Anyone here dealing with peripheral neuropathy?

Would you know if there is a dispensary near Port Charlett, Fla or Englewood , Florida

Would you know if there is a dispensary near Port Charlett, Fla or Englewood , Florida

Hi Gang, I woke up this morning with renewed disgust at my wife's ridiculous situation, facing a lifetime prison of pain thanks to doctors who forcefully pushed her into chemotherapy and at very heavy doses (carboplatin and taxotere). I can't believe that one innocuous decision back in 2014 to listen to them and go ahead with that has put her (and I) in this strange place we now find ourselves in. Ugh! Anyway, the first thing I did, in my pissed off (excuse the expression) state was, of course, get back online to continue the never ending search for SOMETHING to unlock the door to this prison. Two things have come up in my first few minutes on the computer this morning that I have not heard of yet, unbelievably. The first is some product called Penetrex that has been around a while it looks like. Read the reviews on Amazon, and like other things, some neuropathy sufferers swear by it and a few say it's useless. The second thing I came across is something called "isosorbide dinitrate spray" which is mentioned as a possible help to neuropathy pain, but although I see a series of medical links regarding it, I can find no commercially available products. So, if anyone has any experience with either of these I would be interested to hear about it. Thanks in advance for any feedback you might have on either thing. -Hank

Hi Hank @jesfactsmon, I think we can all relate to your struggle to find something that works for your wife to relieve the pain. I've not heard of Penetrex but it looks like it contains some of the same ingredients of creams and salves that I tried over the years for my PN except I was hoping it would help for numbness which it did not. I don't have pain so am not able offer any validation. The only thing I can say is you really have to research anything you try (which you are doing!) as there are so many companies out there selling snake oil. Here are some links I use for my research:

Quazar's 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/ProtectYourself/HealthFraud/ucm539101.htm

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

I recently started a new discussion - Have you tried the new Protocol 525 product for neuropathy relief? to see if others that are using the product can share their experience with it. Here is the link to the discussion: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

@rwinney, @jimhd, @artscaping and others may have some suggestions for you also.

Actually John, my wife started the FB Protocol about a month ago and I think it was the high dose of R Lipoic Acid (or perhaps it was the hemp oil, who knows?) that set her into a much deeper level of pain than she had ever experienced in 6 years of dealing with this. I had read about "the awakening" that is supposed to explain this additional pain, but she just could not tolerate it and after 5 days she quit (by that last day she was in a panic at her pain level). In the intervening 4 weeks since she is still at a heightened state of pain than before. Bob, the person who seems to be the The Protocol head honcho, tries to shame anyone who decides to quit into staying with it and just having faith, but when faced with such extreme pain all of a sudden it's just not possible. I did all the upfront research, not my wife, and I guess I initially didn't tell her that for a few people the pain gets worse in the beginning (hoping she would not fall into that category) and when it happened she was upset with both the Protocol and me for a while as well. When you invest yourself in something that is touted to be "the answer" you are just not expecting to get MUCH worse right away. So that is number 73 on my list of Tales of Woe regarding all the potential cures we have tried out and discarded, as reflected by my Amazon order history. But John, I know from the FB group that some people have benefitted from The Protocol so I am not knocking it, just saying it did not work for us. Thanks, Hank

Hi Gang, I woke up this morning with renewed disgust at my wife's ridiculous situation, facing a lifetime prison of pain thanks to doctors who forcefully pushed her into chemotherapy and at very heavy doses (carboplatin and taxotere). I can't believe that one innocuous decision back in 2014 to listen to them and go ahead with that has put her (and I) in this strange place we now find ourselves in. Ugh! Anyway, the first thing I did, in my pissed off (excuse the expression) state was, of course, get back online to continue the never ending search for SOMETHING to unlock the door to this prison. Two things have come up in my first few minutes on the computer this morning that I have not heard of yet, unbelievably. The first is some product called Penetrex that has been around a while it looks like. Read the reviews on Amazon, and like other things, some neuropathy sufferers swear by it and a few say it's useless. The second thing I came across is something called "isosorbide dinitrate spray" which is mentioned as a possible help to neuropathy pain, but although I see a series of medical links regarding it, I can find no commercially available products. So, if anyone has any experience with either of these I would be interested to hear about it. Thanks in advance for any feedback you might have on either thing. -Hank

Hi Hank @jesfactsmon, I think we can all relate to your struggle to find something that works for your wife to relieve the pain. I've not heard of Penetrex but it looks like it contains some of the same ingredients of creams and salves that I tried over the years for my PN except I was hoping it would help for numbness which it did not. I don't have pain so am not able offer any validation. The only thing I can say is you really have to research anything you try (which you are doing!) as there are so many companies out there selling snake oil. Here are some links I use for my research:

Quazar's 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/ProtectYourself/HealthFraud/ucm539101.htm

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

I recently started a new discussion - Have you tried the new Protocol 525 product for neuropathy relief? to see if others that are using the product can share their experience with it. Here is the link to the discussion: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

@rwinney, @jimhd, @artscaping and others may have some suggestions for you also.

@jesfactsmon Dear Hank, I have witnessed my husband's frustrations over my pain and dysfunctional state. Although he is not a researcher like yourself (highly commendable by the way), he does care deeply. Hey, my life directly effects his life, my inabilities curb his abilities. He's held up tough for me but wants to take it all away, for me, for us. I do not have any solid answer for you or your wife but, will say this...it took me 4 years to come to my current conclusion of there is no magic pill, there us no magic procedure or potion, there is no cure at this time. All I'm left with when I look in the mirror is - this is me now, noone wants to come to my rescue, so what the hell am i going to do about it??? I cant speak for your wife or her individual pain but, i decided to think out of the box and dig deeper in to my brains neuroplasticity and what changes I can make to undo the current way my body interprets my disease, my pain, my daily existence. I have no idea if I'm up for this type challenge but I've got nothing to lose. While you continue your research for products maybe your wife (if able and willing) would be up for reading Life After Pain by Dr. Jonathan Kuttner. It's based on mind/body as a whole. I try real hard to keep hope alive because I simply dont like living this way. I have no clue if my endurance is there, if I'm fully committed, if I'm completely sold on these theories but, I have to try another approach because the current one ain't doing enough and I want a better life back! I appreciate your care and concern for your wife so much. I'm sure she knows how lucky she is to have you. As a team, you and she can keep hope alive as well and I wish you both all the best in your quest to resolve this upheaval of life. I just got word today (after 2 virtual interviews with Drs) that the Mayo Pain Rehabilitation program is reopening, since Covid shut it down, and I'm getting a call today to FINALLY schedule my appointment and 3 week stay. Hotels in Florida opening today, I'm told. So there I will head with all the hope in the world for a better outcome. If you haven't, please go to Mayo's website and watch Dr. Sletton's video on Pain Central Sensitization and see if it applies to your wife and might bring value to her situation. Good luck sir and keep us posted. All the best, Rachel

Hi Hank @jesfactsmon, I think we can all relate to your struggle to find something that works for your wife to relieve the pain. I've not heard of Penetrex but it looks like it contains some of the same ingredients of creams and salves that I tried over the years for my PN except I was hoping it would help for numbness which it did not. I don't have pain so am not able offer any validation. The only thing I can say is you really have to research anything you try (which you are doing!) as there are so many companies out there selling snake oil. Here are some links I use for my research:

Quazar's 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/ProtectYourself/HealthFraud/ucm539101.htm

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

I recently started a new discussion - Have you tried the new Protocol 525 product for neuropathy relief? to see if others that are using the product can share their experience with it. Here is the link to the discussion: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

@rwinney, @jimhd, @artscaping and others may have some suggestions for you also.