Living with Neuropathy - Welcome to the group

@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

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

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

@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

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

Can I get a AMEN! Agreed.

@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..

@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..

@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

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?