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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. 194 People

    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

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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 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'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

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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 1 Response Oct 14, 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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    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 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

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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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    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

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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

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    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 5 Responses Oct 18, 2009

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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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    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

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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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    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

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    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

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    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

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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 56-60, F 2 Responses May 7, 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

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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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    My Neuropathy

    I have neuropathy,idiopathic, I have had it for 7yrs and 2 of those yrs I have had almost no symptoms till 3 wks ago. I have been getting pins and needles and burning in feet and hands,so Im worried that it might get worse. when I first got neuropathy the pain was so severe that...
    jacikyra123 jacikyra123 56-60, F 2 Responses Aug 29, 2013

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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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    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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    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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    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

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    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 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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    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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    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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    Small Fiber Peripheral Polyneuropathy

    It has been an awful experience. I have turned the wrong way one day and had a pinched nerve on L4/L5. After a year of non-stop pain, a couple of Cortisone shots and a physical therapy I had an L4/L5 discectomy. It took about a year and a half for the nerve to heal, but it did...
    lichthardtl lichthardtl 51-55, F 2 Responses Jul 18, 2013

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    I Have Found Something Which Seems To Really Help My Idiopathic Small Fiber Neuropathy

    Neuropathic pain background: I had been diagnosed with fibromyalgia 30 years ago. I developed carpal tunnel in the 1990's. In 2005 I had cataract surgery with complications that turned into chronic "sympathetically mediated nerve pain" which caused me pain whenever I used my eyes...
    KathleenJ KathleenJ 61-65, F 3 Responses Aug 17, 2013

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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

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    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

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    Update On Treatment: Alpha Lipoic Acid

    Sorry that I haven't posted for awhile. Since my last post I have undergone approximately 40 K- Laser treatments. I have feeling bilaterally in the two smaller toes (4th and 5th pinky toes) of my feet. Bottom of my feet from the arch back to heel is now normal without pain or...
    alatres alatres 51-55, M 3 Responses Apr 30, 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

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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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    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

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    The Story Of Me

    I was diagnosed with small fiber peripheral neuropathy about 2 years ago, but I have been suffering with it for nearly 10 years. After seeing every kind of doctor you can imagine, and being told I had everything except what I had (including one doctor telling me I had worms in my...
    pippinsb pippinsb 36-40, F 3 Responses May 26, 2013

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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

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    Is There Hope?

    My symptoms started 10 years ago. It started in my feet with tingling and numbness. I went to several specialists including Mayo Clinic in Rochester. They diagnosed me with small fiber neuropathy. The specialist at Mayo said it would be gone in 1 year. As I said, that was...
    cfro cfro 61-65, F 2 Responses Aug 23, 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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    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

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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 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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