Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

In the New York Times last week, there was an interesting article on Gabapentinoids, noting, among other things, that there is little evidence that they work for pain, and consternation as to why doctors prescribed them so frequently. See https://www.nytimes.com/2019/05/20/well/live/millions-take-gabapentin-for-pain-but-theres-scant-evidence-it-works.html

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Hi @arnrob — I thought I would answer your private message here to see if you get an email notification. When you get the email notification, click the View & Reply button in the email message. That should take you to this message in the discussion.

You mentioned you signed up again about 3 times? I'm pretty sure you are not being blocked by Connect, and yes, we want you to post! We learn from each other. Are you clicking the View & Reply button or are you just clicking the reply in your email program?

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@johnbishop

Hi @arnrob — I thought I would answer your private message here to see if you get an email notification. When you get the email notification, click the View & Reply button in the email message. That should take you to this message in the discussion.

You mentioned you signed up again about 3 times? I'm pretty sure you are not being blocked by Connect, and yes, we want you to post! We learn from each other. Are you clicking the View & Reply button or are you just clicking the reply in your email program?

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Hi @arnrob, if you continue to have technical difficulties, please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/
I can help. – Colleen

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@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome.  I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.

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I have had peripheral neuropathy for 20 years and it is terrible. Sharp pains in toes and sides of feet. I take 3,600mg of gabapentin a day plus duloxetine (60mg) in the morning and amitriptyline (25mg) at night. I still have pain. Use CBD (500mg) cream at night. I also have Raynaud's. Have not seen a Rheumatologist. I am just hearing about statin drugs being a side effect for neuropathy. i have taken atorvastatin for a very long time. Can anyone give me more information about statin drugs and Raynaud's contributing to neuropathy?

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Hi @annoranna
I have the same situation as you do, thankfully not for as long.
I stopped taking statins about a year ago.
There is some scientific information that statins have some relationship to neuropathy, but the evidence is not very good. So, you have to guess whether or not to take them. If you do, you may may be risking making your neuropathy worse. If you don't you may be at a higher risk for stroke or heart attacks.
There appears to be a relationshiop between Reynaud's and PN.
Do you have primary or secondary Reynaud's? Do you have Reynaud's phenomena or disease? Do your fingers and/or toes actually go through the color changes (white to blue to red)?
PN itself can cause cold intolerance in the extremities, because the nerves that control dilatation of the arteries are not working correctly.
Good luck!

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Hello @annoranna, Welcome to Connect. I also have had peripheral neuropathy for over 20 years but I only have numbness for symptoms. There are also other related discussions that you may want to join to meet other members who have discussed statins and neuropathy. Can you share what symptoms or condition is being treated by atorvastatin?

> Groups > Neuropathy > Statins and peripheral neuropathy
https://connect.mayoclinic.org/discussion/statins-and-peripheral-neuropathy/
> Groups > Neuropathy > Statins cause peripheral neuropathy?
https://connect.mayoclinic.org/discussion/statins-cause-peripheral-neuropathy/
> Groups > Heart & Blood Health > STATINS – The Good the Bad and the Ugly.
https://connect.mayoclinic.org/discussion/statins-the-good-the-bad-and-the-ugly/

Here are some sites that provide information about statins:

Statin side effects: Weigh the benefits and risks
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013
The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

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@johnbishop

Hello @annoranna, Welcome to Connect. I also have had peripheral neuropathy for over 20 years but I only have numbness for symptoms. There are also other related discussions that you may want to join to meet other members who have discussed statins and neuropathy. Can you share what symptoms or condition is being treated by atorvastatin?

> Groups > Neuropathy > Statins and peripheral neuropathy
https://connect.mayoclinic.org/discussion/statins-and-peripheral-neuropathy/
> Groups > Neuropathy > Statins cause peripheral neuropathy?
https://connect.mayoclinic.org/discussion/statins-cause-peripheral-neuropathy/
> Groups > Heart & Blood Health > STATINS – The Good the Bad and the Ugly.
https://connect.mayoclinic.org/discussion/statins-the-good-the-bad-and-the-ugly/

Here are some sites that provide information about statins:

Statin side effects: Weigh the benefits and risks
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013
The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

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High cholesterol

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@jeffrapp

Hi @annoranna
I have the same situation as you do, thankfully not for as long.
I stopped taking statins about a year ago.
There is some scientific information that statins have some relationship to neuropathy, but the evidence is not very good. So, you have to guess whether or not to take them. If you do, you may may be risking making your neuropathy worse. If you don't you may be at a higher risk for stroke or heart attacks.
There appears to be a relationshiop between Reynaud's and PN.
Do you have primary or secondary Reynaud's? Do you have Reynaud's phenomena or disease? Do your fingers and/or toes actually go through the color changes (white to blue to red)?
PN itself can cause cold intolerance in the extremities, because the nerves that control dilatation of the arteries are not working correctly.
Good luck!

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My ex so-called Cardiologist prescribed Crestor for my so-called high Cholesterol ( LDL101) for 8 years resulting in a Peripheral Neuropathy diagnosis. If you research the Internet you will find there is a DEFINITE link between Statins and Neuropathy IN SOME PEOPLE. You will also find there is no definitive cure for neuropathy be it pulsating laser, electrical stimulation, injections, medication, etc. That's why you won't find a reputable medical site ever state that there is one. But they'll try many different ways to work around the question "Is there a cure for Neuropathy" without the simple "yes" answer.

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@elizm

In the New York Times last week, there was an interesting article on Gabapentinoids, noting, among other things, that there is little evidence that they work for pain, and consternation as to why doctors prescribed them so frequently. See https://www.nytimes.com/2019/05/20/well/live/millions-take-gabapentin-for-pain-but-theres-scant-evidence-it-works.html

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I take gabapentin; my doctor explained that it's not a pain-killer, it's an anti-seizure medication, it calms down my nervous system so that my nervous system stops sending out false pain messages. When my body feels like it's on fire but there is no fire anywhere around, my nervous system is sending me a false pain message. It feels like real pain to me. Pain killers will kill any pain anywhere in the body, gabapentin won't do that, it only does one thing: it calms the nervous system, which helps epileptics and people with neuropathy, no one else that I'm aware of. Peggy

Liked by newzbug

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It's hard to be active when you are in pain, intermittent or constant. I have been trying to get about more often and the pain in my feet seems a bit better. I am not yet at the stage of taking gabapentin but will keep that in mind. Part of my neuropathy is that the nerves sometimes are not receiving any stimulation. This might explain the pain in my shoulders that I don't notice until it's really sore. I have some balance issues and am trying to walk more. I miss walking, but I have fallen in the past and that scares me. I am only 60 and don't want to end up in the hospital due to a fall. I take lots of calcium for my bones and know that walking will help strengthen that too. Just had to vent to those who understand the struggle daily. My husband is blessed not to have this. All my best to those who struggle with pain, getting around and just plain all the stuff that comes along with the neuropathy. Thanks for being here to listen to my ranting.

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if you consider takeing the medication just realize a lot of doctors will push up the dosage the higher the dosage the more likely for kidney failure. this is not a long term medication but doctors like to make it long term

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@newzbug

It's hard to be active when you are in pain, intermittent or constant. I have been trying to get about more often and the pain in my feet seems a bit better. I am not yet at the stage of taking gabapentin but will keep that in mind. Part of my neuropathy is that the nerves sometimes are not receiving any stimulation. This might explain the pain in my shoulders that I don't notice until it's really sore. I have some balance issues and am trying to walk more. I miss walking, but I have fallen in the past and that scares me. I am only 60 and don't want to end up in the hospital due to a fall. I take lots of calcium for my bones and know that walking will help strengthen that too. Just had to vent to those who understand the struggle daily. My husband is blessed not to have this. All my best to those who struggle with pain, getting around and just plain all the stuff that comes along with the neuropathy. Thanks for being here to listen to my ranting.

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Hi @newzbug. I understand your dilemma. It is very hard to deal with, kind of a catch 22 situation, but perhaps more exercise will help the neuropathy. Have you tried a stationary exercise machine like a bicycle to keep active? I too have neuropathy and balance issues. I am very careful not to fall. I have tried outpatient therapy where I exercised with the stationary bicycle for ten minutes during each therapy session and found it helpful. The physical therapist worked with me to walk using a quad cane. At first it was not easy. I now walk outside my home on uneven surfaces such as the lawn and gravel driveway. I find the cane very helpful for my walking. My next plan is to order home care therapy, when it gets cooler, to do more walking outside for balance. The home care services are provided with no cost if medicare is the primary medical insurance. There is NO deductible and NO copay regardless of residence in the USA. As for the pain, I believe it has decreased through my efforts in diet and exercise. It now has been at least 2 weeks since I have been on a caffeine free diet. I know it is difficult to do without certain foods but the gains are more important to me especially at night. The burning pain seems to be less intense. I am not on ANY medications and very rarely have been on antibiotics for an infection. I do take supplements. I am about the same age and have learned different methods in order to do things again. I am not giving up but instead learning through trial and error for what is best. I wish you well in finding what is best for you.

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@bethmartin150

if you consider takeing the medication just realize a lot of doctors will push up the dosage the higher the dosage the more likely for kidney failure. this is not a long term medication but doctors like to make it long term

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Hello @bethmartin150 — Welcome to Connect. Thank you for joining in the discussion. Are you able to share a little more about your diagnosis and what you find that helps you?

I also have neuropathy. My diagnosis is idiopathic small fiber peripheral neuropathy. I shared my story and what helps me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@newzbug, I think it's great that you are still trying to stay active even when you are having some pain. I think movement helps more than it hurts. The Foundation for Peripheral Neuropathy has some good information on exercises and therapy here:
https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

They also have a fairly comprehensive list of Peripheral Neuropathy Pain Management & Treatments here:
https://www.foundationforpn.org/what-is-peripheral-neuropathy/treatments/

Hoping all my Connect PN cyber friends are having a pain free day.

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@newzbug

It's hard to be active when you are in pain, intermittent or constant. I have been trying to get about more often and the pain in my feet seems a bit better. I am not yet at the stage of taking gabapentin but will keep that in mind. Part of my neuropathy is that the nerves sometimes are not receiving any stimulation. This might explain the pain in my shoulders that I don't notice until it's really sore. I have some balance issues and am trying to walk more. I miss walking, but I have fallen in the past and that scares me. I am only 60 and don't want to end up in the hospital due to a fall. I take lots of calcium for my bones and know that walking will help strengthen that too. Just had to vent to those who understand the struggle daily. My husband is blessed not to have this. All my best to those who struggle with pain, getting around and just plain all the stuff that comes along with the neuropathy. Thanks for being here to listen to my ranting.

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@newzbug @johnbishop
Dear Newzbug… All of us here can empathize completely with your struggle, and John has provided some excellent resources for your attention.

I have chemo-induced PN in my feet, legs and hands which, in my case, is similar to small fiber PN. Daily exercise is particularly important in staying mobile. My choice is a mile on a treadmill each day, plus various stretches and exercises given to me by a physical therapist. This will be life-long condition for me so I have made it a habit.

Pain/burning triggers for me include alcohol, turmeric, pepper, and spicy foods… and sitting or standing too long.

As I am unable to tolerate pharmaceuticals (like gabanoids, amitripyline, etc.) and stay clear of NSAIDs, I did find some things which have been helpful. (Please note: most of us have tried every product and procedure we have come across, and, if we're lucky, we have a few things which are comforting to us.) For my relief, it's mainly Palmitoylethanimide (PEA) — 800-1,200 mg/day which has no known side effects nor drug interactions; and Topricin's Fibro Cream, both of which I buy on Amazon.

Hang in there and keep moving.

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@avmcbellar

Hi @newzbug. I understand your dilemma. It is very hard to deal with, kind of a catch 22 situation, but perhaps more exercise will help the neuropathy. Have you tried a stationary exercise machine like a bicycle to keep active? I too have neuropathy and balance issues. I am very careful not to fall. I have tried outpatient therapy where I exercised with the stationary bicycle for ten minutes during each therapy session and found it helpful. The physical therapist worked with me to walk using a quad cane. At first it was not easy. I now walk outside my home on uneven surfaces such as the lawn and gravel driveway. I find the cane very helpful for my walking. My next plan is to order home care therapy, when it gets cooler, to do more walking outside for balance. The home care services are provided with no cost if medicare is the primary medical insurance. There is NO deductible and NO copay regardless of residence in the USA. As for the pain, I believe it has decreased through my efforts in diet and exercise. It now has been at least 2 weeks since I have been on a caffeine free diet. I know it is difficult to do without certain foods but the gains are more important to me especially at night. The burning pain seems to be less intense. I am not on ANY medications and very rarely have been on antibiotics for an infection. I do take supplements. I am about the same age and have learned different methods in order to do things again. I am not giving up but instead learning through trial and error for what is best. I wish you well in finding what is best for you.

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Hi friends with balance and walking issues… I wouldn’t be as mobile today without my leg braces, which I’ve worn now for about 4 years. While they are clunky and can be hot in warm weather, I’m able to walk quite a distance with good balance and less pain and fatigue. To save strength I do get wheelchair assistance in airports, which makes a huge difference.. I’ve reported this in earlier posts so if you missed it or want info I’m happy to share info via text or email if John B oks it.

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