1. < Neuropathy

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.

jasont | @jasont | Feb 22, 2019
In reply to @teetee7 "Hi @jasont. Welcome to Mayo Clinic Connect. This is a great place to meet others and..." + (show)
@teetee7

Hi @jasont. Welcome to Mayo Clinic Connect. This is a great place to meet others and exchange stories, as well as reading information that is posted throughout the site.

I was diagnosed with severe SFN in 2015. (Also idiopathic). I am so sorry you are suffering with this pain. I can relate.

Are you seeing a Neurologist? Have you tried anything topical to try and alleviate your pain? Can you describe your pain - tingling, pains and needles, sharp, sunburn skin feeling, etc.? Do you have any numbness?

Please know that you are not alone. There are quite a few members who have this diagnosis and will chime in and offer support.

Best wishes for less pain over the weekend,

TeeTee

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My pain is everything from burning to sharp lightning bolts to pins and needles to aching. my feet are around 75% numb and the numbness runs up the outside of each leg to my knee. My pain is always and it sucks. Thanks for your kind words and it is GREAT to know that i am not alone ( not that i want anyone else to have ISFN)

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2 replies
teetee7 | @teetee7 | Feb 22, 2019
In reply to @jasont "My pain is everything from burning to sharp lightning bolts to pins and needles to aching...." + (show)
@jasont

My pain is everything from burning to sharp lightning bolts to pins and needles to aching. my feet are around 75% numb and the numbness runs up the outside of each leg to my knee. My pain is always and it sucks. Thanks for your kind words and it is GREAT to know that i am not alone ( not that i want anyone else to have ISFN)

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Oh boy, yes. What you have described is what I feel mostly in both hands and both forearms. I also have it in the same areas as you, but my hands and forearms are the worst with the SFN.

You definitely are not alone. And, yes, I wouldn't want anyone else to suffer with SFN.

Were you diagnosed via punch biopsies? Do you see a Neurologist? What are you doing for your pain? At first, topical ointments and lidoderm patches helped, in addition to Gabapentin. (I am so thankful Gabapentin agrees with me - I can't imagine life without it. It helps to take the edge off).

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jasont | @jasont | Feb 22, 2019
In reply to @jasont "My pain is everything from burning to sharp lightning bolts to pins and needles to aching...." + (show)
@jasont

My pain is everything from burning to sharp lightning bolts to pins and needles to aching. my feet are around 75% numb and the numbness runs up the outside of each leg to my knee. My pain is always and it sucks. Thanks for your kind words and it is GREAT to know that i am not alone ( not that i want anyone else to have ISFN)

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@lisalucier i take an opioide and Lyrica, which the combo of the two give me some relief, its not 100% but at least i can live life. i have tried some pain creams which also helped but for only 30 minutes or so. i just really wish my Doctors or anyone can tell me why i have this, it is so frustrating that they cant and that there is no cure.

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1 reply
jasont | @jasont | Feb 22, 2019
In reply to @teetee7 "Oh boy, yes. What you have described is what I feel mostly in both hands and..." + (show)
@teetee7

Oh boy, yes. What you have described is what I feel mostly in both hands and both forearms. I also have it in the same areas as you, but my hands and forearms are the worst with the SFN.

You definitely are not alone. And, yes, I wouldn't want anyone else to suffer with SFN.

Were you diagnosed via punch biopsies? Do you see a Neurologist? What are you doing for your pain? At first, topical ointments and lidoderm patches helped, in addition to Gabapentin. (I am so thankful Gabapentin agrees with me - I can't imagine life without it. It helps to take the edge off).

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i was diagnosed from punch biopsy. i tried Gabapentin but it made me very angry and stopped, then they gave me the lyrica which does help some.

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teetee7 | @teetee7 | Feb 22, 2019

I am glad the Lyrica is helping a little bit. Were you suffering with this for a while, prior to your diagnosis? Have you had any injuries, or did this just start happening out of nowhere?

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1 reply
jasont | @jasont | Feb 22, 2019
In reply to @teetee7 "I am glad the Lyrica is helping a little bit. Were you suffering with this for..." + (show)
@teetee7

I am glad the Lyrica is helping a little bit. Were you suffering with this for a while, prior to your diagnosis? Have you had any injuries, or did this just start happening out of nowhere?

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This started as my feet were numb with no pain and then the pain would come and go. Then the numbness got deeper, if that makes since and the pain was constant. I was suffering with this for about two years before my diagnosis. My dr has literally tested me for everything and aside from ISFN I am a healthy 45 year old male. It all started about five to six years ago.

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teetee7 | @teetee7 | Feb 22, 2019

Yes, that makes sense about feeling "deeper".

I used to go back and forth in my mind thinking, "Well, I am glad I don't have diabetes or some other disease that is causing all of this...but, where do we go from here"?

You will read through other posts on here about what has worked for others, to help with their SFN pain.

I really do hope you can find extra relief. I am always looking, too.

TeeTee

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dwilkin | @dwilkin | Feb 22, 2019
In reply to @jasont "@lisalucier i take an opioide and Lyrica, which the combo of the two give me some..." + (show)
@jasont

@lisalucier i take an opioide and Lyrica, which the combo of the two give me some relief, its not 100% but at least i can live life. i have tried some pain creams which also helped but for only 30 minutes or so. i just really wish my Doctors or anyone can tell me why i have this, it is so frustrating that they cant and that there is no cure.

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Hi Jason. You said your symptoms started 6 years ago. Anything traumatic happen physically or otherwise 7-8+ years ago? Sometimes the underlying issue/cause is well before the symptoms manifest. Finding out the underlying cause is critical but to be honest, sometimes that’s extremely difficult to answer.

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jordanabrams30 | @jordanabrams30 | Feb 27, 2019

One thing that I am curious about is the skin fiber density ranges in SFN. Does anyone know what the density ranges should be for a normal non SFN patient at the lower leg?

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2 replies
steeldove | @steeldove | Feb 27, 2019
In reply to @jordanabrams30 "One thing that I am curious about is the skin fiber density ranges in SFN. Does..." + (show)
@jordanabrams30

One thing that I am curious about is the skin fiber density ranges in SFN. Does anyone know what the density ranges should be for a normal non SFN patient at the lower leg?

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@jordonabrams30 Poke around this website where you may find an answer to your question.

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