1. < Neuropathy

Internal vibrations/crawling

Posted by dukeduke1 @dukeduke1, Jul 20, 2022

Internal vibrating
Crawling feeling like bugs inside me, vibration, cold numbness, burning pain, shaking, wanting to gag and vomit, ears feel full and high pitched ringing and buzzing all the time and crawling feeling, pain in ears, crawling feeling in nose and fullness, crawling feeling in mouth and vibrating, crawling down face, every inch of me, stomach pain
Crying wanting to go to ER almost every night because of how much pain I’m in, worse at night but bad during daytime also
Vibrating in tongue and mouth, throat
Ears vibrating
Crawling feeling in eyes
Shaking, extremely weak,
Makes me extremely weak and barely able to move at times
Feel vibrating and crawling in private areas
This is so disabling. What do I do? I have a brain MRI scheduled. I have Dysautonomia/POTS, they suspect I have MS, I have neuropathy and neurological problems.

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

ashley5886 | @ashley5886 | Jul 21, 2022

I have many of your symptoms as well. I was recently diagnosed with peripheral neuropathy. I have been prescribed gabapentin and cymbalta daily, but hasn't seemed to start working yet. I do wear compression socks and constantly ice my feet, legs, and hands. I am basically bed ridden at this point so just started FML at work to give me some time for the meds to kick in and start physical therapy. I was also referred to a pain specialist so im hoping they will be able to help.

REPLY
sally3240 | @sally3240 | Jul 22, 2022

Hi, I'm Sally, I tested positive for autoimmune disease about 4 months ago. It's definitely neurological, is all I know at this point. I have many tests scheduled. But, I feel like my doctor's should have admitted me. they're leaning towards MS. I also have Spinal Stenosis, grand-mal seizures, optic neuritis, optic drusen and optic atrophy, progressive neuropathy, and much more.
I know exactly what you're experiencing. I keep telling my doctor's that I'm vibrating, or trembling. You can visually see me shaking. It never stops, it's all over. I have the creepiest feeling in my spine. I said, it feels like a little worm crawling in my spine. And then it spreads throughout my body. The hair on body stands up. It feels like my skin is being pricked. My ears constantly ring, or they're muffled. On somedays I wake up with fluid coming out. I have severe numbness in my legs and feet. I'm always nauseated. No appetite. I've lost to much weight. My legs feel like I'm carrying weights. Which makes it very difficult to walk. I'm weak as it is. There's days I can't talk. My voice trembles, and it's changed. To a raspy sound. I started having severe cramps in my legs, feet and toes. I can't stand to wear tight clothes. Nothing feels right. I wear compression socks, I try heat and cold therapy and it does help. I'm prescribed Gabapentin but, it doesn't help and I don't like side effects. It's a constant struggle, 24/7. I think my only choice is the emergency room. My doctor is literally watching me deteriorate right before her eyes. And it blows my mind. I don't have good insurance. That's my number one problem. I can't even get my neruoroligst to give me a pre-authorization and I've been waiting for months.
I see a stranger when I look in the mirror. A stranger in a stranger's body. I'm going on 45, and only 5 months ago, I was me. I hope you recieve answers soon.

REPLY
3 replies
bb0753 | @bb0753 | Jul 22, 2022

Are you taking b6 and or eating high protein or energy drinks? If so look into b6 toxicity.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jul 22, 2022

Hello @dukeduke1, @ashley5886 and @sally3240, Welcome to Connect. It must be extremely difficult dealing with all of the different symptoms you each have. I'm happy to see that the three of you connected in this discussion. I just have numbness and some minor tingling with my small fiber peripheral neuropathy and can't imagine how much worse it is to have the internal vibrations and other symptoms along with my diagnosis.

You might find the following somewhat related discussions helpful:
-- Has anyone experienced internal vibrations?: https://connect.mayoclinic.org/discussion/internal-viberations/ -- Lyme Disease and its Co-Infections, Morgellons Disease and Parasites: https://connect.mayoclinic.org/discussion/morgellons-and-other-parasites/

Several members mentioned the feeling of bugs under skin feeling in other discussions and may have some thoughts or suggestions:
-- @revfluegel - https://connect.mayoclinic.org/comment/636215/
-- @memomsloan - https://connect.mayoclinic.org/comment/243835/

One thing that helped my on my health journey with neuropathy was to learn as much as I can about my conditions and symptoms. I found Google Scholar (https://scholar.google.com/) quite helpful for finding the latest medical research articles.

Have you done any research on your conditions and possible treatments?

REPLY
2 replies
mabachus | @mabachus | Jul 22, 2022
In reply to @sally3240 "Hi, I'm Sally, I tested positive for autoimmune disease about 4 months ago. It's definitely neurological,..." + (show)
@sally3240

Hi, I'm Sally, I tested positive for autoimmune disease about 4 months ago. It's definitely neurological, is all I know at this point. I have many tests scheduled. But, I feel like my doctor's should have admitted me. they're leaning towards MS. I also have Spinal Stenosis, grand-mal seizures, optic neuritis, optic drusen and optic atrophy, progressive neuropathy, and much more.
I know exactly what you're experiencing. I keep telling my doctor's that I'm vibrating, or trembling. You can visually see me shaking. It never stops, it's all over. I have the creepiest feeling in my spine. I said, it feels like a little worm crawling in my spine. And then it spreads throughout my body. The hair on body stands up. It feels like my skin is being pricked. My ears constantly ring, or they're muffled. On somedays I wake up with fluid coming out. I have severe numbness in my legs and feet. I'm always nauseated. No appetite. I've lost to much weight. My legs feel like I'm carrying weights. Which makes it very difficult to walk. I'm weak as it is. There's days I can't talk. My voice trembles, and it's changed. To a raspy sound. I started having severe cramps in my legs, feet and toes. I can't stand to wear tight clothes. Nothing feels right. I wear compression socks, I try heat and cold therapy and it does help. I'm prescribed Gabapentin but, it doesn't help and I don't like side effects. It's a constant struggle, 24/7. I think my only choice is the emergency room. My doctor is literally watching me deteriorate right before her eyes. And it blows my mind. I don't have good insurance. That's my number one problem. I can't even get my neruoroligst to give me a pre-authorization and I've been waiting for months.
I see a stranger when I look in the mirror. A stranger in a stranger's body. I'm going on 45, and only 5 months ago, I was me. I hope you recieve answers soon.

Jump to this post

Go to Mayo Clinic

REPLY
1 reply
bb0753 | @bb0753 | Jul 22, 2022

DukeDuke1. If you are taking b6 supplements or energy drinks or eating extremely high protein diet or even did this in the past you might want to look into b6 toxicity. There is a facebook group Understanding B6 Toxicity where the members have your same symptoms.

REPLY
1 reply
pamelaz | @pamelaz | Jul 23, 2022
In reply to @sally3240 "Hi, I'm Sally, I tested positive for autoimmune disease about 4 months ago. It's definitely neurological,..." + (show)
@sally3240

Hi, I'm Sally, I tested positive for autoimmune disease about 4 months ago. It's definitely neurological, is all I know at this point. I have many tests scheduled. But, I feel like my doctor's should have admitted me. they're leaning towards MS. I also have Spinal Stenosis, grand-mal seizures, optic neuritis, optic drusen and optic atrophy, progressive neuropathy, and much more.
I know exactly what you're experiencing. I keep telling my doctor's that I'm vibrating, or trembling. You can visually see me shaking. It never stops, it's all over. I have the creepiest feeling in my spine. I said, it feels like a little worm crawling in my spine. And then it spreads throughout my body. The hair on body stands up. It feels like my skin is being pricked. My ears constantly ring, or they're muffled. On somedays I wake up with fluid coming out. I have severe numbness in my legs and feet. I'm always nauseated. No appetite. I've lost to much weight. My legs feel like I'm carrying weights. Which makes it very difficult to walk. I'm weak as it is. There's days I can't talk. My voice trembles, and it's changed. To a raspy sound. I started having severe cramps in my legs, feet and toes. I can't stand to wear tight clothes. Nothing feels right. I wear compression socks, I try heat and cold therapy and it does help. I'm prescribed Gabapentin but, it doesn't help and I don't like side effects. It's a constant struggle, 24/7. I think my only choice is the emergency room. My doctor is literally watching me deteriorate right before her eyes. And it blows my mind. I don't have good insurance. That's my number one problem. I can't even get my neruoroligst to give me a pre-authorization and I've been waiting for months.
I see a stranger when I look in the mirror. A stranger in a stranger's body. I'm going on 45, and only 5 months ago, I was me. I hope you recieve answers soon.

Jump to this post

Lo

I feel your pain. I got neuropathy and am on gabapentin and Cymbalta. Just started Monday. The pain is unbearable. I hope starts to work soon. Praying for you. Hot and cold make everything worse any suggestions would be appreciated.

REPLY
2 replies
pamelaz | @pamelaz | Jul 23, 2022
In reply to @johnbishop "Hello @dukeduke1, @ashley5886 and @sally3240, Welcome to Connect. It must be extremely difficult dealing with all..." + (show)
@johnbishop

Hello @dukeduke1, @ashley5886 and @sally3240, Welcome to Connect. It must be extremely difficult dealing with all of the different symptoms you each have. I'm happy to see that the three of you connected in this discussion. I just have numbness and some minor tingling with my small fiber peripheral neuropathy and can't imagine how much worse it is to have the internal vibrations and other symptoms along with my diagnosis.

You might find the following somewhat related discussions helpful:
-- Has anyone experienced internal vibrations?: https://connect.mayoclinic.org/discussion/internal-viberations/ -- Lyme Disease and its Co-Infections, Morgellons Disease and Parasites: https://connect.mayoclinic.org/discussion/morgellons-and-other-parasites/

Several members mentioned the feeling of bugs under skin feeling in other discussions and may have some thoughts or suggestions:
-- @revfluegel - https://connect.mayoclinic.org/comment/636215/
-- @memomsloan - https://connect.mayoclinic.org/comment/243835/

One thing that helped my on my health journey with neuropathy was to learn as much as I can about my conditions and symptoms. I found Google Scholar (https://scholar.google.com/) quite helpful for finding the latest medical research articles.

Have you done any research on your conditions and possible treatments?

Jump to this post

I can’t get into google.

REPLY
pamelaz | @pamelaz | Jul 23, 2022
In reply to @sally3240 "Hi, I'm Sally, I tested positive for autoimmune disease about 4 months ago. It's definitely neurological,..." + (show)
@sally3240

Hi, I'm Sally, I tested positive for autoimmune disease about 4 months ago. It's definitely neurological, is all I know at this point. I have many tests scheduled. But, I feel like my doctor's should have admitted me. they're leaning towards MS. I also have Spinal Stenosis, grand-mal seizures, optic neuritis, optic drusen and optic atrophy, progressive neuropathy, and much more.
I know exactly what you're experiencing. I keep telling my doctor's that I'm vibrating, or trembling. You can visually see me shaking. It never stops, it's all over. I have the creepiest feeling in my spine. I said, it feels like a little worm crawling in my spine. And then it spreads throughout my body. The hair on body stands up. It feels like my skin is being pricked. My ears constantly ring, or they're muffled. On somedays I wake up with fluid coming out. I have severe numbness in my legs and feet. I'm always nauseated. No appetite. I've lost to much weight. My legs feel like I'm carrying weights. Which makes it very difficult to walk. I'm weak as it is. There's days I can't talk. My voice trembles, and it's changed. To a raspy sound. I started having severe cramps in my legs, feet and toes. I can't stand to wear tight clothes. Nothing feels right. I wear compression socks, I try heat and cold therapy and it does help. I'm prescribed Gabapentin but, it doesn't help and I don't like side effects. It's a constant struggle, 24/7. I think my only choice is the emergency room. My doctor is literally watching me deteriorate right before her eyes. And it blows my mind. I don't have good insurance. That's my number one problem. I can't even get my neruoroligst to give me a pre-authorization and I've been waiting for months.
I see a stranger when I look in the mirror. A stranger in a stranger's body. I'm going on 45, and only 5 months ago, I was me. I hope you recieve answers soon.

Jump to this post

I don’t have the spinal damage but definitely everything else and horrible neuropathy.

I started gabapentin and Cymbalta on Monday. I pray the side effects go away and heal this broken body.

Prays to you.

REPLY
sally3240 | @sally3240 | Jul 23, 2022

Thank you. I keep hearing Cymbalta and Gabapentin work really good together. I did go back on my Gabapentin;I had to. I hope it works for you. Something has to! I will be praying for you.

REPLY
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