Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@barbbie

I will pray for a great outcome for your surgery. I prefer my pain management doc as I am allergic to so many medications, including MAC anesthesias. He has helped me significantly with radio frequency ablations. In some places I have had close to two years relief. I hate headaches and an injury to my neck gave me occipital headaches. It's been a year since I had the last rfas and I am still headache free. He has also done some on my lower back with success. Not sure how long this latest series have been doing their thing.. With the stimulator I have seven programs and a variety of pulsations. It can take adjustment to the stimulator to get the best for you. I just turned my feet one on. You mentioning that reminded me I have that available.. Feels pretty good while sitting!

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@barbbie you are so very fortunate to have had such good luck with your pain management doctor. And I say "luck" because as great a guy as he must be I have to think there is much that is out of his hands. His success in trying things for you is fabulous though and it makes me happy for you. It's nice to hear a success story regarding these stimulators. Not sure my wife is ready to undertake getting one yet but we may get there eventually, especially if we hear more stories like yours. Best to you, Hank

Liked by lorirenee1, fiesty76

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@jesfactsmon

@barbbie you are so very fortunate to have had such good luck with your pain management doctor. And I say "luck" because as great a guy as he must be I have to think there is much that is out of his hands. His success in trying things for you is fabulous though and it makes me happy for you. It's nice to hear a success story regarding these stimulators. Not sure my wife is ready to undertake getting one yet but we may get there eventually, especially if we hear more stories like yours. Best to you, Hank

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Hank, my whole story with my pain management doc is incredible. He actually called me and asked me to be his patient. I later found out the pain management doctor I had been seeing asked him to take me on as a patient! I'm not sure the exact reason, but I had a great relationship with him personally, but I believe my incredible number of allergies to meds may have done it. In my trial time of the stimulator he gave me versed something I am allergic to. When I asked him why, he said he only gave me a child's dose. My current pain management doc is the same age as my older son. The first procedure he did on me he gave me something that caused larngeal edema, an allergic reaction. I called, he happened to be on call, and didn't recognize me because my voice was exceedingly low and scratchy. He gave me his personal cell phone number to call. Told me he had never done that before. That was eight years ago. We text on a some what regular basis and always after a procedure. He has a great sense of humor. I have told him I think of him as an adopted son. He treats me like a queen, but I have discovered that's how he treats other patients as well. I just have a special connection. I would encourage your wife to consider doing the trial which they always do before doing an implant. It's a great way to see what it can do for you. Mine was done in the office. It wasn't a difficult process pain wise.I have a Boston Scientific system. Thanks for giving me a chance to respond.

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This is Naomi, new to the group. Always looking for suggestions for dealing with and slowing the effects of neuropathy.

Liked by rwinney, fiesty76, Hank

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@madsoann8

This is Naomi, new to the group. Always looking for suggestions for dealing with and slowing the effects of neuropathy.

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Hi @madsoann8, I would like to add my welcome to Connect along with @rwinney, @artscaping, @jesfactsmon, @jimhd and other members. You may find some helpful tips by reading through some of the member experiences in the following discussions.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

There is also a discussion where members share ideas on treatments — Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Are you able to share a little more about your diagnosis and symptoms of neuropathy?

Liked by rwinney

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@madsoann8

This is Naomi, new to the group. Always looking for suggestions for dealing with and slowing the effects of neuropathy.

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Hi Naomi, not sure if you are looking for answers to specific questions or just finding out what people are talking about generally. I happened upon this Connect forum by accident when searching for something or other. After finding it I spent a couple or weeks or more reading through hundreds of the various posts before ever posting myself. I learned quite a bit doing just that. My wife has neuropathy in her feet mostly so I do a bit of online research for her since the internet is not her thing particularly. As John mentioned in the previous post if you share some of your experiences about your own case of neuropathy, perhaps you might get some useful feedback or at least a compassionate ear or two from people here. Look forward to hearing more from you. Best, Hank

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@madsoann8

This is Naomi, new to the group. Always looking for suggestions for dealing with and slowing the effects of neuropathy.

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@madsoann8 Hello Naomi, welcome to Mayo Connect. I'm Rachel and am glad you posted! I noticed you joined in June and appeared to have posted June 30th, as Daisy, but received no reply. My appologies for the oversight. I see @johnbishop and @jesfactsmon have replied so far, asking for a bit more detail on your peripheral neuropathy diagnosis and situation. I have Small Fiber Peripheral Polyneuropathy from B12 deficiency. It's throughout my body and has changed my life drastically. I take Lyrica and Hydrocodone for pain, am on a strict supplement protocol for neuropathy, rightfully called "The Protocol". It has helped settle many unwanted oddities and feelings in my body. I have changed my lifestyle which includes a healthier diet of fruits and vegetables, reducing/eliminating processed and inflammatory foods. Excercise and body movement despite pain or being uncomfortable is imperative for neuropathy. I use a lot of heat and ice, it's my savior. I go to physical therapy once a week and receive myofascial release plus, work on occupational therapy excercises to the best of my ability. Connect is a wonderful group of personal experiences, support, encouragement and empathy. Please dont be shy, share your story and know you are not alone.
Be well,
Rachel

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@rwinney

@madsoann8 Hello Naomi, welcome to Mayo Connect. I'm Rachel and am glad you posted! I noticed you joined in June and appeared to have posted June 30th, as Daisy, but received no reply. My appologies for the oversight. I see @johnbishop and @jesfactsmon have replied so far, asking for a bit more detail on your peripheral neuropathy diagnosis and situation. I have Small Fiber Peripheral Polyneuropathy from B12 deficiency. It's throughout my body and has changed my life drastically. I take Lyrica and Hydrocodone for pain, am on a strict supplement protocol for neuropathy, rightfully called "The Protocol". It has helped settle many unwanted oddities and feelings in my body. I have changed my lifestyle which includes a healthier diet of fruits and vegetables, reducing/eliminating processed and inflammatory foods. Excercise and body movement despite pain or being uncomfortable is imperative for neuropathy. I use a lot of heat and ice, it's my savior. I go to physical therapy once a week and receive myofascial release plus, work on occupational therapy excercises to the best of my ability. Connect is a wonderful group of personal experiences, support, encouragement and empathy. Please dont be shy, share your story and know you are not alone.
Be well,
Rachel

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Hey Rachel, I have a question for you. A few months ago Linda decided to try The Protocol (well, at my insistence). I ordered the whole shebang, a one month supply. She had such an extreme reaction, probably attributable to the high RALA dose, that she rejected the whole thing and became gun shy to go back to it. One of the elements which we still have in our fridge is 3 bottles of help oil. Although I have made suggestions she at least take that to see if it helps her pain level at all but she has not had much interest in taking it. For one thing she is trying to keep her weight under control so she hesitates to ingest any more fats than she needs to. So my question for you is, do you notice a benefit specifically to taking the help oil? Just wondering. Thanks, Hank

Liked by rwinney, fiesty76

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@jesfactsmon

Hey Rachel, I have a question for you. A few months ago Linda decided to try The Protocol (well, at my insistence). I ordered the whole shebang, a one month supply. She had such an extreme reaction, probably attributable to the high RALA dose, that she rejected the whole thing and became gun shy to go back to it. One of the elements which we still have in our fridge is 3 bottles of help oil. Although I have made suggestions she at least take that to see if it helps her pain level at all but she has not had much interest in taking it. For one thing she is trying to keep her weight under control so she hesitates to ingest any more fats than she needs to. So my question for you is, do you notice a benefit specifically to taking the help oil? Just wondering. Thanks, Hank

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@jesfactsmon Good morning Hank. That's a tough call. Not only can I not deal with swallowing oil, I take hemp capsules instead, but when taking so much together, it's hard to decipher what's what. I sort of took matters into my own hands with the Protocol. I asked my neurologist about the myriad of supplements and he would only endorse R-Alpha Lipoic Lipoic Acid and Acetyl L Carnitine, specifically proven to help neuropathy. I had already been taking B12, magnesium, and CoQ10 (separate for migraine) so, I added all the other stuff. I did not even follow the ramp up rules…I just went for it. Maybe not wise for everyone but, my stomach handled it fine and I have not gained weight. I often wonder if the 2 pills my neurologist recommended are whats really helping but, not willing to drop all else to experiment. As I researched each and every vitamin/supplement before taking, I found that for me, nothing posed a concern, and had health benefits beyond neuropathy. During my recent 1 week vacation from the Protocol, I firmly discovered its benefits and got back on with a new found confidence that it helps me. Not sure what Linda's stomach can handle. Maybe try the help oil capsules instead. Tough call. Btw…I have the oil still sitting in my fridge too! it can be used in recipes but, I never think of it. Good wishes to you both!
Rachel

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@jesfactsmon

Hey Rachel, I have a question for you. A few months ago Linda decided to try The Protocol (well, at my insistence). I ordered the whole shebang, a one month supply. She had such an extreme reaction, probably attributable to the high RALA dose, that she rejected the whole thing and became gun shy to go back to it. One of the elements which we still have in our fridge is 3 bottles of help oil. Although I have made suggestions she at least take that to see if it helps her pain level at all but she has not had much interest in taking it. For one thing she is trying to keep her weight under control so she hesitates to ingest any more fats than she needs to. So my question for you is, do you notice a benefit specifically to taking the help oil? Just wondering. Thanks, Hank

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Hi Hank @jesfactsmon, Did you order the ramp up version first for the protocol? It's tough on the body to take 1200 mg daily of R-ALA. There are special instructions for ramping up the R-ALA when first starting the protocol – https://solutions2pnpd.com/wp-content/uploads/2020/07/NEW-Instructions-525.pdf

The weight thing is another story 🙂 It's not really all about fats/calories in daily. I struggled with the hemp oil at first myself – put little bits on salad, messed up a few breakfast smoothies, etc. I don't think the hemp oil alone will decrease pain as it is only one piece of the puzzle (IMHO).

Also attached the Linus Pauling Institute Study on R-ALA. Hope this helps!

Shared files

Linus Pauling R-ALA Study (Linus-Pauling-R-ALA-Study.pdf)

Liked by rwinney, fiesty76, Hank

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@rwinney

@jesfactsmon Good morning Hank. That's a tough call. Not only can I not deal with swallowing oil, I take hemp capsules instead, but when taking so much together, it's hard to decipher what's what. I sort of took matters into my own hands with the Protocol. I asked my neurologist about the myriad of supplements and he would only endorse R-Alpha Lipoic Lipoic Acid and Acetyl L Carnitine, specifically proven to help neuropathy. I had already been taking B12, magnesium, and CoQ10 (separate for migraine) so, I added all the other stuff. I did not even follow the ramp up rules…I just went for it. Maybe not wise for everyone but, my stomach handled it fine and I have not gained weight. I often wonder if the 2 pills my neurologist recommended are whats really helping but, not willing to drop all else to experiment. As I researched each and every vitamin/supplement before taking, I found that for me, nothing posed a concern, and had health benefits beyond neuropathy. During my recent 1 week vacation from the Protocol, I firmly discovered its benefits and got back on with a new found confidence that it helps me. Not sure what Linda's stomach can handle. Maybe try the help oil capsules instead. Tough call. Btw…I have the oil still sitting in my fridge too! it can be used in recipes but, I never think of it. Good wishes to you both!
Rachel

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Okay, thanks @rwinney and @johnbishop for your respective feedbacks. John, yes she did start with the ramp up, but even that proved to be too much for her once she got near up to the full 1200 mg. As for the hemp oil (interesting I spelled it h-e-l-p both times in my first post) I will still try to get her to at least try to do the first bottle and see what effect it has, bad or good. Rachel, I like the fact that you went off and did your own thing, I think that experimentation is always a good thing. When I initially read some of the info on facebook it seemed like the gentleman who is the facilitator was very adamant that it had to be done just a certain way, no deviation, or it wouldn't be very effective. No disrespect intended to him or the facebook group but I say hogwash to that idea. Just not my style. Thanks again yu guys! Best, Hank

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@jesfactsmon

Okay, thanks @rwinney and @johnbishop for your respective feedbacks. John, yes she did start with the ramp up, but even that proved to be too much for her once she got near up to the full 1200 mg. As for the hemp oil (interesting I spelled it h-e-l-p both times in my first post) I will still try to get her to at least try to do the first bottle and see what effect it has, bad or good. Rachel, I like the fact that you went off and did your own thing, I think that experimentation is always a good thing. When I initially read some of the info on facebook it seemed like the gentleman who is the facilitator was very adamant that it had to be done just a certain way, no deviation, or it wouldn't be very effective. No disrespect intended to him or the facebook group but I say hogwash to that idea. Just not my style. Thanks again yu guys! Best, Hank

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Can I get a AMEN! Agreed.

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@rwinney

Can I get a AMEN! Agreed.

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@rwinney Amen. Anything can be tweaked a bit because we are all so different. Five of something may work well for you, but 4 works better for me. I think the pharmaceuticals make the rules, mainly because they don't use the stuff and just want to make money. When I first read about "The Protocol" on Connect I got very excited. Then I looked it up and found it was a VERY EXPENSIVE program and there was a certain way to take it and how it must be followed. I did not nor will I try it. After I saw you had to pay for certain "Beneficial" ingredients I thought of it as a money making possibly scam. When it was first shared on here it sounded more like a program anyone could be involved in. I am very hesitant about "The Protocol". If someone uses it, can afford it and it works for them then a thumbs up to them. I did see my pain management doctor today and she talked about the nerve simulator many of you had talked about. My pain is off the charts especially at night. If I were not connected to Connect I would not have had an idea about what she was talking about. Can I get more information from someone using it- pros/cons. I know this information is already on here, but I am lazy today and don't want to go back and look. Thank you. I do not mean to offend anyone on my thoughts about "The Protocol" If it works continue taking it..

Liked by rwinney, Hank

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@summertime4

@rwinney Amen. Anything can be tweaked a bit because we are all so different. Five of something may work well for you, but 4 works better for me. I think the pharmaceuticals make the rules, mainly because they don't use the stuff and just want to make money. When I first read about "The Protocol" on Connect I got very excited. Then I looked it up and found it was a VERY EXPENSIVE program and there was a certain way to take it and how it must be followed. I did not nor will I try it. After I saw you had to pay for certain "Beneficial" ingredients I thought of it as a money making possibly scam. When it was first shared on here it sounded more like a program anyone could be involved in. I am very hesitant about "The Protocol". If someone uses it, can afford it and it works for them then a thumbs up to them. I did see my pain management doctor today and she talked about the nerve simulator many of you had talked about. My pain is off the charts especially at night. If I were not connected to Connect I would not have had an idea about what she was talking about. Can I get more information from someone using it- pros/cons. I know this information is already on here, but I am lazy today and don't want to go back and look. Thank you. I do not mean to offend anyone on my thoughts about "The Protocol" If it works continue taking it..

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Hi @summertime4 when you say stimulator are you talking about a spinal cord stimulator? Two people who have mentioned having one are @jimhd and @barbbie both of whom had some luck with theirs, And I also remember someone had mentioned having zero luck with theirs and were thinking of having it removed, can't remember who that was. If you put the words spinal cord stimulator into the search box at the top of any page you will find some references made by people anywhere on Connect which you might find helpful also. Best, Hank

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@summertime4

@rwinney Amen. Anything can be tweaked a bit because we are all so different. Five of something may work well for you, but 4 works better for me. I think the pharmaceuticals make the rules, mainly because they don't use the stuff and just want to make money. When I first read about "The Protocol" on Connect I got very excited. Then I looked it up and found it was a VERY EXPENSIVE program and there was a certain way to take it and how it must be followed. I did not nor will I try it. After I saw you had to pay for certain "Beneficial" ingredients I thought of it as a money making possibly scam. When it was first shared on here it sounded more like a program anyone could be involved in. I am very hesitant about "The Protocol". If someone uses it, can afford it and it works for them then a thumbs up to them. I did see my pain management doctor today and she talked about the nerve simulator many of you had talked about. My pain is off the charts especially at night. If I were not connected to Connect I would not have had an idea about what she was talking about. Can I get more information from someone using it- pros/cons. I know this information is already on here, but I am lazy today and don't want to go back and look. Thank you. I do not mean to offend anyone on my thoughts about "The Protocol" If it works continue taking it..

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@summertime4 I hear you and respect your feelings. The Protocol is costly indeed. I never ordered through the site direct. I did my own research, once seeing their game plan, jotted down their recommendations and ordered on my own. I mostly use the brand's they use for high quality but, can be subject to change. Everyone has to do what's best for them in order to get by. I hope you at least are able to look into the most essential parts of the Protocol like, R -Alpha Lipoic Acid and Acetyl L Carnitine. Maybe ask your Neurologist what he recommends as bare bones and what you can afford. Something may be better than nothing when it comes to your painful neuropathy. I wish you well and am glad you chimed in. Take care.
Rachel

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@rwinney

@madsoann8 Hello Naomi, welcome to Mayo Connect. I'm Rachel and am glad you posted! I noticed you joined in June and appeared to have posted June 30th, as Daisy, but received no reply. My appologies for the oversight. I see @johnbishop and @jesfactsmon have replied so far, asking for a bit more detail on your peripheral neuropathy diagnosis and situation. I have Small Fiber Peripheral Polyneuropathy from B12 deficiency. It's throughout my body and has changed my life drastically. I take Lyrica and Hydrocodone for pain, am on a strict supplement protocol for neuropathy, rightfully called "The Protocol". It has helped settle many unwanted oddities and feelings in my body. I have changed my lifestyle which includes a healthier diet of fruits and vegetables, reducing/eliminating processed and inflammatory foods. Excercise and body movement despite pain or being uncomfortable is imperative for neuropathy. I use a lot of heat and ice, it's my savior. I go to physical therapy once a week and receive myofascial release plus, work on occupational therapy excercises to the best of my ability. Connect is a wonderful group of personal experiences, support, encouragement and empathy. Please dont be shy, share your story and know you are not alone.
Be well,
Rachel

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Thank you Rachel for your reply. I am 93 years old and have been dealing with peripheral neuropathy for 5 years. I have been through physical therapy twice and then set up with a trainer at a gym. Now that the gym is no longer available I find the neuropathy expanding. I do avoid processed foods and consume a number of supplements, including ALA and a number of B vitamins. I am finding sleep difficult now with the uncomfortable feeling of movement up and down my legs and burning in the feet. Any suggestions?

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