen, a family doctor in Columbus, Ohio, put it, “I use gabapentin clinically and try to stay close to the approved indications, but occasionally we run out of options when faced with patients who hurt. It’s rare that these drugs eliminate pain, and I don’t tell patients their pain will go away. If there’s any benefit, it’s probably marginal.”

Despite the limited evidence of benefit, in a study published in JAMA Internal Medicine in February, Dr. Johansen found that the number of people taking gabapentinoids more than tripled from 2002 to 2015, with more than four in five taking the inexpensive generic, gabapentin.

In 2016, 64 million prescriptions for gabapentin were dispensed, up from 39 million in 2012, Drs. Goodman and Brett reported in The New England Journal of Medicine. They believe that the opioid epidemic partly fueled this increase. “While working in inpatient and outpatient settings,” they wrote, “we have observed that clinicians are increasingly prescribing gabapentin and pregabalin for almost any type of pain.”

Dr. Johansen cited several serious concerns about overuse of gabapentinoids, including “a dearth of long-term safety data, small effect sizes, concern for increased risk of overdose in combination with opioid use, and high rates of off-label prescribing, which are associated with high rates of adverse effects.”

Contributing to the frequent misuse of gabapentinoids is how doctors interpret the term “neuropathic pain” for which the drugs are commonly prescribed. It is defined as pain caused by a lesion or disease of the nervous system, leading clinicians to assume that if a drug is effective for one type of neuropathic pain, it is effective for all types, regardless of the underlying cause, Drs. Goodman and Brett suggested.

Dr. Johansen pointed out that “there is no recipe book” for treating pain with gabapentinoids. “Doctors need to work with one patient at a time and figure out what works and what doesn’t work,” he said. He noted that many times pain resolves with “the tincture of time” but patients and doctors may attribute improvement to the prescribed drug. For those taking a gabapentinoid, he suggested that patients’ doctors readdress its use after two or three months.

But Dr. Goodman cautioned against going off the drug cold turkey because there can be unpleasant withdrawal symptoms.
Jane Brody is the Personal Health columnist, a position she has held since 1976. She has written more than a dozen books including the best sellers “Jane Brody’s Nutrition Book” and “Jane Brody’s Good Food Book.”

A version of this article appears in print on May 20, 2019, on Page D7 of the New York edition with the headline: Doubt Grows on the Use of a Popular Drug. Order Reprints | Today’s Paper | Subscribe
READ 445 COMMENTS

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To Steeldove and my fellow PN friends:

What the article by Jane Brody really fired me up, what she stated is basically a reflection of a mostly American European problem called Big Pharma marketing engine and unfortunately slowly feeding (in my opinion) and moving towards a very constipated medical system.

If you as a person do not work and seek a better life medically you will not get any better. If you look back at our own medical history, as a nation there was a huge legal movement in the early 1900's when Rockefeller and others moved this nation towards the worship another god called "modern science" and natural medication was demonized and so were doctors and those who practiced a more natural approach.

As one example, in the early to mid 1900's, many advances were made with people who were battling Cancer, even with 4th stage Cancer were being treated with different approaches other than the new approved methods, many good physicians were jailed, professionally and publicly ridiculed and many lost their licenses. Many of those cancer patients became survivors as they lived many productive years afterwards with the then "illegal treatments".

With a few exceptions my friends with stage 4 Cancer including my very own son live only a about 8 to 9 months and a very miserable life using Chemo prescribed and sold directly by the doctor. That's true and correct sold directly from the doctor to the patient. Something is very wrong about that and a chemo drug is killing even good healthy cells!! Again from my viewpoint is that it would have been far better to live productive and live 6 to 7 months without any chemo drugs. That is a very high price to pay for two months!

Now there are some great breakthroughs like sulfur drugs and a few others, which were a great asset to modern medicine. If you look at today's prescription drugs they are a single molecule synthetic drug (the ones you are taking now here in the US and most used in Europe) and they are all are modeled directly from 100% natural flowers, roots and leaves. There is no other model to follow except our own God given Nature. There are a few exceptions to the like sulfur based drugs. The list is very short of non organic substances used in the medical field. Silver is the great exception to natural organics as it is very beneficial.

While writing this little rant, I looked at the medications that I take right now for my issues that I have, I must admit I personally take several synthetic medications. However, with that being said I am slowly moving ever towards a more natural approach and my blood work shows that it is working. If any physician would look at my blood work lab tests after the past 10 years and not knowing who I am or about my story, many would ask many questions about what is making the improvements, as there is a dramatic difference. In the past 3 years and I am stronger and better each month. Yes I still have SFN, however my Opioid (50mg) intake is 4 a day and nearing 3 a day instead of 6 a day and no more Lyrica or Gabapentin. As I stated before I am sure that for some Lyrica or Gabapentin and 100's of other big Pharma wonder medications and I am sure that some help those who suffer and I am very grateful for that. But the fact remains that there are many secondary issues using prescription drugs as they are are made from natural gas and oil based synthetics.

Anyway I have been using a topical pain lotion for several years now and after looking at the ingredients closely, it seems to to me, they bring more blood flow and oxygen to my feet. If anyone thinks that my SFN is rather a small issue after a fall accident, I could not walk expect on the edge of my feet for quite awhile. My wonderful wife had to help me around a lot and then after several years I was able, with using topical pain lotions and Opioids I was able to walk thru CostCo and back to the car. Now I an driving a car mainly during the daytime and back to a more physical and fairly productive life even at 72.

Many physicians are trying to bring a change for the better in their patients lives and do not have any other offering except what they have been taught in school, BTW nutrition is a one day subject for most of them. From my viewpoint, your food intake is the most important link you will have with nature. We now are eating mainly none live foods and foods with a lot of preservatives that come from a factory.

Many of us do not eat with others like in a family situation around a dinner table like I did as a kid, and most of us on this PN blog are older now. It seems to me that if we share food and fellowship more with others, we will have a much better life to live. My wife and I usually have a few friends over for dinner each and almost every week and each one shares in bringing the main course. We try and outreach to help others in this way and it is a lot of fun as well and brings a positive change as well to us and hopefully for them.

While traveling abroad which I used to do a lot, I have been treated by different medical approaches. One of the a main differences is they spent about 30-45 minutes with me instead of 5 minutes. The other grip that I have is this, I have noticed that many times the doctor already has their mind made up before seeing me and almost will not listen to what I have to say or how I am doing, they just write out and sign another script and say come back in a week if it does not work. That is very sad indeed!

The people of this country and a few physicians are slowly moving towards a more integrative approach using a fewer drugs along with a more natural organic lifestyle in what we eat. This is the approach that my wife and I have taken and one item worth noticing is this: when one uses a synthetic drug that are dozens of (some rather scary) warnings and many side effects. This is very rare to see using any type of organics. "Like almost none!!" It took many years for you to get where you are at right now and it will not go ways with a few pills.

Like others, I got very tired of treating the symptoms and not getting towards solving the main issue or problem. As I was so sick and nearly ready to give up with the pain from PN and I also suffer from age 30 severe daily migraine headaches, I finally found an exceptional physicians, one who after looking at many many doctors within 1 hour distance driving time. It has made a huge difference in my life and very beneficial difference for my wife as well.

You may possibly consider finding a physician who practices with a "Integrative" approach as we have and change your diet and start integrating a more Organic lifestyle and be ready to make some changes as it should be a great benefit to you.

As always, be at peace with the creator and read His Word as he changed this old atheists life and melted my heart of stone and in time brought me a wonderful caring wife (now of 22 years) and gave me far more abundant life than I or this so called modern science could of ever had. Now learning to live with my PN. Eat your Organic Vegetables and help someone who is less fortunate! MicTim

REPLY
@mictim

To Steeldove and my fellow PN friends:

What the article by Jane Brody really fired me up, what she stated is basically a reflection of a mostly American European problem called Big Pharma marketing engine and unfortunately slowly feeding (in my opinion) and moving towards a very constipated medical system.

If you as a person do not work and seek a better life medically you will not get any better. If you look back at our own medical history, as a nation there was a huge legal movement in the early 1900's when Rockefeller and others moved this nation towards the worship another god called "modern science" and natural medication was demonized and so were doctors and those who practiced a more natural approach.

As one example, in the early to mid 1900's, many advances were made with people who were battling Cancer, even with 4th stage Cancer were being treated with different approaches other than the new approved methods, many good physicians were jailed, professionally and publicly ridiculed and many lost their licenses. Many of those cancer patients became survivors as they lived many productive years afterwards with the then "illegal treatments".

With a few exceptions my friends with stage 4 Cancer including my very own son live only a about 8 to 9 months and a very miserable life using Chemo prescribed and sold directly by the doctor. That's true and correct sold directly from the doctor to the patient. Something is very wrong about that and a chemo drug is killing even good healthy cells!! Again from my viewpoint is that it would have been far better to live productive and live 6 to 7 months without any chemo drugs. That is a very high price to pay for two months!

Now there are some great breakthroughs like sulfur drugs and a few others, which were a great asset to modern medicine. If you look at today's prescription drugs they are a single molecule synthetic drug (the ones you are taking now here in the US and most used in Europe) and they are all are modeled directly from 100% natural flowers, roots and leaves. There is no other model to follow except our own God given Nature. There are a few exceptions to the like sulfur based drugs. The list is very short of non organic substances used in the medical field. Silver is the great exception to natural organics as it is very beneficial.

While writing this little rant, I looked at the medications that I take right now for my issues that I have, I must admit I personally take several synthetic medications. However, with that being said I am slowly moving ever towards a more natural approach and my blood work shows that it is working. If any physician would look at my blood work lab tests after the past 10 years and not knowing who I am or about my story, many would ask many questions about what is making the improvements, as there is a dramatic difference. In the past 3 years and I am stronger and better each month. Yes I still have SFN, however my Opioid (50mg) intake is 4 a day and nearing 3 a day instead of 6 a day and no more Lyrica or Gabapentin. As I stated before I am sure that for some Lyrica or Gabapentin and 100's of other big Pharma wonder medications and I am sure that some help those who suffer and I am very grateful for that. But the fact remains that there are many secondary issues using prescription drugs as they are are made from natural gas and oil based synthetics.

Anyway I have been using a topical pain lotion for several years now and after looking at the ingredients closely, it seems to to me, they bring more blood flow and oxygen to my feet. If anyone thinks that my SFN is rather a small issue after a fall accident, I could not walk expect on the edge of my feet for quite awhile. My wonderful wife had to help me around a lot and then after several years I was able, with using topical pain lotions and Opioids I was able to walk thru CostCo and back to the car. Now I an driving a car mainly during the daytime and back to a more physical and fairly productive life even at 72.

Many physicians are trying to bring a change for the better in their patients lives and do not have any other offering except what they have been taught in school, BTW nutrition is a one day subject for most of them. From my viewpoint, your food intake is the most important link you will have with nature. We now are eating mainly none live foods and foods with a lot of preservatives that come from a factory.

Many of us do not eat with others like in a family situation around a dinner table like I did as a kid, and most of us on this PN blog are older now. It seems to me that if we share food and fellowship more with others, we will have a much better life to live. My wife and I usually have a few friends over for dinner each and almost every week and each one shares in bringing the main course. We try and outreach to help others in this way and it is a lot of fun as well and brings a positive change as well to us and hopefully for them.

While traveling abroad which I used to do a lot, I have been treated by different medical approaches. One of the a main differences is they spent about 30-45 minutes with me instead of 5 minutes. The other grip that I have is this, I have noticed that many times the doctor already has their mind made up before seeing me and almost will not listen to what I have to say or how I am doing, they just write out and sign another script and say come back in a week if it does not work. That is very sad indeed!

The people of this country and a few physicians are slowly moving towards a more integrative approach using a fewer drugs along with a more natural organic lifestyle in what we eat. This is the approach that my wife and I have taken and one item worth noticing is this: when one uses a synthetic drug that are dozens of (some rather scary) warnings and many side effects. This is very rare to see using any type of organics. "Like almost none!!" It took many years for you to get where you are at right now and it will not go ways with a few pills.

Like others, I got very tired of treating the symptoms and not getting towards solving the main issue or problem. As I was so sick and nearly ready to give up with the pain from PN and I also suffer from age 30 severe daily migraine headaches, I finally found an exceptional physicians, one who after looking at many many doctors within 1 hour distance driving time. It has made a huge difference in my life and very beneficial difference for my wife as well.

You may possibly consider finding a physician who practices with a "Integrative" approach as we have and change your diet and start integrating a more Organic lifestyle and be ready to make some changes as it should be a great benefit to you.

As always, be at peace with the creator and read His Word as he changed this old atheists life and melted my heart of stone and in time brought me a wonderful caring wife (now of 22 years) and gave me far more abundant life than I or this so called modern science could of ever had. Now learning to live with my PN. Eat your Organic Vegetables and help someone who is less fortunate! MicTim

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@mictim I love it when you rant I learn so much !!

REPLY

In reply to mictim I have read your very eye opening "Rant" and I agree with you 100%. Right now I will choose just one area from which you spoke. That is doctor /patient relationship. These past 2 years have been very difficult for me both physically and mentally. I have a primary doctor who I think/did think highly of. However she did not pursue any of the issues I brought to her. She basically related most of my ailments to grieve after losing my husband. I bought this until recently when I am diagnosed with idiopathic (at this time) peripheral neuropathy. My leg, foot and toes are so swollen I can barely put weight on my left leg. Other issues coming to light also. She did refer my to a neurologist. I believe her thinking was to rule out neuropathy. Well after nerve conduction tests and physical exam it is found that yes I have it and the neurologist asks why no one had figured this out. I told her I did. I won't go into the ins and outs. Just that yesterday I was seen by my primary physician and for the 1st time I became angry with her. I told her she has not been listening to me at all and now have issues that are serious. Not just neuropathy. What really hurt was that this very lovely lady who could be a poster child for a beautiful doctor, became defensive with me. First time I have seen her lose some of her "Cool" Not professionally at all. I did not attack. I actually was in tears telling her I did not feel she is listening to me. She abruptly ended our 15 min visit. This is not unusual, but yesterday it really hurt. I needed compassion, not sympathy, but a soft ear. I counseled addicts and their families for 30 years before retiring. I know she is a "Doctor", not a counselor, but she could have put her doctor away for a few minutes and given me what I needed most which was some compassion. Thank you mictim for putting your wonderful rant out there. I so needed to vent that and now give it up before it eats me up.

REPLY
@summertime4

In reply to mictim I have read your very eye opening "Rant" and I agree with you 100%. Right now I will choose just one area from which you spoke. That is doctor /patient relationship. These past 2 years have been very difficult for me both physically and mentally. I have a primary doctor who I think/did think highly of. However she did not pursue any of the issues I brought to her. She basically related most of my ailments to grieve after losing my husband. I bought this until recently when I am diagnosed with idiopathic (at this time) peripheral neuropathy. My leg, foot and toes are so swollen I can barely put weight on my left leg. Other issues coming to light also. She did refer my to a neurologist. I believe her thinking was to rule out neuropathy. Well after nerve conduction tests and physical exam it is found that yes I have it and the neurologist asks why no one had figured this out. I told her I did. I won't go into the ins and outs. Just that yesterday I was seen by my primary physician and for the 1st time I became angry with her. I told her she has not been listening to me at all and now have issues that are serious. Not just neuropathy. What really hurt was that this very lovely lady who could be a poster child for a beautiful doctor, became defensive with me. First time I have seen her lose some of her "Cool" Not professionally at all. I did not attack. I actually was in tears telling her I did not feel she is listening to me. She abruptly ended our 15 min visit. This is not unusual, but yesterday it really hurt. I needed compassion, not sympathy, but a soft ear. I counseled addicts and their families for 30 years before retiring. I know she is a "Doctor", not a counselor, but she could have put her doctor away for a few minutes and given me what I needed most which was some compassion. Thank you mictim for putting your wonderful rant out there. I so needed to vent that and now give it up before it eats me up.

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@summertime4 Sometimes I think 99% of 'doctoring' is counseling. It's too bad when drs stand with their hand on the doorknob…

Liked by Retired Teacher

REPLY
@mictim

To Steeldove and my fellow PN friends:

What the article by Jane Brody really fired me up, what she stated is basically a reflection of a mostly American European problem called Big Pharma marketing engine and unfortunately slowly feeding (in my opinion) and moving towards a very constipated medical system.

If you as a person do not work and seek a better life medically you will not get any better. If you look back at our own medical history, as a nation there was a huge legal movement in the early 1900's when Rockefeller and others moved this nation towards the worship another god called "modern science" and natural medication was demonized and so were doctors and those who practiced a more natural approach.

As one example, in the early to mid 1900's, many advances were made with people who were battling Cancer, even with 4th stage Cancer were being treated with different approaches other than the new approved methods, many good physicians were jailed, professionally and publicly ridiculed and many lost their licenses. Many of those cancer patients became survivors as they lived many productive years afterwards with the then "illegal treatments".

With a few exceptions my friends with stage 4 Cancer including my very own son live only a about 8 to 9 months and a very miserable life using Chemo prescribed and sold directly by the doctor. That's true and correct sold directly from the doctor to the patient. Something is very wrong about that and a chemo drug is killing even good healthy cells!! Again from my viewpoint is that it would have been far better to live productive and live 6 to 7 months without any chemo drugs. That is a very high price to pay for two months!

Now there are some great breakthroughs like sulfur drugs and a few others, which were a great asset to modern medicine. If you look at today's prescription drugs they are a single molecule synthetic drug (the ones you are taking now here in the US and most used in Europe) and they are all are modeled directly from 100% natural flowers, roots and leaves. There is no other model to follow except our own God given Nature. There are a few exceptions to the like sulfur based drugs. The list is very short of non organic substances used in the medical field. Silver is the great exception to natural organics as it is very beneficial.

While writing this little rant, I looked at the medications that I take right now for my issues that I have, I must admit I personally take several synthetic medications. However, with that being said I am slowly moving ever towards a more natural approach and my blood work shows that it is working. If any physician would look at my blood work lab tests after the past 10 years and not knowing who I am or about my story, many would ask many questions about what is making the improvements, as there is a dramatic difference. In the past 3 years and I am stronger and better each month. Yes I still have SFN, however my Opioid (50mg) intake is 4 a day and nearing 3 a day instead of 6 a day and no more Lyrica or Gabapentin. As I stated before I am sure that for some Lyrica or Gabapentin and 100's of other big Pharma wonder medications and I am sure that some help those who suffer and I am very grateful for that. But the fact remains that there are many secondary issues using prescription drugs as they are are made from natural gas and oil based synthetics.

Anyway I have been using a topical pain lotion for several years now and after looking at the ingredients closely, it seems to to me, they bring more blood flow and oxygen to my feet. If anyone thinks that my SFN is rather a small issue after a fall accident, I could not walk expect on the edge of my feet for quite awhile. My wonderful wife had to help me around a lot and then after several years I was able, with using topical pain lotions and Opioids I was able to walk thru CostCo and back to the car. Now I an driving a car mainly during the daytime and back to a more physical and fairly productive life even at 72.

Many physicians are trying to bring a change for the better in their patients lives and do not have any other offering except what they have been taught in school, BTW nutrition is a one day subject for most of them. From my viewpoint, your food intake is the most important link you will have with nature. We now are eating mainly none live foods and foods with a lot of preservatives that come from a factory.

Many of us do not eat with others like in a family situation around a dinner table like I did as a kid, and most of us on this PN blog are older now. It seems to me that if we share food and fellowship more with others, we will have a much better life to live. My wife and I usually have a few friends over for dinner each and almost every week and each one shares in bringing the main course. We try and outreach to help others in this way and it is a lot of fun as well and brings a positive change as well to us and hopefully for them.

While traveling abroad which I used to do a lot, I have been treated by different medical approaches. One of the a main differences is they spent about 30-45 minutes with me instead of 5 minutes. The other grip that I have is this, I have noticed that many times the doctor already has their mind made up before seeing me and almost will not listen to what I have to say or how I am doing, they just write out and sign another script and say come back in a week if it does not work. That is very sad indeed!

The people of this country and a few physicians are slowly moving towards a more integrative approach using a fewer drugs along with a more natural organic lifestyle in what we eat. This is the approach that my wife and I have taken and one item worth noticing is this: when one uses a synthetic drug that are dozens of (some rather scary) warnings and many side effects. This is very rare to see using any type of organics. "Like almost none!!" It took many years for you to get where you are at right now and it will not go ways with a few pills.

Like others, I got very tired of treating the symptoms and not getting towards solving the main issue or problem. As I was so sick and nearly ready to give up with the pain from PN and I also suffer from age 30 severe daily migraine headaches, I finally found an exceptional physicians, one who after looking at many many doctors within 1 hour distance driving time. It has made a huge difference in my life and very beneficial difference for my wife as well.

You may possibly consider finding a physician who practices with a "Integrative" approach as we have and change your diet and start integrating a more Organic lifestyle and be ready to make some changes as it should be a great benefit to you.

As always, be at peace with the creator and read His Word as he changed this old atheists life and melted my heart of stone and in time brought me a wonderful caring wife (now of 22 years) and gave me far more abundant life than I or this so called modern science could of ever had. Now learning to live with my PN. Eat your Organic Vegetables and help someone who is less fortunate! MicTim

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Very true about your diet making an improvement on your condition. There are a few shows I watched on Netflix that I think everyone should watch. "What the Health", "Forks Over Knives", and "Cowspiracy". I also think another important one is "Big Bucks, Big Pharma: Marketing Disease and Pushing Drugs" that can be watched here: https://documentarylovers.com/film/big-bucks-big-pharma/

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To qball2019 and fellow PN Folks,

It would be very interesting and hopefully a revelation it would be for the modern west to stop watching TV for about 3 months and then re-look at the advertising one more time. It is all emotional based about people in misery, the rich and famous, murder, greed, a lot of fake or at least very slanted politics.

I before I retired my company did work for that the communication and adverting industries. From my prospective most are so very uninformed as a people group and the masses are vastly deceived and duped into thinking into a very narrow viewpoint. I turned off my TV many years ago and now do not even get any news any more, even on my phone. I know this is rather an extreme position, but a more peaceful life style. I guess my wife and I simply exited from the emotion and fear based input. I now enjoy a non advertising based places like Netflix, Prime and others.

I want to stay positive here on this blog, however many times when returning from abroad, at the airports here in American people look like M&Ms with legs. So I took some action a couple of years ago and lost 65lbs with a goal of 10 more. I think I mainly did this for my heath and less weight on my burning feet.

However, with that being said when I feel like I have too much pain, I always remember a man who again in India was begging for food. Who's whole world and existence was based on a piece of plywood with 4 little wheels. I remember the image with his little mouth looking upward at me, just wanting some food. He had no legs or hands he did have arm stumps that were covered in gray ducktape so he could propel himself along the roadway and it is still emotional for me to think of him and that image. But even with the pain and having SFN, "I am rich" in good health, very nice shelter, my best friend at my side and as much food as I want to eat with heating and air conditioning, two cars, flat screen etc………….. and most importantly a peaceful mind and at peace with The Creator.

I also remember farm road in a small village in India (probably 200k population) where I was walking trying to find a taxi of any sorts and finding away back to the train. Many middle aged Women were picking up the tree branches that have fallen from the wind and the very tall huge green trees over my head. The stack of branches were piled very deep and I thought how can they do that task as there were so many branches and so high a load for them to carry back to there homes. They were all so healthy looking and trim. We as a people group (including myself) are overweight, sit, eat and pay others for services. The women I talked about before were taking a God given natural resource and with a little effort they had warmth and a hot meal for her family.

Shows like you said like "What the Health", "Forks Over Knives", and "Cowspiracy", Big Bucks, Big Pharma: Marketing Disease and Pushing Drugs".

I will take time and look at some of them and they provide innformation, knowledge and a different prospective. It seems that I have been jabbering way too much the last few days, besides I need to see whats in the fridge. MicTim

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@mictim

To qball2019 and fellow PN Folks,

It would be very interesting and hopefully a revelation it would be for the modern west to stop watching TV for about 3 months and then re-look at the advertising one more time. It is all emotional based about people in misery, the rich and famous, murder, greed, a lot of fake or at least very slanted politics.

I before I retired my company did work for that the communication and adverting industries. From my prospective most are so very uninformed as a people group and the masses are vastly deceived and duped into thinking into a very narrow viewpoint. I turned off my TV many years ago and now do not even get any news any more, even on my phone. I know this is rather an extreme position, but a more peaceful life style. I guess my wife and I simply exited from the emotion and fear based input. I now enjoy a non advertising based places like Netflix, Prime and others.

I want to stay positive here on this blog, however many times when returning from abroad, at the airports here in American people look like M&Ms with legs. So I took some action a couple of years ago and lost 65lbs with a goal of 10 more. I think I mainly did this for my heath and less weight on my burning feet.

However, with that being said when I feel like I have too much pain, I always remember a man who again in India was begging for food. Who's whole world and existence was based on a piece of plywood with 4 little wheels. I remember the image with his little mouth looking upward at me, just wanting some food. He had no legs or hands he did have arm stumps that were covered in gray ducktape so he could propel himself along the roadway and it is still emotional for me to think of him and that image. But even with the pain and having SFN, "I am rich" in good health, very nice shelter, my best friend at my side and as much food as I want to eat with heating and air conditioning, two cars, flat screen etc………….. and most importantly a peaceful mind and at peace with The Creator.

I also remember farm road in a small village in India (probably 200k population) where I was walking trying to find a taxi of any sorts and finding away back to the train. Many middle aged Women were picking up the tree branches that have fallen from the wind and the very tall huge green trees over my head. The stack of branches were piled very deep and I thought how can they do that task as there were so many branches and so high a load for them to carry back to there homes. They were all so healthy looking and trim. We as a people group (including myself) are overweight, sit, eat and pay others for services. The women I talked about before were taking a God given natural resource and with a little effort they had warmth and a hot meal for her family.

Shows like you said like "What the Health", "Forks Over Knives", and "Cowspiracy", Big Bucks, Big Pharma: Marketing Disease and Pushing Drugs".

I will take time and look at some of them and they provide innformation, knowledge and a different prospective. It seems that I have been jabbering way too much the last few days, besides I need to see whats in the fridge. MicTim

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@mictim….turned the TV off 30 years ago. With 6 kids, felt it contributed nothing to their wellbeing, in fact did harm. With no tv, we had the blessing of watching artists emerge. We have singers and a composer of 16th century style polyphany/chant , musicians, two portrait artists, two graphic design artists, one interior designer, one animation artist and one accomplished photographer. Yes, a couple have 2 areas they shine in. No tv, homeschooling, and a moral compass is credited for this. They are all healthy, stable adults with stable families of their own. If we stop entertaining people, they will learn to entertain themselves. If given an example of healthy lifestyle, they will adopt that for their own. Good for you. You took the initiative and are reaping the rewards!

Having said all that, despite our best efforts life throws curveballs. Joint replacements, stroke, blood clots, aneurysm, neuropathy. But….having lived a healthy life gives you strengths to push through, difficult as things may be, we have a well of wellbeing to draw from. Nothing is easy, pain is hard to bear, but the brain knows what wellness is and it propels us towards it every time we are knocked down. If we never experience health, we hardly know what to do with physical trials.

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To jmjlove and PN friends: 30 years ago! wow!! Well that is rare and a very good report on your family. Made my day! Keep it up moving forward. It is far better than the other choice of just giving up. Keep helping others. MicTim

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I had an ACDF surgery in 2014 Level C5-C7, after the surgery I had some improvement, at least the headaches almost went away, but I star having flaring nerve stabbing pain in my legs, my left side was not strong and I have more difficulties to do anything ( until now), Then I start having stabbing pain in the area where I had the surgery, plus tingling and burning sensation in my back and as well in my legs. Because of the pain in my neck, I was recommended to have a breast reduction surgery so I did the last year 2018, it helps in some way, but I have to mention that before the surgery my left arm lost considerable strength and my elbow was hurting in both arms. So, two months after the surgery, my both hand start getting nums and hurting, no strength enough to lift a cup of coffee or open a water bottle, every night my hands are numb, and my fingers aching and stabbing pain in the palm of my hands and my middle finger swells up with enough pain and my arm got weaker than before. I have the same symptoms in my feet and my neck hurts some days that I can't do much and the titanium plate and/or screws, causes pressure in my throat and hurt and it is hard to talk I went through many MRI, CT scans, RX and my surgeon said everything is ok. I'm living or I should say; I'm not living because the pain makes me miserable and I can not have a normal life and I feel afraid to get paralyzed because of nerve damage I don't what to do. I hope every one of you all stays better today than yesterday and tomorrow better than today, a blessing for you all. And Please some advises it will help…

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@lourdes27

I had an ACDF surgery in 2014 Level C5-C7, after the surgery I had some improvement, at least the headaches almost went away, but I star having flaring nerve stabbing pain in my legs, my left side was not strong and I have more difficulties to do anything ( until now), Then I start having stabbing pain in the area where I had the surgery, plus tingling and burning sensation in my back and as well in my legs. Because of the pain in my neck, I was recommended to have a breast reduction surgery so I did the last year 2018, it helps in some way, but I have to mention that before the surgery my left arm lost considerable strength and my elbow was hurting in both arms. So, two months after the surgery, my both hand start getting nums and hurting, no strength enough to lift a cup of coffee or open a water bottle, every night my hands are numb, and my fingers aching and stabbing pain in the palm of my hands and my middle finger swells up with enough pain and my arm got weaker than before. I have the same symptoms in my feet and my neck hurts some days that I can't do much and the titanium plate and/or screws, causes pressure in my throat and hurt and it is hard to talk I went through many MRI, CT scans, RX and my surgeon said everything is ok. I'm living or I should say; I'm not living because the pain makes me miserable and I can not have a normal life and I feel afraid to get paralyzed because of nerve damage I don't what to do. I hope every one of you all stays better today than yesterday and tomorrow better than today, a blessing for you all. And Please some advises it will help…

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Hello @lourdes27, welcome to Connect. It sounds like you have a lot on your plate to deal with. You are not alone. There are a lot of others here that I'm hoping can share their experience and what has helped them. There is a discussion on Connect that I think you might find helpful and offer some hope for a more normal life. You might want to read through it and meet others who are also struggling with pain.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@jenniferhunter, @lioness and @grandmar may be able to offer some suggestions. Which symptom is the hardest for you on a daily basis?

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@lourdes27

I had an ACDF surgery in 2014 Level C5-C7, after the surgery I had some improvement, at least the headaches almost went away, but I star having flaring nerve stabbing pain in my legs, my left side was not strong and I have more difficulties to do anything ( until now), Then I start having stabbing pain in the area where I had the surgery, plus tingling and burning sensation in my back and as well in my legs. Because of the pain in my neck, I was recommended to have a breast reduction surgery so I did the last year 2018, it helps in some way, but I have to mention that before the surgery my left arm lost considerable strength and my elbow was hurting in both arms. So, two months after the surgery, my both hand start getting nums and hurting, no strength enough to lift a cup of coffee or open a water bottle, every night my hands are numb, and my fingers aching and stabbing pain in the palm of my hands and my middle finger swells up with enough pain and my arm got weaker than before. I have the same symptoms in my feet and my neck hurts some days that I can't do much and the titanium plate and/or screws, causes pressure in my throat and hurt and it is hard to talk I went through many MRI, CT scans, RX and my surgeon said everything is ok. I'm living or I should say; I'm not living because the pain makes me miserable and I can not have a normal life and I feel afraid to get paralyzed because of nerve damage I don't what to do. I hope every one of you all stays better today than yesterday and tomorrow better than today, a blessing for you all. And Please some advises it will help…

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@lourdes27 I can empathize with your situation. The symptoms you are describing are very similar to my own prior to my spine surgery which was a fusion at C5/C6. I had spinal cord compression with a ruptured disc and bone spurs compressing my spinal cord, and it generated pain all over my body. I had surgery at Mayo that corrected all of that for me. I also have thoracic outlet syndrome which I had prior to spine surgery, and TOS does cause tingling in hands and compromised circulation to the arms and hands. My hands used to turn blue and cold.

It's good that you have followed up with your surgeon, but since you don't have an answer, you might want to consider another opinion with a spine specialist. It sounds like he feels he has done his job satisfactorily. I don't think he has an answer and he's not looking for issues outside of his procedure. I think his focus is his success… and not a possible failure on his part. I do know that surgical scar tissue creates tightness in the fascial tissue that can restrict movement and proper body alignment and cause a lot of pain. A lot of doctors don't consider that or understand the fascial system. Only in the last few years have they made a "new discovery" and called it the "Interstitium", but fascial work has been around for 40 years. You have had a few surgeries in the neck and chest and if all of that is tight, it will pull and put pressure on your neck. I had done a lot of myofascial release to treat my TOS (before my surgery) and also after in my rehab. I still go to physical therapy for TOS now. I can feel the fascia pull all the way from my neck and jaw, through my chest and hip, and all the way down to my ankle, and I can also feel when that tissue releases while my therapist is working on me.

Has any imaging been done on your thoracic and lumbar spine? What I do know about spinal cord compression is it can cause pain anywhere in the body below the level of compression. Mine was in my neck, and it generated pain in my legs and feet, and really all over my body. Hardware can become loose or dislodged and cause an immune response if you are sensitive to the materials. I was worried about that, and had a fusion without hardware. The only implant was a bone graft, and I stayed in a hard collar until it fused which was 4 months.

Other possibilities for the loss of strength in your hands could be a peripheral nerve entrapment problem like carpal tunnel. The nerve compressions anywhere along the path of the nerve can generate pain, and sometimes problems like this can be missed if they are just focused on the spine. A neurologist should be able to determine where nerves may possibly be compressed. I did have carpal tunnel syndrome and surgery for that, and they missed the TOS which had overlapping symptoms. I also developed a spine problem, so I had multiple places for nerve compressions complicating everything at the same time. That is really why I came to Mayo, because numerous doctors missed understanding the complete problems. Mayo does a good job of integrating multiple specialties into understanding the whole problem.

You might want to consult a physical therapist who does MFR work for an evaluation as well as a neurologist. Perhaps that can provide a direction. It may be that physical therapy and MFR can help a lot if this is due to fascial restrictions, and my hunch is that is a factor because of your surgical history. Fascial problems can cause misalignment of the spine or joints that can happen anywhere in the body. If it is something like sensitivity caused by an implant, there are treatments for that by doctors in the environmental or functional medical fields.

Here are some links and a discussion about MFR with a lot of information.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.aaemonline.org/find.php
https://www.ehcd.com/implant-services/
https://trainingandrehabilitation.com/multifactorial-causes-solutions-chronic-neck-pain/?fbclid=IwAR1zHfsnu0UMK7a8N6F9_WA8Q1cyELFhDvIcu3pMI5-qGLOGJnzXvLZTD-U
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
https://trainingandrehabilitation.com/true-solution-lower-back-
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

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