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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.

runnergirl | @runnergirl | Mar 12, 2021
In reply to @amandajro "@runnergirl I fully understand your handle now. I am so sorry to hear about the loss..." + (show)
@amandajro

@runnergirl I fully understand your handle now. I am so sorry to hear about the loss of your running, I imagine that has been extremely difficult. I might recommend joining this discussion where you can (re)introduce yourself and share your love of running marathons to connect with others with similar losses and feelings.

-Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Again, welcome. I'm glad you found Connect!

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Thanks, Amanda - I'll check out the discussion. Cheers!

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artist01 | @artist01 | Mar 12, 2021
In reply to @runnergirl "Hi @amandajro - Thanks so much for connecting. It's been about a year or so, progressively..." + (show)
@runnergirl

Hi @amandajro - Thanks so much for connecting. It's been about a year or so, progressively getting worse but controlled with the Claritin. My initial SFN symptoms started in my feet back in 2007. All of these random symptoms have gotten worse over the years, with an actual diagnosis in 2018 and finally just last year, 2020 it was defined as autonomic neuropathy. (13 years and 10 neurologists later.) I don't have many of the typical symptoms, but definitely numbness, tingling, and can no longer run. It's been devastating - I used to be a serious marathon runner. It's just heartbreaking. I was searching online for "athletes with small fiber neuropathy support groups" and this group came up on Google. I was wondering if there are any other athletes out there who are dealing with this condition too and can no longer participate in the sports they once loved. It's comforting being with others who can empathize. Thanks again, Amanda.

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@runnergirl Heartbreaking for you not being able to run anymore. I understand. My daughter-in-law is an Ironman/Marathon runner, and absolutely NEEDS to run every day.
I can feel the depth of your loss myself, since I was a "marathon professional artist" and NEEDED to paint. I've lost the sight in my right eye as a result of Giant Cell Arteritis and can no longer paint. So many losses we all suffer.
Warm regards,
Laurie

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1 reply
runnergirl | @runnergirl | Mar 12, 2021
In reply to @artist01 "@runnergirl Heartbreaking for you not being able to run anymore. I understand. My daughter-in-law is an..." + (show)
@artist01

@runnergirl Heartbreaking for you not being able to run anymore. I understand. My daughter-in-law is an Ironman/Marathon runner, and absolutely NEEDS to run every day.
I can feel the depth of your loss myself, since I was a "marathon professional artist" and NEEDED to paint. I've lost the sight in my right eye as a result of Giant Cell Arteritis and can no longer paint. So many losses we all suffer.
Warm regards,
Laurie

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Thanks for the support, @artist01 - I'm so sorry about you not being able to paint as you once did. That sounds just horrible. We can only continue to hope for more research and treatment.

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Barry Sheales | @user_che214927 | Mar 30, 2021

Hi Chris, I have totally conquered the dreaded chronic itch, and severe rash, both arms and legs. It took me four days in December 2020 and has gone, lock stock and itchy barrel, rash reducing at a slower rate but IS reducing, but also no itch. Check my message sent to Mayo a couple of day ago. Best wishes.

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valeryane | @valeryane | Apr 8, 2021

I am new here. I have been itching for years but it gotten worse. It's not as simple as dry skin. I have been told I have Sjogren's S, mixed connective tissue disease, now kidney issues, Lupus, all sorts of autoimmune issues seem to plague me. Anyway. I use Cortizone cream and it helps but sometimes the itch area is pretty big. Anyway good to be here with others that know what I am talking about.

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Amanda Roe | @amandajro | Apr 8, 2021

Hello @valeryane and welcome to Mayo Clinic Connect. I am so glad you found this discussion where you can connect with others who understand what you are going through. I would recommend scrolling back through this discussion, if you haven't already, to read what others have tried to relieve their neuropathy itch, if you're interested.

Why do you think your itch has become worse recently?

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1 reply
marenew | @marenew | Apr 9, 2021
In reply to @amandajro "Hello @valeryane and welcome to Mayo Clinic Connect. I am so glad you found this discussion..." + (show)
@amandajro

Hello @valeryane and welcome to Mayo Clinic Connect. I am so glad you found this discussion where you can connect with others who understand what you are going through. I would recommend scrolling back through this discussion, if you haven't already, to read what others have tried to relieve their neuropathy itch, if you're interested.

Why do you think your itch has become worse recently?

Jump to this post

Hello, I am new to this group and thankful to have found it. I cannot speak to your specific condition but for my widespread burning of my entire body of nerve pain my dermatologist suggested Sarna Original which has mild amounts of Camphor 0.5% and Menthol 0.5% which makes the burning itch feel cool. Or the Sarna Sensitive that does not have any menthol or camphor but a local anesthetic called Pramoxine Hydrochloride 1%. They can be found OTC at most pharmacies, Walmart, even some of the grocery stores in the aisle for lotions for things like treating bug bites, etc.

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2 replies
Barry Sheales | @user_che214927 | Apr 10, 2021
In reply to @marenew "Hello, I am new to this group and thankful to have found it. I cannot speak..." + (show)
@marenew

Hello, I am new to this group and thankful to have found it. I cannot speak to your specific condition but for my widespread burning of my entire body of nerve pain my dermatologist suggested Sarna Original which has mild amounts of Camphor 0.5% and Menthol 0.5% which makes the burning itch feel cool. Or the Sarna Sensitive that does not have any menthol or camphor but a local anesthetic called Pramoxine Hydrochloride 1%. They can be found OTC at most pharmacies, Walmart, even some of the grocery stores in the aisle for lotions for things like treating bug bites, etc.

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Hi I have totally conquered the dreaded neuropathic itch. Look at my file of about 10 days ago.It has all details.I will attach a couple of shots with this note. Both legs and arms
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1 reply
kyc117 | @kyc117 | Apr 11, 2021

This sounds strange but the only thing that takes the edge off of my itch is Bath and Body Works Twisted Peppermint lotion.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 12, 2021
In reply to @marenew "Hello, I am new to this group and thankful to have found it. I cannot speak..." + (show)
@marenew

Hello, I am new to this group and thankful to have found it. I cannot speak to your specific condition but for my widespread burning of my entire body of nerve pain my dermatologist suggested Sarna Original which has mild amounts of Camphor 0.5% and Menthol 0.5% which makes the burning itch feel cool. Or the Sarna Sensitive that does not have any menthol or camphor but a local anesthetic called Pramoxine Hydrochloride 1%. They can be found OTC at most pharmacies, Walmart, even some of the grocery stores in the aisle for lotions for things like treating bug bites, etc.

Jump to this post

Good evening @marenew, welcome to Connect and the anti-itch group. When you say that the Sarna products work on the widespread burning of your entire body of nerve pain, can you help me understand how they remove the "burning". My itch creates a stomach-sickening condition that is more like I am beyond help....crying, difficulty breathing, and totally out of control.

I use the Sarna Original during the day along with "Tacrolimus" ointment for nighttime or whenever it is out of control or what you might call a "flare".

If you are having antagonist patch testing, you may want to check to see that the Sarna Sensitive is on the o.k. list. I had to switch back to the original because the Sarna Sensitive doesn't qualify for the Fragrance 1 or 11 lists at this point.

Sarna is also on Amazon in both formulas.

I am going to throw this out for consideration. Have you heard of Dupixent? It is a new medication that can be helpful for what is sometimes called internal itch.

Let me know what you learn so it can be shared with others needing help.

May you be safe and protected.
Chris

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