Peripheral Neuropathy and benign fasciculation syndrome.

Posted by sherryw @sherryw, Aug 5, 2019

My neurologist diagnosed me with small fiber peripheral neuropathy. He states i also have BFS (benign fasciculation syndrome.) My legs have weird sensations/zaps/pops, especially at night or when I am lying down. Do others have this problem?

@cncwi17

My name is Carol Selius and I have vibration feelings under my toes. Nothing seems to help. I am seeing a naturopathic doctor and I'm taking alot of supplements. I was diagnosed with candida and getting treatment for that. We both think it's due to a possible mutated gene. I also have tightness and numbness under my right toes and my left foot and ankle are numb.

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Hi Carol @cncwi17, I see that you recently joined Connect and would like to welcome you. I'm wondering if the vibration feelings under your toes that you describe are muscle spasms or fasciculations. There is another discussion that you may find helpful.

> Groups > Neuropathy > Peripheral Neuropathy and benign fasciculation syndrome.
https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/

You mentioned nothing seems to help with the vibration feelings under the toes. May I ask what you have tried?

Liked by Lisa Lucier

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@iceblue

Hi Sherry – Many of your symptoms sound VERY much like mine. My hands are not problematic during the day, but when I'm sleeping it's a whole other story as I wake frequently with pins/needles sensations (no burning). The neurologist said that is likely due to the position of my hands when I sleep. It's so irritating I've thought of sleeping with braces on my wrists to see if it makes a difference.

Thanks to Gabapentin, I no longer wake up with burning feet, and in fact, my foot pain (which was fairly constant) has been eliminated. The one thing I still experience is the popping in my calves. I describe the sensation as being like popping corn (pop, pop, pop); thankfully it is NOT painful, just irritating. Like you – if I move my legs, the sensation stops. I do experience other sensations like electrical zaps – but they are infrequent and don't fuss me at all.

I've had the symptoms for a long time, but was only diagnosed a couple of months ago. I am satisfied with the treatment plan thus far.

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@iceblue, I have similar symptoms mostly with my left arm and hands when I sleep on my left side. I think it may have to do with a nerve being compressed or pinched when I'm sleeping on that side. I have learned to try and keep my left hand flat under the side of my pillow and that seems to help some. I have tried wrist braces that I purchased at WalMart and they seem to help as they keep most of the hand straight.

Liked by iceblue

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That is exactly what the Neurologist said. My sleeping position is causing nerve compression.

Sometimes when I wake up, both of my hands are tingling. I think: What position were both hands in that they caused THIS? I sleep on my right side, and have always slept with my right hand under my pillow. To be honest, I can't imagine that sleeping with braces is going to be pleasant, but I'll give it a try.

Another possibility: I have an official diagnosis of arthritis in my neck. It bothered me horribly when I lived on the Coast, so I was referred to a Rheumatologist – who ordered x-rays. We now live in the Southern Interior where the climate is classified as semi-desert, and the only arthritis pain I have experienced over the past few years is in my hands (thumbs specifically). I know I could reduce that pain if I quit quilting – but my pain levels are not there yet. Thank Goodness because I love sewing/quilting!

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@iceblue

That is exactly what the Neurologist said. My sleeping position is causing nerve compression.

Sometimes when I wake up, both of my hands are tingling. I think: What position were both hands in that they caused THIS? I sleep on my right side, and have always slept with my right hand under my pillow. To be honest, I can't imagine that sleeping with braces is going to be pleasant, but I'll give it a try.

Another possibility: I have an official diagnosis of arthritis in my neck. It bothered me horribly when I lived on the Coast, so I was referred to a Rheumatologist – who ordered x-rays. We now live in the Southern Interior where the climate is classified as semi-desert, and the only arthritis pain I have experienced over the past few years is in my hands (thumbs specifically). I know I could reduce that pain if I quit quilting – but my pain levels are not there yet. Thank Goodness because I love sewing/quilting!

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@iceblue my doctor thought it was an issue with the ulnar nerve causing the tingling and pins and needles when sleeping on the side. I generally sleep the same position on either side and both sides after awhile will cause this tingling issue. The hand for the side I'm sleeping on is under the edge of the pillow as flat as I can make it. The other hand I try to keep it flat wherever it wants to go (changes when I fall asleep ☺). Here's more information on the ulnar nerve.

Ulnar Nerve Entrapment at the Elbow (Cubital Tunnel Syndrome)
https://orthoinfo.aaos.org/en/diseases–conditions/ulnar-nerve-entrapment-at-the-elbow-cubital-tunnel-syndrome/

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@iceblue

Hi Sherry – Many of your symptoms sound VERY much like mine. My hands are not problematic during the day, but when I'm sleeping it's a whole other story as I wake frequently with pins/needles sensations (no burning). The neurologist said that is likely due to the position of my hands when I sleep. It's so irritating I've thought of sleeping with braces on my wrists to see if it makes a difference.

Thanks to Gabapentin, I no longer wake up with burning feet, and in fact, my foot pain (which was fairly constant) has been eliminated. The one thing I still experience is the popping in my calves. I describe the sensation as being like popping corn (pop, pop, pop); thankfully it is NOT painful, just irritating. Like you – if I move my legs, the sensation stops. I do experience other sensations like electrical zaps – but they are infrequent and don't fuss me at all.

I've had the symptoms for a long time, but was only diagnosed a couple of months ago. I am satisfied with the treatment plan thus far.

Jump to this post

@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of the brachial plexus nerve bundle that passes between the rib cage and collar bone and goes to the arms, and it is aggravated by arm position. I have TOS, and it causes the front of my chest and neck to be tight, and activities with raised arms like driving a car or sleeping with arm positions that raise the arm in relation to body position will bring on symptoms. My hands used to turn blue and get cold because it decreased circulation. TOS is often best treated with physical therapy and myofascial release which is what I do, and I am making progress with my symptoms. When you have a forward head and shoulder position, it causes issues. Try standing sideways in front of a mirror and look to see if your shoulders line up directly under the center of your neck. That can indicate that the muscles in front are too tight which is a problem with TOS.

It's difficult to get an accurate diagnosis of TOS because it is misunderstood and perceived as rare by doctors. It isn't covered well in medical schools. I was diagnosed by a neurologist and he raised my arm while checking to see if my pulse would diminish and it did. At Mayo, a neurologist listened to my pulse in my neck and had me turn my head, and it also stopped my pulse. I came to Mayo as a spine surgery patient 3 years ago, and they also evaluated my TOS because of overlapping symptoms with a spine issue. Look for specialists for TOS at teaching medical centers that list it as a condition that they treat. A lot of doctors miss it and don't believe patients who talk about the symptoms. That happened to me after carpal tunnel surgery and that doctor was irritated when I came back after surgery telling him that my hand was turning blue. He took my pulse and told me I was fine. When I got a TOS diagnosis from another doctor and told this surgeon, he wanted nothing to do with me, and would not authorize physical therapy because he said he wouldn't be able to evaluate if it was helping me or not. He had completely missed it. It's easy for a doctor to think that symptoms in the hand are only carpal tunnel, but they can be caused anywhere along the nerve path and the same symptoms can be caused by TOS or a spine problem. In my case, I had symptoms from all of this. It's important to figure out all the places that are generating nerve pain before a patient decides to proceed with surgery. Surgery might not help at all, or may not relieve all the symptoms (as in my case) if they miss a problem with overlapping symptoms. You can have a problem of physical compression of nerves in addition to other neuropathies, and it might be worth looking into physical possibilities that can be helped with MFR with physical therapy.

Here are some links about TOS and myofascial release.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of the brachial plexus nerve bundle that passes between the rib cage and collar bone and goes to the arms, and it is aggravated by arm position. I have TOS, and it causes the front of my chest and neck to be tight, and activities with raised arms like driving a car or sleeping with arm positions that raise the arm in relation to body position will bring on symptoms. My hands used to turn blue and get cold because it decreased circulation. TOS is often best treated with physical therapy and myofascial release which is what I do, and I am making progress with my symptoms. When you have a forward head and shoulder position, it causes issues. Try standing sideways in front of a mirror and look to see if your shoulders line up directly under the center of your neck. That can indicate that the muscles in front are too tight which is a problem with TOS.

It's difficult to get an accurate diagnosis of TOS because it is misunderstood and perceived as rare by doctors. It isn't covered well in medical schools. I was diagnosed by a neurologist and he raised my arm while checking to see if my pulse would diminish and it did. At Mayo, a neurologist listened to my pulse in my neck and had me turn my head, and it also stopped my pulse. I came to Mayo as a spine surgery patient 3 years ago, and they also evaluated my TOS because of overlapping symptoms with a spine issue. Look for specialists for TOS at teaching medical centers that list it as a condition that they treat. A lot of doctors miss it and don't believe patients who talk about the symptoms. That happened to me after carpal tunnel surgery and that doctor was irritated when I came back after surgery telling him that my hand was turning blue. He took my pulse and told me I was fine. When I got a TOS diagnosis from another doctor and told this surgeon, he wanted nothing to do with me, and would not authorize physical therapy because he said he wouldn't be able to evaluate if it was helping me or not. He had completely missed it. It's easy for a doctor to think that symptoms in the hand are only carpal tunnel, but they can be caused anywhere along the nerve path and the same symptoms can be caused by TOS or a spine problem. In my case, I had symptoms from all of this. It's important to figure out all the places that are generating nerve pain before a patient decides to proceed with surgery. Surgery might not help at all, or may not relieve all the symptoms (as in my case) if they miss a problem with overlapping symptoms. You can have a problem of physical compression of nerves in addition to other neuropathies, and it might be worth looking into physical possibilities that can be helped with MFR with physical therapy.

Here are some links about TOS and myofascial release.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Wow! Thank you for all of this information!!! It's a lot to process, but I will definitely take the time to explore this.

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@iceblue

Wow! Thank you for all of this information!!! It's a lot to process, but I will definitely take the time to explore this.

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@iceblue You are welcome!

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@johnbishop

@iceblue my doctor thought it was an issue with the ulnar nerve causing the tingling and pins and needles when sleeping on the side. I generally sleep the same position on either side and both sides after awhile will cause this tingling issue. The hand for the side I'm sleeping on is under the edge of the pillow as flat as I can make it. The other hand I try to keep it flat wherever it wants to go (changes when I fall asleep ☺). Here's more information on the ulnar nerve.

Ulnar Nerve Entrapment at the Elbow (Cubital Tunnel Syndrome)
https://orthoinfo.aaos.org/en/diseases–conditions/ulnar-nerve-entrapment-at-the-elbow-cubital-tunnel-syndrome/

Jump to this post

@johnbishop @iceblue The ulnar nerve is also affected by Thoracic Outlet Syndrome, and it's possible to have entrapment in multiple places. I sleep on my side too and would make my symptoms worse by bending my elbow. When I first noticed what turned out to be TOS, my entire arm was going numb when I slept or tingling and it was not the arm that I was laying on. The position of my neck also affected the numbness and tingling in my hand.

REPLY
@jenniferhunter

@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of the brachial plexus nerve bundle that passes between the rib cage and collar bone and goes to the arms, and it is aggravated by arm position. I have TOS, and it causes the front of my chest and neck to be tight, and activities with raised arms like driving a car or sleeping with arm positions that raise the arm in relation to body position will bring on symptoms. My hands used to turn blue and get cold because it decreased circulation. TOS is often best treated with physical therapy and myofascial release which is what I do, and I am making progress with my symptoms. When you have a forward head and shoulder position, it causes issues. Try standing sideways in front of a mirror and look to see if your shoulders line up directly under the center of your neck. That can indicate that the muscles in front are too tight which is a problem with TOS.

It's difficult to get an accurate diagnosis of TOS because it is misunderstood and perceived as rare by doctors. It isn't covered well in medical schools. I was diagnosed by a neurologist and he raised my arm while checking to see if my pulse would diminish and it did. At Mayo, a neurologist listened to my pulse in my neck and had me turn my head, and it also stopped my pulse. I came to Mayo as a spine surgery patient 3 years ago, and they also evaluated my TOS because of overlapping symptoms with a spine issue. Look for specialists for TOS at teaching medical centers that list it as a condition that they treat. A lot of doctors miss it and don't believe patients who talk about the symptoms. That happened to me after carpal tunnel surgery and that doctor was irritated when I came back after surgery telling him that my hand was turning blue. He took my pulse and told me I was fine. When I got a TOS diagnosis from another doctor and told this surgeon, he wanted nothing to do with me, and would not authorize physical therapy because he said he wouldn't be able to evaluate if it was helping me or not. He had completely missed it. It's easy for a doctor to think that symptoms in the hand are only carpal tunnel, but they can be caused anywhere along the nerve path and the same symptoms can be caused by TOS or a spine problem. In my case, I had symptoms from all of this. It's important to figure out all the places that are generating nerve pain before a patient decides to proceed with surgery. Surgery might not help at all, or may not relieve all the symptoms (as in my case) if they miss a problem with overlapping symptoms. You can have a problem of physical compression of nerves in addition to other neuropathies, and it might be worth looking into physical possibilities that can be helped with MFR with physical therapy.

Here are some links about TOS and myofascial release.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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My goodness folks, this is so me! My PT was working on these areas and he really put a hurting on me. Unfortunately, insurance cut my PT visits off. So I wait for new year and Medicare. Hoping to get back on the MFR grind.

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@jenniferhunter

@johnbishop @iceblue The ulnar nerve is also affected by Thoracic Outlet Syndrome, and it's possible to have entrapment in multiple places. I sleep on my side too and would make my symptoms worse by bending my elbow. When I first noticed what turned out to be TOS, my entire arm was going numb when I slept or tingling and it was not the arm that I was laying on. The position of my neck also affected the numbness and tingling in my hand.

Jump to this post

Again, me! I'm joining your club. Sleep with arm under pillow, wake with complete numbness down arm to fingers with.pund needles and tingles. Happens even when sleeping in recliner to control my position. Glad to hear you all discussing it. There's so much I want to discuss but honestly it feels like complain, complain, complain so I'm happy to jump in. Thanks again for reminding me I'm not alone in this crazy journey.

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@rwinney

Again, me! I'm joining your club. Sleep with arm under pillow, wake with complete numbness down arm to fingers with.pund needles and tingles. Happens even when sleeping in recliner to control my position. Glad to hear you all discussing it. There's so much I want to discuss but honestly it feels like complain, complain, complain so I'm happy to jump in. Thanks again for reminding me I'm not alone in this crazy journey.

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Hi, Rachel!

I don’t get a “complain” vibe from your posts. There’s comfort in community so I understand your desire to find others with similar challenges/symptoms. Furthermore, you provide so many tips and helpful advice. I know I personally benefit from reading all of your posts. Just my two cents. 🙂

Kia

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@klro0001

Hi, Rachel!

I don’t get a “complain” vibe from your posts. There’s comfort in community so I understand your desire to find others with similar challenges/symptoms. Furthermore, you provide so many tips and helpful advice. I know I personally benefit from reading all of your posts. Just my two cents. 🙂

Kia

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Kia,
You are the sweetest!
Thank you and I'm always hoping to help and inspire the way others do for me.
Rachel

Liked by Jennifer Hunter

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@cncwi17

My name is Carol Selius and I have vibration feelings under my toes. Nothing seems to help. I am seeing a naturopathic doctor and I'm taking alot of supplements. I was diagnosed with candida and getting treatment for that. We both think it's due to a possible mutated gene. I also have tightness and numbness under my right toes and my left foot and ankle are numb.

Jump to this post

HI, @cncwi17 – I can imagine finding nothing that helps with vibration feelings under your toes must be difficult. What other treatments in addition to the supplements you mentioned have you tried for your symptoms thus far?

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@johnbishop

Hi Carol @cncwi17, I see that you recently joined Connect and would like to welcome you. I'm wondering if the vibration feelings under your toes that you describe are muscle spasms or fasciculations. There is another discussion that you may find helpful.

> Groups > Neuropathy > Peripheral Neuropathy and benign fasciculation syndrome.
https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/

You mentioned nothing seems to help with the vibration feelings under the toes. May I ask what you have tried?

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It's caused by sitting in a car and the vibration of the car. I have to drive. My nerves are super ultra sensitive. I have to put a pillow on top and a pillow underneath my right foot if I'm not driving. It seems to works. It's very fustrating. Vibrations from the car makes my toes and under my right toes to vibrate and it's painful. It's fasciculations.

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My neurologist dx'd me with PN. I have numbness in both feet and ankles. In my hands up to my wrists I have a feeling of sand esp. in my fingers. My feet and hands are always cold. This began @ i year ago. The dx. is a bit confusing because I also have cervical and lumbar stenosis. Lumbar laminotomy and cervical fusion did help the low back pain and upper extremity paresthesia.
I find gabapentin helped a little but I was overly sedated by it. I have mild balance and do not want to fall.
I feel better with Pickle Ball and yoga as my exercises.

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