Small Fiber Neuropathy

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.

@brie87144

Sorry my life had been up in shambles lately. I haven’t really found any options for my neuropathy. The neurologist at mayo in Az told me it’s not a condition he will treat until they know the cause. Which knowing the cause is kinda impossible since I have so much else going on. I need to go back to the neurologist but won’t be doing that till I recover from my recent surgery.

Have you found anything useful or come across any ways to deal better?

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Hi Brie
Please consider going to see Dr Todd Levine, a neurologist in Phoenix who knows a vast amount re SFN. PLUS he is fabulous and really a good listener. His staff is great too. He has authored a book with several other docs (including Ann Oaklander) re SFN. Good luck.!

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I have been and am having these problems for some time now. I have no definitive diagnosis. I have had several stomach surgeries and think that SIBO is involved causing nutritional absorption problems. I also have bad balance issues. I have been self injecting with B12 for several months and think that is somewhat helpful. I have had tons of blood tests and have had low Ferritin and other iron storage issues.
Have you had similar issues? I have nausea issues as well. I hope we both find solutions soon and get well again!

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@sita I’m so sorry you are having all of those issues. I only have arthritic pain and severe (to me) neuropathy in my left hand. I do at times have balance issues.
For the stomach issues ask for a CT scan with contrast and have them look for intestinal ischemia. That diagnosis means that your intestines are not getting enough blood supply.
My mom had that disorder and if they had found it earlier she may be alive today.
She had diarrhea & trowing up. In an 8 month period she lost 75 pounds and her doctors didn’t test for that disorder. Instead they told her it was in her head and to see a counselor. She even did that about 3 times before the counselor told her that there wasn’t anything wrong with her mentally.
I hope things start looking up for you soon.
Regards,
Becki

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So sorry, I accidentally posted this reply in the wrong spot. This is for Lisa..
I have been and am having these problems for some time now. I have no definitive diagnosis. I have had several stomach surgeries and think that SIBO is involved causing nutritional absorption problems. I also have bad balance issues. I have been self injecting with B12 for several months and think that is somewhat helpful. I have had tons of blood tests and have had low Ferritin and other iron storage issues.
Have you had similar issues? I have nausea issues as well. I hope we both find solutions soon and get well again!

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@beckiw814

@sita I’m so sorry you are having all of those issues. I only have arthritic pain and severe (to me) neuropathy in my left hand. I do at times have balance issues.
For the stomach issues ask for a CT scan with contrast and have them look for intestinal ischemia. That diagnosis means that your intestines are not getting enough blood supply.
My mom had that disorder and if they had found it earlier she may be alive today.
She had diarrhea & trowing up. In an 8 month period she lost 75 pounds and her doctors didn’t test for that disorder. Instead they told her it was in her head and to see a counselor. She even did that about 3 times before the counselor told her that there wasn’t anything wrong with her mentally.
I hope things start looking up for you soon.
Regards,
Becki

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Thanks Becky. Looking back I realized Lisa’s post was from 2017!

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@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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Ronnie, hello. Botox does wear off after about 6 months (my mom had the same injections). There might be another reason for trouble voiding. You are also describing pins and needles pain all over your body. I had those same pains and symptoms from cervical stenosis. Having spinal cord compression in your neck can cause the same symptoms as it happened to me, a having spine surgery at Mayo, fixed all of that. If no one explored the possibility of a spine issue for you, that might be another place to look particularly if you have had a whiplash in your past that could have damaged your spine. Trouble voiding would be the earlier stages and incontinence would be later stages if it is caused by spinal cord compression. You could also have an un-diagnosed spine problem at lower levels that could be a contributor. Have they checked for diabetes?

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@aliceccentric

My fiance and I are looking for experts in treating Small Fiber Neuropathy. Who are the best doctors/teams to treat this condition and where are they located?

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Hello @aliceccentric, Welcome to Connect. You are asking a good question and I'm hoping you will get some responses. For me, the better question is what types of treatments work best for small fiber neuropathy. I've had neuropathy for over 20 years but was only recently diagnosed a couple of years ago because I was always told if it's nerve damage there's nothing they can do about it anyway. I finally wanted to know and had an EMG and other tests and met with a Mayo neurologist and told I have idiopathic small fiber peripheral neuropathy. I only have numbness with my neuropathy so asked the neurologist what can be done to help with the numbness. I was pretty depressed when I was told nothing helps with the numbness. There are no topicals, oils or treatments that can address the numbness. All of the medications and treatments address and mask the pain. That started my search and is how I found Mayo Connect. I've posted what has helped me a little in my story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is a lot of research being done but I don't know how it relates to new treatments yet that have been successful and have had FDA clinical trials. Here are a few of the links I've found from the past few years.

ScienceDaily – Stem Cell Supplement – Proven To Increase Stem Cells (Sept 2016)
https://www.sciencedaily.com/releases/2016/09/160916132053.htm

NeuroScience News – Blocking Neuron Signaling Pathway May Lead to New Treatments For Peripheral Neuropathy (Jan 2017)
https://neurosciencenews.com/peripheral-neuropathy-signaling-pathway-5958/

ScienceDaily – Nerve wrapping nanofiber mesh promoting regeneration (Feb 2017)
https://www.sciencedaily.com/releases/2017/02/170228223753.htm

@aliceccentric have tried any treatments that have or haven't helped? Are you able to share a little more about your small fiber neuropathy symptoms?

Hoping some of our other members will be able to provide some suggestions for you.

John

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My fiance and I are looking for experts in treating Small Fiber Neuropathy. Who are the best doctors/teams to treat this condition and where are they located?

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@aliceccentric

My fiance and I are looking for experts in treating Small Fiber Neuropathy. Who are the best doctors/teams to treat this condition and where are they located?

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@aliceccentric, welcome to our very involved and committed group of folks dedicated to finding treatments that help and then sharing them with others who suffer from a similar condition. I received my diagnosis of idiopathic small fiber neuropathy 2 years ago. Unlike @johnbishop, my slice of the pie also arrived with pain. So the steps for me in rank order are numbness, tingling, and then needle-like pain. With the growing intensity of my symptoms over time, the numbness became a more urgent issue as my stability declined and I was on the verge of giving up driving because I couldn't feel my feet. The solution arrived in an unexpected way….myofascial release therapy conducted by an expert level MFR therapist. I now see her one a week and some of our time together is spent bringing feeling back to my hands and feet. It is great to walk across a carpeted floor and actually feel the loops of the fiber. It is rewarding to know that my foot is actually on the brake in the car. My feet are not as tight and the feeling of restriction is considerably alleviated. The benefit of the treatments can last up to 2 weeks. Might be worth a try.

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Hi @aliceccentric,

I'd like to add my welcome and also let you know that I moved your discussion and combined it with this existing discussion on small fiber neuropathy. I did this as I thought it would be beneficial for you to connect with other members who've share their experiences, and may be able to help you, as well.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

As @johnbishop mentioned, I too, look forward to getting to know you better.

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Post by @artscaping to @aliceccentric (lost when we moved @aliceccentric's post here)

@aliceccentric, welcome to our very involved and committed group of folks dedicated to finding treatments that help and then sharing them with others who suffer from a similar condition. I received my diagnosis of idiopathic small fiber neuropathy 2 years ago. Unlike @johnbishop, my slice of the pie also arrived with pain. So the steps for me in rank order are numbness, tingling, and then needle-like pain. With the growing intensity of my symptoms over time, the numbness became a more urgent issue as my stability declined and I was on the verge of giving up driving because I couldn't feel my feet. The solution arrived in an unexpected way….myofascial release therapy conducted by an expert level MFR therapist. I now see her one a week and some of our time together is spent bringing feeling back to my hands and feet. It is great to walk across a carpeted floor and actually feel the loops of the fiber. It is rewarding to know that my foot is actually on the brake in the car. My feet are not as tight and the feeling of restriction is considerably alleviated. The benefit of the treatments can last up to 2 weeks. Might be worth a try.

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@johnbishop

Post by @artscaping to @aliceccentric (lost when we moved @aliceccentric's post here)

@aliceccentric, welcome to our very involved and committed group of folks dedicated to finding treatments that help and then sharing them with others who suffer from a similar condition. I received my diagnosis of idiopathic small fiber neuropathy 2 years ago. Unlike @johnbishop, my slice of the pie also arrived with pain. So the steps for me in rank order are numbness, tingling, and then needle-like pain. With the growing intensity of my symptoms over time, the numbness became a more urgent issue as my stability declined and I was on the verge of giving up driving because I couldn't feel my feet. The solution arrived in an unexpected way….myofascial release therapy conducted by an expert level MFR therapist. I now see her one a week and some of our time together is spent bringing feeling back to my hands and feet. It is great to walk across a carpeted floor and actually feel the loops of the fiber. It is rewarding to know that my foot is actually on the brake in the car. My feet are not as tight and the feeling of restriction is considerably alleviated. The benefit of the treatments can last up to 2 weeks. Might be worth a try.

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Thanks Chris @artscaping – I copied and pasted your post here. I still haven't looked into the MFR treatment but once I get me knee back to somewhat normal I'm thinking about looking into it.

Liked by Chris Trout

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@johnbishop

Post by @artscaping to @aliceccentric (lost when we moved @aliceccentric's post here)

@aliceccentric, welcome to our very involved and committed group of folks dedicated to finding treatments that help and then sharing them with others who suffer from a similar condition. I received my diagnosis of idiopathic small fiber neuropathy 2 years ago. Unlike @johnbishop, my slice of the pie also arrived with pain. So the steps for me in rank order are numbness, tingling, and then needle-like pain. With the growing intensity of my symptoms over time, the numbness became a more urgent issue as my stability declined and I was on the verge of giving up driving because I couldn't feel my feet. The solution arrived in an unexpected way….myofascial release therapy conducted by an expert level MFR therapist. I now see her one a week and some of our time together is spent bringing feeling back to my hands and feet. It is great to walk across a carpeted floor and actually feel the loops of the fiber. It is rewarding to know that my foot is actually on the brake in the car. My feet are not as tight and the feeling of restriction is considerably alleviated. The benefit of the treatments can last up to 2 weeks. Might be worth a try.

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Has anyone here thought they have fibromyalgia. ?or muscle skeletal issues. It’s so confusing. The all over body pain. I go for soft tissue massage. My body hurts horribly afterwards. Every inch bones muscles tendons skin. Same with swim therapy So I had the punch biopsy last week to see if it’s neurapathy.
Test results 2 weeks.
I just constantly hurt all over head to toe. It’s like having the flu but you don’t.
Anyway I just saw the test for Fibromyalgia. FM/a suppose to be a definite way to diagnose fibromyalgia.

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I have no diagnosis yet but it seems clear to me that I have some form of neuropathy. 18 months ago I woke up one morning and had some facial numbness and had numbness and tingling pretty much all over. I thought I slept the wrong way on my neck or something. Had a brain and cervical MRI to rule out MS. Since then the numbness and tingling progressed into intense burning in my feet and my pins and needles over the rest of my body and now pins/needles, muscle cramping and twitching. The pain is the worst in my feet and hands. The twitching drives me crazy and it all is making me nervous about what is going on. I've had all the autoimmune tests and today I had an EMG and conduction test which was only slightly abnormal but not enough to give me a diagnosis. I've read a lot about SFN and I guess that's what if could be? I'm guessing I would have to have a skin biopsy? I would like to know if anyone with SFN has muscle cramps, weakness and twitching. I thought that was mainly from large fiber or motor neuropathy? I hate this! I know the doctors are starting to think I'm just crazy. I would appreciate any input. Thank you!

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@bethb94

I have no diagnosis yet but it seems clear to me that I have some form of neuropathy. 18 months ago I woke up one morning and had some facial numbness and had numbness and tingling pretty much all over. I thought I slept the wrong way on my neck or something. Had a brain and cervical MRI to rule out MS. Since then the numbness and tingling progressed into intense burning in my feet and my pins and needles over the rest of my body and now pins/needles, muscle cramping and twitching. The pain is the worst in my feet and hands. The twitching drives me crazy and it all is making me nervous about what is going on. I've had all the autoimmune tests and today I had an EMG and conduction test which was only slightly abnormal but not enough to give me a diagnosis. I've read a lot about SFN and I guess that's what if could be? I'm guessing I would have to have a skin biopsy? I would like to know if anyone with SFN has muscle cramps, weakness and twitching. I thought that was mainly from large fiber or motor neuropathy? I hate this! I know the doctors are starting to think I'm just crazy. I would appreciate any input. Thank you!

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Hi @bethb94, I think a lot of us have been where you are and I'm glad to see you are being proactive and learning as much as you can about your health condition. It can be unsettling to not have a diagnosis but don't give up. The National Institutes of Health page has some good information on diagnosis and treatment here:

NIH – Diagnosis and Treatment of Pain in Small Fiber Neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

Did your doctors schedule any more tests for you or an appointment with a neurologist or other specialist?

John

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