Living with Neuropathy - Welcome to the group

@johnbishop
Good Morning,
I was actually taught this by my therapist for anxiety relief.
I use it regularly when having my bp checked.
Ronnie

You are welcome. And you are on your way. Be safe and have some joy today.

Thanks John. It reminds me of some of my yoga breathing.

@margottaylor Diaphragmatic breathing, or deep breathing, is breathing that is done by contracting the diaphragm, a muscle located horizontally between the thoracic cavity and abdominal cavity. Air enters the lungs, the chest does not rise and the belly expands during this type of breathing.

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

@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 !!

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.

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

@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

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