Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@darlingtondoll I,ll have to look it up to see what it is . The Topricin helps me but always looking for other things Have a good day

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@jesfactsmon

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

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I take a pill called Isosorbide dinitrate every day for my heart. Penetrex is great when I have burning pain on my legs and hips.

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@jesfactsmon

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

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@jesfactsmon I'm going to google the treatments you mentioned. Thanks for telling us about them.

jim

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@rwinney

@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

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@rwinney I look forward to hearing what pcs does for you.

Jim

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@jimhd

@rwinney I look forward to hearing what pcs does for you.

Jim

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@jimhd Hi Jim. How ya doing? You know I will report back for sure. 😊

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@rwinney

@jimhd Hi Jim. How ya doing? You know I will report back for sure. 😊

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@rwinney, Did I just read that you are going to get to go to the Pain Clinic in Florida? Well, let the trumpets blare and the drums start rolling. Let's get packing.

Your post is more revealing about what was going on during your four-year search for acceptance of the hand you have been dealt. Some of us worry quietly, others, like you, just dig in, do the research, try it out, and then evaluate its potential. Wow, it is probably easier to win an Academy Award than to make it to Rachel's recommended list.

Just keep that big warm heart that you have open to opportunities and willing to share.

Congratulations,
Chris

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@artscaping

@rwinney, Did I just read that you are going to get to go to the Pain Clinic in Florida? Well, let the trumpets blare and the drums start rolling. Let's get packing.

Your post is more revealing about what was going on during your four-year search for acceptance of the hand you have been dealt. Some of us worry quietly, others, like you, just dig in, do the research, try it out, and then evaluate its potential. Wow, it is probably easier to win an Academy Award than to make it to Rachel's recommended list.

Just keep that big warm heart that you have open to opportunities and willing to share.

Congratulations,
Chris

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@artscaping Can you love someone that you dont actually know? Because, I think I love you Chris!!! 😊You're the best! Thanks for being so uniquely you.
I'm hopeful and very willing to share anything and everything I learn with hope that it can help someone elses journey.

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@artscaping

@rwinney, Did I just read that you are going to get to go to the Pain Clinic in Florida? Well, let the trumpets blare and the drums start rolling. Let's get packing.

Your post is more revealing about what was going on during your four-year search for acceptance of the hand you have been dealt. Some of us worry quietly, others, like you, just dig in, do the research, try it out, and then evaluate its potential. Wow, it is probably easier to win an Academy Award than to make it to Rachel's recommended list.

Just keep that big warm heart that you have open to opportunities and willing to share.

Congratulations,
Chris

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I would just like to add to Chris's comment that I feel honored to "know" you ALL of you guys. Through this neuropathy journey my wife and I are on I have learned to have a deep respect for the genuine goodness in people. It's easy to become cynical in this world. So meeting all of you on this forum is revealing to me that there is much to be valued in our fellow humans, despite what we see everyday in the media.

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@jesfactsmon

I would just like to add to Chris's comment that I feel honored to "know" you ALL of you guys. Through this neuropathy journey my wife and I are on I have learned to have a deep respect for the genuine goodness in people. It's easy to become cynical in this world. So meeting all of you on this forum is revealing to me that there is much to be valued in our fellow humans, despite what we see everyday in the media.

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Hank, you have said so perfectly what I have often thought but not said. I am very grateful to have available the shared knowledge, experience and caring this forum affords us. I would also like to add my heartfelt thanks to all. Helen

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@jesfactsmon

I would just like to add to Chris's comment that I feel honored to "know" you ALL of you guys. Through this neuropathy journey my wife and I are on I have learned to have a deep respect for the genuine goodness in people. It's easy to become cynical in this world. So meeting all of you on this forum is revealing to me that there is much to be valued in our fellow humans, despite what we see everyday in the media.

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Well said Hank and I whole heartedly agree with you.

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