John, Volunteer Mentor | @johnbishop | Dec 31, 2016
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!
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.
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.
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.
John, Volunteer Mentor | @johnbishop | Jan 4, 2017
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
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.
<br><br><br><br>Hi, <br>I use a cream that I rub into my feet three times a day and as the pain got <br>less and less I quit using it only if I have a flare up.<br>It is called DermaTran Health solutions. I am almost pain free except when <br>it starts again and then I just start rubbing in some for about a week and am <br>pain free again.<br>If you want more info I can send it to you.<br> <br>
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?
Hello Rabbit. I have severe foot pain. The opiates I have been prescribed seem to not be as effective as they were at the beginning. In fact, they maybe help about 30% of the pain at this time. I am going to research medical marijuana next.
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
My Neuropathy supposedly was caused by my type 2 diabetes and if not, there is no specific reason. I have tried Lyrica which was quite expensive but offered no relief. I take Gabapentin and Cymbalta but have not gotten relief. I use opiates which helped a lot the first few years but no longer seem effective. My next step will be researching medical marijuana. The last resort are two implanted devices that Medtronic manufactures, however, the Neurologist called them "last resort" options.
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
Hello @philio66 - I have idiopathic small fiber neuropathy in both legs and feet. Fortunately I only have the numbness and not pain that you and other folks have with your neuropathy. I've had it for 20+ years and only had the EMG and MRI tests done this past March to get a specific diagnosis. My Mayo neurologist told me that there is no drugs or topicals that will help with the numbness. He also told me to just watch it and if it gets worse let them know. Eventually he said it may affect my sensory/motor nerves and may cause vital organs to shut down. At that point I started my own research and tried to learn as much as I could - have tried most of the snake oils, essential oils and a few other treatments which have done nothing.
I found a closed Facebook group - Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/SPNPD/) which actually has a solution to the PN problem. I don't know if it will work for everyone but there are 3000+ members in the group with all different types of PN diagnosis. Basically it's multiple over the counter vitamins/supplements that help to repair damaged nerves which are the source of the pain signals being sent to the brain. There are many members who have been able to titrate off of their pain medications and just take the supplements. They recently received their 501c3 certification. There are many members with type 2 diabetes and chemo induced PN and many others. Several were bed ridden and now are completely off of their pain medications and just on the protocol by itself.
I have been taking the protocol of supplements since the first week in September and have seen results. When I started the numbness was just below the knees and it is currently just above the ankles. It doesn't sound like much but to me it is significant because it's not progressing up my legs like it was. I would recommend you check out the group and read through the new member welcome information that explains how it works then discuss the supplements with your neurologist or PCP to make sure there is nothing that would interact with any medications you are currently taking. I ran the list by my Mayo PCP who forwarded it to the Mayo pharmacist. He only had concern about one supplement but it was minor and I actually found information on the omega 3 oil dosage he was concerned about on a Mayo Clinic research topic for dosage levels used to treat specific medical issues. I am telling you all of this because I want to make sure you do your own research and be your own advocate. It is important to have a discussion with your neurologist and/or primary care doctor and have some questions ready to ask them. I am not a medical professional but what I have learned from the group is that the pain medications do zero to fix the nerve damage that is causing the pain. They only block/mask the pain signals from the nerves to make the pain go away. A lot of the drugs being used to treat PN are anti-seizure drugs (http://mayocl.in/1TKJdhs) and they do come with side affects (foggy brain being one of them when on high doses). The protocol works to repair the damaged nerves which in turn gets rid of the pain. The only caveat is if the nerves are damaged beyond repair (surgery, broken nerve fibers, crushed, etc.).
I don't know the answer but I know that you should continue to be a strong advocate and learn as much as you can about your condition.
In the FaceBook there is an ad? for
Welcome to Genes for Good!
Before we jump in let's review how the study works in four slides.
After that, since this is a research study, we'll take you through a consent form. It lays out your role in the study, including the benefits and risks of participating. Please read it carefully!
What do u think - did you join?
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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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2 ReactionsThanks, John.
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1 ReactionFacebook is pending. thx
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1 ReactionBob, 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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Helpful -
Hug
1 ReactionIf 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
-
Like -
Helpful -
Hug
1 Reaction<br><br><br><br>Hi, <br>I use a cream that I rub into my feet three times a day and as the pain got <br>less and less I quit using it only if I have a flare up.<br>It is called DermaTran Health solutions. I am almost pain free except when <br>it starts again and then I just start rubbing in some for about a week and am <br>pain free again.<br>If you want more info I can send it to you.<br> <br>
Hello Rabbit. I have severe foot pain. The opiates I have been prescribed seem to not be as effective as they were at the beginning. In fact, they maybe help about 30% of the pain at this time. I am going to research medical marijuana next.
-
Like -
Helpful -
Hug
2 ReactionsMy Neuropathy supposedly was caused by my type 2 diabetes and if not, there is no specific reason. I have tried Lyrica which was quite expensive but offered no relief. I take Gabapentin and Cymbalta but have not gotten relief. I use opiates which helped a lot the first few years but no longer seem effective. My next step will be researching medical marijuana. The last resort are two implanted devices that Medtronic manufactures, however, the Neurologist called them "last resort" options.
Hello @philio66 - I have idiopathic small fiber neuropathy in both legs and feet. Fortunately I only have the numbness and not pain that you and other folks have with your neuropathy. I've had it for 20+ years and only had the EMG and MRI tests done this past March to get a specific diagnosis. My Mayo neurologist told me that there is no drugs or topicals that will help with the numbness. He also told me to just watch it and if it gets worse let them know. Eventually he said it may affect my sensory/motor nerves and may cause vital organs to shut down. At that point I started my own research and tried to learn as much as I could - have tried most of the snake oils, essential oils and a few other treatments which have done nothing.
I found a closed Facebook group - Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/SPNPD/) which actually has a solution to the PN problem. I don't know if it will work for everyone but there are 3000+ members in the group with all different types of PN diagnosis. Basically it's multiple over the counter vitamins/supplements that help to repair damaged nerves which are the source of the pain signals being sent to the brain. There are many members who have been able to titrate off of their pain medications and just take the supplements. They recently received their 501c3 certification. There are many members with type 2 diabetes and chemo induced PN and many others. Several were bed ridden and now are completely off of their pain medications and just on the protocol by itself.
I have been taking the protocol of supplements since the first week in September and have seen results. When I started the numbness was just below the knees and it is currently just above the ankles. It doesn't sound like much but to me it is significant because it's not progressing up my legs like it was. I would recommend you check out the group and read through the new member welcome information that explains how it works then discuss the supplements with your neurologist or PCP to make sure there is nothing that would interact with any medications you are currently taking. I ran the list by my Mayo PCP who forwarded it to the Mayo pharmacist. He only had concern about one supplement but it was minor and I actually found information on the omega 3 oil dosage he was concerned about on a Mayo Clinic research topic for dosage levels used to treat specific medical issues. I am telling you all of this because I want to make sure you do your own research and be your own advocate. It is important to have a discussion with your neurologist and/or primary care doctor and have some questions ready to ask them. I am not a medical professional but what I have learned from the group is that the pain medications do zero to fix the nerve damage that is causing the pain. They only block/mask the pain signals from the nerves to make the pain go away. A lot of the drugs being used to treat PN are anti-seizure drugs (http://mayocl.in/1TKJdhs) and they do come with side affects (foggy brain being one of them when on high doses). The protocol works to repair the damaged nerves which in turn gets rid of the pain. The only caveat is if the nerves are damaged beyond repair (surgery, broken nerve fibers, crushed, etc.).
I don't know the answer but I know that you should continue to be a strong advocate and learn as much as you can about your condition.
Hoping you find an answer that works for you.
John
-
Like -
Helpful -
Hug
5 ReactionsIn the FaceBook there is an ad? for
Welcome to Genes for Good!
Before we jump in let's review how the study works in four slides.
After that, since this is a research study, we'll take you through a consent form. It lays out your role in the study, including the benefits and risks of participating. Please read it carefully!
What do u think - did you join?
-
Like -
Helpful -
Hug
1 Reaction