What do you do for Neuropathy itch?

Good morning everyone. I am desperately in need of help with what is called Neuropathy itch. I have SFN (small fiber neuropathy) and am a medical cannabis user for pain. I don’t know what to use for this itching. It appears that it reaches through several skin layers. No matter how much you scratch you make it worse, not better. Once you start itching, it’s over….your are stuck scratching.

Have you tried certain baths? Oatmeal? I have a steroid cream called Triamcinolone Acetonide. Not exactly a wonder drug. Is there a better one?

The itching results in a terrible level of anxiety. I try to run away from it and cannot. It reminds me of summer in Minnesota when the mosquitoes launch their attacks. I am female with “O” negative blood which they just devour.

Even if you have a solution for other than neuropathy, please share and I will happily do the research. The stress of isolated living and a form of depression that is about our global community also creeps in.

The only thing that works right now for food is gelato…….Salted caramel, if you please. I hope you are all well and blessed with good health today.
Chris

Please read my article on itching, approx July/ August of this year. After many years of torment, especially at night, plus many visits to doctors and specialists, trying every type of cream or whatever, and as I have Peripheral-neuropathy I decided the only answer from the best research on the subject by leading Neurologists in the world is the practice of Neuroplasticity. After two days of practice the itch vanished and has not returned. I still get the minor urge to scratch it, but never respond with a scratch. The rest of my body is itchy at times, but ever again will I scratch. GONE !

REPLY
@bjbednarz

Is the anti-itch cream at CVS a prescription. Can you give me the name?

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@bjbednarz, @lorirenee, If you want an OTC…one of the recommended ones is Sarna Sensitive. This is a relatively new version of Sarna with the addition of Pramoxine Hydrochloride which my dermatologist thought might work better. Try it………

The Rx topical is Triamcinolone Acetonide Cream. This one works best for me so far. I rub it on my arms & back of hands. Then I put the ski sleeves over them so I don't unknowingly scratch during the night. You can get the sleeves at Scheel's or Dick's Sporting Goods. This is my best shot for making it through the night and into the day. A word of warning, however…..this medication can thin your skin.

There is also an essential oil called Adaptive. It works when you are in a hurry. Let it dry and make sure you have no open areas as in those you have scratched……or it will burn. (Makes me wonder why.) This is very light and best for walking out to get the mail or in the morning before Yoga.

I think when we give out these names of things we have tried, you must take it lightly. None of these are curing the itch from within. The nighttime Rx that seems to help me is Doxepine…..this is not a topical, it is a capsule that you take a bedtime. It has helped. There are as needed OTC capsules like Benedryl. The neuropathic itch right now is being studied and better medications are being tested. Until then, it seems best to keep trying to develop a routine that works for different situations.

@lorirenee1, is there anything else you would add? And that is another thing. There is nothing in a jar or tube that is going to help you more than @lorirenee and others who have been living with this anguish producing affliction. Stay on Connect…..participate and share. We all watch out for each other.

May you both be free of suffering and the causes of suffering.
Chris

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@bjbednarz

I've tried multiple anti-itch creams and lotions. I found online a nerve-itch cream. It didn't work either. Aspercreme with Lidocaine is the only thing that helps. It advertises that it calms inflamed nerve endings, and it does do just that. It just does not last very long.

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Hi @bjbednarz , as Chris @artscaping points out, people suffering from neuropathic itch have tried all sorts of things to deal with it, and many develop their own regimen of what works for them. My wife (who has PN in her feet/ankles) is tormented from time to time by this very intense, excruciating itch that seems to come from inside of her feet, not the skin but actually inside, therefore scratching does nothing and topicals mostly do not help. The first time it happened it brought from her a cascade of desperate tears and sobs, even screams. I couldn't believe what I was watching, it was horrifying.

Of the topicals that she has tried the only one that has given SOME temporary relief is Aveeno Hydrocortisone Cream. But topicals have not been that helpful. But what has helped her a lot the past 18 months has been a vibrator applied to her feet when the itching is happening. She has two different vibrators, one being a hand held that has a deep vibration. The other is a sonicare toothbrush. I know it sounds weird, but it has been the most helpful of anything she has found overall. She does not use the bristle side but the back side of the brush against her feet. I already posted a detailed description of how she came to use it, linked here: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/?pg=2#comment-394931

Before you dismiss this idea out of hand as sounding too nutty, just think about it, especially if you happen to own a sonicare to test this out (she now has an extra one she keeps handy dedicated just for the itch). Before she tried it I was VERY skeptical, but somehow it worked. And still does, not always but I would say usually. And when it does work the itch will, more often than not, subside completely.

Best, Hank

REPLY
@artscaping

@bjbednarz, @lorirenee, If you want an OTC…one of the recommended ones is Sarna Sensitive. This is a relatively new version of Sarna with the addition of Pramoxine Hydrochloride which my dermatologist thought might work better. Try it………

The Rx topical is Triamcinolone Acetonide Cream. This one works best for me so far. I rub it on my arms & back of hands. Then I put the ski sleeves over them so I don't unknowingly scratch during the night. You can get the sleeves at Scheel's or Dick's Sporting Goods. This is my best shot for making it through the night and into the day. A word of warning, however…..this medication can thin your skin.

There is also an essential oil called Adaptive. It works when you are in a hurry. Let it dry and make sure you have no open areas as in those you have scratched……or it will burn. (Makes me wonder why.) This is very light and best for walking out to get the mail or in the morning before Yoga.

I think when we give out these names of things we have tried, you must take it lightly. None of these are curing the itch from within. The nighttime Rx that seems to help me is Doxepine…..this is not a topical, it is a capsule that you take a bedtime. It has helped. There are as needed OTC capsules like Benedryl. The neuropathic itch right now is being studied and better medications are being tested. Until then, it seems best to keep trying to develop a routine that works for different situations.

@lorirenee1, is there anything else you would add? And that is another thing. There is nothing in a jar or tube that is going to help you more than @lorirenee and others who have been living with this anguish producing affliction. Stay on Connect…..participate and share. We all watch out for each other.

May you both be free of suffering and the causes of suffering.
Chris

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The Doxepin did not help me. The only thing that has helped are products containing Lidocaine.

REPLY
@artscaping

@bjbednarz, @lorirenee, If you want an OTC…one of the recommended ones is Sarna Sensitive. This is a relatively new version of Sarna with the addition of Pramoxine Hydrochloride which my dermatologist thought might work better. Try it………

The Rx topical is Triamcinolone Acetonide Cream. This one works best for me so far. I rub it on my arms & back of hands. Then I put the ski sleeves over them so I don't unknowingly scratch during the night. You can get the sleeves at Scheel's or Dick's Sporting Goods. This is my best shot for making it through the night and into the day. A word of warning, however…..this medication can thin your skin.

There is also an essential oil called Adaptive. It works when you are in a hurry. Let it dry and make sure you have no open areas as in those you have scratched……or it will burn. (Makes me wonder why.) This is very light and best for walking out to get the mail or in the morning before Yoga.

I think when we give out these names of things we have tried, you must take it lightly. None of these are curing the itch from within. The nighttime Rx that seems to help me is Doxepine…..this is not a topical, it is a capsule that you take a bedtime. It has helped. There are as needed OTC capsules like Benedryl. The neuropathic itch right now is being studied and better medications are being tested. Until then, it seems best to keep trying to develop a routine that works for different situations.

@lorirenee1, is there anything else you would add? And that is another thing. There is nothing in a jar or tube that is going to help you more than @lorirenee and others who have been living with this anguish producing affliction. Stay on Connect…..participate and share. We all watch out for each other.

May you both be free of suffering and the causes of suffering.
Chris

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@artscaping Hi Chris, thanks so much for your helpful input. I will check out the Sarna Sensitive. I wish I could think of something more to offer the discussion, but I can't think of a thing!!!! Thanks so much, for sharing. LoriRenee1

REPLY
@jesfactsmon

Hi @bjbednarz , as Chris @artscaping points out, people suffering from neuropathic itch have tried all sorts of things to deal with it, and many develop their own regimen of what works for them. My wife (who has PN in her feet/ankles) is tormented from time to time by this very intense, excruciating itch that seems to come from inside of her feet, not the skin but actually inside, therefore scratching does nothing and topicals mostly do not help. The first time it happened it brought from her a cascade of desperate tears and sobs, even screams. I couldn't believe what I was watching, it was horrifying.

Of the topicals that she has tried the only one that has given SOME temporary relief is Aveeno Hydrocortisone Cream. But topicals have not been that helpful. But what has helped her a lot the past 18 months has been a vibrator applied to her feet when the itching is happening. She has two different vibrators, one being a hand held that has a deep vibration. The other is a sonicare toothbrush. I know it sounds weird, but it has been the most helpful of anything she has found overall. She does not use the bristle side but the back side of the brush against her feet. I already posted a detailed description of how she came to use it, linked here: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/?pg=2#comment-394931

Before you dismiss this idea out of hand as sounding too nutty, just think about it, especially if you happen to own a sonicare to test this out (she now has an extra one she keeps handy dedicated just for the itch). Before she tried it I was VERY skeptical, but somehow it worked. And still does, not always but I would say usually. And when it does work the itch will, more often than not, subside completely.

Best, Hank

Jump to this post

@jesfactsmon Oh my goodness. Linda has also been in itch anguish, complete with sobs and screams. Jay saw this and was also shocked. He lay me down on the cool tile floor and began just to rub my body all over. He is not a therapist and yet somehow all of a sudden he had the "gift". Once it was released I fell into bed…with an extra dose of my nighttime medical cannabis. The inside pain is just excruciating. Has she had another incident? If not, how have you prevented it? Does the toothbrush work for inside pain? I can't seem to make it work for me.
Thanks for participating in this amazingly horrible affliction. Let's see what else we can find that has potential.
May you be safe and protected.
Chris

REPLY

Good afternoon @bjbednarz, I woke up this morning, anxious to see if you had posted. As I read about your failed attempts, I realized that maybe we need to know more about neuropathy and the itch. I actually had a compounded lidocaine created for me by my neurologist. He kept making adjustments with the compounding pharmacist. It worked briefly for pain,

So…I got out my research and re-read everything. I am going to share the links that helped me understand how difficult it is to find a solution. Perhaps there is some knowledge here in the research that can tell you why a scavenger hunt for the perfect topical….or the nighttime capsule just won't work because the science behind them doesn't take into account the things they are learning about Neuropathic itch. Please for your own sanity read this research from Harvard Medical School called Itch and the Brain.
https://hms.harvard.edu/news/itch-brain.
According to the author Scott Edwards, itch runs along a neuronal interstate highway system that links the skin, the spinal cord, and the brain. This phenomenon is explained by Dr. Ma, a Harvard professor of neurobiology. The viewpoints and research of Anne Louise Oaklander, a very renowned clinician, are included. She summarizes that "diagnosis is difficult because there are many forms of neuropathic itch, to include: focal vs widespread, and peripheral vs central."

Let me know what you think of this research and projections. I have another one to follow about pruritus therapies.

And I do suggest that you become acquainted with neuroplasticity and its potential for changing the way our brain reacts to the itch signals. There is some hope that we can learn to reorient our brains. We call this practicing mindfulness or even mindful meditation. I have been able to control some of the external itches but am still not good enough to handle the internal ones.

May you be free of suffering and the causes of suffering.
Chris. @lorirenee1 @jesfactsmon

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Good Afternoon, I've had two different Lidocaine compounds made for me, but neither of them worked as well as the Aspercreme. The benefit only lasts a couple of hours, but anything to give some relief is a blessing. I read the information in the link and I think I'm going to email it to my dermatologist. She keeps trying to give me more oral medicine to break the itch cycle, and it just doesn't work. I had an MRI of my brain, but the doctor said she saw nothing to indicate a problem.

REPLY
@artscaping

Good afternoon @bjbednarz, I woke up this morning, anxious to see if you had posted. As I read about your failed attempts, I realized that maybe we need to know more about neuropathy and the itch. I actually had a compounded lidocaine created for me by my neurologist. He kept making adjustments with the compounding pharmacist. It worked briefly for pain,

So…I got out my research and re-read everything. I am going to share the links that helped me understand how difficult it is to find a solution. Perhaps there is some knowledge here in the research that can tell you why a scavenger hunt for the perfect topical….or the nighttime capsule just won't work because the science behind them doesn't take into account the things they are learning about Neuropathic itch. Please for your own sanity read this research from Harvard Medical School called Itch and the Brain.
https://hms.harvard.edu/news/itch-brain.
According to the author Scott Edwards, itch runs along a neuronal interstate highway system that links the skin, the spinal cord, and the brain. This phenomenon is explained by Dr. Ma, a Harvard professor of neurobiology. The viewpoints and research of Anne Louise Oaklander, a very renowned clinician, are included. She summarizes that "diagnosis is difficult because there are many forms of neuropathic itch, to include: focal vs widespread, and peripheral vs central."

Let me know what you think of this research and projections. I have another one to follow about pruritus therapies.

And I do suggest that you become acquainted with neuroplasticity and its potential for changing the way our brain reacts to the itch signals. There is some hope that we can learn to reorient our brains. We call this practicing mindfulness or even mindful meditation. I have been able to control some of the external itches but am still not good enough to handle the internal ones.

May you be free of suffering and the causes of suffering.
Chris. @lorirenee1 @jesfactsmon

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Chris and @bjbednarz , I can't stand that you both suffer from this horrible situation! I so hope and pray you find something to bring you lasting relief! This disease is so brutal and brings so much suffering! I will be upholding you both in my prayers that you will find comfort and relief ASAP and that it will last and be very affordable and assessable! Warmest wishes, Sunnyflower

REPLY
@artscaping

@jesfactsmon Oh my goodness. Linda has also been in itch anguish, complete with sobs and screams. Jay saw this and was also shocked. He lay me down on the cool tile floor and began just to rub my body all over. He is not a therapist and yet somehow all of a sudden he had the "gift". Once it was released I fell into bed…with an extra dose of my nighttime medical cannabis. The inside pain is just excruciating. Has she had another incident? If not, how have you prevented it? Does the toothbrush work for inside pain? I can't seem to make it work for me.
Thanks for participating in this amazingly horrible affliction. Let's see what else we can find that has potential.
May you be safe and protected.
Chris

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Hi Hank, Christ and @bjbednarz, first of all Hank, I had no idea Linda is suffering from this itch situation too! I'm so far behind on my messages so please forgive. Boy what you all are going through sounds intolerable and brutal!!! I will be upholding you ALL in prayer that you will find just the right thing to work for you all and again, that it is easily accessable and affordable and that your doctors validate you and better yet if they are not educated in this than they will research and learn from your experiences so they can help other patients and even share what they've learned with other doctors. I'm not happy w/ my neurologist. She is nice but so blaze and seems clueless. Warmest wishes, Sunnyflower

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@bjbednarz

The Doxepin did not help me. The only thing that has helped are products containing Lidocaine.

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Hello bjbednarz, @lorirenee1 , @artscapint, I have a lidocaine 4% "solution". It's very liquid like water. I use a Q-tip to apply it. It is the strangest stuff but I think works somewhat. It's worth a try. I also have 5% lido patches for my painful back. The 4% are OTC but I find the 5% work better, Problem is, they cost a fortune!!! Just a thought……All the best, Sunnyflower

REPLY
@artscaping

@jesfactsmon Oh my goodness. Linda has also been in itch anguish, complete with sobs and screams. Jay saw this and was also shocked. He lay me down on the cool tile floor and began just to rub my body all over. He is not a therapist and yet somehow all of a sudden he had the "gift". Once it was released I fell into bed…with an extra dose of my nighttime medical cannabis. The inside pain is just excruciating. Has she had another incident? If not, how have you prevented it? Does the toothbrush work for inside pain? I can't seem to make it work for me.
Thanks for participating in this amazingly horrible affliction. Let's see what else we can find that has potential.
May you be safe and protected.
Chris

Jump to this post

Chris @artscaping I need to clarify something. I think the reason the soncicare is so effective for Linda is that she only has PN in her feet & ankles. I don't think the sonicare would work as well in parts of the body where there is more fat tissue. Feet are mostly skin over bone on the tops and some pretty firm and tough skin on the bottoms. If one were to use it in certain other areas, like the stomach or the thigh, for example, it might not work so well. Just my theory. I don't know for sure as Linda only does it on her feet/ankles. Another thing is, even though the itch feels deep in her feet, deep is a relative term. I mean the deepest part of a foot is only a few centimeters in whereas a deep itch in the torso can be inches deep. I know this is pointing out the obvious but just to complete the explanation of why the sonicare works on feet but maybe not as well elsewhere.

She had this the worst during the April-June 2019 timeframe. That was when it was the most severe, and for her scary as it was SO intense. It seemed to become less regular and more sporadic after that (helped by the sonicare), with bouts occurring and then stopping. But she got into the habit early on of NEVER giving in to the scratching impulse so that probably helped too. At this point I think it has become a less prominent component in her overall constellation of problems.

Best, Hank

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