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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.

benita7jay | @benita7jay | Dec 11, 2020

I have neuropathy in my feet (numb). Itch from Hell now in my hands and wrists but all this started 3 years ago in a freeze when I had no electricity for 3 days. I had nightmare itching in the vaginal area which has stayed for 3 years, never gone away. There is nothing to be seen anywhere. No rash, No discharges. Nothing. Had every test and xray for cancer. All the doctors can say is all the itching is internal. My question is has anyone ever heard of neuropathy causing itching in the vaginal area?

REPLY
1 reply
lorirenee1 | @lorirenee1 | Dec 11, 2020
In reply to @benita7jay "I have neuropathy in my feet (numb). Itch from Hell now in my hands and wrists..." + (show)
@benita7jay

I have neuropathy in my feet (numb). Itch from Hell now in my hands and wrists but all this started 3 years ago in a freeze when I had no electricity for 3 days. I had nightmare itching in the vaginal area which has stayed for 3 years, never gone away. There is nothing to be seen anywhere. No rash, No discharges. Nothing. Had every test and xray for cancer. All the doctors can say is all the itching is internal. My question is has anyone ever heard of neuropathy causing itching in the vaginal area?

Jump to this post

@benita7jay Hi, I would think that if you had some kind of nerve entrapment in the vaginal area, you could get itch, pain, numbness, etc. (All of the things that Neuropathy does.) I have never heard of people describing vaginal itch from neuropathy, but it seems to me if that area is effected with Neuropathy, it could create itch. So sorry. Severe itch is very painful. LoriRenee1

REPLY
bjbednarz | @bjbednarz | Dec 11, 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

Something I've forgotten to mention earlier. My neurologist gave me Nortriptyline,10mg, two once a day. That seemed to help so I asked for a higher dose. She increased the dosage to 25mg, one a day. When I increased the dosage, the itching got worse. How can that be, that makes no sense. So, I stopped taking it since it obviously wasn't helping. However, when I stopped, the itching became unbearable. She gave it back to me at the lower dose. The itching got a little better. Now, she increased it again and the itching went crazy. So, I open the capsule, pour out some of the medication, close it back up and have approximately a 20mg dosage. The itch is better, and any relief is wonderful.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 11, 2020
In reply to @bjbednarz "Something I've forgotten to mention earlier. My neurologist gave me Nortriptyline,10mg, two once a day. That..." + (show)
@bjbednarz

Something I've forgotten to mention earlier. My neurologist gave me Nortriptyline,10mg, two once a day. That seemed to help so I asked for a higher dose. She increased the dosage to 25mg, one a day. When I increased the dosage, the itching got worse. How can that be, that makes no sense. So, I stopped taking it since it obviously wasn't helping. However, when I stopped, the itching became unbearable. She gave it back to me at the lower dose. The itching got a little better. Now, she increased it again and the itching went crazy. So, I open the capsule, pour out some of the medication, close it back up and have approximately a 20mg dosage. The itch is better, and any relief is wonderful.

Jump to this post

Wow....that is a surprise.....the ups and downs of the itch intensity controlled by a medication like Nortriptyline at 10 mg. I took that medication when I was first diagnosed with SFN (small fiber neuropathy). My bedtime dose was 50 mg and I truly believe it saved me from thoughts and deeds that were not in my best interests. I tapered off it last year because I felt that I was mentally in a much better place. I also substituted a night time tincture dose of medical cannabis.

I am really struggling right now......the itch starts at my finger tips with redness and inflammation (scratching) and then moves on up the back of my hand to the wrist and then on up to the elbow. It doesn’t seem like anything is helping except compression. So I wear compression sleeves and have just ordered compression gloves. I also have a dermatology appointment in January. She has seen the Harvard article so we will continue with our coping methodology.

Thank you for following up with me. I am very interested in your progress and hope you will continue our exchange.

May you have peace and contentment. (Please).
Chris

REPLY
4 replies
bjbednarz | @bjbednarz | Dec 11, 2020
In reply to @artscaping "Wow....that is a surprise.....the ups and downs of the itch intensity controlled by a medication like..." + (show)
@artscaping

Wow....that is a surprise.....the ups and downs of the itch intensity controlled by a medication like Nortriptyline at 10 mg. I took that medication when I was first diagnosed with SFN (small fiber neuropathy). My bedtime dose was 50 mg and I truly believe it saved me from thoughts and deeds that were not in my best interests. I tapered off it last year because I felt that I was mentally in a much better place. I also substituted a night time tincture dose of medical cannabis.

I am really struggling right now......the itch starts at my finger tips with redness and inflammation (scratching) and then moves on up the back of my hand to the wrist and then on up to the elbow. It doesn’t seem like anything is helping except compression. So I wear compression sleeves and have just ordered compression gloves. I also have a dermatology appointment in January. She has seen the Harvard article so we will continue with our coping methodology.

Thank you for following up with me. I am very interested in your progress and hope you will continue our exchange.

May you have peace and contentment. (Please).
Chris

Jump to this post

What blows my mind is how a low dose helps, but a higher dose makes it worse. I experienced it twice, same outcome.

REPLY
1 reply
Hank | @jesfactsmon | Dec 12, 2020
In reply to @artscaping "Wow....that is a surprise.....the ups and downs of the itch intensity controlled by a medication like..." + (show)
@artscaping

Wow....that is a surprise.....the ups and downs of the itch intensity controlled by a medication like Nortriptyline at 10 mg. I took that medication when I was first diagnosed with SFN (small fiber neuropathy). My bedtime dose was 50 mg and I truly believe it saved me from thoughts and deeds that were not in my best interests. I tapered off it last year because I felt that I was mentally in a much better place. I also substituted a night time tincture dose of medical cannabis.

I am really struggling right now......the itch starts at my finger tips with redness and inflammation (scratching) and then moves on up the back of my hand to the wrist and then on up to the elbow. It doesn’t seem like anything is helping except compression. So I wear compression sleeves and have just ordered compression gloves. I also have a dermatology appointment in January. She has seen the Harvard article so we will continue with our coping methodology.

Thank you for following up with me. I am very interested in your progress and hope you will continue our exchange.

May you have peace and contentment. (Please).
Chris

Jump to this post

@artscaping
Hi Chris, did you ever happen to try a massage/vibration unit on your itchy hand/arm? In case not, I do think there is a chance (perhaps small) that it might help, especially if you put on the compression sleeve right afterward (or do it with it on). I'm not referring to the sonicare idea (expensive if you do not have one to experiment with), but rather a different smallish unit which my wife Linda also uses.

Here is the Amazon link to it:
https://www.amazon.com/Uniclife-Massager-Portable-Shoulders-Operated/dp/B018U6Q1V2/ref=sr_1_1?dchild=1&keywords=Uniclife+Mini+Penguin+Massager%2CPortable+Massage%2C+Neck%2C+Shoulders+and+Back%2C+Battery+Operated%2C+White&qid=1607787462&sr=8-1
Maybe you already have something similar, but the vibrations this thing puts out are pretty strong & deep for its size and cost. I probably seem like I am beating a dead horse here, but I just think this might help your hand/arm itch areas if you have not tried it. I just feel so much compassion for you with this. I know how difficult it has been watching my wife suffer with it..

Best, Hank

PS: I promise this will be the last time I will bring this idea up unsolicited on Connect. I don't want to seem tedious. 😊

REPLY
3 replies
helennicola | @helennicola | Dec 12, 2020
In reply to @jesfactsmon "@artscaping Hi Chris, did you ever happen to try a massage/vibration unit on your itchy hand/arm?..." + (show)
@jesfactsmon

@artscaping
Hi Chris, did you ever happen to try a massage/vibration unit on your itchy hand/arm? In case not, I do think there is a chance (perhaps small) that it might help, especially if you put on the compression sleeve right afterward (or do it with it on). I'm not referring to the sonicare idea (expensive if you do not have one to experiment with), but rather a different smallish unit which my wife Linda also uses.

Here is the Amazon link to it:
https://www.amazon.com/Uniclife-Massager-Portable-Shoulders-Operated/dp/B018U6Q1V2/ref=sr_1_1?dchild=1&keywords=Uniclife+Mini+Penguin+Massager%2CPortable+Massage%2C+Neck%2C+Shoulders+and+Back%2C+Battery+Operated%2C+White&qid=1607787462&sr=8-1
Maybe you already have something similar, but the vibrations this thing puts out are pretty strong & deep for its size and cost. I probably seem like I am beating a dead horse here, but I just think this might help your hand/arm itch areas if you have not tried it. I just feel so much compassion for you with this. I know how difficult it has been watching my wife suffer with it..

Best, Hank

PS: I promise this will be the last time I will bring this idea up unsolicited on Connect. I don't want to seem tedious. 😊

Jump to this post

Hi Hank, Chris, do you think a tens unit could achieve the same result? Just wondering. Helen

REPLY
2 replies
lorirenee1 | @lorirenee1 | Dec 12, 2020
In reply to @artscaping "Wow....that is a surprise.....the ups and downs of the itch intensity controlled by a medication like..." + (show)
@artscaping

Wow....that is a surprise.....the ups and downs of the itch intensity controlled by a medication like Nortriptyline at 10 mg. I took that medication when I was first diagnosed with SFN (small fiber neuropathy). My bedtime dose was 50 mg and I truly believe it saved me from thoughts and deeds that were not in my best interests. I tapered off it last year because I felt that I was mentally in a much better place. I also substituted a night time tincture dose of medical cannabis.

I am really struggling right now......the itch starts at my finger tips with redness and inflammation (scratching) and then moves on up the back of my hand to the wrist and then on up to the elbow. It doesn’t seem like anything is helping except compression. So I wear compression sleeves and have just ordered compression gloves. I also have a dermatology appointment in January. She has seen the Harvard article so we will continue with our coping methodology.

Thank you for following up with me. I am very interested in your progress and hope you will continue our exchange.

May you have peace and contentment. (Please).
Chris

Jump to this post

@artscaping Hi Chris, I don't want to be redundant, so I only say that I am so sorry for your severely painful itching. Hank said so much, that you don't need to read again, but my heart hears you. My love and support, LoriRenee1

REPLY
Hank | @jesfactsmon | Dec 12, 2020
In reply to @helennicola "Hi Hank, Chris, do you think a tens unit could achieve the same result? Just wondering...." + (show)
@helennicola

Hi Hank, Chris, do you think a tens unit could achieve the same result? Just wondering. Helen

Jump to this post

@helennicola
Hi Helen. I actually don't know. The massager vibrates the area where the itch occurs and seems to satisfy the nerve's desire for stimulation, but without the harm to the tissue that scratching causes. Plus the vibration goes beneath the surface and into the flesh under the skin rather than just affecting the skin itself. That's about the sum total of what I know about what it does. Best, Hank

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 12, 2020
In reply to @bjbednarz "What blows my mind is how a low dose helps, but a higher dose makes it..." + (show)
@bjbednarz

What blows my mind is how a low dose helps, but a higher dose makes it worse. I experienced it twice, same outcome.

Jump to this post

Good afternoon @bjbednarz. Thanks for explaining the dosage differences in results for Nortriptyline. I know less than nothing about pharmacology. However, I sure have been the subject of some mix-ups. I wondered if I should share my recent one. It is based just on my evaluation of body sensations after topical application of CBD:THC. Actually @helennicola, this might strike a bell with you. I have tried over the years to moderate my need for Rx medications and use only Medical Cannabis. I have found that for the itch......a rich THC dosage increases the sensation (itch). One with a rich CBD dosage has the effect of reducing or soothing the itch. This is true with the tincture as well as the topical. When I think back to the feelings of heightened perception at art shows and concerts......(when I was a wild child) this seemed somewhat similar.

I don't have an answer.....did you discuss this experience with your clinician before you set up your own pharmacy? (Just teasing you @bjbednarz ). @helennicola.....do you have any thoughts and experiences with the P&B balm?

May you both have happiness and the causes of happiness.
Chris

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