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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. 209 People

    Trial And Error.

    I have probable small fiber neuropathy. I found this site while I was researching possible testing and diagnostic tools. Is anyone here in Australia? I've had autonomic studies done at RPA with small fiber neuropathy detected due to not sweating on my lower limbs. I have been...
    jimmybro jimmybro 26-30, F Oct 2, 2013

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    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 3 Responses Nov 22, 2015

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    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

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    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

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    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

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    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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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    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

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    Has anyone had any results with alternative

    treatments while taking prescribed medication?
    lolo1990 lolo1990 22-25, F 2 Responses Apr 27, 2014

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    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

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    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

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    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

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