I Have Small Fiber Peripheral Neuropathy

Group for support for individuals afflicted with this painful degenerative nerve disorder. Come find friends, advice, acceptance, and understanding. 211 People

    I Have Just Been Diagnosed, But Why Is It Happening?!!! Please Share Tests You Have Had Done..

    I will post my story later, but my main question to everyone is: How did you get to the root of the problem for what is causing your SFN??!!! I hate the neurologist I finally saw, who ordered my nerve biopsy, for saying, "Sometimes we just don't know what the cause is, I am just...
    notlivinginparadise notlivinginparadise
    51-55
    11 Responses Oct 4, 2012

    I Was Diagnosed With Small Fiber Neuropathy 3 Years Ago

    Hi there,I have been living with very severe Small Fiber Neuropathy for about three years now. I am on Gabapentin 1200 mg 3 times daily the maximum daily allowed. I started out with the minimum and gradually increased throughout the years, I also take Tramacet with the Gabapentin...
    melbeauty melbeauty
    31-35, F
    7 Responses Jan 20, 2012

    It Is Written, He Shall Never Give Us More Than We Can Bear (1Corinthians 10:13)

    Hi to all Thanks for a place to interact with people who know what..."It is like"! What a long strange trip its been for all of us with sfpn. I have lived with multiple health problems since 1995. In 2007 I woke to painful cramped arms and hands and within 2 weeks my feet and...
    ezrest ezrest
    56-60, M
    2 Responses Sep 10, 2011

    I have SFN a 'definitive' diagnosis of SFN

    after several years. Obtained through Thermal Threshold Testing. A simple test that I had done privately in London. It is useful having a diagnosis but as yet no treatment other than Pregablin. To mange the pain I have learnt 'pain management techniques' via a psychologist and...
    dereksi dereksi
    61-65, M
    1 Response Jan 29, 2015

    I've had the same experience

    as many of you. It was really bad when it developed from a virus and continued really bad for two years. Then found a medication that broke the pain cycle and I was fine for four years on low dose of meds. Then it flared back up this year after a very stressful year and trying...
    litgrl litgrl
    36-40
    May 30, 2015

    I have small fiber peripheral neuropathy,

    I'm unable to walk balance, no feeling in my finger tips, always in pain 24 plus. When I have a flare up I could be in bed from 2 weeks to 2 months. I've been given several meds and they all screw my mind up. I'd rather have a brain and deal with the pain. Does anyone know...
    doc3242000 doc3242000
    51-55, F
    4 Responses Feb 12, 2014

    Hi I have had severe burning pain in the

    sole/arch of my right foot for a year. Now the sole of the other foot feels like it is burning too. My nerve conduction studies and blood tests are normal . Could this be SFN ? I have no probes with temperature , numbness etc. Just severe burning pain . Please help !
    Fulamuso Fulamuso
    46-50, F
    1 Response Aug 14, 2015

    Yes, as if someone flipped a switch.

    I am convinced that this Idiopathic SFN is from Microbid/Nitrofurantoin poisoning - I have taken that drug for years, with 7 courses summer and fall, at the same time the symptoms started. Nitrofurantoin can also cause Lung Fibrosis.. and I also had sudden onset of breathing...
    swim2lakes swim2lakes
    56-60, F
    Oct 14, 2015

    I have been battling these strange

    and worrisome symptoms for about 6 years now, without a know cause. Test after test they kept coming back saying everything was normal. The frustration level has just been building and building with each normal test result, because to me, I felt like a crazy person, no one could...
    Marie102 Marie102
    31-35, F
    1 Response Jan 9

    I'm still trying to figure out

    if I indeed have Small Fiber Peripheral Neuropathy. I'm a 52 year old male that is currently experiencing severe burning feet with no real explanation. It started about 5 months ago. I have been to my doctor who has ordered blood work and found my B12 to be a little low but not...
    allanhillier allanhillier
    51-55, M
    1 Response Sep 26, 2014

    I'm 37 years old and roughly 5 years ago I

    started to notice mild cramping in my toes at night. Slowly this cramping turned into pins and needles and it startred to creep from my toes into my foot. Fast forward 5 years and now I'm in pain every waking hour. I forget what its like to not have pain in my feet. I cant sleep...
    Fenuch Fenuch
    36-40, M
    3 Responses Jan 13, 2015

    After tons of doctors

    and tests, I was recently diagnosed. My small fiber neuropathy first attacked my eyes with corneal neuropathy. I know this is very uncommon, but in my case that is what happened to me. I spend hundreds of dollars every month on special eye drops and had to leave work but am...
    digitalpandora digitalpandora
    36-40, F
    Mar 15

    Small Fiber Neuropathy Along With A Couple More Things Carpel Tunnel Being One

    Hi i' ve now been living with this almost two years each day is different and harder. I am angry with this whole situation and sometimes i don't know how to feel or think. No one seems to understand what it is that I go through from day to day. Some I ask the question why me? is...
    kimbone kimbone
    36-40
    4 Responses Nov 7, 2010

    Neuropathy. 25 Year Old Male.

    im 25. male. im scared because since 9-3-12 i started having neuropathy symptoms that have only gotten worse and continue to get worse. started as mild tingling. then turned into electrical shock feelings in small spots of the skin all over my body at random times throughout the...
    Mustang0227 Mustang0227
    22-25, M
    2 Responses Oct 24, 2012

    I'm 37 years old and roughly 5 years ago I

    started to notice mild cramping in my toes at night. Slowly this cramping turned into pins and needles and it startred to creep from my toes into my foot. Fast forward 5 years and now I'm in pain every waking hour. I forget what its like to not have pain in my feet. I cant sleep...
    Fenuch Fenuch
    36-40, M
    Jan 13, 2015

    I was just diagnosed with SFPN.

    I am 67 yrs old and very active. This started years ago when I had a spinal tap go very badly and my left side felt as if I had be electrocuted. It led to a deep depression for me. I had the pins and needles in my feet, legs, and arms. After a long time on amitriptaline and...
    hopeudance hopeudance
    66-70, F
    1 Response Sep 7, 2014

    I'm 37 years old and roughly 5 years ago I

    started to notice mild cramping in my toes at night. Slowly this cramping turned into pins and needles and it startred to creep from my toes into my foot. Fast forward 5 years and now I'm in pain every waking hour. I forget what its like to not have pain in my feet. I cant sleep...
    Fenuch Fenuch
    36-40, M
    1 Response Jan 13, 2015

    Gabapentin

    hi well hope you are all doing better than me at the moment. i have been trying the drug gabapentin, this is the second time i have tried. the last time tried it a few weeks ago i did not take to it. being a glutton for punishment i thought i would try it again, big mistake! i...
    deleted deleted
    26-30
    6 Responses Oct 18, 2009

    Diabetic Neuropathy

    im  25 and have sensroy neuropathy in the legs, i am wheelchair bound because of pain and am wondering if there is anyone else out there that has been using a wheelchair because the pain is so severe that u cant walk?
    combatfan1985 combatfan1985
    22-25
    8 Responses Nov 23, 2010

    A Challenge To Get Through The Day

    I am 50 years old and was first diagnosed with Peripheral Neuropathy. 5 years ago I had a burning sensation in my right foot, but thought nothing of it. The pain increased and when both feet felt like I was walking on shards of glass I went to see my primary care doctor. He sent...
    Love62 Love62
    46-50
    1 Response Aug 31, 2012

    I Have Small Fibre Peripheral Neuropathy.

    I have Small Fibre Peripheral neuropathy.  Diagnosed Aug 2010.  It started January 2010 with strange creeping sensations in my feet.  Then I found that when I walked long distances my feet became unco-operative and I struggled to get home again.  I had to give up walking my...
    Cethel Cethel
    61-65, F
    2 Responses Feb 8, 2011

    I'm 37 years old and roughly 5 years ago I

    started to notice mild cramping in my toes at night. Slowly this cramping turned into pins and needles and it startred to creep from my toes into my foot. Fast forward 5 years and now I'm in pain every waking hour. I forget what its like to not have pain in my feet. I cant sleep...
    Fenuch Fenuch
    36-40, M
    Jan 13, 2015

    Long Road

    Mine started 4 years ago when I was thrown from my horse, suffered a severe concussion. Within 4 weeks my feet were feeling funny, then things change bi- latterly as usual moved to my calves, then my hands, my forearms, my shoulders then the band of nerves that wraps around from...
    eubanksdee eubanksdee
    51-55
    Jul 4, 2013

    Treatment ?? For Small Fiber Peripheral Neuropathy

    Wat do u do??? Treat site of discomfort, treat pain?? Or treat location of where it began from??
    Purple30 Purple30
    26-30
    3 Responses Nov 26, 2010

    My Story So Far With SFPN

    Hello,I am pleased to have found this group.My story began in 2012 when I noticed numbness and tingling on the side of my left foot.This spread to my big toe and then to my right foot.From there it has begun in my hands.I am currently undergoing tests via my Neurologist and am on...
    bearmack bearmack
    56-60, M
    2 Responses Oct 14, 2013

    Just to give a little background,

    I have not felt well for almost 3 years. I have been to every kind of specialist, had major blood work and scans performed without a diagnosis till recently. Three months ago I was diagnosed with SFN from a skin biopsy. My symptoms mirror what I have read; tingling sensations...
    KSH1121 KSH1121
    56-60, F
    1 Response Jul 20, 2015

    My Story

    My story started more than 2 yrs ago with tingling on hands, feet and face. All the tests including spinal tap came negative. Then started pain on right wrist and then next day, on the left wrist and the next day both legs. Started gabapentin in smaller doses, increasing the...
    seemr seemr
    31-35, F
    1 Response Feb 1, 2013

    I haven't been diagnosed with anything yet,

    just treated poorly by physicians that don't understand what I am describing to them. The symptoms, the pain, the tightness, the buzzing, the burning.... I work in an Emergency Room, I see they eye rolling that goes on whenever a patient comes in who says they have fibromyalgia...
    lyn68 lyn68
    46-50, F
    Jun 20, 2015

    And So The Clouds Clear...

    If you haven't please read my "The greatest challenge I ever had" story for full background. Short and sweet I have neuropathy. I have had it now, I guess almost a full year. In my last story, I tell about the tests and the emotions. But for those of you going through this right...
    kgorgei kgorgei
    36-40, F
    2 Responses Aug 3, 2012

    I'm 47 and just got diagnosed

    after 2 years of having every test you can imagine except the skin punch test . I am having that in about 2 weeks ! I am wondering what kind of meds work for people? I also have migraine and take meds for that and a neck injury
    katiofvabeach katiofvabeach
    46-50, F
    1 Response Mar 22, 2015

    I'm 37 years old and roughly 5 years ago I

    started to notice mild cramping in my toes at night. Slowly this cramping turned into pins and needles and it startred to creep from my toes into my foot. Fast forward 5 years and now I'm in pain every waking hour. I forget what its like to not have pain in my feet. I cant sleep...
    Fenuch Fenuch
    36-40, M
    Jan 13, 2015

    Are We All Going Crazy, Insane Or Both?

    I know that we can all agree that we are living a nightmare every day, every hour and every second! None of us ever knew about this disease (if it is a disease) nor would we have ever cared to learn about it, in all our past lives. But here we are and now what should we do? I...
    alatres alatres
    51-55, M
    1 Response Dec 16, 2012

    Hello Members

    I am Zurie the creator of this group and I am very astonished to see how we've grown!  I would like to add to the suggestions for pain management post so that any of us or others checking out our page can look there as well so if you have any suggestions please add them.  I am...
    Zurie Zurie
    26-30, F
    3 Responses Dec 7, 2011

    I have just been diagnosed with small fiber

    sensory poly neuropathy, after 14 years of trying to find out what is wrong. Throughout all of the different wrong diagnosis I have already tried all of the medications available to treat this. Currently I am taking a combination of Cymbalta and noretripylene with limited...
    koendd koendd
    61-65, F
    2 Responses May 7, 2014

    Going Slowly Crazy

    Hi, I'm Danie from Melbourne Australia. If you ask one neurologist, I have SFPN. If you ask another, I don't. I'm 35 years old and have been dealing with the unknown for over 10 years and the last 18 months I have been off work and on crutches. I can't seem to find a lot of...
    DanieTreg DanieTreg
    36-40, F
    4 Responses Mar 28, 2013

    Sfn And Acupuncture

    Today I had my first acupuncture treatment. I am also on a regime of chinese herbs. Is anyone doing similar to get rid of this problem?
    petermal petermal
    61-65
    Dec 17, 2012

    Found out I have B6 Toxicity yesterday

    when I went for my skin biopsy! Stopped B-Complex and Support Formula (it has B6 too) and staying on just Alpha Lipoic Acid and B12 for now. My levels were 110! I think I had high levels even without the supplements and that's how my neuropathy started. What could be causing...
    Melissa1959 Melissa1959
    56-60
    May 15, 2015

    Living With Small Fiber Peripheral Neuropathy

    I have been recently diagnosed with SFPN.  I've actually had symptoms for over 10 years but was previously diagnosed as simple peripheral neuropathy due to low magnesium levels.  It began in the tip of my right big toe and progressed rather slowly to include both feet...
    amraelle amraelle
    51-55, F
    9 Responses May 25, 2009

    I was first diagnosed with transverse

    myelopathy in 1999 and my neurologist at the time gave me gabapentin and told me it would eventually go away and never come back. Well, it did go away, but it also came back. This time around I went to Mayo Clinic and was diagnosed with small fiber peripheral neuropathy. The...
    manypenguins manypenguins
    61-65, F
    1 Response Nov 14, 2014

    I have written before about my diagnosis of SFN

    after 3 years of not feeling well. When I read the blogs on this subject, the primary complaint is about feet and hands. Mine is in my legs etc.. but also in my face and scalp which really has a negative effect on the quality of life. I am on Cymbalta and gabapentin but am not...
    KSH1121 KSH1121
    56-60, F
    2 Responses Nov 22, 2015

    Trying To Stay Positive Despite So Much Pain.

    I am 31 and have my health has slowly been getting worse since I was a teenager. I have had various symptoms and spent most of the last fifteen years going from one doctor to the next. I had a million blood test, MRI's and all the other alphabet soup type names test you can have...
    EricBC563 EricBC563
    31-35, M
    3 Responses Jan 6, 2013

    Just Curious

    I was diagnosed yesterday after 7 months of agonizing pain and test after test. My doctor called me on the phone and told me the diagnosis but nothing about treatment, or what I can do to just have 5 mins without pain or to be able to walk up a flight of stairs without feeling...
    staciesmith524 staciesmith524
    36-40
    3 Responses Jan 21, 2011

    Peripheral Neuropathy

    Thankyou for all those people contributing to this site .I too have felt alone with this disease when diagnosed with it , especially as they cannot find a cause for it, despite many tests plus 3 MRI's . I have refused to take medications up to this point if they are just to...
    Takeoverbid Takeoverbid
    66-70, F
    Nov 21, 2013

    I was diagnosed in January 2015

    but have been dealing with problems since August 2014. It started with terrible pain in my legs...so bad I left work and went to the doctor. After 3 MRIs, countless blood tests, 2 nerve tests, 2 neurologists and skin biopsies I found out there is damage to my small fiber nerves...
    tmd1982 tmd1982
    31-35, F
    2 Responses Apr 10, 2015

    I have been not been officially diagnosed with

    small fiber neuropathy and am waiting for more blood tests to come back and to get a skin biopsy. I went to USF Health in florida after 6 months of suffering with this awful condition. So far all tests have been normal. I went through 6 MRI's, ultrasounds, CT's, and extensive...
    Melissa1959 Melissa1959
    56-60
    3 Responses Apr 5, 2015

    Is Sfn A Life Sentence....

    I HAD AN ALLERGIC REACTION TO BACTRIM TWO MONTHS AGO AND FROM WHAT DOCTORS CAN TELL SMALL FIBER NEUROPATHY WAS HOW MY BODY REACTED. THE NEUROLOGIST SEEMS CONFIDENT THAT IT WILL GO AWAY IN @ 6 MONTHS. UNFORTUNATELY, I CAN FIND NO POSITIVE INFORMATION THAT TELLS ME THIS. IRONICALLY...
    IZZY76 IZZY76
    56-60, F
    3 Responses Apr 17, 2012

    Can Someone Please Help!!!!!

    Hi there,  My name is Julie, and I am from the US,I have been fighting with diabetes for 3 years now.I have been suffering with my feet mostly my right foot for a little over a year now and seems like it has been getting worse as time goes by. It's starting to go in the back of...
    julienaquin julienaquin
    51-55
    2 Responses Nov 8, 2011

    I'm a 35 yo female recently diagnosed with

    small fiber neuropathy, but first fibromyalgia. I have the standard repertoire of complex issues that have been diagnosed over the last several years- migraines, insomnia, restless leg, IBS, etc. The thing is, two years ago I was in the best shape of my life, boxing. Now I'm...
    Seneca80 Seneca80
    36-40, F
    1 Response Sep 25, 2015

    If I Have A Disability, Will My Children Too

    A week after being diagnosed with Peripheral Neuropathy an incurable nerve disorder, it's got me thinking. I don't know how I contained this disease so how can I protect my kids. Or is this a lossing cause, is it written in their faith to be burden with this agony too. So of...
    Purple30 Purple30
    26-30
    5 Responses Nov 29, 2010

    I Was Diagnosed With Small Fiber Neuropathy

    Hello everyone, Iam on here to share my health problems and to find some kind of support and understanding of the condition. Iam a lady of 31 years old, unemployed since 2 years ago but being compelled to look for work.I was diagnosed recently but i have had symptoms since more...
    vanchrist09 vanchrist09
    31-35, F
    3 Responses Aug 4, 2012

    Has anyone had any results with alternative

    treatments while taking prescribed medication?
    lolo1990 lolo1990
    26-30, F
    2 Responses Apr 27, 2014

    I Have Has SNN For More Than 40 Years.

    I can swear it is tough but you can have a quality of life if you really are willing to seek out ways of coping with wthe degeneration of you nervious system. I'm doing less and less, but decited to enjoy it more and more. I never try to do more than I can physically do no matter...
    beleichtamer beleichtamer
    61-65, F
    3 Responses Oct 26, 2013

    I was diagnosed in September 2015.

    over the years it's been firbromyalgia, restless legs, neck and back problems. This year was given a bisopy. I was positive for small fiber neuropathy. I have hypothroid. which is in check with meds, prediabetic according to A1c and triglyceride Are in moderate high range...
    jmjkpl jmjkpl
    56-60, M
    Mar 28, 2015

    The Biggest Challenge I Ever Had

    I am 34 years old, I have been in pain every single day for the last 8 months, I was originally diagnosed with peripheral Neuropathy after a couple wrong diagnoses. My condition continues to worsen despite the 300mg of gabbapentin I was taking. My GP started giving me 500mg of...
    kgorgei kgorgei
    36-40, F
    6 Responses Apr 19, 2012

    I'm 37 years old and roughly 5 years ago I

    started to notice mild cramping in my toes at night. Slowly this cramping turned into pins and needles and it startred to creep from my toes into my foot. Fast forward 5 years and now I'm in pain every waking hour. I forget what its like to not have pain in my feet. I cant sleep...
    Fenuch Fenuch
    36-40, M
    Jan 13, 2015
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