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?

@summertime4

chatty Thank you. I have my first visit with the neurologist today. I believe the neurologist is the doctor who treats neuropathy. I don't know who does what anymore. There is good news. I had a Echo done on my heart this week. They were looking at the possibility of a heart problem which may be causing the fluid retention in my leg and foot. This awesome doctor called me back the same day to tell me my heart is strong and not the reason for fluid retention. Maybe the vitamin D in the sunshine with help with my depression. I will keep you posted. Sending prayers back.

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I do MFR and reiki it helps me with the depression. Luckily MFR was covered by insurance the Reiki is not so can get expensive. I want to start meditation but I’m so uptight trying to conquer this pain , I know that sounds funny but would have a hard time sitting still right now on my own . I am grateful for this group I had no idea so many people having these issue ‘s . Sometimes I just read the conversations and dont’t add In but at night when I’m in pain It helps to read them and it comforts me .

Liked by Chris Trout

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Hi John and group Returned from my 1st neurologist app. Really liked this young female doctor. Yes some of this awful swelling is Gapapentin, although not believing it was caused by it but can add to it. Working me off the Gapapentin and changing to Topamax ???. She believes there are underlying causes for the edema, mostly on my left side. She also will be delving into the possible cause of the nerve pain and neuropathy. First blood tests and then MRI's if needed of pelvis and back ad also checking on lymph damage or sickness. I have not had cancer or removal of lymph nodes, but could have issues. She feels there are underlying reasons for the nerve pain and edema. I have said this all along so at least our pages are similar. She ordered blood tests to look for autoimmune disease, Lyme disease, B12 and folate. These tests have been indicated to be performed when I read about neuropathy. So again a plus. I return to her in 4 weeks. No other instructions for now. Of course I am concerned about taking Topamax, but will certainly give it a try and hope some swelling will be eliminated. The pain is a do the best I can right now and she stated there is no fixing a damaged nerve, but if we can find a cause we have more options. Tomorrow I see my primary care. I am following through and admit I am concerned as to what might be the cause of my issues. Please continue to hang in with me.

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@chattty

Hi Jeanray. I’m sorry about your health issues from one to another sufferer.I'm on gabapentin only because it is cheaper. I would like to be on lyrica because ,
Most docs I have seen recommend it first. So,I guess I’m in second best. lol. I’ve heard it’s great for restless leg. 🤗

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Hello, I thought you would like to know that the generic for Lyrica is supposed to become available in July 2019. It will be welcome for many of us who are taking Lyrica now.

Liked by steeldove, bruce2666

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@dancermurphy

I do MFR and reiki it helps me with the depression. Luckily MFR was covered by insurance the Reiki is not so can get expensive. I want to start meditation but I’m so uptight trying to conquer this pain , I know that sounds funny but would have a hard time sitting still right now on my own . I am grateful for this group I had no idea so many people having these issue ‘s . Sometimes I just read the conversations and dont’t add In but at night when I’m in pain It helps to read them and it comforts me .

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@dancermurphy Pain Management at Mayo suggested abdominal breathing, 10 minutes, 3 times a day. A good start until you can sit for meditation.

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@steeldove

@dancermurphy Pain Management at Mayo suggested abdominal breathing, 10 minutes, 3 times a day. A good start until you can sit for meditation.

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Anyone know what abdominal breathing is?

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@margottaylor

Anyone know what abdominal breathing is?

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@margottaylor I think abdominal breathing is also called diaphragmatic breathing. Here's some information on how to do it:

https://my.clevelandclinic.org/health/articles/9445-diaphragmatic-breathinghragmatic

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@patrick17

Hello, I thought you would like to know that the generic for Lyrica is supposed to become available in July 2019. It will be welcome for many of us who are taking Lyrica now.

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Thank you I’m very excited now.

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@dancermurphy

I do MFR and reiki it helps me with the depression. Luckily MFR was covered by insurance the Reiki is not so can get expensive. I want to start meditation but I’m so uptight trying to conquer this pain , I know that sounds funny but would have a hard time sitting still right now on my own . I am grateful for this group I had no idea so many people having these issue ‘s . Sometimes I just read the conversations and dont’t add In but at night when I’m in pain It helps to read them and it comforts me .

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@dancermurphy Good evening…..You have chosen some good practices for helping you to get control of the pain, especially with MFR. Depression is hard to battle without some help. Do you also have what you would call "anxiety"? You mention that you do not want to start meditation because you cannot sit still. Have you ever done walking meditation, perhaps through a park or public garden? This type of meditation was developed by Thich Nhat Hanh? He is a Vietnamese monk who brought meditation and mindfulness to so many people in France and in the US. When we do walking meditation, we stroll through a garden. When a flower or bird or plant comes into view, we can stop and focus all of our attention on that object. When our mind begins to wander, then we walk a bit until another element catches our eye and try again. Even if you just walk and count to 4 on the in breath and again to 4 on the out breath you will be meditating and able to have some freedom from the depressive thoughts.

Sometimes, if my hands, wrists, and arms are in pain, I lie on the floor and melt into the carpet. Then I just focus on the breath…or you can watch the fan go round and round. The whole purpose is to give your mind a break from the "heavy lifting" it is doing to deal with depression, pain and/or anxiety. I can always tell on a day when an appointment or other activity forces me to omit my meditation. I become a bit frenetic and my pain increases.

There are a number of meditation programs online. Although I have written my own guided meditation, I also use Calm. There are retreats and workshops that suggest you lie or stand as necessary. When you are comfortable with the technique, you may want to join a sangha or meditation group. We meet every Thursday evening for 90 minutes….starting and ending with a timed meditation. In between, we discuss reflections on a book we are reading together. Our sangha of 8 ladies has been meeting every Thursday for 4 years. To put it mildly, we have each other's backs. The bond is astounding. Wishing you much success as you achieve a pain-free day. Please let us know about your journey. We can all learn from each other. Chris

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@johnbishop

Hi @chattty, welcome to Connect. I also have neuropathy but only have the associated numbness and no pain. I have no medical training or background but do think that when there is a risk with some treatments and the patient has to be involved in the decision whether to have the treatment or not. I'm sorry that your neuropathy may have be caused by the Levaquin treatment for pneumonia. It's hard to know the outcome had you not had the treatment. There is a lot of evidence that supports your thinking of what caused your neuropathy.

FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent
nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection (PDF)
https://www.fda.gov/media/86575/download

Are you on any treatments or therapy to help with the pain from your neuropathy? I have idiopathic small fiber peripheral neuropathy. You can read my story and what has helped me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hope you find some answers.

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Thank you for the welcome and the links.i read up on the FB page. Good for you! I’m very happy it is helping you! Truly. I’m scared of that. I’m opioids, lots of gabapentin, and tizanidine. I’m afraid of the withdrawals. I’m going to get off the gabapentin because of the twitches in my brain and body that make me fall to the ground. I went through some withdrawals in July on my birthday to be exact it was horrible. I don’t have money or the patience for what that website is suggesting. It looks very expensive and tedious. I’m glad it works for you. Right now I’m not up for it. Maybe in the future though.

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@artscaping

@dancermurphy Good evening…..You have chosen some good practices for helping you to get control of the pain, especially with MFR. Depression is hard to battle without some help. Do you also have what you would call "anxiety"? You mention that you do not want to start meditation because you cannot sit still. Have you ever done walking meditation, perhaps through a park or public garden? This type of meditation was developed by Thich Nhat Hanh? He is a Vietnamese monk who brought meditation and mindfulness to so many people in France and in the US. When we do walking meditation, we stroll through a garden. When a flower or bird or plant comes into view, we can stop and focus all of our attention on that object. When our mind begins to wander, then we walk a bit until another element catches our eye and try again. Even if you just walk and count to 4 on the in breath and again to 4 on the out breath you will be meditating and able to have some freedom from the depressive thoughts.

Sometimes, if my hands, wrists, and arms are in pain, I lie on the floor and melt into the carpet. Then I just focus on the breath…or you can watch the fan go round and round. The whole purpose is to give your mind a break from the "heavy lifting" it is doing to deal with depression, pain and/or anxiety. I can always tell on a day when an appointment or other activity forces me to omit my meditation. I become a bit frenetic and my pain increases.

There are a number of meditation programs online. Although I have written my own guided meditation, I also use Calm. There are retreats and workshops that suggest you lie or stand as necessary. When you are comfortable with the technique, you may want to join a sangha or meditation group. We meet every Thursday evening for 90 minutes….starting and ending with a timed meditation. In between, we discuss reflections on a book we are reading together. Our sangha of 8 ladies has been meeting every Thursday for 4 years. To put it mildly, we have each other's backs. The bond is astounding. Wishing you much success as you achieve a pain-free day. Please let us know about your journey. We can all learn from each other. Chris

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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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@johnbishop

@margottaylor I think abdominal breathing is also called diaphragmatic breathing. Here's some information on how to do it:

https://my.clevelandclinic.org/health/articles/9445-diaphragmatic-breathinghragmatic

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

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

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@johnbishop

@margottaylor I think abdominal breathing is also called diaphragmatic breathing. Here's some information on how to do it:

https://my.clevelandclinic.org/health/articles/9445-diaphragmatic-breathinghragmatic

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

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@margottaylor

Anyone know what abdominal breathing is?

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@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.

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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
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