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lisadog33
@lisadog33

Posts: 1
Joined: Mar 28, 2017

Small Fiber Neuropathy

Posted by @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.

REPLY

@changegonnacome

Hello there,

I have been on a long, expensive, medicine filled journey to find the cause of my SFN. I have had progressive numbness in my hands and feet for several years. SFN can absolutely affect your bladder control. I have bladder retention, and other bladder and bowel issues because my autonomic nervous system is involved. I have a diagnosis of Lupus, with normal labs since diagnosis, and with progressive numbness, tingling, edema, loss of sensation, loss of hot/cold perception in my hands in feet. I also have tremors in my legs, and issues with sweating. It is frustrating, and as I use my hands exclusively in my line of work, the progression of this with no foreseeable reversal or cure feels very defeating. I just moved from one state to another, and have had to re-establish with new providers. The next step in diagnosis is a skin biopsy.

I wake up multiple times a night with pain, and complete numbness in my arms and hands. I wake up to swollen hands, and painful joints. I simply cannot afford to have my hands go numb during a procedure, and the medication available such as Gabapentin affects mentation. I am happy to have found a place of understanding in this group, as it is difficult for people to understand the impact of SFN on daily life. They see it merely as a nuisance, not life alternating.

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Hello @changegonnacome, welcome to Mayo Connect. I also have small fiber peripheral neuropathy (SFPN). Mine was diagnosed as idiopathic which just means they don’t know what causes it. When I finally decided to get a diagnosis I had already had numbness without pain in my feet for over 20 years. It started in the toes and gradually worked it’s way up to just below my knees which is when I made an appointment with a neurologist to get a diagnosis and see what treatments would help. The neurologist told me there were no drugs or topical creams/ointments, etc. that would help with the numbness. They are pretty much just for the pain. That’s when I started doing my own research and trying a lot of different things to see if I could find something that would help. I have to caution you as there are a lot of people making money off of those of us looking for the magic cure where none may exist. I started looking into nutrition at the cellular level after reading Dr. Terry Wahls story and getting her book The Wahls Protocol. Here is a link to her story:
http://terrywahls.com/about/about-terry-wahls/

Her book convinced me to start eating healthier whether it “fixes” my problem or not. I found something that has helped myself and others – an over the counter protocol of vitamins and supplements. Here is a link to my story:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

Hoping you find something that works for you.

John

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Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.

@steeldove

Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.

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Clinical trials for what? Neurologist at St. Louis said that it's small fibre and large bundles, and I've no, really NO feeling in my feet. Knew I had to stop driving when in order to drive I had my left hand on the steering wheel and my right hand on the emergency brake. I'm definitely NOT giving up driving, so I'm having Kempf electronic hand controls installed on my tiny Prius c.

@steeldove

Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.

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I still hold out hope for treatments that "repair" damaged nerves instead of just treating the symptoms. Drugs that are now being used do nothing to help with the nerves themselves, all they do is "trick" the brain into blocking the pain signals (my non medical training or background words). Before I saw my neurologist, my doctor put me on gabapentin and it did nothing for me. Then I found out it doesn't do anything for numbness so I stopped taking it.

The only real caution is that there are a lot of companies out there making money off of folks with PN who are in extreme pain. What they offer may or may not help so you have to be your own advocate and do your own research.

John

@steeldove

Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.

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@steeldove, the Kempf electronic hand controls for your car sounds like it will be a big help for you. If possible can you share how it works for you?

Good luck!
John

@steeldove

Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.

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Definitely will share info about the Kempf electronic hand controls. Locally I tried mechanical hand controls, but the ones the local evaluator was pushing on me were controlled with my left hand–twist for gas, push for brake–with a steering knob required on the steering wheel. A retired MD with multiple sclerosis let me try his vehicle which is equipped with Kempf controls–a ring inside the steering wheel for gas, a lever near the steering wheel for brake–and it felt totally intuitive. At the push of a button, the electronic controls can be turned off and the vehicle can be driven by anyone in the usual way. Google Kempf hand controls and explore the website. Costs much, mulch more than mechanical controls, but I'm buying my independence (thanks to my wonderful daughter!).

Hey Guys I have been diagnosed with small fiber neuropathy in September of 2016 foot and leg pain pins and needles! Also bladder and bowel pain! Also vision loss! The most annoying part is the bladder pain, feels like I have to irritate ever min and pins and needles all over my body and sharp stabbing pains in the abdomen area! I had Botox injected into my bladder in January 2017 and it helped with the pain and it now wearing off and I am having trouble voiding because the muscles are so relaxed from the Botox! So I am looking for advice! I have been to the Mayo they were no help! Please help any and a help is appreciated!

@ronnieanderson

Hey Guys I have been diagnosed with small fiber neuropathy in September of 2016 foot and leg pain pins and needles! Also bladder and bowel pain! Also vision loss! The most annoying part is the bladder pain, feels like I have to irritate ever min and pins and needles all over my body and sharp stabbing pains in the abdomen area! I had Botox injected into my bladder in January 2017 and it helped with the pain and it now wearing off and I am having trouble voiding because the muscles are so relaxed from the Botox! So I am looking for advice! I have been to the Mayo they were no help! Please help any and a help is appreciated!

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Hello @ronnieanderson — Welcome to Connect. I have small fiber peripheral neuropathy which mostly effects my feet and a little above my ankles. I only have numbness with my PN, no pain so I'm fortunate that way. You might want to read through the following discussion for others with similar bladder symptoms:

Groups > Brain & Nervous System > Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

I'm tagging the following members have posted similar symptoms to yours and mentioned bladder problems — @lisadog33, @brie87144, @steeldove and @changegonnacome, do you have any suggestions for @ronnieanderson?

John

Thank you for your reply ! I hope we all can share our symptoms and experiences for a better understanding! Anyone that’s willing to private message me that would be amazing!

@ronnieanderson

Thank you for your reply ! I hope we all can share our symptoms and experiences for a better understanding! Anyone that’s willing to private message me that would be amazing!

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Hi Ronnie, for your safety from spammers and scammers I would recommen that members tell others to send them a private message and use that to exchange personal contact information. That way your personal information stays hidden and you don't get a lot of calls. It's easy to send a private message — just click on the users member name link and when their profile is displayed click the Send Private Message link.

John

@ronnieanderson

Thank you for your reply ! I hope we all can share our symptoms and experiences for a better understanding! Anyone that’s willing to private message me that would be amazing!

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Hi @ronnieanderson, I second what John said and have removed your phone number from the message above. We advise against sharing personal contact information on this public forum. I would also like to underline the benefits of sharing with the group. By sharing with many, you have access to different experiences, perspectives and solutions.

@changegonnacome

Hello there,

I have been on a long, expensive, medicine filled journey to find the cause of my SFN. I have had progressive numbness in my hands and feet for several years. SFN can absolutely affect your bladder control. I have bladder retention, and other bladder and bowel issues because my autonomic nervous system is involved. I have a diagnosis of Lupus, with normal labs since diagnosis, and with progressive numbness, tingling, edema, loss of sensation, loss of hot/cold perception in my hands in feet. I also have tremors in my legs, and issues with sweating. It is frustrating, and as I use my hands exclusively in my line of work, the progression of this with no foreseeable reversal or cure feels very defeating. I just moved from one state to another, and have had to re-establish with new providers. The next step in diagnosis is a skin biopsy.

I wake up multiple times a night with pain, and complete numbness in my arms and hands. I wake up to swollen hands, and painful joints. I simply cannot afford to have my hands go numb during a procedure, and the medication available such as Gabapentin affects mentation. I am happy to have found a place of understanding in this group, as it is difficult for people to understand the impact of SFN on daily life. They see it merely as a nuisance, not life alternating.

Jump to this post

Hi There
It is the first time for me to join in a group and talk about my sever pain from SFN . In my condition it is unknown reason , it is called Idiopathic . They tried all the nerve pain medication with me but my body get along with it so fast and the pain increases.
SFN affects my right hand until my elbow and my both legs until my knee . I feel burning , cramps and tremors in my legs .
Numbness, tingling, and painful .
I quit from my work due to my situation. Suddenly my life turned up side down . I can’t walk even 10 minuets or do any house duty and cooking .
Finally they give me Medical CANNABIS ( oil ) take it oral 3 time a day . It works better than other chemical medication .
It is legal here in Canada .

Hello @azza1, welcome to Connect. I also have idiopathic small fiber peripheral neuropathy except I only have numbness and tingling as a symptom. I don't the the pain that most have with their PN. One of the supplements I take for my PN is organic hemp oil for the plant based Omega 3 and Omega 6 oil. If you want more information on what I take for my PN I have included links where I posted my PN story and how I found Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@azza1 does the Medical Cannabis oil relieve your pain so that you are do normal activities?

John

@johnbishop

Hello @azza1, welcome to Connect. I also have idiopathic small fiber peripheral neuropathy except I only have numbness and tingling as a symptom. I don't the the pain that most have with their PN. One of the supplements I take for my PN is organic hemp oil for the plant based Omega 3 and Omega 6 oil. If you want more information on what I take for my PN I have included links where I posted my PN story and how I found Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@azza1 does the Medical Cannabis oil relieve your pain so that you are do normal activities?

John

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Medical Cannabis as oil relieves my pain to a certain limit and let walk easily . I am taking it by prescription and the pain clinic sent a certificate for me . The prescription has a certain dose and this dose will increase gradually everyday until you feel better and no pain . You have a max dose a day and I am not reach it yet . I feel the heaviest of my legs is gone and I can walk better for a more time than before .

@azza1

Medical Cannabis as oil relieves my pain to a certain limit and let walk easily . I am taking it by prescription and the pain clinic sent a certificate for me . The prescription has a certain dose and this dose will increase gradually everyday until you feel better and no pain . You have a max dose a day and I am not reach it yet . I feel the heaviest of my legs is gone and I can walk better for a more time than before .

Jump to this post

It's good to hear that the Medical Cannabis works for you and relieves some of the pain.

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