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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. 196 People

    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 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 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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    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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    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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    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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    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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    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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    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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    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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    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'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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    It Is Not In My Head!

    .I am a 39 year old mom of 3 and happily married. Last March I had an car accident. After about 3 months I started to exhibit a variety of symptoms.  I was having itching feet, burning sensations in my feet and legs. I also was having this uncontrolable spasms. They looked like...
    msphun msphun 36-40, F 6 Responses Mar 8, 2011

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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

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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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    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'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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    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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    Update On Taking Neuropathy Support Formula Supplement

    I last wrote this past weekend 12/16/12. I had stopped taking the Dr.'s prescribed Gabapentin 300mg x 2 pills 4x's per/day because I was gaining no pain relief and only felt "zoned out." The pain in my toes and feet were at a 15 on a pain scale of 1-10 and also suffer from...
    alatres alatres 51-55, M 5 Responses Dec 18, 2012

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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'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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    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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    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

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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 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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    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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    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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    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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    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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    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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    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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    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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    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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    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'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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    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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    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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    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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    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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    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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    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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    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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    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 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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