Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That’s where I am today. I’ve tried every medication used to treat neuropathy, with no effect – except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I’ve been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I’ll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I’ve found I can get off it without any signs of dependency. I’m in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

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DO NOT SELF-MEDICATE! WHAT HAVE YOU DONE BY WAY OF RESEARCHING, ON MAYO CLINIC AND,OR, ELSEWHERE AND WHERE IS YOUR NEUROLOGIST IN ALL THIS? SOME OF US TAKE GABAPENTIN, 300 MG, ONE OR MORE TIMES A DAY. I STARTED AT TWICE A DAY AND NOW AS NEEDED, BUT REALLY TWICE A DAY.IT HAS BEEN BETTER FOR ME FOR THE PAST 1-2 MONTHS.

OTHERS TAKE LYRICA.

TAKING AN OPIATE WITH ANOTHER DEPRESSANT (CYMBALTA OR ZOLOFT, ETC) IS DANGEROUS!!

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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FOUR OF US AT MY SENIOR RESIDENCE HAVE NP FOR DIFFERENT REASONS:DIABETES (ME),ACCIDENT AND ?

TWO OF US TAKE GABAPENTIN AND ONE TAKES LYRICA..
THE FOURTH ??

I ALSO TAKE VIT B COMPLEX AS B12 IS IMPORTANT. i have had a very big improvement over the past 1-2 months. my main problem still is cold feet.

Liked by stenorick

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@jimhd

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That’s where I am today. I’ve tried every medication used to treat neuropathy, with no effect – except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I’ve been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I’ll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I’ve found I can get off it without any signs of dependency. I’m in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

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Hi Jim, I have a similar problem but only in my left foot and leg that started 8 years ago. I had burning pain in both buttocks, both legs, and both feet caused by lumbar stenosis. After two spinal surgeries I’m left with this burning pain and numbness in my left foot and lower leg. I have tried most non opiate medications and now on Gabapentin at 1600 mg/day. I am trying the Protocol of large doses of vitamins and supplements. It can be found on a private FB site called Solutions to Peripheral Neuropathy. I’m just started trying this. Maybe it could help you too. I pray it helps. Bob

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How can I get on private FB site called Solutions to Peripheral Neuropathy? Even thou I am a Graphic Designer, I find fb to be non – intuitive.

Liked by trish602

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Rabbit 10, There is a wonderful support group on Facebook called Peripheral Neuropathy Support Group. It’s one more place, in addition to this wonderful website, where you can care and share with others. I’ve had peripheral neuropathy (PN – mostly in feet) for 4 years. I take a low dose of Lyrica twice daily and it has truly helped.

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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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Hello Mari (@mari), if you are not on Facebook you will need to create a login, then the link should work. Once you join the group, please read the new member Welcome message which explains how to get started. It is a lot of reading but it is necessary and it is worth the time. Here is the link to the closed group – https://www.facebook.com/groups/SPNPD/.

Before you start the protocol, please have the discussion with your doctor. I gave the list to my PN who ran them by the Mayo pharmacist and I received sort of a ho-hum response which is what I expected. I only have numbness in my legs and feet and there are no drugs to treat numbness per my PN and my Mayo neurologist. They can only offer drugs to treat the pain which is caused by damaged nerves. The drugs come with a lot of side effects, none good. The protocol supplements work on repairing the damaged nerves which in return eliminates the pain and reduces the numbness. I have been taking the supplements since September. When I started I had numbness (no pain) in both legs from just below the knee to the toes. Now the numbness seems to start just above the ankles. No two people are the same and others that started with PN with pain and numbness were also taking the standard PN pain drugs – gabapentin, lyrica, etc.. Those people have been able to get off of the drugs which are not needed when the pain goes away. IT IS REALLY IMPORTANT that you discuss this with your doctor. If you read through the group you will be able read success stories from group members. I would join the group and read, read, read before you make any decisions. Also, remember that you are your best advocate and the one who makes the final decision.

Most of the research done for peripheral neuropathy addresses the pain and how to block the pain, etc.. I recently read an article on the Foundation for Peripheral Neuropathy’s website but can’t find it again. It referenced the following NCBI link which may provide more hope for those suffering from peripheral neuropathy – https://www.ncbi.nlm.nih.gov/pubmed/22201810.

Hoping for a better 2017 for all of us…

John

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@jimhd

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That’s where I am today. I’ve tried every medication used to treat neuropathy, with no effect – except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I’ve been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I’ll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I’ve found I can get off it without any signs of dependency. I’m in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

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Hi Jim, Bob – here is the link to the group – https://www.facebook.com/groups/SPNPD/. I have the numbness in both legs and feet but no pain so have not needed any drugs. Although I was put on gabapentin for about a month earlier this year until I told the doctor team it wasn’t helping with the numbness. They had a group discussion and we talked about the symptoms more which is when they told me the drug does nothing for numbness…only addresses the pain. I started taking the protocol/supplements in September and the numbness was in both legs from just below the knee down through the toes. Today the numbness feels like it’s just above the ankles which is some progress. A lot of members in the group report quicker results and hopefully both of you will see results sooner than later.

John

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@mari

How can I get on private FB site called Solutions to Peripheral Neuropathy? Even thou I am a Graphic Designer, I find fb to be non – intuitive.

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@mari I wasn’t aware that FB had a page on Peripheral Neuropathy. I will check it out. I have had PN for four years. I had an extended hospital stay and was unable to get out of bed. The result was PN in both feet up to my calf in my left leg and just to my
ankle on my right foot. The numbness is constant the pain however, comes and goes. Sometimes sharp and sometimes shockingly
hard. But it is hear and gone almost immediately. I cannot take drugs of any type so I don’t accept the offers of Rx. I just live with it.
It does become part of your life and I guess I tend to just ignore it. How are you coping? I’m always interested in how others got this
and why.
Trish D

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@andilynn

Rabbit 10, There is a wonderful support group on Facebook called Peripheral Neuropathy Support Group. It’s one more place, in addition to this wonderful website, where you can care and share with others. I’ve had peripheral neuropathy (PN – mostly in feet) for 4 years. I take a low dose of Lyrica twice daily and it has truly helped.

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@andilynn: I was not aware of the page on PN on Facebook. I will check it out today. I, too, have had PN for 4 years in both feet and to my calf on my left let but just above my ankle on my right leg. The left is far more painful and lets me know it’s there constantly. I’m interested in what triggered your PN. Mine was from an extended hospital stay wherein I was unable to get out of bed for 42 days.
I look forward to hearing from you. I am allergic to drugs so I take nothing. I was given lidocaine cream but it did nothing.
Trish D

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Facebook has quite a few different PN groups listed when you do a search. I have been a member of most of them and some do offer a comfortable place to share your story and ask questions but none of the groups provided and real answers to how to “fix” the pain and numbness caused by PN.

http://www.facebook.com/groups/spnpd has the protocol/supplements that help repair damaged nerves – all over the counter supplements, no one in the group trying to make money off it. I’ve been scammed by a few treatments/vitamins so I urge you all to educate yourself and read all you can…and talk with your doctor. My doctor offered no hope or fix for my idiopathic SFPN just a watch and let me know if it gets worse. I’m 73 and have been dealing with numb legs and feet for over 20 years and decided I don’t want to wait. If there is any thing I can do to get rid of the numbness and I am able to do it, I’m going to give it a try. I started my search in March of this year and found the group in August. I’ve been taking the protocol since September 2nd and have seen some relief with my numbness – what was just below both knees is now just above the ankles. Maybe it will never completely go away but it does not appear to be getting worse which is what my neurologist told me typically happens over time.

The group has started another closed group that you can view all of the member success stories. I would recommend staring there or joining the group above and then read the member stories in the Facebook Group Solutions to Peripheral Neuropathy Pain & Discomfort.

Hoping for a pain free, numbness free 2017 for all!

John

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@jimhd

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That’s where I am today. I’ve tried every medication used to treat neuropathy, with no effect – except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I’ve been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I’ll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I’ve found I can get off it without any signs of dependency. I’m in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

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Thanks, John.

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Facebook is pending. thx

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@jimhd

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That’s where I am today. I’ve tried every medication used to treat neuropathy, with no effect – except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I’ve been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I’ll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I’ve found I can get off it without any signs of dependency. I’m in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

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Bob, thanks for the website. Right now, I’m working with a pain specialist, waiting to start the process of giving a spinal cord stimulator a try. I try to make only one change at a time, so I know just what works and what doesn’t.

Gotta go. We’re in town, shopping after the morning church service.

Jim

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If you live in and around Minneapolis – St. Paul the Minnesota Neuropathy Association is holding a meeting on January 21st.
Program: Circle of conversation. Back by popular demand, this format has become one of our most popular types of meetings. This is your opportunity to talk with others who have neuropathy and discuss concerns/problems. Please plan to come and learn what others are doing, to not only cope with neuropathy, but to thrive. It’s not posted on the website yet but hopefully will be soon – http://www.neuropathy-mn.org/.

Saturday, January 21 – 10 am
St Michael’s Lutheran Church
9201 Normandale Blvd
Minneapolis, MN 55437

John

Liked by ridgerunner

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