Can chronic itching be caused by Neuropathy?

Posted by Rosebud @rosebud123, Feb 6, 2024

I have had Peripheral Neuropathy for about 20 years.
The only symptoms I’ve ever really had is a lot of tingling, numbness and spasms in the legs and toes.
For the past 12 months I’ve developed this chronic itch that started in my scalp but is now my whole body.
I have absolutely no rash or dryness anywhere.
My neurologist has told me he hasn’t heard of neuropathy causing itching which surprises me.
I’ve been to a Dermatologist who says he can’t see anything that’s causing it.
My Dr says she thinks it’s from high Uric acid.
In totally confused as to what it could be as it’s driving me crazy.
All three of them can only suggest Amiltriptyline which I’m not willing to take as I’m super sensitive to medication.
Has anyone here had the same problem and what did you do for it please.

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

“Itching skin is listed as a symptom of vitamin B6 toxicity on Understanding B6 Toxicity, which notes it can be related to nerve damage from high doses. This neuropathic itching can manifest as crawling, prickling, or itching sensations without a visible rash, while photosensitivity from high B6 can cause itchy, red skin eruptions in sun-exposed areas. Learn more on Understanding B6 Toxicity.”
https://understandingb6toxicity.com/b6-toxicity/symptoms/
This page is the symptom page, and there are so many symptoms because our nerves control EVERYTHING in our bodies.

People can get toxic from Energy Drinks, Sports Drinks, electrolyte drinks, or IV that are even prescribed by doctors! Also from Prenatal vitamins, and like me, a B-Complex vitamin.
Even from cookies like a brand called BELVITA cookies…
Really it’s good to check any food that is manufactured.

But some people even get B6Toxic from
Food!

If you go to this website, at the bottom of every page there is (I think), a paragraph from someone who has a story about having peripheral neuropathy from B6.

Read the website and go to the Facebook group:
“Understanding B6 Toxicity Using Western Research”

I wish I had known that B6 could give you neuropathy before I took the B-Complex.

There is a class action lawsuit in Australia where a manufacturer is being sued for adding it and giving people Neuropathy!! They even have a warning on products with B6 now but IMO, no Manufacturer should add it to any product. And doctors should test the blood of anyone who they suspect has B6 toxicity symptoms.

Also people should be aware of how much B6 they need a day. Women over 60 only need 1.5 mg daily, and younger people need more LESS!

We actually get all the B6 we need from eating meat, vegetables and fruit, which only have small amounts but they do add up.

This is fixable but fixing it isn’t fast. But at least it can be fixed.

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Profile picture for b6tkaren @b6tkaren

@onlinescoop

Have you ever read this website: understandingB6toxicity.com?
Back in January of this year, I couldn’t lift my legs to be able to stand on a wooden chair so I could reach something on the top shelf in my kitchen and I was shocked my legs weren’t working. So I googled my symptoms (I have no pain), but I realized, after reading that website, that the B-complex I had been taking for a year and a half (that had a lot of vitamin B6, combined with the DEHYDRATION I often get due to my IBS-D and food intolerances (low stomach), and the B6 went into my muscles and then damaged my nerves so they barely talk to my muscles.
But I am working on 3 things to get my nerves in good shape.
1- I stopped all supplements that had vitamin B6, and very importantly, I record all my food, drink, exercise, meds, in a free app called CRONOMETER (using the NCCDB, a database within the app), to make sure I do not go over the tiny amount of B6 I need daily. In fact it’s best to only get LESS than 100% of B6, in case the database is a bit off…
2- I exercise as much as I can because it seems to wake muscles and nerves up. And yes I have muscle twitching, but I’m glad for it because what’s the next step? Being paralyzed I suspect.
3- Hydration. I need to drink a LOT of water… and then also drink coconut water (no sugar & not from concentrate) that I get from Costco.

I also read the Facebook page that made the website… because medical people are no help. Ok there are some out there but I don’t know them… they are not in my state as far as I know.

Read that website thoroughly.

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@b6tkaren Thx for info re B 6 . Thot it was a water soluble vitamin and u excreted non used by body .

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Profile picture for boni4 @boni4

@b6tkaren Thx for info re B 6 . Thot it was a water soluble vitamin and u excreted non used by body .

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@boni4
Yup everyone thinks that.
Not so bad if it’s food but the real issue and why some many are getting problems is that manufacturers are adding it in hugely high mg so they can advertise that product us “healthy”!

However some still get PN from food…. It prob doesn’t hep that some of us have stuffed our faces with food meaning we have gone over the amount of B6 that we need daily… if we eat a lot of meat (keto), or even if we eat a lot of healthy fruits and vegetables too.

But remember that when you’ve been getting a lot of B6 and than you get dehydrated…. And you ignore the tingling feet and fingers, and legs, because you don’t understand the problem.. and by the time you find out it could be diagnosed with a B6 blood test… you’ve waited too long and it’s no longer in your blood. But now it’s gone into your muscles and damaged your nerves… and you can’t walk well.. and you finally go to a doctor who doesn’t understand, and they say you have “Idiopathic” PN.
Which is a word they use when they don’t know the cause!

Sheesh!
And also the doctors may not know how to help you recover your damaged nerves and muscles back…

Hopefully more people will know this in time and/or some class action LAWSUITS have happened to force open the eyes of both the medical community, and manufacturers too.

No one wants Peripheral Neuropathy.

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Profile picture for Rosebud @rosebud123

Firstly thanks so much for taking the time to reply.
I’m sorry you’re going through so much and pleased you’ve been able to find answers in some way.
Yes it’s very frustrating as I’ve been to so many doctors and specialists and so far no answers.
I have just had an ultrasound as I didn’t believe the Dr when she told me my blood tests showed no kidney or liver damage.
She actually told me I’ve reversed my fatty liver with eating so well. ( low carb )
I still wasn’t convinced which is why I insisted on the ultrasound.
Ultrasound shows all healthy organs all within range of what they should be.
Now I’m totally confused by all this as I’m a logical thinker and something clearly isn’t right for my body and scalp to be so itchy.
Mine doesn’t feel like crawling just a normal itch.
My Dr did say I’ve had high Uric acid for over 20 years now. ( No gout )
She seems to think that’s the cause of this itching.
I’m trying tart cherry juice at the moment but who knows.
I do drink two small glasses of wine every night as it’s the only thing that relaxes me enough to sleep.
Since I developed tinnitus 12 months ago I find it extremely difficult to sleep without the wine.
I have an appointment with my Neurologist in two weeks time I’ll mention the stim therapy and red light and see what he says.
You’ve been a wealth of knowledge and I’m extremely grateful for the information.
Good luck with your healing.

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@rosebud123 How are you since it has been a while?
I really hope that your itch is due to neuropathy. Did you get a Spleen or abdomen MRI? Sometimes the only sign of Lymphoma is itching. Blood work and liver can be normal for years.

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I have not had a skin biopsy but was diagnosed with SFN. Last year beginning in May I started to itch and it began on my scalp. It would spread to various parts of my body. I thought I was going to go bonkers. My allergist, dermatologist and primary had me running in circles. I spent so much money on various OTC remedies- nothing helped. I've had blood work for systemic and auto immune- negative. Allergy tests- negative. I was even tested for parasites and fungal infections. I am being tested for Mast Cell Activation Syndrome currently. Benadryl took the itch away but I was a zombie all summer- lost months to this extremely horrible itch. I take Zyrtec now and I think it helped but mine seems to get bad with heat and humidity, so I won't know for sure until summer.

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Profile picture for sweetie23 @sweetie23

I have not had a skin biopsy but was diagnosed with SFN. Last year beginning in May I started to itch and it began on my scalp. It would spread to various parts of my body. I thought I was going to go bonkers. My allergist, dermatologist and primary had me running in circles. I spent so much money on various OTC remedies- nothing helped. I've had blood work for systemic and auto immune- negative. Allergy tests- negative. I was even tested for parasites and fungal infections. I am being tested for Mast Cell Activation Syndrome currently. Benadryl took the itch away but I was a zombie all summer- lost months to this extremely horrible itch. I take Zyrtec now and I think it helped but mine seems to get bad with heat and humidity, so I won't know for sure until summer.

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@sweetie23 I have severe small fiber neuropathy (diagnosed by biopsy); the itch occurs mainly on my back. I tried Sarna lotion as recommended by dermatologist. It helps just a little. I have also tried Zyrtec since I take it in the spring and fall for allergies. I think it also helps, but the itch is maddening. I have not had it as bad this winter, so maybe you are right about heat and humidity. I do take supplements that are supposed to help neuropathy along with omega 3 from algal oil.

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You sound exactly like me. They keep saying that it is dry skin. But after multiple kinds of lotion, both off the shelf and prescription, nothing works. It seems to come and go on different parts of my body. I have found by recording it, that it always starts with a small lump under the skin. Who knows what is causing that, and then I break out all around it. After scratching until I bled, I did find something that seemed to help. Good old fashion Vaseline. it seems like it kills whatever causes the itch. Put it on your skin as soon as you start to itch. Good luck.

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Profile picture for jankavs @jankavs

@sweetie23 I have severe small fiber neuropathy (diagnosed by biopsy); the itch occurs mainly on my back. I tried Sarna lotion as recommended by dermatologist. It helps just a little. I have also tried Zyrtec since I take it in the spring and fall for allergies. I think it also helps, but the itch is maddening. I have not had it as bad this winter, so maybe you are right about heat and humidity. I do take supplements that are supposed to help neuropathy along with omega 3 from algal oil.

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@jankavs thank you for sharing. I never break out in a rash or hives- my skin does flush so they are testing me for mast cell activation syndrome. I moved to the South in 2024 and if it kicks up again I won't stay. I agree about how it impacts you- it's like psychological torture- funny but true. I am on Zyrtec as well and last summer only Benadryl helped. I was a zombie. I hope we find answers.

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I have suffered from back itching for many years. After two dermatologists and two useless topical medications, I was told that I have Notalgia Paresthetica, a nerve (entrapment?) issue. I have been reluctant to use antihistamines but have learned that cold provides temporary relief. At the end of my morning shower I let the cold water hit my back and then apply Sarna cream with a spatula. (I don’t think it helps much.) I think I once read to put the cream in the fridge, but I never tried that. Vaseline seems worth a try except for its greasy residue that might stain clothing.
My GP told me that I was his first patient ever to be diagnosed with this, and he is in his 60s.

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I have the same itching as you describe. Glad to know I’m not alone. Thank you for the Sarna tip🙂

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