1. < Skin Health
Mentor

What do you do for Neuropathy itch?

Posted by Chris Trout, Volunteer Mentor @artscaping, Apr 27, 2020

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

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

sunnyflower | @sunnyflower | Nov 29, 2020
In reply to @bjbednarz "The Doxepin did not help me. The only thing that has helped are products containing Lidocaine." + (show)
@bjbednarz

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

Jump to this post

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
1 reply
Hank | @jesfactsmon | Nov 30, 2020
In reply to @artscaping "@jesfactsmon Oh my goodness. Linda has also been in itch anguish, complete with sobs and screams...." + (show)
@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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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

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 30, 2020
In reply to @jesfactsmon "Chris @artscaping I need to clarify something. I think the reason the soncicare is so effective..." + (show)
@jesfactsmon

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

Jump to this post

Good afternoon Hank @jesfactsmon, Hmmm....that is interesting. My battle began this year (2020) in April as you will note by the date of this discussion. That is why we thought it was pine pollen or some other spring allergy material. @lorirenee1, I think it was you who said there may be a relationship between the fact that kratom and marijuana are plants. So did Linda have an episode in 2020 as she did in 2019? I guess I want to let everyone know how important these journey stories are .... when & what we can answer, it is the why we are not sure of according to the Harvard study. Thanks for sharing the details.

May you find joy today.
Chris

REPLY
sunnyflower | @sunnyflower | Nov 30, 2020
In reply to @jesfactsmon "Chris @artscaping I need to clarify something. I think the reason the soncicare is so effective..." + (show)
@jesfactsmon

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

Jump to this post

Oh Hank, poor girl! Give her a hug for me!

REPLY
bjbednarz | @bjbednarz | Dec 1, 2020
In reply to @sunnyflower "Hello bjbednarz, @lorirenee1 , @artscapint, I have a lidocaine 4% "solution". It's very liquid like water...." + (show)
@sunnyflower

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

Jump to this post

Thank you for the information. I have had two prescription compounds with 5% lidocaine solution. One was an ointment and the other was a lotion. However, neither worked as well as the Aspercreme with Lidocaine 4%. I get the roll on and it easily goes on everywhere.

REPLY
1 reply
sunnyflower | @sunnyflower | Dec 1, 2020
In reply to @bjbednarz "Thank you for the information. I have had two prescription compounds with 5% lidocaine solution. One..." + (show)
@bjbednarz

Thank you for the information. I have had two prescription compounds with 5% lidocaine solution. One was an ointment and the other was a lotion. However, neither worked as well as the Aspercreme with Lidocaine 4%. I get the roll on and it easily goes on everywhere.

Jump to this post

Thanks so much, I will have to try the Aspercreme! Best wishes, Sunnyflower

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 5, 2020
In reply to @bjbednarz "Good Afternoon, I've had two different Lidocaine compounds made for me, but neither of them worked..." + (show)
@bjbednarz

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.

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Good afternoon, @bjbednarz Thanks for the feedback. I agree with your conclusion. And I also had an MRI of my brain at the insistence of my neurologist. (you can see how much I did not know in the beginning). When I asked what he saw....he said "nothing concerning". When I asked for more feedback......he simply said, it only shows some signs of aging....which I couldn't disagree with at my age. The "Chris of today" would insist on seeing the results and given an explanation.

So @bjbednarz, Have you heard from your dermatologist? If so, please share what you are comfortable sharing. And don't go away....we are learning from you and your experience.

May you be content and at ease.
Chris

REPLY
2 replies
bjbednarz | @bjbednarz | Dec 5, 2020
In reply to @artscaping "Good afternoon, @bjbednarz Thanks for the feedback. I agree with your conclusion. And I also had..." + (show)
@artscaping

Good afternoon, @bjbednarz Thanks for the feedback. I agree with your conclusion. And I also had an MRI of my brain at the insistence of my neurologist. (you can see how much I did not know in the beginning). When I asked what he saw....he said "nothing concerning". When I asked for more feedback......he simply said, it only shows some signs of aging....which I couldn't disagree with at my age. The "Chris of today" would insist on seeing the results and given an explanation.

So @bjbednarz, Have you heard from your dermatologist? If so, please share what you are comfortable sharing. And don't go away....we are learning from you and your experience.

May you be content and at ease.
Chris

Jump to this post

My neurologist also said she saw signs of aging, maybe a little more than normal for my age. Nothing alarming. That doesn't make you feel any better. She also said the portion of the brain that would cause itching looks completely normal.
The dermatologist is now working on oral lichen planus, so she has shifted her efforts at least for now. I think she has no more ideas to work with. She thought what she gave me for that might also help the itching, but it hasn't.

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benita7jay | @benita7jay | Dec 6, 2020

I don't know if will help but I use liquid children's Benadryl half of a 12 year old dose. I have itch from hell and it stops it. You could take a whole dose.

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oldkarl | @oldkarl | Dec 6, 2020

About Neuropathy..... 1. Turmeric. About a half teaspoon in 8 oz of water. 2. Dill Pickle Juice, About 1-2 ounces when the NPH starts. 3. Yellow Mustard, about. half teaspoon. Well, you might as well put it on a hamburger or hot dog. I have tried all three, and they have worked for me.

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