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

@chandyjohn1

I am an 83 year old male living in India. I have been having Neuropathic itch, mainly in my legs in a minor way for the past few years, which I usually get over by a firm rub. Occasionally, when the itch becomes severe, I apply TENOVATE a cream manufactured and marketed by GlaxoSmithKline, which eliminates the itch in just one application. Please write if you need any other information.

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@chandyjohn1, Good morning. Thank you so much for responding to my distress call. I did look up Tenovate and I am glad it works for you. At this point in time, I am waiting for my dermatologist and PCP to review the images and get back to me. Maybe an itch free night.
Be safe and protected.
Chris

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Dear Chris, Please let me know what your dermatologist tells you about Tenovate or anything else. Chandy

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@lorirenee1

@artscaping Hi Chris, I am so sorry you itch. I do too, almost everyday, and some days, it is unbearable. Thank God, I can use an anti histamine, and it goes away. Benadryl seems to work best. I think I have itch from 2 sources, though. I am sure the neuropathy gives me itchy feet, and sometimes, I itch, here and there, all over. I think this may be from Kratom or Medical Marijuana, or both. They are plants, so of course, I may be a bit allergic to them. However, I must take them, or cry a lot. I do not know if you have tried an anti histamine, but it does work for me. CVS also sells an anti itch crème. It actually calls it an anti itch crème, and it works. It is not the over the counter steroid cream. That does not work at all for me. Very best of luck. Itching can really drive you nuts. Terrible. Thanks for all of your help, all of the time. Stay safe. Lori Renee

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Hey there @lorirenee1, I knew you would have a total understanding of the itch wall I just ran into. My dermatologist and PCP are collaborating. I took Benedryl last weekend. You say that works best. I will replenish.

Lori, how often do you get this SFN itch or whatever it is called? Do you have any warnings? What makes you think it is from Medical Cannabis? I actually found that a 3:1 THC/CBD balm on my entire body after a warm shower helped. So I calculated that at a jar a day times 5 days would be $165. Whew…….Maybe I should start with the anti-itch creme. Thanks for responding and keep an eye out for Chris's miracle itch drug. That's my next project.

Be content and at ease today.
Chris

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@chandyjohn1

Dear Chris, Please let me know what your dermatologist tells you about Tenovate or anything else. Chandy

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@chandyjohn1 Hi there, of course I will. Everyone has been wonderful. I have replayed some more info to @loirenee1 in the next post. If there is anything you find helpful let me know….or just contact @lorirenee1
Be content and at ease today.
Chris

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Hi Chris @artscaping @chandyjohn1 @stobie2019 @lorirenee1 @rwinney and any other itch sufferers, I am still relatively new to Connect and have not ventured out to other discussions besides the first one I have been posting to, but read John Bishop's request for people to post their neuropathy stories, then went to the main neuropathy question page and saw your discussion about neuropathic itch. My wife Linda is the neuropathy sufferer in our family, not me. It has been localized to her feet since 2014. Around April or so of 2019 she had an attack of very severe deep itch in her feet. I remember it well as I was in the kitchen preparing our dinner when she started having trouble and in very short order was sobbing with torment from this itch that was so deep in her feet that she could not even get any relief from scratching at all. After this whole new issue began I started reading online about people suffering from itch, whether from neuropathy or fibromyalgia or whatever. I found some good forums (this is before I knew about Connect). On one post by someone they mentioned that they had used a vibrator of some sort. That got me to thinking, "do we have some sort of vibrator around the house?" Nothing came to mind. At some point it occurred to me that my Sonicare toothbrush is sort of a vibrator. I assumed it probably would not help Linda but decided to ask her if she was interested in trying to use it on her itch areas. She was also skeptical, but she was desperate enough to try it anyway. So she turned on the Sonicare toothbrush with the brush attached and held the backside of the brush (the hard plastic part not the bristles) to her foot and started to move it back and forth over an itchy area. To our shared surprise this actually stopped the itch. From then on she has kept a Sonicare toothbrush with its charge stand on the table next to where she sits in the living room. I can't begin to tell you how much she has used it since and the amount of relief it has given her. Since then she has also acquired another vibrator that has a slower deeper vibration. Sonicares vibrate at about 5000 rpm's and this other one is probably a tenth of that but it is stronger. Here is the Amazon link to that one: https://smile.amazon.com/gp/product/B018U6Q1V2/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I don't know if you Chris or anyone else would benefit from the Sonicare idea but I wanted to make sure I told you just in case it might be helpful info to you. I know there have been times when her itch has not been helped by the Sonicare but I also know that it consistently has been a big help many many times and continues to be.

Aside from the Sonicare she has also gotten relief at times from Aveeno cream (purchased at Walmart). That seems to be pretty consistently helpful. She also used to use a DMSO gel and liked it for a while but at some point it stopped helping. One thing she learned early on was NOT TO SCRATCH. She will use all of her willpower that she can muster to not scratch because that is just a losing battle and totally counterproductive she has found. This itch caught us both completely off guard and coincided with a worsening of all of her neuropathy symptoms. She has since been housebound and has not been out more than a couple of times in the last ten months. Regards, Hank

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@jesfactsmon

Hi Chris @artscaping @chandyjohn1 @stobie2019 @lorirenee1 @rwinney and any other itch sufferers, I am still relatively new to Connect and have not ventured out to other discussions besides the first one I have been posting to, but read John Bishop's request for people to post their neuropathy stories, then went to the main neuropathy question page and saw your discussion about neuropathic itch. My wife Linda is the neuropathy sufferer in our family, not me. It has been localized to her feet since 2014. Around April or so of 2019 she had an attack of very severe deep itch in her feet. I remember it well as I was in the kitchen preparing our dinner when she started having trouble and in very short order was sobbing with torment from this itch that was so deep in her feet that she could not even get any relief from scratching at all. After this whole new issue began I started reading online about people suffering from itch, whether from neuropathy or fibromyalgia or whatever. I found some good forums (this is before I knew about Connect). On one post by someone they mentioned that they had used a vibrator of some sort. That got me to thinking, "do we have some sort of vibrator around the house?" Nothing came to mind. At some point it occurred to me that my Sonicare toothbrush is sort of a vibrator. I assumed it probably would not help Linda but decided to ask her if she was interested in trying to use it on her itch areas. She was also skeptical, but she was desperate enough to try it anyway. So she turned on the Sonicare toothbrush with the brush attached and held the backside of the brush (the hard plastic part not the bristles) to her foot and started to move it back and forth over an itchy area. To our shared surprise this actually stopped the itch. From then on she has kept a Sonicare toothbrush with its charge stand on the table next to where she sits in the living room. I can't begin to tell you how much she has used it since and the amount of relief it has given her. Since then she has also acquired another vibrator that has a slower deeper vibration. Sonicares vibrate at about 5000 rpm's and this other one is probably a tenth of that but it is stronger. Here is the Amazon link to that one: https://smile.amazon.com/gp/product/B018U6Q1V2/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I don't know if you Chris or anyone else would benefit from the Sonicare idea but I wanted to make sure I told you just in case it might be helpful info to you. I know there have been times when her itch has not been helped by the Sonicare but I also know that it consistently has been a big help many many times and continues to be.

Aside from the Sonicare she has also gotten relief at times from Aveeno cream (purchased at Walmart). That seems to be pretty consistently helpful. She also used to use a DMSO gel and liked it for a while but at some point it stopped helping. One thing she learned early on was NOT TO SCRATCH. She will use all of her willpower that she can muster to not scratch because that is just a losing battle and totally counterproductive she has found. This itch caught us both completely off guard and coincided with a worsening of all of her neuropathy symptoms. She has since been housebound and has not been out more than a couple of times in the last ten months. Regards, Hank

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Good advice Hank. Thank you for the info!

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@sjhedcon

Thanks for the information. Where did you purchase the 3:1 and 1:3 CBD/THC. I am looking for a reliable source. Thanks for any info.

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Sorry @sjhedcon, I missed this one. The products I use are from P & B, Papa & Barkley. Very good company and support. Be safe and protected from inner and outer harm…..also known as the ITCH!.

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@candyjohn1, @stobie2019, @lorirenee1, @helennicola, @ww2valentine, @teresarb6, @rwinney, @jesfactsmon ,

Good afternoon itchers. I do have some new information based on my telemed appointment with my dermatologist. She was the one who jumped in and got immediate help for me when I had the greatest itch of all time.

At first, she wanted to just start trying some medications. Then she said, "Chris, you have had these fasting tests sometime in the last 20 years. Let's start over and make sure we have current markers. Attached you will see the list of labs.

When all the labs have been reviewed, I will have another telemed appointment and try to figure out the source or causes of this increasingly debilitating irritation known as an all-over body itch. In the meantime, she prescribed two medications, an internal one and a topical.

I will also add a copy of the medications. I am sure we will learn something…….and hopefully find medications that will keep it under control. She also noted the medications that you reported and will add them to a list to learn from.

Have you experienced any further itch attacks or flares? If so let all of us know. What is working for you? I did enjoy the toothbrush idea. Anyone else try it?

Be safe and itch-free.
Chris……and thank you so much for your help.

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@artscaping

@candyjohn1, @stobie2019, @lorirenee1, @helennicola, @ww2valentine, @teresarb6, @rwinney, @jesfactsmon ,

Good afternoon itchers. I do have some new information based on my telemed appointment with my dermatologist. She was the one who jumped in and got immediate help for me when I had the greatest itch of all time.

At first, she wanted to just start trying some medications. Then she said, "Chris, you have had these fasting tests sometime in the last 20 years. Let's start over and make sure we have current markers. Attached you will see the list of labs.

When all the labs have been reviewed, I will have another telemed appointment and try to figure out the source or causes of this increasingly debilitating irritation known as an all-over body itch. In the meantime, she prescribed two medications, an internal one and a topical.

I will also add a copy of the medications. I am sure we will learn something…….and hopefully find medications that will keep it under control. She also noted the medications that you reported and will add them to a list to learn from.

Have you experienced any further itch attacks or flares? If so let all of us know. What is working for you? I did enjoy the toothbrush idea. Anyone else try it?

Be safe and itch-free.
Chris……and thank you so much for your help.

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@artscaping Great start! It sounds like a smart plan instead of only the medications without further investigating. Good luck with revealing a source. I no longer have itching…whew! Seemed mine was isolated from Chilblains and then I had a small bout of arm itching but, then disappeared. I will be prepared with Connect knowledge if it ever returns.
Thanks for the update.
Be well,
Rachel

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@sjhedcon

Thanks for the information. Where did you purchase the 3:1 and 1:3 CBD/THC. I am looking for a reliable source. Thanks for any info.

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Hi there @sjhedcon, how are things going for you. Spring is truly here and if you like green, you are loving the different shapes and shades. In response to your question, I use products from Papa & Barkley called Releaf Balm. Chris

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@colleenyoung, @lorirenee1, @rwinney, @chandyjohn1, @helennicolla, @stobie2019, @ww2valentine, @johnbishop

I have promised to keep in touch and share information as I stumble through the Neuropathic itch issues. For the last month, I have followed my dermatologist's protocol to include, Sarna cream after the shower which calms the outer skin, Doxepin,10 mg at bedtime helps with staying asleep and not scratching. I still need my medical cannabis to be comfortable during the day and night.

Here is an interesting article about the itch/scratch cycle process especially the neuropathic kind.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6502296/
My dermatologist has discovered two medications waiting for FDA approval. The first one, Seriopitant, is explained below.
https://www.dermatologyadvisor.com/home/topics/general-dermatology/serlopitant-benefits-patients-with-treatment-refractory-prurigo-nodularis/
The second one is Aprepitant. I don't see much of a connection with this one but then I am not a health practitioner and just don't understand everything. Here is the Wikipedia explanation.
https://en.wikipedia.org/wiki/Aprepitant
I hope you are all doing well. Colleen, if I left anyone out please let me know. Members, ask more questions and let's see if we can uncover the "witches' brew" for this annoying condition.

And if this sounds repetitive, this is the 3rd time I have written this. It just keeps disappearing.

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

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@artscaping

@colleenyoung, @lorirenee1, @rwinney, @chandyjohn1, @helennicolla, @stobie2019, @ww2valentine, @johnbishop

I have promised to keep in touch and share information as I stumble through the Neuropathic itch issues. For the last month, I have followed my dermatologist's protocol to include, Sarna cream after the shower which calms the outer skin, Doxepin,10 mg at bedtime helps with staying asleep and not scratching. I still need my medical cannabis to be comfortable during the day and night.

Here is an interesting article about the itch/scratch cycle process especially the neuropathic kind.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6502296/
My dermatologist has discovered two medications waiting for FDA approval. The first one, Seriopitant, is explained below.
https://www.dermatologyadvisor.com/home/topics/general-dermatology/serlopitant-benefits-patients-with-treatment-refractory-prurigo-nodularis/
The second one is Aprepitant. I don't see much of a connection with this one but then I am not a health practitioner and just don't understand everything. Here is the Wikipedia explanation.
https://en.wikipedia.org/wiki/Aprepitant
I hope you are all doing well. Colleen, if I left anyone out please let me know. Members, ask more questions and let's see if we can uncover the "witches' brew" for this annoying condition.

And if this sounds repetitive, this is the 3rd time I have written this. It just keeps disappearing.

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

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Interesting articles Chris. Thanks. I discussed in a previous post about my wife's use of a sonicare toothbrush for her foot itch which has been a big help to her. Her itch problem has been pretty bad at times, though it has calmed down a bit in the last few months thankfully. But I want to say that she started using a product called Penetrex (the roll-on not the jar of cream) from Amazon several weeks back and she has found that by using it she gets a lot of relief from her itch problem. It also has helped somewhat with the burning in her feet but it seems to be of most benefit with the itch. It is arnica (homeopathic) based, the main issue with it is it's not cheap at $24 per bottle which lasts her about 2 weeks. I am grateful that her itch has calmed down of late. She has enough to deal with with the burning in her feet and her recent sensitivity to changes in barometric pressure which give her debilitating migraines.So seeing the itch subside has been a nice benefit. Best, Hank

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