If You Have Neuropathy...

[Beth in NC]

do your hands and feet itch with it?

[MELINE]

no...for me it is something like someone is using a needle to pinch my toes and my fingers. but no itching. at least for me.

[darlindeb25]

do your hands and feet itch with it?

Yes, they can. Neuropathy has so many symptoms, and one person can have very different symptoms from another. Mine are all over the place. Sometimes my feet just ache, sometimes they vibrate like a cell phone, sometimes pins and needles like Meline says...some people complain of very hot feet, some very cold, some numb, and others, super sensitive...I can't stand shoes that touch me, if that makes sense. My daughter hates shopping for shoes with me, well, who am I kidding, nobody likes to go shoe shopping with me!!!! I used to get this cold spot on my leg, the size of a softball, my leg would feel like a cold breeze was blowing on it, I have even looked for an open window or fan, but it's just the nerve endings acting up.

this is from the National Institute of Neuropathy: Open Original Shared Link

Open Original Shared Link

Peripheral neuropathy usually starts with numbness, prickling or tingling in the toes or fingers. It may spread up to the feet or hands and cause burning, freezing, throbbing and/or shooting pain that is often worse at night.

The pain can be either constant or periodic, but usually the pain is felt equally on both sides of the body

[Beth in NC]

Peripheral neuropathy usually starts with numbness, prickling or tingling in the toes or fingers. It may spread up to the feet or hands and cause burning, freezing, throbbing and/or shooting pain that is often worse at night.

The pain can be either constant or periodic, but usually the pain is felt equally on both sides of the body

[Beth in NC]

Oh yeah...I did find several references last night to "neuropathic itch." Interesting.

[RiceGuy]

A number of the symptoms listed in relation to neuropathy are also symptoms of certain nutrient deficiencies. Some of the more obvious ones including vitamin B12, magnesium, and zinc. I can say from experience that these can make all the difference, so I wouldn't jump to any conclusions until having ruled out deficiencies.

It seems that itchy hands and feet are also characteristic of Lupus, according to this:

Open Original Shared Link

[ShayFL]

My neuro only makes me itch in the morning sometimes...right when I wake up.

My sensations vary. Sometimes it feels like little spiders are crawling all over me. Sometimes it is numbness and tingling or just one or the other. Every once in awhile I get pain in my hands and/or feet. A hot burning pain. When my hands and/or feet are really hot or cold, my brain will interpret as pain.

Today it is in my face a bit. Numbness.

I have addressed ALL deficiencies. So I am just waiting for me to be gluten-free and grain free long enough for my nerves to actually heal.

One thing I bought years ago that has helped with my neuro A LOT is called a Rebuilder. It is pricey, but it makes me feel so much better. I use it everyday for 30 minutes and it totally relaxes me and helps with the numbness/tingling.

I just started benfotamine a week ago.

Always healing!!

[Beth in NC]

From what I've read, it isn't an either/or situation, is it? For a celiac, wouldn't it be the lack of nutrients that CAUSES the neuropathy?

[Beth in NC]

From the Mayo Clinic website....

Causes

A number of factors can cause neuropathies. These factors include:

* Trauma or pressure on the nerve. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position, repeating a motion many times

[darlindeb25]

not knowing where your feet are

This may sound very weird, but it is a very real problem for some people, and a very scary one. I have a friend here on Long Island who can not feel his feet, and he doesn't know where they are. He has BIG dogs, and while walking them, he has walked out of his shoes and didn't even know it. He has had to backtracked to find his shoes and often times they are 3 blocks back. He lost his footing on a scales in his doctor's office and fell, thankfully only breaking things of the doctor's, and not any of his own bones. I sincerely hope I never have to deal with this problem!

As ShayFl states, often times you can feel things crawling on you, you keep trying to get the bugs off you, but they are invisible. I too, have had the face problems, days where my face feels like it is on fire, yet when you look in the mirror, it's not even flushed.

I know Riceguy is adamant about the usefulness of B12, and the fact it helped him is wonderful. BUT, you should take this seriously, and I think you should see a neurologist. Vitamin and mineral deficiencies are a cause for neuropathy, and not all of us get better on B12 alone. I see the neuro just to see that at least the progression of my neuropathy has slowed. My 1st neuro would not even discuss my gluten intolerance, wouldn't talk about the effects of celiac disease on nerves. The neuro I have now says celiac is very much a problem with neuropathy. If you see a neuro, he can help you find the right B12 for you, be it pills or shots. Some people find miraclous relief with B12 shots.

Good luck with whatever you choose to do for relief.

[Beth in NC]

This may sound very weird, but it is a very real problem for some people, and a very scary one. I have a friend here on Long Island who can not feel his feet, and he doesn't know where they are. He has BIG dogs, and while walking them, he has walked out of his shoes and didn't even know it. He has had to backtracked to find his shoes and often times they are 3 blocks back. He lost his footing on a scales in his doctor's office and fell, thankfully only breaking things of the doctor's, and not any of his own bones. I sincerely hope I never have to deal with this problem!

As ShayFl states, often times you can feel things crawling on you, you keep trying to get the bugs off you, but they are invisible. I too, have had the face problems, days where my face feels like it is on fire, yet when you look in the mirror, it's not even flushed.

I know Riceguy is adamant about the usefulness of B12, and the fact it helped him is wonderful. BUT, you should take this seriously, and I think you should see a neurologist. Vitamin and mineral deficiencies are a cause for neuropathy, and not all of us get better on B12 alone. I see the neuro just to see that at least the progression of my neuropathy has slowed. My 1st neuro would not even discuss my gluten intolerance, wouldn't talk about the effects of celiac disease on nerves. The neuro I have now says celiac is very much a problem with neuropathy. If you see a neuro, he can help you find the right B12 for you, be it pills or shots. Some people find miraclous relief with B12 shots.

Good luck with whatever you choose to do for relief.

Deb,

I do appreciate all the new information. Really....a great deal. I'm finding there is so much to learn and I am having to narrow the new information into the scope of the things I'm actually dealing with right now, rather than all the "extra" stuff that just overwhelms me. All the details about genes and antibodies for example. I do want to learn all that one day, but right now it's just too much. But as I type here right now having little annoying electrical impulses jab into my feet...these are the things I need to focus on now. My brain seems too small for all this info at times, but little by little, with the help of people like you all, I'll get it!

I am so sorry your friend has to deal with all that with his feet! How horrible! and potentially dangerous for him!

I have been doing the "bug" thing for several weeks. Never put the two together until your post. I also have noticed in the last month or so...hard to tell when it started...that I occasionally get this feeling on the right side of my forehead...it's hard to describe...it FEELS like if there was enough skin there that it would droop like Bell's Palsy. But it's like that area gets a heavy feeling, like the nerves are turning off for a minute or so. I don't know that it's neuropathy related, but I should get everything checked out.

I will be calling my GI tomorrow. I have my 4 week follow up appt to the Celiac diagnosis on Wednesday, but I'm going to mention the neuropathy to the nurse tomorrow and get a feel for what they want me to do. That way I'll know if I'm gonna hit a brick wall on Wed. or not. I also think, since I used to be a nurse myself, that I can talk to his nurse and get a good feel for where he stands on his Celiac care beyond initial diagnosis. Should be interesting.

Thanks so much for your help!

[Kitt1027]

Deb,

I do appreciate all the new information. Really....a great deal. I'm finding there is so much to learn and I am having to narrow the new information into the scope of the things I'm actually dealing with right now, rather than all the "extra" stuff that just overwhelms me. All the details about genes and antibodies for example. I do want to learn all that one day, but right now it's just too much. But as I type here right now having little annoying electrical impulses jab into my feet...these are the things I need to focus on now. My brain seems too small for all this info at times, but little by little, with the help of people like you all, I'll get it!

I am so sorry your friend has to deal with all that with his feet! How horrible! and potentially dangerous for him!

I have been doing the "bug" thing for several weeks. Never put the two together until your post. I also have noticed in the last month or so...hard to tell when it started...that I occasionally get this feeling on the right side of my forehead...it's hard to describe...it FEELS like if there was enough skin there that it would droop like Bell's Palsy. But it's like that area gets a heavy feeling, like the nerves are turning off for a minute or so. I don't know that it's neuropathy related, but I should get everything checked out.

I will be calling my GI tomorrow. I have my 4 week follow up appt to the Celiac diagnosis on Wednesday, but I'm going to mention the neuropathy to the nurse tomorrow and get a feel for what they want me to do. That way I'll know if I'm gonna hit a brick wall on Wed. or not. I also think, since I used to be a nurse myself, that I can talk to his nurse and get a good feel for where he stands on his Celiac care beyond initial diagnosis. Should be interesting.

Thanks so much for your help!

Beth,

I too have had the sensation of bugs all over me, but didn't put it together until I read these posts. I've had alot of neuropathy symptoms...I even went to the dr about 3 years ago complaining of the tingling in my arm and leg down to my foot. It sometimes just felt like tingling and sometimes felt like pins and needles. At the dr. they did blood work, but did not test for celiac or anything. My cholesterol and whatever else they tested was fine. The dr. even mentioned Multiple Sclerosis...let me tell ya...that was NOT fun at 21 years old to be thinking I could have Multiple Sclerosis! It was the health center drs at my college, so I think they really weren't too well trained in how to NOT scare students. Since then, the tingling has waxed and waned. More recently, I've had balance issues where I felt like I was about to fall over and had an afternoon where for about an entire hour I was shaking really bad. All of this stuff, put together with the gastro symptoms, depression, etc. have me more convinced than anything. I am going to get the blood work done next week and I will tell the Dr. about my neuropathy symptoms too.

Good luck with all of your symptoms!

We will all just have to stick together! Remember to take it one day at a time.

Kitt