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

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

@artscaping

@joybringer, Yes, I have tried Hydroxyzine 25 mg recently for neuropathic itch. It is an antihistamine and helps to straighten things out. I always took it only at the most painful moments because it does help you drift off into a healing sleep.

We, my PCP and I, are searching for the right medication to use with medical cannabis for small fiber neuropathy SFN. Where on your body do you have the greatest need for pain medication?

May you be safe and protected.

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I am thinking now that what I was diagnosed with many years ago (Histamine intolerance) could actually be neuropathic itch. If I don’t take my 20 mg Cetrizine I get burning / itching in my feet, hands and itchy any were on my body. Since getting my second dose of the Pfizer Covid vaccine I noticed that the cetrizine is not very effective. I find if my body gets a bit warm I get tingly/itchy jabs all over my body. That over time subsidies as my body cools off. Has anyone noticed this?

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@krobberstad

I am thinking now that what I was diagnosed with many years ago (Histamine intolerance) could actually be neuropathic itch. If I don’t take my 20 mg Cetrizine I get burning / itching in my feet, hands and itchy any were on my body. Since getting my second dose of the Pfizer Covid vaccine I noticed that the cetrizine is not very effective. I find if my body gets a bit warm I get tingly/itchy jabs all over my body. That over time subsidies as my body cools off. Has anyone noticed this?

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First of all, welcome @krobberstad to Connect. As mentors, we all have experiences to share because we have been and usually still are patients in at least one of the over 70 Connect Categories. Neuropathic itch is probably the one health issue that has just about floored me. In my book, itching is painful. It has literally brought me to my hands and knees on several occasions.

In the early days of my neuropathic itch, I also took Zyrtec in combination with Benadryl. Unfortunately, that duo made me very, very sleepy. My dermatologist suggested Allegra as a better choice and she was right. I now start my day with one Allegra tablet. Unless I am experiencing one of those dastardly flares, it works very well.

When you say that you were diagnosed many years ago....is that 5, 10, or more years? Have you had the patch tests to discover what was instigating your itch episodes?

May you have happiness today and the causes of happiness?

Chris

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@krobberstad

I am thinking now that what I was diagnosed with many years ago (Histamine intolerance) could actually be neuropathic itch. If I don’t take my 20 mg Cetrizine I get burning / itching in my feet, hands and itchy any were on my body. Since getting my second dose of the Pfizer Covid vaccine I noticed that the cetrizine is not very effective. I find if my body gets a bit warm I get tingly/itchy jabs all over my body. That over time subsidies as my body cools off. Has anyone noticed this?

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I have a Histamine issue...Itch is a big problem for me...triggered by change in temperature and also with water contact...on a FB Group for itch, someone discovered that their pre-workout supplement killed their itch...she isolated it to Beta Alanine and shared it with the group...5 years later, approx. 95% of the members use beta alanine with great success. I'm not sure if it will help your itch problem...but it may be worth a try. It is a OTC supplement, I buy mine on Amazon and use the NOW brand...I think you can also buy at GNC or other health focused shops. It is fairly cheap and may be worth a try. I take 750 mg. the dose on the package is much higher, but 750 mg works for me.

I read so much about people taking seriously heavy medication for itch, including steroids, I am so lucky this works for me.

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@artscaping

First of all, welcome @krobberstad to Connect. As mentors, we all have experiences to share because we have been and usually still are patients in at least one of the over 70 Connect Categories. Neuropathic itch is probably the one health issue that has just about floored me. In my book, itching is painful. It has literally brought me to my hands and knees on several occasions.

In the early days of my neuropathic itch, I also took Zyrtec in combination with Benadryl. Unfortunately, that duo made me very, very sleepy. My dermatologist suggested Allegra as a better choice and she was right. I now start my day with one Allegra tablet. Unless I am experiencing one of those dastardly flares, it works very well.

When you say that you were diagnosed many years ago....is that 5, 10, or more years? Have you had the patch tests to discover what was instigating your itch episodes?

May you have happiness today and the causes of happiness?

Chris

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Hi Chris! Thanks for the welcome. I was diagnosed by my allergist 20 years ago after undergoing 4 years of allergy shots with taking a daily dose of 20mg Reactine (Cetirizine). After being retested and not showing positive for previous allergic triggers he told me I only need to continue taking the 20mg reactine for the rest of my life because if I don’t my body reacts with burning/itching usually only on my hands and feet. But since getting both shots of the Pfizer I noticed that I was getting a symptom that was like little pinching/itchy/shock like sensations all over my body simultaneously. This morning I thought I was going insane with it after getting out of the shower. I had already taken my 20mg reactine with plenty time for it to be effective. My condition seems to be mostly triggered if my body feels the slightest bit warm. My husband suggested I take a Benadryl and I did and sat in front of the AC to cool down. Eventually it helped. I have read that it’s Neurological and not allergies.

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@moylandavis

I have a Histamine issue...Itch is a big problem for me...triggered by change in temperature and also with water contact...on a FB Group for itch, someone discovered that their pre-workout supplement killed their itch...she isolated it to Beta Alanine and shared it with the group...5 years later, approx. 95% of the members use beta alanine with great success. I'm not sure if it will help your itch problem...but it may be worth a try. It is a OTC supplement, I buy mine on Amazon and use the NOW brand...I think you can also buy at GNC or other health focused shops. It is fairly cheap and may be worth a try. I take 750 mg. the dose on the package is much higher, but 750 mg works for me.

I read so much about people taking seriously heavy medication for itch, including steroids, I am so lucky this works for me.

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Thanks!, I will need to check that out, and the FB group. Can you send me the name of that FB group?

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Here is the Link...Aquagenic Pruritus Support Group. One of the Members posts a lot of great and factual information on AP and Mast Cell Issues...search for Max Madd
https://www.facebook.com/groups/230640150306723/

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@moylandavis

I have a Histamine issue...Itch is a big problem for me...triggered by change in temperature and also with water contact...on a FB Group for itch, someone discovered that their pre-workout supplement killed their itch...she isolated it to Beta Alanine and shared it with the group...5 years later, approx. 95% of the members use beta alanine with great success. I'm not sure if it will help your itch problem...but it may be worth a try. It is a OTC supplement, I buy mine on Amazon and use the NOW brand...I think you can also buy at GNC or other health focused shops. It is fairly cheap and may be worth a try. I take 750 mg. the dose on the package is much higher, but 750 mg works for me.

I read so much about people taking seriously heavy medication for itch, including steroids, I am so lucky this works for me.

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Just forgot to ask in my reply, do you have to work out to use theBeta Alanine? I only walk, not typical work out exercises. My itch is triggered mostly if my body feels the slimmest bit warm. Like after getting out of the shower, or after my walk.

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No on the workout question...I dont. It has been a miracle for me...I hope it works for you...please let me know if it does...

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@krobberstad

Hi Chris! Thanks for the welcome. I was diagnosed by my allergist 20 years ago after undergoing 4 years of allergy shots with taking a daily dose of 20mg Reactine (Cetirizine). After being retested and not showing positive for previous allergic triggers he told me I only need to continue taking the 20mg reactine for the rest of my life because if I don’t my body reacts with burning/itching usually only on my hands and feet. But since getting both shots of the Pfizer I noticed that I was getting a symptom that was like little pinching/itchy/shock like sensations all over my body simultaneously. This morning I thought I was going insane with it after getting out of the shower. I had already taken my 20mg reactine with plenty time for it to be effective. My condition seems to be mostly triggered if my body feels the slightest bit warm. My husband suggested I take a Benadryl and I did and sat in front of the AC to cool down. Eventually it helped. I have read that it’s Neurological and not allergies.

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Hey there @krobbersstad, this is very interesting. You have been told that you are not reacting positively to allergens. It is interesting that temperature is a factor for you and if I understood correctly is one that currently is causing your body to react. I also had an outbreak begin today on my right arm. It's been a while since that has happened.

Do you think that stress is a factor? Can you remember being "attacked by the itch" during a time of stress or when there was a decision to be made, or an incident to be tolerated and put to bed? I had a TKR (total knee replacement) in August. From the time I got home from the surgery center up until right now, I have had unbelievable outbreaks and have found that my life has revolved around the itch outbreaks but only on the surgery leg.....not on the non-surgery leg. I am using tacrolimus (the ointment) twice a day to try to keep it under control. So....is that because of some surgical medications that interacted with my itch generating cells? I have an appointment with my dermatologist next week to see what we can figure out.

One final question.....what do you mean when you say that it's Neurological and not allergies? I would appreciate learning more about what you have read.

So I am using the OTC Allegra every day which helps with the arms but this leg is driving me C-R-A-Z-Y.

Let's stay in touch...you have lots of experience which can help others. And that is what Connect is all about.
Thanks for sharing......
Chris

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@artscaping

Hey there @krobbersstad, this is very interesting. You have been told that you are not reacting positively to allergens. It is interesting that temperature is a factor for you and if I understood correctly is one that currently is causing your body to react. I also had an outbreak begin today on my right arm. It's been a while since that has happened.

Do you think that stress is a factor? Can you remember being "attacked by the itch" during a time of stress or when there was a decision to be made, or an incident to be tolerated and put to bed? I had a TKR (total knee replacement) in August. From the time I got home from the surgery center up until right now, I have had unbelievable outbreaks and have found that my life has revolved around the itch outbreaks but only on the surgery leg.....not on the non-surgery leg. I am using tacrolimus (the ointment) twice a day to try to keep it under control. So....is that because of some surgical medications that interacted with my itch generating cells? I have an appointment with my dermatologist next week to see what we can figure out.

One final question.....what do you mean when you say that it's Neurological and not allergies? I would appreciate learning more about what you have read.

So I am using the OTC Allegra every day which helps with the arms but this leg is driving me C-R-A-Z-Y.

Let's stay in touch...you have lots of experience which can help others. And that is what Connect is all about.
Thanks for sharing......
Chris

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Hi Chris, yes my allergy specialist told me back 20 years ago that I would need to continue with a daily 20mg dose of Reactine(Cetirizine) because even though back then did not respond positive to any allergens I was tested for, due to my symptoms experienced when not taking the Reactine (Hives,itchy,burning hand and feet, just overall miserable) I would be having to take it for the rest of my days. It has been just since my last dose of the Covid Pfizer vaccine in June that I noticed first when I was walking,feeling a bit warm, kind of clammy that I started experiencing random shock like sensations, but itchy sensations. Most recently it has started happening when having a shower and afterwards. Normally,prior to to receiving the Covid shot the reactine (Cetirizine)20mg daily was enough to control my condition. But yesterday morning I was about to go insane after my shower I had to take a Benadryl as well and sit in front of the air conditioner to cool off. So I don’t believe my condition is triggered by stress. Actually yesterday’s experience did make me stressed, but only because I was getting those electrical shock like itchy jabs all over my body .

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