rabbit10
@rabbit10
@rabbit10
Posts: 36
Joined: Apr 07, 2016
Anyone here dealing with peripheral neuropathy?
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
arnrob
@arnrob
@arnrob
Posts: 43
Joined: Aug 11, 2016
@deanna21239, Good afternoon. You are certainly being challenged by your medical conditions. The restriction on medications at this point notably leaves you with fewer choices. I do agree with your nephrologist that medical cannabis is ok. Even better, from my perspective, it can significantly improve your current quality of life by relieving pain and inflammation as well as lifting that cloud that is hanging over you.
The task of developing a medical cannabis program for one's self is a hurdle that requires research and the guidance of a helpful coach. There is no product or dosage chart for providers to follow. There are some medical cannabis pharmacologists associated with programs like Minnesota's. Over the last three years, I have experimented and followed the word of mouth recommendations of others. If I dig into the research I make sure it is from reputable sources.
@deanna21239 Maybe it is best to just net this out. Then you will have a preliminary reference guide.
For pain, especially pain from neuropathy, here is what works for me:
Morning…..a 1:1CBD/THC tincture held under the tongue so that it is delivered immediately to the pain area through the membrane located there rather than having it pass through the digestive system. That means….a higher concentration, more quickly, e.g. 10 – 15 minutes. It should last for 4-5 hours.
Afternoon….repeat the tincture with a 2:1CBD/THC dose. If you have neuropathy pain e.g. needles, tingling, in your extremities, use a verified 3:1 balm that should last a couple of hours.
Now you may have sufficient medication to last you till an hour before bedtime when you repeat the 2:1CBD/THC tincture and the balm and prepare for a restful sleep. I do keep a Palm vape pen (with Indica or a Hybrid) in my purse for some breakthrough pain that might happen during the day. There is also one on the nightstand for pain that might interfere with my sleep and heaven knows you need sleep…..uniterrupted by pain, or electric shocks/zaps.
Please let me know if you have additional questions or concerns. I am very willing to assist or help you find someone in this talented group of mentors and moderators with an experience that could be helpful.
May you be free of suffering today. Chris
Thank you SO much for that clear and detailed explanation of how this stuff works. Although I have spoken to many "experts" no one has been as clear as you.
If I may, one question: A full dropper full of 2:1 is WAY too much for me. How many drops, in your experience, seems to work best. I guess I could start again with one drop each time but I know that is not enough.
I welcome your insight.
Arnrob
Liked by John, Volunteer Mentor
Chris Trout, Volunteer Mentor
@artscaping
@artscaping
Posts: 1039
Joined: Jul 11, 2017
Thank you SO much for that clear and detailed explanation of how this stuff works. Although I have spoken to many "experts" no one has been as clear as you.
If I may, one question: A full dropper full of 2:1 is WAY too much for me. How many drops, in your experience, seems to work best. I guess I could start again with one drop each time but I know that is not enough.
I welcome your insight.
Arnrob
@arnrob, Good morning. Thanks….I am glad that my “netting it out” worked for you. Here’s the deal….I am not very good with ml and mgs for medication.
I started a couple of years ago with 1/2 dropper or ,5 ml. That is about 18 to 20 drops depending on how tightly you squeeze it. I now take a full dropper. With the 2:1CBD/THC….that is about 25 drops.
Just like medications, our bodies adjust to medications and to cannabis. I feel nothing psychotropic except a calming sense of being OK. I am in complete control and have no pain anywhere for a glorious 4 hours.
Your body will tell you when the next dose is required. And it is wise to stay ahead of the pain.
Be healthy and whole today.
Chris
PS. Sometimes with a new brand I need to start with fewer drops until my body gets used to it. My best is Care By Design.
Liked by John, Volunteer Mentor, rwinney
arnrob
@arnrob
@arnrob
Posts: 43
Joined: Aug 11, 2016
@arnrob, Good morning. Thanks….I am glad that my “netting it out” worked for you. Here’s the deal….I am not very good with ml and mgs for medication.
I started a couple of years ago with 1/2 dropper or ,5 ml. That is about 18 to 20 drops depending on how tightly you squeeze it. I now take a full dropper. With the 2:1CBD/THC….that is about 25 drops.
Just like medications, our bodies adjust to medications and to cannabis. I feel nothing psychotropic except a calming sense of being OK. I am in complete control and have no pain anywhere for a glorious 4 hours.
Your body will tell you when the next dose is required. And it is wise to stay ahead of the pain.
Be healthy and whole today.
Chris
PS. Sometimes with a new brand I need to start with fewer drops until my body gets used to it. My best is Care By Design.
GREAT!! Very helpful. Guess I will call on my chemistry training from college and make all the interchanges. Easily done.
Arnrob
Liked by John, Volunteer Mentor
Hello everyone, I am new to this a I just found this web site, I was in the hospital for pneumonia, the someone sent a Dr that dealt with blood counts, and he told me to go online and try it for mayo clinic he said most of the are a waste of time. OK now for my illness I don't know a lot about it. I was told in 2015 that I had AIPD a spin off of guillin barre. I was falling a lot and then it got to the point that I could not get up my husband had to lift me up. Finally my husband said that it I was going to the doctor. We were up at our vacation property so we packed up and we had 2 vehicles there so I drove one home and then called my primary care doctor, he didn't know what was going on. He thought I might of had a stroke because my left side was the first to go. So I went to the hospital they ran so many tests and they could not figure it out. They decided I needed a cervical fusion and maybe that would clear the stuff I was having.They did the surgery and when I woke up I could no move my legs at all and my arms very little. Well I don't know much more the hospital I was in druged me up so far I was in a coma. Well they told my husband to get hospice they did not know what I had. Then 1 of the doctors told my husband they could get me into Henry Ford Hospital in /Detroit 2 hours away from home. But the best around. My husband say 3-4 days waiting and they took me there. Sorry but I need to stop and make dinner I will post more later.
Liked by Lisa Lucier
elizm
@elizm
@elizm
Posts: 234
Joined: Jun 15, 2018
Hello everyone, I am new to this a I just found this web site, I was in the hospital for pneumonia, the someone sent a Dr that dealt with blood counts, and he told me to go online and try it for mayo clinic he said most of the are a waste of time. OK now for my illness I don't know a lot about it. I was told in 2015 that I had AIPD a spin off of guillin barre. I was falling a lot and then it got to the point that I could not get up my husband had to lift me up. Finally my husband said that it I was going to the doctor. We were up at our vacation property so we packed up and we had 2 vehicles there so I drove one home and then called my primary care doctor, he didn't know what was going on. He thought I might of had a stroke because my left side was the first to go. So I went to the hospital they ran so many tests and they could not figure it out. They decided I needed a cervical fusion and maybe that would clear the stuff I was having.They did the surgery and when I woke up I could no move my legs at all and my arms very little. Well I don't know much more the hospital I was in druged me up so far I was in a coma. Well they told my husband to get hospice they did not know what I had. Then 1 of the doctors told my husband they could get me into Henry Ford Hospital in /Detroit 2 hours away from home. But the best around. My husband say 3-4 days waiting and they took me there. Sorry but I need to stop and make dinner I will post more later.
@sandyhill
CIPD, perhaps?
cim37343
@cim37343
@cim37343
Posts: 36
Joined: Sep 10, 2019
Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem – damaged nerves which cause the pain signals to be sent to the brain.
I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.
I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it's out of sight, out of mind for a lot of folks. Here are the ones I've used:
Quazar's wonderful guidance about avoiding scams and snake oil cures:
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/
FDA's HEALTH FRAUD PAGE
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm
You can also link to this great resource from NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions
That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:
http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372
This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.
Hoping all of my neuropathy friends find a treatment that works for them!
John
Could you share what vitamins you are taking?
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 5689
Joined: Mar 22, 2016
Could you share what vitamins you are taking?
Hi @cim37343, Actually I did share the links to what I take in my story where you posted your comment. I found them in a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. This page on the website has links to Amazon where I order my protocol of supplements — http://solutions2pnpd.com/products/. This page on the website has instructions for when to take each of the supplements – morning, noon , evening — http://solutions2pnpd.com/instructions/.
If you want to try the protocol, I would recommend first joining the group and reading through the new member welcome – yes, it's a lot of reading and most people want just the bottom line but you really need to know what each of the supplements is doing so reading is required. It has helped a lot of people with neuropathy pain but it does not cure neuropathy. As far as I know from my own research, there is no cure for neuropathy, there are only treatments for the symptoms.
Good luck whatever you decide!
Liked by Jim, Volunteer Mentor
cim37343
@cim37343
@cim37343
Posts: 36
Joined: Sep 10, 2019
Hi @cim37343, Actually I did share the links to what I take in my story where you posted your comment. I found them in a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. This page on the website has links to Amazon where I order my protocol of supplements — http://solutions2pnpd.com/products/. This page on the website has instructions for when to take each of the supplements – morning, noon , evening — http://solutions2pnpd.com/instructions/.
If you want to try the protocol, I would recommend first joining the group and reading through the new member welcome – yes, it's a lot of reading and most people want just the bottom line but you really need to know what each of the supplements is doing so reading is required. It has helped a lot of people with neuropathy pain but it does not cure neuropathy. As far as I know from my own research, there is no cure for neuropathy, there are only treatments for the symptoms.
Good luck whatever you decide!
Great! I really appreciate your quick response!
Liked by John, Volunteer Mentor, Lisa Lucier
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 06, 2019
Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem – damaged nerves which cause the pain signals to be sent to the brain.
I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.
I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it's out of sight, out of mind for a lot of folks. Here are the ones I've used:
Quazar's wonderful guidance about avoiding scams and snake oil cures:
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/
FDA's HEALTH FRAUD PAGE
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm
You can also link to this great resource from NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions
That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:
http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372
This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.
Hoping all of my neuropathy friends find a treatment that works for them!
John
@johnbishop…I tried to join that FB group but it asked me to answer questions that don't exist. Am I missing something? Says my request is pending but I need to answer questions but there are no questions? Pam
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 5689
Joined: Mar 22, 2016
@johnbishop…I tried to join that FB group but it asked me to answer questions that don't exist. Am I missing something? Says my request is pending but I need to answer questions but there are no questions? Pam
Click the following link and click Join and it should take you to the questions. http://www.facebook.com/groups/spnpd
Click the following link and click Join and it should take you to the questions. http://www.facebook.com/groups/spnpd
John, Is there any way to get the vitamin/mineral combo without joining facebook. I do not use facebook and do not want to if I can avoid it. Thank you for any help
burningfeetinphoenix
@burningfeetinphoenix
@burningfeetinphoenix
Posts: 122
Joined: Sep 06, 2019
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 5689
Joined: Mar 22, 2016
John, Is there any way to get the vitamin/mineral combo without joining facebook. I do not use facebook and do not want to if I can avoid it. Thank you for any help
@rramsey and @burningfeetinphoenix — You can order the products from the Facebook groups website and use the instructions on the website for taking the supplements but you will lose the ability to search the Facebook group for any questions you might have and to see the stories of other members of their group and their symptoms/diagnosis that have been helped. You easily find the success stories of the members who have posted them in the close to 9,000 member group by searching the group using #theprotocolworks.
It is a little confusing trying to order until you figure out how it's layed out – Just look for "Order 1". through "Order 11." followed by a link for US (USA), UK (United Kingdom) and CDN (Canada) to buy on Amazon for the selected country. Some members in other locations around the world have put together a list of how to get the products for other locations but you can only access the list from the Facebook group by searching or asking a question in the group. The Facebook group which is a non-profit (501c3) will soon release their own version of the supplements to reduce the number of pills to about half of what we take daily now. The only other caveat I know is that the Hemp Oil is ordered through the group using PayPal or mailing a check. That process was put in place so that we don't get expired or soon to expire hemp oil which happened in the first year or so the Facebook group was formed.
Link to order the elements – http://solutions2pnpd.com/products/
Instructions for taking the elements – http://solutions2pnpd.com/instructions/
I would discuss the supplements with your doctor before taking them.
@rramsey and @burningfeetinphoenix — You can order the products from the Facebook groups website and use the instructions on the website for taking the supplements but you will lose the ability to search the Facebook group for any questions you might have and to see the stories of other members of their group and their symptoms/diagnosis that have been helped. You easily find the success stories of the members who have posted them in the close to 9,000 member group by searching the group using #theprotocolworks.
It is a little confusing trying to order until you figure out how it's layed out – Just look for "Order 1". through "Order 11." followed by a link for US (USA), UK (United Kingdom) and CDN (Canada) to buy on Amazon for the selected country. Some members in other locations around the world have put together a list of how to get the products for other locations but you can only access the list from the Facebook group by searching or asking a question in the group. The Facebook group which is a non-profit (501c3) will soon release their own version of the supplements to reduce the number of pills to about half of what we take daily now. The only other caveat I know is that the Hemp Oil is ordered through the group using PayPal or mailing a check. That process was put in place so that we don't get expired or soon to expire hemp oil which happened in the first year or so the Facebook group was formed.
Link to order the elements – http://solutions2pnpd.com/products/
Instructions for taking the elements – http://solutions2pnpd.com/instructions/
I would discuss the supplements with your doctor before taking them.
Thanks Pam, and thank you John for the clarification. John, for you, in reference to my original question about authoritative guidance for the use of compression socks. The rational for not wearing compression socks for SFN is because theoretically, from a physiological standpoint, the socks are capable of causing some degree of venous stasis and reduced arterial blood flow creating an anoxic environment around the associated nerves. Although this may be minor, any reduction of oxygen to an already damaged, oxygen deprived, oxygen hungry nerve may be pathologically detrimental to the protective myelin nerve sheath and ultimately to the nerve proper. I hope that there is someone in the group who has expertise in neurophysiology who can authoritatively comment on this controversial question.
I do not have the edema problem that you do(bless your heart), but my mother does. I recall that you said you have difficulty complying with your physicians recommendation to elevate your feet and legs several times per day. Here is a tip that may help and not require some many times per day. A yoga instructor taught her to lay on the floor with her buttocks against the wall and her feet and legs extended vertically 90 degrees up the wall. Hold this for several minutes(at least 15) while periodically wiggling the toes and flexing and extending the feet and ankles. Then finish by "milk" the toes, feet and legs by massaging from the toes downward to the waist. It is done first thing in the morning, sometime in the afternoon and at night before going to bed. These "super" elevations may cut down on the multiple minor elevations that he recommended and be more efficient and therapeutic for you. If you decide to try this, I hope it helps. Thanks again for your guidance with the supplements.
@artscaping
@deanna21239, Good afternoon. You are certainly being challenged by your medical conditions. The restriction on medications at this point notably leaves you with fewer choices. I do agree with your nephrologist that medical cannabis is ok. Even better, from my perspective, it can significantly improve your current quality of life by relieving pain and inflammation as well as lifting that cloud that is hanging over you.
The task of developing a medical cannabis program for one's self is a hurdle that requires research and the guidance of a helpful coach. There is no product or dosage chart for providers to follow. There are some medical cannabis pharmacologists associated with programs like Minnesota's. Over the last three years, I have experimented and followed the word of mouth recommendations of others. If I dig into the research I make sure it is from reputable sources.
@deanna21239 Maybe it is best to just net this out. Then you will have a preliminary reference guide.
For pain, especially pain from neuropathy, here is what works for me:
Morning…..a 1:1CBD/THC tincture held under the tongue so that it is delivered immediately to the pain area through the membrane located there rather than having it pass through the digestive system. That means….a higher concentration, more quickly, e.g. 10 – 15 minutes. It should last for 4-5 hours.
Afternoon….repeat the tincture with a 2:1CBD/THC dose. If you have neuropathy pain e.g. needles, tingling, in your extremities, use a verified 3:1 balm that should last a couple of hours.
Now you may have sufficient medication to last you till an hour before bedtime when you repeat the 2:1CBD/THC tincture and the balm and prepare for a restful sleep. I do keep a Palm vape pen (with Indica or a Hybrid) in my purse for some breakthrough pain that might happen during the day. There is also one on the nightstand for pain that might interfere with my sleep and heaven knows you need sleep…..uniterrupted by pain, or electric shocks/zaps.
Please let me know if you have additional questions or concerns. I am very willing to assist or help you find someone in this talented group of mentors and moderators with an experience that could be helpful.
May you be free of suffering today. Chris
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, elizm