Anyone here dealing with peripheral neuropathy?

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud's, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don't have the peripheral neuropathy at this point. I'm hoping to bring my daughter to Mayo's erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Hello Trisha (@trish602) and Robert (@robertclark), I don't have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It's now just above my ankles. I'm not sure it works for everyone but I did run the list of supplements by my primary doctor who didn't really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo's site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements - "The Solutions to Peripheral Neuropathy" and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a "make money" scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don't give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud's, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don't have the peripheral neuropathy at this point. I'm hoping to bring my daughter to Mayo's erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Hello Trisha (@trish602) and Robert (@robertclark), I don't have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It's now just above my ankles. I'm not sure it works for everyone but I did run the list of supplements by my primary doctor who didn't really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo's site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements - "The Solutions to Peripheral Neuropathy" and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a "make money" scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don't give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

Hello Trisha (@trish602) and Robert (@robertclark), I don't have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It's now just above my ankles. I'm not sure it works for everyone but I did run the list of supplements by my primary doctor who didn't really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo's site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements - "The Solutions to Peripheral Neuropathy" and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a "make money" scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don't give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud's, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don't have the peripheral neuropathy at this point. I'm hoping to bring my daughter to Mayo's erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Hi John, Thanks for that video. My burning pain and numbness is in my left foot and lower left leg only. Is that common? A foot doctor I see thinks my metatarsal pad has worn down and when walking causes a burning pain and numbness. Does that sound like what others have? Do you know of any support groups for neuropathy? I am in Richmond, VA. Where are you located?