Looking for a forum for Small Fiber Neuropathy
 

The Drs. have ruled out Peripheral Neuropathy and now say I have small fiber neuropathy. I was just wondering if there was a board here or some other place.

Thank you!
Julie

This is the Board for it--
 

--as small-fiber neuropathy is just one broad category of peripheral neuropathy; specifically, dysfunction of the small, unmyelinated nerves that control the sensations of pain and temperature and mediate many autonomic functions.

We discuss it a lot here (though many people have "mixed" types).

Also look at:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

http://neuromuscular.wustl.edu/sensory-small.html

Oh Julie....Bless your heart.

I'm telling you...just trying to find out I have SFN has been a challenge and I've had to do all the research and even had to ask for the skin biopsy....lol....All prior tests were negative (ie nerve conductivity and that needle thingy that HURT a lot). It was driving me crazy....2 + 2 should equal 4 but with the doctors 2 + 2 equals whatever.

My dr used Bako for my biopsy and their results scale is 0 to 15. 15 being the best. I was totally shocked and unprepared for my results of 0....but I cried because I was so relieved to have a diagnosis after 5 months.

I was pre-diabetic with only burning toes at the end of the day when I wound up with serous uterine cancer (Serous is the actual name and rare). Then it was 6 rounds of chemo and 1 month after the treatments ended (Mar 2013) I could barely walk. This pain is unbearable at times and mine seems to be progressing to include more of my foot. At the beginning it was from the middle of the foot up to my toes....symptoms are: burning, electrical like currents, numbness, a crawling feeling under the skin on my feet, ankle cramps and so on. This is 24/7 for me an ebbs and flows alllll day long :)

Please let me know what is going on with you. I'm brand new to this site but have been reading the threads since Dec 2012

It's a nice, cool morning in Georgia :)

Hi Georgia, it's a stormy night here in the Pacific Northwest.

My toes are numb, well I can feel them a little. This started over 2 years ago. Then the backs of my heels started burning badly. The Neuro sent me to a Podiatrist for my heels. Said that wasn't Neuropathy! I went and got all kinds of diagnoses..from bursitis, Plantar Fasciitis, Achilles Tendon (both feet mind you) Etc. I did stretching exercises and icing 3x a day for 6 weeks.. Nothing. Heels still felt the same. Spent hundreds of bucks on orthotics since I was also told I have pronation.
I decided to go for yet another opinion. I have now gone to a Sports medicine Dr. He took tons of Xrays on my feet and ankles. He thinks it's my Cutaneous nerves. I go back in a week or so for reevaluation. We'll see if he can help me. I'm so frustrated and in so much pain.
In the hot summer days if a breeze comes in the house my calves freeze. I sit with 3 blankets on them and it's almost 80 degrees in here. No a/c here.

I have had the nerve conductive tests plus a EMG. Both were negative which I expected. My Neuro just said I had Small Fiber Neuropathy then. She didn't say a skin biopsy was necessary.
I am so sensitive to drugs I've been unable to take anything for it. I've had RLS since childhood and since 1999 I've been on 1200mg Gabapentin. They've tried upping it but each time I get confused and light headed.
I'm at a loss to what I can do. :(

Your cold sensitivity and restless leg syndrome fom childhood seem to point to a possible hereditary neuropathy. Research Charcot Marie Tooth and see what you think.
This usually shows up on an EMG/NCS because it is a large/small fiber neuropathy but they my have missed something.

Susanne, I'll go look that up right now but I'm not cold even though my calves feel like ice. If I tough them they are warm. Strange..

I requested skin biopsy because I just had......
 

I just HAD to knowthat is what it was and it has been a relief even though it was bad. I had to ask for the test myself as they usually just 'say' you have it using clinical findings. The test gives them a 'range' of how much damage has been done. If my results had been better he said there is a prescription vitamin they can give that has good results in helping regenerate the nerves.

My feet use to do like your legs......freezing but when I touched them they were warm...weird. And I also have some numbness and not some numbness around all my toes.

Went to see pain dr today since I was told by my foot dr that there was nothing to be done since my epidermis is devoid of fibers, and he said.....there are usually 3 steps for pain relief if there is no hope of regeneration of nerves.... 1st is meds (I'm on gabapentin/neurotin 1,800 mg a day and he sees no reason to try any others since this has not helped at all), 2nd is sympathic nerve block and 3rd a neurostimulator that is implanted. In my case that would be implanted in my buttocks area...lol

He also states that I have to have the sympathic nerve block first before insurance will agree to a trial run with the stimulator.

Scared as heck and have never, ever wanted anyone to be anywhere near my back with a needle but if it will help me get some type of daily quality of life back I'm going to have to try it. Oh to be able to drive again, clean and re-do my house, run around with the grandkids and just simply go to WalMart !

You have to be your own medical advocate when trying to figure this stuff out and read and read and read these threads and anything else you can. I have learned so much from these people on here and the dr today was pretty impressed with my knowledge.

I'm thinking about u and please let's stay in touch on here.

It's nice and cool here in Georgia but I am flat burning up !
Got the A/C on 72 and the fan blowing on me..crazy right ?

Sfn & buzzing
 

[QUOTE=Jewels43;1018585]Hi Georgia, it's a stormy night here in the Pacific Northwest.

My toes are numb, well I can feel them a little. This started over 2 years ago. Then the backs of my heels started burning badly. The Neuro sent me to a Podiatrist for my heels. Said that wasn't Neuropathy! I went and got all kinds of diagnoses..from bursitis, Plantar Fasciitis, Achilles Tendon (both feet mind you) Etc. I did stretching exercises and icing 3x a day for 6 weeks.. Nothing. Heels still felt the same. Spent hundreds of bucks on orthotics since I was also told I have pronation.
I decided to go for yet another opinion. I have now gone to a Sports medicine Dr. He took tons of Xrays on my feet and ankles. He thinks it's my Cutaneous nerves. I go back in a week or so for reevaluation. We'll see if he can help me. I'm so frustrated and in so much pain.
In the hot summer days if a breeze comes in the house my calves freeze. I sit with 3 blankets on them and it's almost 80 degrees in here. No a/c here.

I have had the nerve conductive tests plus a EMG. Both were negative which I expected. My Neuro just said I had Small Fiber Neuropathy then. She didn't say a skin biopsy was necessary.
I am so sensitive to drugs I've been unable to take anything for it. I've had RLS since childhood and since 1999 I've been on 1200mg Gabapentin. They've tried upping it but each time I get confused and light headed.
I'm at a loss to what I can do. :(

Hi Jewels, Georgia

Its a cool clear night here in the Southeast. Sorry to hear you were diagnosed with Small fiber Neuropathy. I was diagnosed with SFN back in August of 2012, by skin biopsy. I first went to a Neurologist with burning under my feet and tingling in my calves 3/2011. It has been a very painful trip. I had a "comprehensive" blood work-up according to 6 diff Neurologist, 2 Rheumatologist. I even tried two Neuromuscular Neuros in NYC. No one can find a cause. So mine is "Idiopathic":confused:. So hard for me to accept that these Doctors (Specialist) can not find a cause for this horrible pain. I will probably die trying. Mine started out of the blue, with burning under my feet and pins & needles in my calves. It has progressed to my hands, fingers, arms, torso (Frnt & back) and face (Lips). I have it widespread. My symptoms are pins & needles, tingling, horrible buzzing, burning, stinging burning, electric -like pain, stabs , jabs, bee-sting,bites, I get sensitivity in my hands that comes and goes. The list goes on..I have developed tinnitus, a horrible loud ringing type feeling in my ears (&head), I feel it most when the buzzing is strong and moving from my legs to my arms. (I know it sounds crazy).:( I feel like there is electricity flowing around inside me. :( I never had tinnitus before. I have all these symptoms but I do not and never had any numbness or any autonomic involvement, except when I start feeling the burning and tingling, sometimes I get a warm feeling rushing up to my face and feel like I going to sweat , even when its cool in the house. I am on 300 mgs of Lyrica, for pain which dosent do much, my Neuro dosent want to increase the dosage because of SE and 10 mgs of Amitriptyline , the Ami just helps me to sleep a little. And Lidoderm (Lidocaine) patches for my feet as needed.. It scares me when I think about where this Neuropathy is going how bad its going to get as it progresses. I am at my wits end, I am crying as I write this. I feel alone, no one can understand how I feel unless they feel it too. they can not see my pain. I have become home bound and depressed. Do either of you have any of these symptoms, esc the buzzing, its such a horrible feeling. Then of course there's the stinging & burning in my feet and toes and now fingers. ughhh. .What are you taking for your pain? Sorry this doesn't answer any of your questions, but I saw your posts for SFN and had to write. Thank you for reading and responding..
Marie

Georgia,
I am on 1200mg. of Gabapentin for my RLS and have tried to up it but get so much confusion and light headed I have to go back to my original dose.
I do use Vicodin (1/2 tab) but it doesn't faze my heel burning. I use it for Vulvodynia, another nerve problem. I guess I already stated my Gabapentin dose.

Marie, I have researched this till I'm blurry eyed and I believe mine is "Idiopathic" too. You seem to have it everywhere. I have tried 5% Lidocaine gel and/or patches with no relief.:mad:
I hear your pain, frustration, depression, hopelessness!
I understand!! I try and get out of the house as the opposite make me much more depressed.I just got over double pneumonia and spent 6 weeks in my recliner. I about went mad.

I don't have any buzzing.I'm beginning to get tingling and burning on my lips.
I'm really sorry you have it so bad. Stay positive, maybe one day there will discover a cure.

The prescription vitamin is Metanx.

This you can do yourself...
methylcobalamin
methylfolate
activated B6 called P5P.

If you have the MTHFR mutation, then it is critical to have
the methyl versions of B12 and folate.
You really should get that DNA test. It is a common mutation.

However, the Metanx is only one part of rebuilding damaged nerves. It requires a good source of Omega-3 fatty acids to provide the building blocks to the nerve membranes. The vitamins are only cofactors. Without Omega-3's not much improvement will be likely.

The entire body needs Omega-3s as well, and they have been traditionally not in our common diets.

Glenn has had later skin biopsies showing improvement over the years. He does the nutrients carefully, and they are probably the factor helping him.
http://neurotalk.psychcentral.com/post1005701-33.html

This is a link to a video at Medscape. Bent98 provided it last year.
It is helpful to illustrate what the dorsal horn of the spinal cord are and it also
suggests how some drugs like gabapentin may help chronic pain.
It does not offer nutrient solutions, like most medical sites avoid discussing. If you do not have a membership to Medscape you can make one easily..and it is free. There are great informational links available there for all sorts of health and drug information.
http://www.medscape.org/viewarticle/754961

There is a genetic subset of patients who cannot rebuild cell damage
at the dorsal root level. There is no test for this as yet. But there is a paper on this forum from research stating that for those people with the defect, stem cells are the only thing so far to help. Evidently most people have the correct genes and DNA in place to fix things at the dorsal roots that have been damaged.

I'm liking this Marie and Julie...let's continue....
 

Bless our hearts.....we'll get through this. Please disregard any stupid stuff I may write...I've been up all night with feet pain and stuff rolling around in this empty head of mine. I feel like telling my story....Enjoy and tell me yours please. I'm a new member but really am enjoying this. I try not to bother my family with all the pain and struggles. I just say I'm 'fine' and go on###lol

I'm 51 years old and am married to Bubba #his na#e is James but the grandchildren call him Bubba###too funny## I have 2 children, a boy and a girl, and 6 grandchildren# I was laid off from my job of 26 years last Sept# All I'll say is I am a woman with a brain and I made too much money# No college just life experience# My daughter got married 2 weeks later on a dock on St George Island in Florida #great fun## Exactly one week later I had a hysterectomy for excessive bleeding# No big deal as far as me and my Gyn were concerned# 2 weeks after that #Nov 2012# he called me into his office# I knew something was wrong# When they did the path report it said they found cancer in my uterus# It's call Serous and is a very rare and aggressive cancer# Mine was small but they hit me with 6 rounds of chemo, Taxol/Carbo that ended Mar 27, 2013# I should mention that my dr kept me listed a pre-diabetic even though I was diabetic really for insurance reasons# Before chemo the only neuro pain I had was burning in my toes at the end of the day but didn't think much of it# I had mentioned it to the dr but didn't ask for anything# At that point I knew absolutely nothing about neuropathy# The onocologist briefly mentioned it and asked each time I came in what my symptoms were# #numb mouth and tongue, no taste, sensitive to hot and cold running water on my hands and feet and some numbness in my feet## Nothing major# EXACTLY a month after chemo ended I started having a hard time walking, off balance, kept dropping and knocking things over# My sweet dr said neuropathy and ran tests #nerve conduction, that needle thing, X-
Rays of spine and neck, MRI of neck and all sorts of blood work## Nothing remarkable in any of it# Drove me CRAZY# I come from an accounting and claims background and 2 + 2 = 4 not 2 + 2 = who knows...lol. Then I basically had to set out on my own to figure all this out. Went to see my onocologist #they never want to say it was the chemo# I was already of the opinion that I had neuropathy and the chemo just escalated it. Then I saw a neuro and finally a foot ankle dr that actually #well 1/2 way# listened to me. By that time I was up to 1,800 mg a day of gabapentin/neurotin with no pain relief. I had to ask for the skin biopsy but he was more than happy to do it. The results came back on Sept 19 and state "epidermis essentially devoid of fibers" and "The utter absence of fibers following test is indicative of advanced small fiber neuropathy". Dr said nothing he could do....mine was basically a 0 out of possible 15. I cried because I was soooo relieved to have a diagnosis. My husband apologized for not fully believing me #nice#. He said the only thing I could do was see a pain mgmt. dr and try and get some of my quality of life back. I do not drive unless absolutely necessary, I hurt 24/7....ebbs and flows all day long, home 99% of the time because even riding in the car causes pain. Anytime my feet are on a surface the nerves get stirred up. So....I do a little around the house and sit in the recliner and that goes on all day long except for the bad days....those are mostly spent doped up and sleeping. The electrical currents you mentioned are the worst....feels like they are trying to shoot out the end of my toes :) burning, numbness, stinging, cramps in ankles and so on. Went to pain dr this past Mon, Sept 30. He says since the gabapentin is not working the only options I have left are sympathic nerve block in my lower back, which he said is only doing to get approval for the neurostimulator. I am terrified to even think of anyone coming near my back with a needle. Had both my children without meds because I did not want an epideral. So....here I am......nerve block on Oct 8th........said he would give me a valium and I could take one of my Xanax. So I'll just float in and get it over with. I do take 1/2 a vicodin for pain when needed. My pain has worsened over the last 4 weeks and the left side of my left foot is swollen and EXTREMELY painful....and that is a new symptom. Did I really just type all that ? My eyes are blurry....lmao

Got all the windows open in the house and the breeze feels so good #as long as it's not blowing on my feet# :)

Looking forward to hearing from you...thanks for listening....I feel so much better.

Debi

Debi, have they not offered you anything else for the pain? I am on 30 mg. extended release morphine twice a day, moving to three times a day, with 7,5 mg oxycodone for breakthrough pain.
Like you my biopsy used the word "devoid" of nerve fibers. I also have advanced large fiber neuropathy since mine is hereditary.
I function pretty well on the pain meds. Doctor just doubled the morphine to get me off the oxycodone, more for his benefit than mine I suspect, but I am doing okay. I drive within a 3-4 mile radius, no more, do laundry now that it is moved upstairs, and some cooking, but not much else. We are the same age, I have five children, one grandson, and another on the way. My youngest is 14 and three sons live at home with my husband and I. We will be married 31 years at Christmas.
Mornings are pure hell and I need help to get out of bed or I roll around and pull at the covers for leverage. I enjoy walking, but pay for it later.

Welcome to the forum! So much help is available here and if you just need to vent this is a great place, we all listen and understand what you are going through.

Swollen foot?

I would be very careful with that symptom. As your nerves change, the tiny signals in the tendons, are lost, and walking can place unusual stress on the bones, which you would normally compensate for with proper feeling.

What then happens is called Charcot foot...and is pretty common in diabetics. But it can morph into a nightmare if not taken care of. Tiny cracks in the ankle joint or in the metatarsal bones, can lead to tissue damage.

http://en.wikipedia.org/wiki/Neuropathic_arthropathy

I just went to my podiatrist before my vacation and he checked both feet for this with Xrays... my swelling was not due therefore to Charcot foot changes, but instead from spurs in the ankle itself (arthritis was the explanation this time).
Since having my big toe nail removed, my swollen ankle has gone away....? duh? I don't understand this. But it continues to be unswollen since last July. It was swollen for years, on and off with no diagnosis/or explanation from either my internist or podiatrist.

Help Mrs D !
 

Hello there Susanne !
 

Do the ice treatment twice a day, and if you are allowed to take aspirin, either do AlkaSeltzer Original formula or the new Bayer Advanced. (the Bayer advanced is very fast acting like the AlkaSeltzer and has
nano particles of aspirin to dissolve very quickly.)

But not everyone is allowed aspirin by their doctor. So check and see. If aspirin takes it down, in a couple of days with the ice, it may be okay. But in the meantime, do an image search of Charcot foot and text search on Google and learn about it.
Really it is pretty common in diabetics. I think it should be addressed before a block or SCS....because that would mask the pain, and hide the Charcot damage if it is happening.

Swelling and discoloration (red and purple), excess sweating and increasing pain may also signal RSD... We have an RSD forum here:
http://neurotalk.psychcentral.com/forum21.html
This type of sympathetic neuropathy, is often misdiagnosed for people.

Charcot foot is not the same as CMT (Charcot Marie Tooth neuropathy).
It is named for the doctor who discovered and described both conditions.

Mrs D....thank goodness..nothing like that (pics)
 

I looked at the pics......nothing like that. But oh how I feel for those people.

If you feel half way down the outside of your foot there is a small knot, for lack of a better word. That is what is slightly swollen but EXTREMELY painful. I just went outside with my dog and actually had to take my sandal off and walk flat footed or on my toes. Came back in and took 1/2 a vicodin. Both of my feet hurt but that one place is BAD.

Just part of PN ?

Just when I thought it could not get any worse....going to lay down and let the pain pill work and then will come back and see what you say. I just don't understand. :(

And I might as well say I loved the pain dr but that whole bldg. is nasty. I'm worried about getting a nerve block there.......guess I just need to bit the bullet and see another clinic. So sick of this already and only 6 months in.

I'd get that X-rayed if I were you.

Do you know what your bone density situation is? That is the last metatarsal bone in the foot, and commonly is where stress fractures occur. I know a gal who just squatted down to get something out of a low cupboard and broke that bone!

She didn't seek help right away, and ended up getting a bone scan which showed the break clearly (it was too late for X-rays). She had terrible pain from this, and no PN at the time, and it took a long time to heal.

My husband had a stress fracture of this same metatarsal in basic training (on his way to Vietnam)... they put him in a cast for weeks. His cracked from just marching with heavy packs uphill and downhill doing the training moves.

If you use GERD drugs, the acid blockers, they lead to osteoporosis and leached bones. If your Vit D has been low for a long time that would be also a risk. Osteoporosis affects women more during and after menopause, but osteopenia can come before then if your density is poor.

This is a great link for all sorts of foot pain...
http://www.northcoastfootcare.com/

Stress fractures:
http://www.northcoastfootcare.com/pa...Fractures.html
What you describe sounds like the last metatarsal bone. This link has anatomy pictures all over the site to illustrate many conditions. If your knot were at a joint, it could be gout or pseudogout. There are just so many things involving the feet.

Mrs D....maybe peroneal tendonitis which is at the...
 

It's at the 5th metatarsal bone just like you said. But I've had no injury to my ankle and they associate this with athletes.....boy is that funny. I walk weird because my feet hurt....wonder if I irritated one of those tendons on the foot part. They wrap from the ankle to that area. All I can say is that it is a new hurt and is driving me crazy. I am using my Chillow on and off all day and it does help. Guess I need to see my foot dr and confirm our diagnosis :)

You are so good at this and so caring. I had to add a 2 mg valium to just be able to breath again. I realized I was crying and holding my breath because it hurt so bad...I've never done that before.

I don't use any GERD drugs.....On a lighter note...my dad was in Vietnam too, came home for a year and was sent back to Tiland (sp ?)....I'm an Air Force brat.

Debi
Thanks again and I'm sure I'll be bothering you a lot more as I work my way through this maze.

If it hurts that bad, you have something seriously wrong.

That is the basic rule for pain. Broken bones hurt terribly. Acutely. And you don't need to remember what you did either.

My husband was only 20 yrs old when he broke his metatarsal.
He didn't know it until he took his boots off at the end of the day.
He couldn't get them back on the next morning and went on sick call. They made him stand in a long line for over an hour. Finally his Xrays came back with 2 orderlies who CARRIED him back to the exam room for treatment! He recalls it was just horribly painful! And so was my friend's broken bone! She was in her later 40's though, and not young like my hubby was.

Any sudden acute pain in the foot should be seen. You never know what you may find but the pain is a signal that something is wrong. Stay off of it...and keep it elevated until you see a doctor.

Good luck!