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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.

marenew | @marenew | Apr 12, 2021
In reply to @artscaping "Good evening @marenew, welcome to Connect and the anti-itch group. When you say that the Sarna..." + (show)
@artscaping

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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Nice to "meet" you. The Sarna original makes my hot burn feel like a cool burn so its just tricking my brain and I found I am using it less. My nerve pain is like a hot burning itch. It is on my face, neck, back, arms both front and back of arms, legs, primarily in the back thighs and calves, ankles top of feet and the worst of all the bottom of the feet which is more like neuropathy pain I have had in my hands for over 10 years. I have not been on the gabapentin long enough to know if the extra daytime dose of 100 mg added 4 days ago to the 300 mg taking at night for only 17 days will eventually kick in. But I am grateful the Sarna Sensitive and Original alternated use during the day allows me to be functional. Otherwise I will talk to my doctor about the Tacrolimus and Dupixent as options.

REPLY
snoopydogks | @snoopydogks | Apr 23, 2021

Hello everyone. This is my first time to visit this site so I'm hoping to either get some helpful answers or at least know that I'm not alone. I have been diagnosed with peripheral neuropathy and have been looking for an effective treatment for several months. My neurologist said the neuropathy was due to high blood sugars, so I went to a diabetic doctor who disagreed. I am what they call prediabetic with blood sugars on the high side but still in the normal range. I suffer with a burning, tingling, and itchinc on my back, arms, and lower part of legs. I have taken a veriety of meds but so far no relief. If anyone has any suggestions or helpful information it would be much appreciated.

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2 replies
Amanda Roe | @amandajro | Apr 23, 2021
In reply to @snoopydogks "Hello everyone. This is my first time to visit this site so I'm hoping to either..." + (show)
@snoopydogks

Hello everyone. This is my first time to visit this site so I'm hoping to either get some helpful answers or at least know that I'm not alone. I have been diagnosed with peripheral neuropathy and have been looking for an effective treatment for several months. My neurologist said the neuropathy was due to high blood sugars, so I went to a diabetic doctor who disagreed. I am what they call prediabetic with blood sugars on the high side but still in the normal range. I suffer with a burning, tingling, and itchinc on my back, arms, and lower part of legs. I have taken a veriety of meds but so far no relief. If anyone has any suggestions or helpful information it would be much appreciated.

Jump to this post

Hello @snoopydogks and welcome to Mayo Clinic Connect. Can I start by asking you how long ago you were diagnosed and what medication you've all tried so far so that other members may come in and provide support?

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athenalee | @athenalee | Apr 23, 2021
In reply to @snoopydogks "Hello everyone. This is my first time to visit this site so I'm hoping to either..." + (show)
@snoopydogks

Hello everyone. This is my first time to visit this site so I'm hoping to either get some helpful answers or at least know that I'm not alone. I have been diagnosed with peripheral neuropathy and have been looking for an effective treatment for several months. My neurologist said the neuropathy was due to high blood sugars, so I went to a diabetic doctor who disagreed. I am what they call prediabetic with blood sugars on the high side but still in the normal range. I suffer with a burning, tingling, and itchinc on my back, arms, and lower part of legs. I have taken a veriety of meds but so far no relief. If anyone has any suggestions or helpful information it would be much appreciated.

Jump to this post

Did your doctor actually test for A1c? Did he do other blood labs to rule out autoimmune diseases or other potential causes? EMG and Nerve Conduction tests? If not, I’d definitely consult with another neurologist or insist that these be done. The Foundation for Peripheral Neuropathy has some good information you might find helpful. There are a lot of resources on diet and exercises that can be helpful until you can get a more solid diagnosis as to cause. I’m new to neuropathy and just found it helpful to learn about the different types, causes, treatments, etc. And, also, definitely review the posts of the Connects group to gain from their knowledge and experience and to just know you’re not alone. Knowledge can be overwhelming, but it’s also powerful and will help inform your discussions with your medical providers.

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1 reply
snoopydogks | @snoopydogks | Apr 23, 2021
In reply to @athenalee "Did your doctor actually test for A1c? Did he do other blood labs to rule out..." + (show)
@athenalee

Did your doctor actually test for A1c? Did he do other blood labs to rule out autoimmune diseases or other potential causes? EMG and Nerve Conduction tests? If not, I’d definitely consult with another neurologist or insist that these be done. The Foundation for Peripheral Neuropathy has some good information you might find helpful. There are a lot of resources on diet and exercises that can be helpful until you can get a more solid diagnosis as to cause. I’m new to neuropathy and just found it helpful to learn about the different types, causes, treatments, etc. And, also, definitely review the posts of the Connects group to gain from their knowledge and experience and to just know you’re not alone. Knowledge can be overwhelming, but it’s also powerful and will help inform your discussions with your medical providers.

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Yes we did all of the things you mentioned. I'm currently on a diet to lower my blood sugars which seems to be working. Thank you for your response. Its always encouraging to hear from others.

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1 reply
athenalee | @athenalee | Apr 23, 2021
In reply to @user_che214927 "Hi I have totally conquered the dreaded neuropathic itch. Look at my file of about 10..." + (show)
@user_che214927

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

Jump to this post

Congratulations!

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athenalee | @athenalee | Apr 23, 2021
In reply to @snoopydogks "Yes we did all of the things you mentioned. I'm currently on a diet to lower..." + (show)
@snoopydogks

Yes we did all of the things you mentioned. I'm currently on a diet to lower my blood sugars which seems to be working. Thank you for your response. Its always encouraging to hear from others.

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I think diet is certainly a positive path. I watched this FPN webinar yesterday on nutrition and PN - https://www.foundationforpn.org/webinar-nutrition-for-patients-with-peripheral-neuropathy/

I knew much of what was discussed, but learned a few things. I hope your diet continues to help you.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2021
In reply to @athenalee "I think diet is certainly a positive path. I watched this FPN webinar yesterday on nutrition..." + (show)
@athenalee

I think diet is certainly a positive path. I watched this FPN webinar yesterday on nutrition and PN - https://www.foundationforpn.org/webinar-nutrition-for-patients-with-peripheral-neuropathy/

I knew much of what was discussed, but learned a few things. I hope your diet continues to help you.

Jump to this post

@athenalee, I changed the link to the webinar in your post to the Foundation for Peripheral Neuropathy's link. The link you posted was your registrant link, which included your email address.

All, see all FPN webinar recordings here: https://www.foundationforpn.org/living-well/fpn-media-center/

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1 reply
athenalee | @athenalee | Apr 24, 2021
In reply to @colleenyoung "@athenalee, I changed the link to the webinar in your post to the Foundation for Peripheral..." + (show)
@colleenyoung

@athenalee, I changed the link to the webinar in your post to the Foundation for Peripheral Neuropathy's link. The link you posted was your registrant link, which included your email address.

All, see all FPN webinar recordings here: https://www.foundationforpn.org/living-well/fpn-media-center/

Jump to this post

Thank you!

REPLY
help22 | @help22 | Apr 25, 2021

You can try morninga oil for the itch. Also try eucerin calming lotion.

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