Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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

Jump to this post

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

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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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