Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@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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A Mayo neurologist explained my symptoms this way. Pain/numbness, will eventually lead to numbness only once the nerve actually dies. He said there is no treatment for the numbness.

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@bobsconnect

I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.

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Too bad they cannot go after those who abuse the law rather than the ones just trying to relieve their pain. I used to take Opioids. One month I was going to be on vacation and out of state. I tried to get my script filled two days early to no avail. I finally had to change my travel plans so I would be near a drug store somewhere near where I was traveling. I only had to drive 200 miles from where our plans initially were for us to be staying. Inconvenienced? Heck yes!

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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 was given the same speech from my Mayo neurologist. The current drugs being prescribed for pain for PN do nothing to repair the nerves, they only trick the brain into masking the pain but they can’t do anything for the numbness. I’ve been struggling 15+ years and watching the numbness start in my toes and work it’s way up to just below my knees. This past March I saw a Mayo neurologist and was diagnosed with SFPN. He basically said nothing they can really do but it should progress slowly and to let them know if something changes. Stupid on my part waiting so long to see a neurologist. When I first told my doctors about the numb toes and bottoms of my feet he told me that they can run some tests on the nerves. So I asked him what if they find I have damaged nerves, what can you do? Answer was nothing so I decided not to have the tests done.

Since March I have been doing a lot of research on my own starting with reading a book by Dr Terry Wahls – http://terrywahls.com/about/about-terry-wahls/. There are a lot of scams with supplements and treatments for PN that play on the suffering with the folk that have it. So you really have to be careful. I found a closed Facebook group – “The Solutions to Peripheral Neuropathy” that provides a list of high quality supplements that have helped a lot of people with PN. I have been taking the supplements for about 2 months now and have noticed the numbness has been reduced some. Where it was just below my knees in both legs, it is now a little above my ankles and my feet feel better. Others in the group found that they no longer need to take the gabapentin and other pain relief drugs. It remains to be seen if it will completely get rid of my numbness but any improvement gives me hope. It may not work for everyone but it’s certainly worth a shot if you are in dire pain and the current treatment is not working. I ran the list by my Mayo doctor and she sent it to the pharmacist who gave me some conflicting feedback on dosages of one of one of the supplements omega 3 oils. His assessment conflicted with what I found on Mayo’s website – http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372. You should always run supplements by your doctor and discuss it with them.

There is hope so never give up and keep doing your own research. Good luck!

Liked by mari, amkaloha

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Thanks to all. and yes @azjulie I have found that by rubbing a compound the Dr., gave me and wearing any kind of glove but the ones I have all the fingers are out and the rest of the glove covers the hand. It does help a little bit.

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@tbeckys

Hi, my name is Terry and I’ve had neuropathy in both feet and hands and half way up calves of legs for 5 + years.
Is there any things I can try for it. Thanks for listening.

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Yes, I have diabetes. I’ve tried Lyrica, Neurotin and Savella none of which I can take due to severe swelling in extremities.Have an spot., to c a neurologist.

Liked by portsin

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Has anyone joined the Peripheral Neurlogy site and is it worth the $30 they charge to join?

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Hi @tbeckys, what Peripheral Neurology site are you referring to? Is it The Foundation for Peripheral Neuropathy’s website – https://www.foundationforpn.org? I did join last year but I’m not sure of the actual value it has as I think a lot of the information is available on other sites. I think they use membership as a way to raise donation money for research. You receive a regular newsletter – monthly or bi-monthly and access to more of their documents/videos. You can still view a lot of their information without a membership.

Mayo Clinic has quite a lot of information available on their site – http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944.
Also there is a YouTube channel for the Neuropathy Association that has a lot interesting/informative videos on Neuropathy that may be helpful –
https://www.youtube.com/user/TheNeuropathyAssocia. This is a link I found on the Minnesota Neuropathy Associations website – http://www.neuropathy-mn.org/. I also belong to this organization as it was the first and closest support organization I found. They have about 8 or 9 monthly meetings a year but do not normally meet during the bad weather months.

Liked by tbeckys

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@azjulie

Husband has autonomic neurology with pain especially in his hand. He wears golf gloves and says it cuts the pain in half. Neurologist at Mayo says he can’t help him as he needs a muscle/neurologist. Has tests on November 14 and hopefully will see a doctor after that. Gabapentin and Lyrica does not work for him.

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I am being treated by a neurologist for neuropothy > I do not have diabetics. He increased my gabapentin to help with pain. I take 300 mgs of gabapentin and a lor tab at 4 pm and 600 mgs of gabapentin at 11pm. He also put me on 5000 mgs of under the tongue vit B-12. I was already having shots every 3 weeks. He wants my B-12 in the high numbers. I have already gotten relief. try the vit b-12 both shots and under the tongue to see if it helps

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hav e U gtried Gabapentin? I take 300 mg. 2 or 3 times a day.

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@azjulie

Husband has autonomic neurology with pain especially in his hand. He wears golf gloves and says it cuts the pain in half. Neurologist at Mayo says he can’t help him as he needs a muscle/neurologist. Has tests on November 14 and hopefully will see a doctor after that. Gabapentin and Lyrica does not work for him.

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Maybe medical cannabis would help. Ask his Mayo doctor how to get it.

Nancy Shermoen~

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@bobsconnect

I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.

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You use medical Cannibis am I correct?

Nancy Shermoen~

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@bobsconnect

I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.

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Yes

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2 weeks ago I started taking Horizant (gabapentin enacarbil), 600 mg per day, an extended release med. It has considerably reduced the burning in my right leg and foot. I had taken regular gabapentin, up to 900 mg a day, with no real results, so I was skeptical when a pain specialist prescribed this. Apparently it’s absorbed by the body differently from regular gabapentin. It has helped me tremendously. I still have some of the burning sensation, but it’s much less intense than it was before. Worth a try. I think it’s supposed to be available in generic form soon.

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@grandmacheryl

2 weeks ago I started taking Horizant (gabapentin enacarbil), 600 mg per day, an extended release med. It has considerably reduced the burning in my right leg and foot. I had taken regular gabapentin, up to 900 mg a day, with no real results, so I was skeptical when a pain specialist prescribed this. Apparently it’s absorbed by the body differently from regular gabapentin. It has helped me tremendously. I still have some of the burning sensation, but it’s much less intense than it was before. Worth a try. I think it’s supposed to be available in generic form soon.

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Hello @grandmacheryl, I had not heard of the gabapentin enacarbil so had to look it up. Here is a link that discusses it’s use – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002665/. Glad it is working for you.

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Too technical. Mayo Clinic also indicates improvement with the newer drug for RLS but does not make comparisons for NP in general.

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