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Small Fiber Neuropathy: What helps?

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

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

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twobrooklyn | @twobrooklyn | Dec 14, 2021
In reply to @jinxedroot93 "I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've..." + (show)
Profile picture for jinxedroot93 @jinxedroot93

I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've had symptoms since as early as 12 years old. I've been able to manage things pretty well until recently. About 2 months ago it seems my symptoms have gotten worse, and I now can not tell how much pressure I'm putting on a gas or break petal. I explained this to my neurologist at MUSC and was given a blanket statement and told to see a phycologist because its not SFN. I then questioned the Dr. why they would tell me three years ago that what I was describing was a symptom but now its not, and I was brushed off and told not to drive until something can be figured out. They offered an in person appointment in January but I'm not sure if I should continue with that Dr. Has anyone experienced numbness to the point of not being able to drive? Also does anyone have any suggestions for Neurologist's in S.C.? Thanks in advance

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About three months ago I had a very hard time feeling the brake and gas pedal, I had to always look down to make sure I was pushing down in the brake. I started doing really hard deep tissue massage in my feet usually twice a day along with vigorous stretching exercise. I have so far managed to reduce the numbness in my left foot about 80% and right foot about 70%. I now have no trouble feeling the brake and gas pedals. Strangely enough now my fingers have more numbness comes and goes especially at night.

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3 replies
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twobrooklyn | @twobrooklyn | Dec 14, 2021

Yes PN can effect your bowel and bladder, both controlled by neurons.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 14, 2021
In reply to @rivermaya34 "Something I've been experiencing for awhile now is random fingertip pain in all 10 of my..." + (show)
Profile picture for rivermaya34 @rivermaya34

Something I've been experiencing for awhile now is random fingertip pain in all 10 of my fingertips which usually starts at night and lasts for a few days. The timing is very random and I can never pinpoint a cause/significant stimulating factor. Frustrating. It feels like pressure underneath each of my nail beds which is localized there, and I feel like I have to press on them constantly. Somewhat sensitive and painful to touch, too. I tried therapeutic tape in the past on just my thumb/pinky fingers which gave minor relief, but I can't find anything that works. Does anybody else have this problem or have any suggestions on things to try? Thanks y'all

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Hi @rivermaya34, I've had instances where one of my fingernails is sore and hurts if I press on it but I haven't had it in all of my fingers. Here's an article with different possibilities and some home remedies that may be helpful.

7 Reasons You Feel Pain Under Your Fingernail When Pressed: https://www.healthline.com/health/pain-under-fingernail-when-pressed

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1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Dec 14, 2021
In reply to @jinxedroot93 "I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've..." + (show)
Profile picture for jinxedroot93 @jinxedroot93

I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've had symptoms since as early as 12 years old. I've been able to manage things pretty well until recently. About 2 months ago it seems my symptoms have gotten worse, and I now can not tell how much pressure I'm putting on a gas or break petal. I explained this to my neurologist at MUSC and was given a blanket statement and told to see a phycologist because its not SFN. I then questioned the Dr. why they would tell me three years ago that what I was describing was a symptom but now its not, and I was brushed off and told not to drive until something can be figured out. They offered an in person appointment in January but I'm not sure if I should continue with that Dr. Has anyone experienced numbness to the point of not being able to drive? Also does anyone have any suggestions for Neurologist's in S.C.? Thanks in advance

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Hello @jinxedroot93, Welcome to Connect. I have numbness from my idiopathic small fiber PN but so far it has not bothered my ability to drive. That is also one of my major concerns. I think each of us is a little different and may not quite experience the numbness the same way. I have been taking supplements since 2016 which I think are helping me. You can read my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. Other members have mentioned deep tissue massage, stretching and other techniques have helped some with the numbness. You might find the following discussion helpful:

Anyone use a device to allow driving without foot pedals?: https://connect.mayoclinic.org/discussion/device-to-allow-driving-wo-using-foot-pedals/

I would be irritated to say the least if my doctor brushed me off the way your doctor did. The Foundation for Peripheral Neuropathy has Find a doctor page and lists 4 different ones including one from MUSC (hope it's not your doctor!).
-- https://www.foundationforpn.org/support/find-a-doctor/

The link above also has some complementary and integrative treatments that may help with your symptoms. Have you tried any other type treatments?

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1 reply
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jinxedroot93 | @jinxedroot93 | Dec 14, 2021
In reply to @johnbishop "Hello @jinxedroot93, Welcome to Connect. I have numbness from my idiopathic small fiber PN but so..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @jinxedroot93, Welcome to Connect. I have numbness from my idiopathic small fiber PN but so far it has not bothered my ability to drive. That is also one of my major concerns. I think each of us is a little different and may not quite experience the numbness the same way. I have been taking supplements since 2016 which I think are helping me. You can read my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. Other members have mentioned deep tissue massage, stretching and other techniques have helped some with the numbness. You might find the following discussion helpful:

Anyone use a device to allow driving without foot pedals?: https://connect.mayoclinic.org/discussion/device-to-allow-driving-wo-using-foot-pedals/

I would be irritated to say the least if my doctor brushed me off the way your doctor did. The Foundation for Peripheral Neuropathy has Find a doctor page and lists 4 different ones including one from MUSC (hope it's not your doctor!).
-- https://www.foundationforpn.org/support/find-a-doctor/

The link above also has some complementary and integrative treatments that may help with your symptoms. Have you tried any other type treatments?

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I started with gabapentin but I have a bad reaction to it. Since then I've gone through a bunch of different medications. Now I take Librium. Nothing has actually helped with anything, and when I ask for alternative treatments I'm told to walk more. I walk everyday twice a day.

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jinxedroot93 | @jinxedroot93 | Dec 14, 2021
In reply to @twobrooklyn "About three months ago I had a very hard time feeling the brake and gas pedal,..." + (show)
Profile picture for twobrooklyn @twobrooklyn

About three months ago I had a very hard time feeling the brake and gas pedal, I had to always look down to make sure I was pushing down in the brake. I started doing really hard deep tissue massage in my feet usually twice a day along with vigorous stretching exercise. I have so far managed to reduce the numbness in my left foot about 80% and right foot about 70%. I now have no trouble feeling the brake and gas pedals. Strangely enough now my fingers have more numbness comes and goes especially at night.

Jump to this post

I will have to try that. Thank you

REPLY
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retired123 | @retired123 | Dec 14, 2021
In reply to @jinxedroot93 "I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've..." + (show)
Profile picture for jinxedroot93 @jinxedroot93

I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've had symptoms since as early as 12 years old. I've been able to manage things pretty well until recently. About 2 months ago it seems my symptoms have gotten worse, and I now can not tell how much pressure I'm putting on a gas or break petal. I explained this to my neurologist at MUSC and was given a blanket statement and told to see a phycologist because its not SFN. I then questioned the Dr. why they would tell me three years ago that what I was describing was a symptom but now its not, and I was brushed off and told not to drive until something can be figured out. They offered an in person appointment in January but I'm not sure if I should continue with that Dr. Has anyone experienced numbness to the point of not being able to drive? Also does anyone have any suggestions for Neurologist's in S.C.? Thanks in advance

Jump to this post

I have had NO help from the "professionals". All of them dismiss my concerns. The most help was from a podiatrist and a vein specialist tried his best. "One size fits all" comments. This chatroom and online researching plus trial and error is where I get help. My advice is to stay away from all sugars, take nerve support supplements, good nutrition and be as active as you can. ALWAYS keep a positive outlook and continue to educate yourself on SFN. Your body and brain listen to you. I know it is difficult when your life is now different.

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1 reply
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rivermaya34 | @rivermaya34 | Dec 14, 2021
In reply to @twobrooklyn "About three months ago I had a very hard time feeling the brake and gas pedal,..." + (show)
Profile picture for twobrooklyn @twobrooklyn

About three months ago I had a very hard time feeling the brake and gas pedal, I had to always look down to make sure I was pushing down in the brake. I started doing really hard deep tissue massage in my feet usually twice a day along with vigorous stretching exercise. I have so far managed to reduce the numbness in my left foot about 80% and right foot about 70%. I now have no trouble feeling the brake and gas pedals. Strangely enough now my fingers have more numbness comes and goes especially at night.

Jump to this post

@twobrooklyn That's really good to know, because I am having the same problem!! Thanks for sharing!

REPLY
Profile picture for rivermaya34
rivermaya34 | @rivermaya34 | Dec 14, 2021
In reply to @jinxedroot93 "I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've..." + (show)
Profile picture for jinxedroot93 @jinxedroot93

I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've had symptoms since as early as 12 years old. I've been able to manage things pretty well until recently. About 2 months ago it seems my symptoms have gotten worse, and I now can not tell how much pressure I'm putting on a gas or break petal. I explained this to my neurologist at MUSC and was given a blanket statement and told to see a phycologist because its not SFN. I then questioned the Dr. why they would tell me three years ago that what I was describing was a symptom but now its not, and I was brushed off and told not to drive until something can be figured out. They offered an in person appointment in January but I'm not sure if I should continue with that Dr. Has anyone experienced numbness to the point of not being able to drive? Also does anyone have any suggestions for Neurologist's in S.C.? Thanks in advance

Jump to this post

@jinxedroot93 I see Dr. Robert Carlile in Summerville, SC (near Charleston) and I wouldn't change to anybody else in the world! He is the most in depth and thorough than anyone else I've been to, and he was the one who finally got answers to my problems and a path to managing them! He really, really cares about people and his bedside manner is calm and warm. Even though he does not suffer from nerve pain, he deeply cares and will spend the time with you to answer any questions and keep things cost-effective. Good luck!

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1 reply
Profile picture for rivermaya34
rivermaya34 | @rivermaya34 | Dec 14, 2021
In reply to @johnbishop "Hi @rivermaya34, I've had instances where one of my fingernails is sore and hurts if I..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi @rivermaya34, I've had instances where one of my fingernails is sore and hurts if I press on it but I haven't had it in all of my fingers. Here's an article with different possibilities and some home remedies that may be helpful.

7 Reasons You Feel Pain Under Your Fingernail When Pressed: https://www.healthline.com/health/pain-under-fingernail-when-pressed

Jump to this post

@johnbishop Thanks for the link! It's definitely nerve pain underneath my fingernails, but it also feels pressurized, it'd be like if you were getting zapped by a metal door handle constantly but that feeling was being trapped underneath all your nails...a bit crazy lol. And it's so random!

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