Small Fiber Neuropathy

Small Fiber Neuropathy

Many neuropathy patients have heard these words, “Your EMG and Nerve Conduct Studies are normal meaning you do not have neuropathy.” Right? Wrong.

Dr. Norman Latov of Cornell University states clearly along with many other professionals that the EMG and Nerve Conduct Studies only measure damage to the large fibers. In fact it is well known that a patient can have symptoms of Peripheral Neuropathy long before damage is done to either the large or small fiber nerves!  Plus small fiber damage can only be measured by a simple Skin Biopsy to determine if the patient has damage to the small fibers.

David Saperstein M.D. and Todd Levine M.D. write for the GBS/CIDP Foundation International in Summer 2012 in The Communicator: “Immune-Mediated Small Fiber Neuropathy: A Treatable Condition That Can Mimic GBS and CIDP” . The authors note that “some patients may have elevated spinal fluid protein levels as in (GBS and CIDP), while other patients will have evidence of a monoclonal protein in their blood (which can be associated with some kinds of CIDP) and note that acute onset SFN can be immune-mediated and may respond to the same therapies used for GBS, such as intravenous immunoglobulin (IVIg). In contrast to GBS, however patients with acute onset SFN may respond to corticosteroid medications such as prednisone.” The doctors continue with a recommendation that the skin biopsy is a very useful tool in the diagnosis of SFN.

Small Fiber Neuropathy

Small fiber neuropathies affect the small, unmyelinated nerve fibers in the sensory nerves. These fibers convey pain and temperature sensations from the skin, as well as maintain autonomic functions (Stewart el al, 1992; Novak et al 2001). The diagnosis can easily be missed, as the neurological examination may reveal only minor sensory abnormalities and EMG and nerve conduction studies, that measure the large fibers, are frequently normal. Consequently, some patients with small fiber neuropathy are misdiagnosed as having a psychosomatic disorder, RSD, fibromyalgia, or restless leg syndrome instead. (Lacomia, 2002; Hermann et al, 2004; Polydefkis et al, 2005).

Symptoms of Small Fiber Neuropathy

Symptoms of small fiber neuropathy include numbness and annoying or painful spontaneous sensations, called paresthesias, that are variably described as tingling, stinging, burning, freezing, itching, aching, pulling, squeezing, or electric shock-like in character. Innocuous stimuli can provoke unpleasant sensations, called dysesthesias, as when clothes feel like sandpaper against the skin, the hands are hypersensitive to touch, and pressure from shoes or socks causes severe pain. These symptoms can occur anywhere in the body, including the arms, legs, torso, face, or even the mouth. (Walk et al, 2003; Lauria et al. 2005)

Causes of Small Fiber Neuropathy

Small fiber neuropathy can result from a number of causes and the neuropathy is often the first manifestation of an underlying systemic disease. It can be caused by diabetes mellitus or glucose intolerance (Polydefkis and McArthur, 2005) and by such autoimmune conditions as Sjogren’s syndrome (Chat et al, 2005) Lupus (Omdal et al, 2002), sarcoid (Hoitsman et al, 2005) vasculitis (Lacomis et al, 1997; Zafrir et al, 2004) Lee et al, 2005), inflammatory bowel disease (Gondim et al. 2005) or variants of Guillain-Barre syndrome (Seneviraine and Gunasekera, 2002). Other causes include nutritional deficiencies, celiac disease (Brannagan et al, 2005), Lyme disease, HIV-1 infection (Polydefkis et al. 2002) hereditary disease (Dyck et al, 1985) Dutsch et al, 2003), amyloid, alcohol abuse (Zambelis et al, 2005) or toxins (Kuo et al, 2005). Some sensory neuropathies that affect both the small and large nerve fibers can cause a reduction in epidermal nerve fiber density, before electrodiagnostic abnormalities.

How is SFN diagnosed

The diagnosis of small fiber neuropathy can be made with certainty, by demonstrating a reduction in the density of small nerve fibers in the skin. EMG and nerve conduction studies are usually normal in this condition, as they mostly measure the large nerve fibers in the motor or sensory nerves. The epidermal nerve fiber is normal in patients with central nervous system disease. (Latov; Brannagan)

For information on the diagnoising small fiber neuropathy through a skin biopsy click here.

About the Author

LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.

Author Archive Page

71 Comments

  1. If emg and biopsy are normal
    Pregabalin and duloxotine not helping still getting pain and calf cramps where do I go pain specialist only interested in back injections that’s where mine started nuro says ideopathic

    1. Michelle: A normal EMG and skin biopsy indicate that there is no visible damage to the large or small fiber nerves. I am assuming that they also did an Nerve Conduct Test. Blood tests are also important along with your medical history in any diagnosis. There is NO one test that will rule out peripheral neuropathy and most only show if there is damage or not. You can have symptoms of neuropathy long before damage shows up. It is therefore important that if you are not seeing a NEUROMUSCULAR NEUROLOGIST (treats patients with MS) and an INTEREST to evaluate the cramps (there are many cause of muscle cramps which can be VERY painful). Please go to the website at http://www.neuropathysupportnetwork.org and visit the Frequently Asked Question page and look at the answer to the question on muscle cramps. But you need to have this evaluated by a medical doctor.

  2. My husband has severe peripheral neuropathy . It has taken the complete use of feet and legs to knees… It is now in his hands and moving to elbows. He is on major does of Gabupentin (3600mg) per day. He is losing the ability to feed himself… He has other health issues as well.. ( heart etc). I read that you have severe neuropathy … Once in hands and moving into elbows what can we antisipate from here??? Any magic suggestions to help the love of my life ???

    1. Linda: God bless you and your husband. I hope you are working with a Board Certified Neuromuscular Neurologist as they more than others can figure out what is going on. The peripheral nervous system runs throughout the entire body except for the brain and central system (mostly true), so it can affect almost every part of your body. The trick to helping your husband is to find out either what is causing it OR the type of neuropathy which can often point to a cause especially if immune medicated or hereditary. (Immune system attacking the peripheral nerves). I am going to send you an E mail directly with some thoughts. God bless

  3. Hi there, I had a microdiscectomy 9 weeks ago. Pretty quickly after the surgery my legs (both) began to feel fiery and then I slowly started to get a warm tingly feeling that progressed everywhere; I also get bug like feelings and itchy feelings. I had a nerve conduction and EMG which came back fine. I have an appointment with a neurologist in my neurosurgeon’s group this week; everyone is confused by my symptoms. I’m scared to death! Gabapentin seemed to be working ok and now the dosing of 1200 mgs is not working as well. I googled tingling all over and eventually found this article. My neurosurgeon has told me twice that he thinks it will eventually go away and “we will probably never know what caused it since nerves are funny.” That seems a little Pollyanna, but I’m also a worrier and I don’t want to assume the worst. Is it too soon post surgery to think it could be something other than healing. I had no such symptoms prior to surgery.

    1. Carla: I am surprised that no one suggested the simple skin biopsy to see if small fibers have been damaged. Remember that all of these tests do NOT rule out a neuropathy, but only check to identify damage as you can have symptoms of neuropathy long before damage is done. Now only a Neuromuscular Neurologist can get to the possible bottom of your symptoms to see if they are indeed due to a neuropathy even if it is temporary. Yes the comment is a bit Pollyanna, but some neuropathies do come and then resolve. In addition surgery puts our body under a lot of stress chemically and affects our body in total. So while the symptoms are strange and may be even frightening, our body is telling us something is not quite right. It seems unlikely that these symptoms will result in something more serious if they are related to the surgery that your body is working to recover from and find healing. In regards to the Gabapentin not working quite as well, our bodies often adjust to medication and this may be a factor in this response. You may want to speak to the doctor about adding Nortriptyline to see if a combination of drugs help until it resolves but only if the symptoms continue. The other idea is to use a topical compound that the doctor can order for you and I will send information on this in the E mail. I will send you an E mail from gene@neuropathysupportnetwork.org with other information on neuropathy.

  4. My husband had a hip replacement in 2012 and he has had tingling and burning in many places and twitching in places ,we have been to neurologist they have tried gabapenton in large doeses it just made his mind cloudy. We have also been to the mayo clinic we are still getting no real answers he is only 45 it is getting him down please help what can we do next we don’t know what else to do.

    1. Teresa: I will send an E mail directly to you with some information and possible ideas.

  5. Hi. Im 26 years old male. In my eighteen years old I started feeling burning pain in parts of my feets. With the time was in the legs too. I did alot of test. Many EMGs, bone scans, many MRIs, blood works. None of those show anything except a Vitamin D deficiency I’m replacing the last months. The pain lasted some months before dissapear. 2 years ago when I feel burning pain in the legs and then over all body (belly, arms, back, groin) and was a hell! I also suffer in my feet pain to press it (like it was a bruise, a bone pain, not just skin pain) Then I did QST for evaluate small fiber neuropathy. The first time it was positive and started with Gabapentin a different dosis for months, nothing changed. I did another QST and was now negative, so I dont know. My doctor wasnt go for the skin and nerve biopsy at the moment, he says its risky.
    I describe the pain as “burns” “biting” “scratchs” “rash” “insect biting on toes” “slap” in the skin, or “inflamatory” pain in foot and legs (hurt to press) like if I was kicked and have a bruise 🙁
    It could be some kind of neuropathy?
    What about psychogenic pain? Psychiatrists always said “its all mental, bla blah” and want to put a generic medication for every possible problem… its disgusting.
    Thanks

    1. Mariano: Yes, while only a doctor can diagnose a neuropathy, your symptoms appear to be a neuropathy and IT IS NOT psychogenic… so get away from any doctor who suggests such to you. First a vitamin D deficiency can cause neuropathy, but when it is treated, (Dr. Norman Latov MD PhD book for patients) the neuropathy in many cases will resolve. However, since you have relapsed, I STRONGLY recommend that your doctor order the SKIN BIOPSY to see if it is a small fiber neuropathy, which is often immune mediated and can be treated with IVIg infusions. While the QST is used to diagnose an Autonomic Neuropathy, the SKIN BIOPSY is used to look for damage to the small fiber nerves and specifically at a possible small fiber neuropathy and it is simple and is not risky at all. Would not recommend the nerve/muscle biopsy as this is RISKY and not as helpful with such a diagnosis, plus it is used very sparingly and often results in loss of feeling in the foot and some patients end up with more pain in what is called ‘onion’ bulb pain from the cut nerve. Given the symptoms you have it would fit a progressive immune mediated neuropathy. I will send you an e mail on these issues regarding the skin biopsy and where your doctor can get the kit along with the article on using IVIg for Small Fiber Neuropathy.

      1. Thank for your reply. Psychiatrics dont tell me that neuropathy is psychogenic, this didnt mentioned the word “neuropathy” and when I told they that I was about to do a small fiber they said “nah, its too much..” “your pain have a mental origin” :/
        And my treatment with Vitamin D is less than 2 months at the moment. QST was used to evaluate small fibers too in my case. I dont know what is immune mediated and I read about Inmunoglobulin but dont know how well is it. Medications like Duloxetine really can help?
        And yes, my doctor said its risky for the same that you said (nerve biopsy). ..
        I didnt have another related-neuropathy symptom than those pain or tender along all those years and only sometimes in a specific point of the leg a tender to itchy instead tender to pain , plus I have sometimes cold feet or legs sensitive to some cold, I feel cold to the touch easily sometimes when is cold but more than should be but this is another thing I guees, maybe a bad circulation , or I dont know. Thank for your info. The next thursday I have to visit my doctor

  6. I am a veteran who suffered a severe head and neck trauma (traumatic brain injury) in 1972 when I was 19 years old. I am now 64 years old. The injury was so bad that the physician who treated me basically gave me up for dead and was extremely surprised I lived. He did tell me that I would suffer repercussions with my health through the years. And, he was correct about that. I won’t go into a lot of details about those health problems but I will tell you that I have progressively gotten weaker as I have aged, and not from aging. I take extreme care of myself and do not look like the typical 64 year old. I dread to think what I would be like today if I had not been taking care of myself. I have noticed that I continued to have increased pain, shocks, burning, muscle weakness where I stumble and drop things because the muscles give out. I also keep losing weight with the years. I used to weigh 180 pounds at 19 and now I am down to about 142 pounds. I was given tests at the Cleveland Clinic in 2014 and the results came back as autonomic small fiber neuropathy. My question is could this possibly have been set off by the traumatic brain injury that I suffered at the age of 19 in 1972? Thanks for any input on this subject.

    1. Charles: God bless you for your service to our country. Like so many you have paid a heavy price. All things are possible as the body as you well know is very complex. The more important question that our Medical Advisor sees is that of how to possibly treat your small fiber autonomic neuropathy. We have an article on the website about Autonomic Neuropathy and some practical advise on how to treat the various symptoms, but as Dr. Norman Latov MD PhD states, it is important not to over treat the symptoms of autonomic neuropathy. I do not know if you were in Vietnam and exposed to Agent Orange but this may be a factor, so send an e mail to gene@neuropathysupportnetwork.org and we will respond. IVIg has been used in small fiber neuropathy/small fiber neuropathy as experts on the subject note that it is often immune mediated meaning that it is caused by the immune systems attack on the nerves. Look at the article on the website on IVIg to understand its use. I will respond with more information to perhaps help from our E mail system.

  7. Doctor could you please tell me how doctors differentiate between small fiber neuropathy he or poly neuropathy and chronic regional pain syndrome?

    1. Tina: Our Medical Advisor writes that Small Fiber Neuropathy is neuropathy that is due to damage to the small fiber nerves as opposed to the large fiber nerves. We have both in our body and each has a different function. Damage to small fiber nerves can only be seen in a very simple skin biopsy while damage to the large fiber nerves can only be seen with the EMG, Nerve Conduct Study, and radiological studies in the hands of a trained expert. Physical examination often will help the doctor understand what nerves have been affected and to what extent. But understand that you can have symptoms of neuropathy long before damage appears. In some patients they have damage to both the large and small fiber nerves. Polyneuropathy simply means that more than one nerve whether large or small have been affected by the neuropathy. Chronic regional pain syndrome relates to pain that continues for more than 60 days and is very difficult to treat or is unresponsive to treatment. This can be pain from damaged nerves or from a physical external/internal factor. Neuropathic pain from damaged nerves is treated with various medications in the anti-seizure and depressant classes of medication and work for many patients but again we do not fully understand why. Unfortunately patients experience side effects from the medications we have and most patients get only about 85% relief and to often neuropathic pain cannot be totally prevented. We hope that in the future that perhaps genetic engineering may have some answers here for us, but that is perhaps a long time away.

  8. My whole body went numb at least a year and a half ago. The neurologist is going to do EMGs on all the extremities. I dont have any pain just loss of feeling or sensation. Almost like being over novacane but over the entire body and even inside of my mouth. How do I know if I have small fiber neuropathy or large? Thanks.

    1. Curtis: This is a VERY COMMON symptoms of nerve damage from neuropathy. I will respond by E mail directly to you, but of course it is very important that you use a cane or walker to prevent falls, but you probably already figured that out. Your condition may be treatable with IVIg, but I will explain more by E mail.

  9. Hi
    Seeking help for a complicated health situation.
    Going to try and explain this in a few words.

    Got a lot of pain in the body for 5 years ago. (Pain in the neck, feet, burning throughout the body, muscles, tongue, numb head etc ….)

    Hospitalized several times in Norway, they have not found anything out.

    Read an article online about celiac disease and got me tested for gliadin and transgl.
    This test was positive … (High values)
    Got biopsies of the bowel, it showed that I had celiac disease
    Began on gluten-free diet, symptoms did not disappear on gluten-free diet

    Googled again and found out that nervesystemmet could be in action along with celiac disease.
    Got taken EMG (Electromyography (EMG) and electroneurography) Everything okay.
    Googled again and found article on thin nerve fibers.
    Got biopsies down on foot.
    And it showed skin reduced nerve fibere density ….
    Have visited all major hospitals in Norway, but no one can anything about this ..
    Have tried many types of pain-relieving medications but none of them works.
    Have a lot of pain in the body, electric shock, numb head. No two days are same.
    Has very reduced quality of life.
    Can you help me ?

    Kjell
    norway

    1. Kjell: I will reply by e mail direct to you with some ideas from our research. God bless

  10. I will be tested to see if I have small fibre neuropathy by a skin biopsy. The biopsy is usually taken from the thighs and calf but I don’t have any of my symptoms there . Should a sample be taken from where I have the painful sensations example my hand and under my foot ? Also does small fibre neuropathy always consist of burning sensations or can burning be absent and one feels like a deep stabbing pain? My pain is symmetrical and I have like ants crawling under my skin of my hands and alloydnia in my knees with trousers on.

    1. Kurt: The symptoms of small fiber neuropathy are pretty much the same as large fiber symptoms when damage occurs. All symptoms you explain can be associated with either large or small fiber. Normally the biopsy is taken from the lower leg and the symptoms of SFN will show up in a sample even if not taken where you have the symptoms. I will send more information by E mail direct to you.

    1. Pain from Small Fiber Neuropathy is from damaged small fiber nerves.
      Psychogenic Pain is pain that is real but psychological causes rather than from damaged nerves or an external injury.

      A GOOD definition of psychogenic pain is: Psychogenic pain, also called psychalgia, is physical pain that is caused, increased, or prolonged by mental, emotional, or behavioral factors. Headache, back pain, or stomach pain are some of the most common types of psychogenic pain.

      If a doctor is telling you that neuropathic pain from Small Fiber Neuropathy is totally psychogenic, find another doctor. Any pain however has an effect on us emotionally and challenges our coping abilities and in fact if left untreated the body will respond by actually making the pain worse over the long haul.

      Small Fiber Neuropathy is diagnosed by a simple skin biopsy as noted in the article. We will send you more information on Neuropathic Pain by another E mail.

      1. Thank you for all the info you gave , really apreciated. I have days of tender skin more or less, I often feel in some parts like “Pain on the bone” but isnt really ; is like a deep awful pain on the “meat” , Sometimes this condition improves and gets worse and again… It will be nerve inflammations (neuralgia)??? I have seen like dozen of doctors the last decade for this. Mostly of them want to find a organic cause, and very few (this including all psychiatrists and few others) said that the pain have a mental/emotional origin. Until now absolutely all test I done were fine. They also give me a test of cold, heat ,vibration for test the small fiber, but I dont know if is a good test. A skin biopsy is very difficult to get here sadly ,grrrr, but is possible, so meanwhile I have doctors and neurologists that are amazed for this and people criticizing me that it is a mental thing and its my fault.
        And I heard that some Psychogenic pain can be similar to neuropathic pain but its rare.

        PS: Aside this problematic: do you know if a nerve problems can also give a sensitivity to cold (not pain) I mean having cold legs or feet most than is normal. for example after a shower I have my feets warm but in few minutes (i dont know if its for a sensitivity to the change of temperature) my feet are cold specially toes, I also try to not use jeans and try to use hotter pants . But I heard that this was more related to the circulatory part than neurological. Thank you.

  11. Hi, my symptoms started a year ago with strange weakness and pain my legs along with some upper body shaking. I went to a neuro who ran lots of blood tests which were normal, an EMG – normal, brain MRI did show some lesions not consistent with MS. I am a male in my mid 40’s. I have since had another brain MRI at 6 months which shows the same lesions without progression. My spine MRI’s are normal. My main problem now is pain in my calves that is more like a cold pain like when you put a Salon Paas on an area of your body. It’s more annoying than painful. This has caused the skin on my calves to appear very wrinkly or mottled? At least I assume that is what causing this. I also get an itchy burning feeling in my legs. This too is not that painful, but very annoying. It makes it hard to concentrate and relax. I just came from my neurologist appointment who is an MS specialist. She has reviewed all my labs and tests and she says I do not have MS, but rather Small Fiber Neuropathy. Her only recommendation was to increase my Gabapentin from 300mg t.i.d. to 600 t.i.d. I asked her about a biopsy to confirm this diagnosis. She said it is a sensitive, somewhat complicated test and not necessary. Is she correct in this statement? I have heard that exercise, which I haven’t gotten much in the last 6-8 months, can help alleviate some of the symtoms of SFN? Thank you for your time.

      1. I will try. I can edit everything except your name. But maybe David my generous knows how to do this.

    1. Brandon: First the skin biopsy for small fiber neuropathy is a VERY simple test and takes minutes to do. It is not a complicated test if done with the kit that is available from Therapath (See: Skin Biopsy for diagnosis of small fiber neuropathy
      https://neuropathyjournal.org/skin-biopsy/ and give a copy to your doctor. It comes with instructions and takes minutes to do with no pain!!! It is the only test to confirm small fiber damage.

      The other issue is that sometimes Small Fiber Neuropathy is IMMUNE mediated and is treatable with IVIg so having the skin test to confirm would be rather important to treat it rather than just the pain. Refer her to the 2012 Textbook of Peripheral Neuropathy by Peter Donofrio MD PhD of Vanderbilt Medical in Nashville. I will send you an article by e mail on the fact that SFN can be immune mediated and treatable with IVIg in many cases. Here is a link to get a copy of Dr. Donofrio’s book: http://www.amazon.com/gp/search?index=books&linkCode=qs&keywords=9781617050343

      Exercise is good BUT only if it low impact as the wrong kind of exercise will increase the pain by making damaged nerves work! If any exercise increases your pain or symptoms, stop, it is the wrong kind. If you want a DVD on this subject click on this link for information from an expert on the subject: Exercise for Neuropathy DVD https://neuropathyjournal.org/exercise-for-neuropathy-dvd/

      1. LT. Col Richardson, first thank you for your service. Thank you also for making the edits so only my first name appears.
        The information you have provided is invaluable. I will review the links you have provided and I will look for your email.
        During my appointment with the MS Specialist she did state there was a neurologist in this area that did perform the biopsies. I blew it off because she made it sound like it was a lot of work and her treatment would not change whether it showed I was positive or negative for SFN. Based on what you have said with the possibility of it being treated with IVIg I may contact her and get the name of the neuro who performs such tests in my area.

        As for exercise, this has been the biggest let down since experiencing these symptoms. I was a very athletic middle aged male prior to my issues. Now I find myself at the gym and only able to do some basic yoga classes, swim in the pool, or stretch on the mats. The link to the exercise dvd may prove to be very helpful.

        Is there any hope that I may be back to normal someday or am I looking at dealing with this the rest of my life? Thank you again for your time.

  12. My 72 year old mother was just diagnosed with SFN. Prior to the diagnosis she was taking Gabapentin which did not help at all. Now she takes Lyrica and Amitriptyline. She has gone down from three Lyrica a day to just two and hasn’t seen any change in effectiveness. Most days she is OK but yesterday was a very painful day for her. She doesn’t like the side effects of Lyrica and would like another option. Her doctor does not know what is causing her SFN. Should tests be done to rule out possible causes? Or does one just accept having to take medication to mask the pain and progression of the illness? I have done some “Googling” and see a treatment called IVIG and wonder if that may help my mother. In the past she was pre-diabetic but not any longer. She also has post polio syndrome. Please, I hate to see my mother suffer and know it will only get worse. I’m not certain she is asking the right questions of her doctor or getting the best care.

    1. Julie: Yes IVIg is sometimes used in SFN as many of them are immune mediated. I am 77 and have been on IVIg since 2004 and could not live without the infusions. I will send you an E mail with more information to help plus a document about the use of IVIg for SFN and other ideas for the neuropathic pain. Gene

  13. I’m 33 years old and noticed gradual numbness in specific areas of my feet and toes. I have a few toes that go through extremely painful episodes. Never told my Doctor as I am an athlete and associated it with any other injury.
    In the past year and a half I was diagnosed and hospitalized for a week at a time for C-Dif infections. The last hospitalization was accompanied by a TBI. So sick at home from C-Dif I slipped on the way to the bathroom and struck the back of my head on tile flooring. I was flown to a Level 1 Trauma Center where the C-Dif was confirmed for the 3rd time. The TBI caused a severe case of BBVP that was diagnosed and confirmed with all three tests. The Calcium Carbonite Crystals blew from central suspension to all over.
    Lastly it was noted that my resting heart rate was dangerously high. I’ve had countless days that I hit SVT and after three Cardiologists and surgeons, including the head of Cardiology @ our Mayo Clinic/Hospital in Arizona we have a confirmed diagnosis of Innapropriate Sinus Tachycardia. Corlanor has been given at the highest dose for about 6 months. No success with Beta Blockers or a handful of other medications they tried. They confirmed the SA Node is responsible for the rapid heart rate.
    The team at Mayo includes my main physician who is a Neuromuscular Neuroligist. Prior to the biopsie for small fiber neuropathy tests confirmed an Autonomic Nervous System Disease or Disorder. Tests also ruled out POTS.
    My concern is this seems to be a trifecta where most have one or two of the issues. I’m scared to have all three confirmed and what I’m looking forward to having happen.
    Is it not uncommon to come across all three? Diabetes has been ruled out and is continually tested to ensure it is not the cause of the Autonomic Nervous System Disorder/Disorder or the Small Fiber Neuropathy.
    They want to attempt to ablate the SA Node to hopefully get the heart rate under control. They are aggressively starting the testing to find the cause of the Autonomic Nervous System Disorder/Disease and looking to start Ketamine Infusion.
    Sound like they are on the right path?

    Lastly, it is very possible it is hereditary as my Mother was diagnosed before I was born with RSD. I took care of her from the age of five until last year. I never imagined or thought it could heriditary because they said hers was a result of injury. Like many patients with her chronic pain and those in the support groups the pain became unbearable. We are a family of Survivors of Suicide.

    1. Melissa Will respond to all the issue by separate E mail… behind in all the requests but will get to you by e mail.

  14. I have been diagnosed with small fiber neuropathy with orthostatic intolerance, GI and GU symptoms. Started back in 2006 and has progressive gotten worse. Been to two top Medical Center with no cause identified. Do you know if there are any longitudinal studies out there that discuss the long term prognosis and mortality with SFN?

    1. David: At first glance, the cause may not be important at this point. SFN can be immune mediated and treated with IVIg. I will write more. It also appears that you clearly have autonomic neuropathy with the orthostatic intolerance and GI / GU symptoms. These symptoms will respond to treatment with IVIg. I will send you an e mail to back up this information with the doctor who notes this fact for SFN. From what we know, few of us die from these neuropathies…. most of us die with them for other reasons… but they make life rather miserable.

  15. Hi there,

    I have been diagnosed with SFN Non length dependent, after experiencing symptoms about 3 years ago. I have had a battery of blood tests including Lip biopsy and genetic testing SCN9A/10. No family history so far with any such condition. However, my sister has had similar symptoms to mine for about the same time. Hers are like hot feelings,( no pain) lots of crawling sensations and buzzing. She has seen a few neurologists, the last one of which said it is hereditary so there is no point in going for the biopsy. She is still going to have the biopsy. What I don’t understand is how it can be hereditary if my mother or father never had any symptoms and seems a bit of a coincidence if we both had it at the same time. I am 38 and she is 35. I have been offered a trial of IVIG, which I haven’t used yet, as symptoms have been stable and full body burning has subsided. Just worried in case this can be passed onto my children.

    1. Kate: A neuropathy can be hereditary without it being in the family. However, I would encourage your sister to not have the biopsy as it is not necessary in so many cases and the spinal tape would be safer and even more diagnostic. SFN is often treated with IVIg and I will send you information from an expert on this subject. So IVIg may help stop the damage from progressing. I will send you an E mail direct to you.

    2. Kate: A neuropathy can be hereditary without it being in the family. However, I would encourage your sister to not have the biopsy as it is not necessary in so many cases and the spinal tape would be safer and even more diagnostic. SFN is often treated with IVIg and I will send you information from an expert on this subject. So IVIg may help stop the damage from progressing. I will send you an E mail direct to you.

      1. hi there, i just wondered how a spinal tap would diagnose SFN? i have had this procedure and it was horrific, this did not show anything. i thought the diagnositic tool for SFN was a skin biopsy? I have got a trial of IVIG on the NHS due to having increased nerve fibers on the biopsy which is an idication of inflammation. My sister was told if it is hereditary then IVIG won’t work. I though ivig was for immune mediated SFN? So if we both have something genetic then how will ivig help us?

        Thank you.

  16. Thank you for the article above. I have been dealing with neuropathic pain since a bicycle accident (TBI diagnosis) in 2006, but no known cause found and no diagnosis to date. However, I found an old test result today when I was able to log onto a patient portal for the first time, but I have no recollection of the doctor telling me this result–this was on the test result from a Punch Biopsy in 2007:

    “Immunolabeled thick sections revealed some swellings within and fragmentation of epidermal and dermal neurites. There appeared to be more neurites than expected, these may be an early sign of axonopathy affecting small cutaneous sensory axons. Immunolabeled epidermal nerve endings yielded a density of 415 neurites per square mm of skin surface area, at the 91st centile for age, far above the normal range. Fragmentation of axons can contribute to unusually high numbers of neurites. The clinical significance of increased neurite counts has not been defined in the medical literature, although clinical experience links it with early axonopathy. This density can be monitored with future biopsies to evaluate disease progression or the effects of therapy.”

    I no longer see the doctor that ordered this test. I sent this to my PCP and she is looking into what this means. Can you provide some insight? Thank you so much!

  17. I am 34 years old and I was diagnosed with small fiber neuropathy two days ago. I am trying to research more information about it. From what I read, I apparently have autonomic neuropathy since a majority of my symptoms affect the ANS (orthostatic intolerance, GI symptoms, etc). I have had IBS since I was about 12 years old, but a car accident almost 1 1/2 years ago seemed to be the catalyst for several debilitating symptoms include a severe fatigue which has left me unable to work or able to do much. After going through many tests and various specialists I was able to find an amazing local neurologist, Dr. Todd Levine, who is mentioned in your article. He immediately suspected small fiber neuropathy and was able to diagnose it with the skin biopsy. I will be doing some upcoming blood tests to try to determine the underlying cause and hopefully pinpoint a treatment plan. My next appointment is not for another few weeks so if you have any additional resources you can direct me to about this condition, I would be most appreciative. Thank you.

    1. SFN is sometimes treated with IVIg. I will send you more information by e mail and a copy of the article by an expert neurologist on this subject that you can give to your doctor to consider. Gene

  18. A year ago I began to have burning in my right 3 middle toes. I was told by a neurologist it was sfn from years of heavy beer drinking. I have since stopped drinking and on gabapentin. The burning stopped but comes back from time to time. If i never drink again will the burning ever stop for good. Thanks Roger.

    1. Roger: Most neuropathies from drinking beer is due more to poor diet and once you stop drinking the neuropathy resolves according to our experts. Remitting and relapsing of symptoms is a common feature of the neuropathies. If you stop drinking the burning may or may not stop for good as it depends if something else is going on. You need to be working with a good neuromuscular neurologist to determine if this really is SFN or something else. Lots of testing and we wills end you an E mail to guide you.

  19. Thank you so much for writing this article. I have recently been diagnosed with SFN at age 41, although I have been living with it for a few years. Like many who commented on here, it took a long time to get the proper diagnosis. I first went to the doctor for burning in my legs almost 3 years ago. I spent the next 9 months having multiple blood tests, MRI’s, electrical testing, etc. done on me, and they all came back saying that there was nothing wrong with me. I began to wonder if it was all in my head, and I got so frustrated at spending all that time and money with no results that I finally gave up on it and decided to try to live with it. But it progressively got worse, to the point where it’s now painful all over my body, and the right side of my face feels like I’ve just been slapped by an NFL linebacker. When I went back to the doctor, he ordered a biopsy to check for SFN, which came back positive. I’ve been referred to a neuropathy specialist, who I will see next week.
    My question is about my heart rate. My resting heart rate is 20-30 bpm more than it normally is. These last few weeks I’ve been hovering between 90-100 bpm at rest, where I usually sit in the high 60’s/low 70’s. Other symptoms that have accompanied this (which most doctors shrugged off as unrelated): I’ve lost hair on my legs and armpits (my wife is jealous of that), I have no eyebrows (lupus test came back normal), and the hair on the right side of my head/chest is thinner than the left. I’ve had loose stools ever since the burning started, and it feels like there is something caught in my throat that makes it difficult to swallow (ENT doc ran a camera down there, didn’t see anything). I’m curious if this sounds like an autonomic disorder to you.

    God bless you and thank you for your service!
    Thanks,
    Floyd

    1. Floyd: As Dr. Latov points out in his book for patients, the loss of hair on the legs is a sign of CIDP or Chronic inflammatory Demyelinating Polyneuropathy or one of the variables. With autonomic neuropathy the experts note that heart rate and difficulty swallowing can be a symptoms of Autonomic Neuropathy. You need to find a Neuromuscular Neurologist who has the special training needed to diagnose and treat your progressive disease. I certainly would explore the use of IVIg as a treatment. I will send you more information by E mail. IMPORTANT: You are not crazy, You have a disease. You just have not found a doctor with the knowledge and training to help you! God bless.

      1. Thanks for your reply. I had issues trying to access my email with my smart phone, and somehow ended up losing a number of emails in my inbox, including the info about IVIg that you emailed me. Could you please resend it to me?

        Thank you so much!

  20. Hello, I am searching for answers. I am 48 years old and I was burned by an MRI machine. I was having a thoracic MRI done on February 29, 2016. When I was in the machine the base of my head felt like it was on fire. When I got out of the machine I was burnt from my head to my thighs. I had a burn mark on the back of my head. My whole body felt like it was on fire. I was burning from the inside out. I was in the machine for 40 minutes. The hospital just sent me home. My body would not stop burning inside. I went to another hospital for help. They said they never heard of anything like it and gave me inflammation pills and sent me home. I called three burn units and they all told me the same thing. I didn’t have an open wound so they could not treat me. I just want this burning pain to go away. I went to the Chicago Hospital ER department. He said MRI’s can’t burn people and he would not check me out and sent me home. I told him its all documented. This is real! I can’t sleep. My body burns from the inside out. I have seen so many doctors. I have been to a family doctor, neurologist, dermatologist, opthamologist, podiatrist, therapist, and a gastroenterologist. It burned my peripheral vision and I lost some vision in both eyes. I have numbness, tingling, burning , itching, pain, , electric shocks, muscle cramping and spasms in all four limbs. My skin itches all over. I know I have peripheral nerve damage. The doctors keep telling me there is no cure for neuropathy. I am in so much pain. I am having a very hard time living this way. I want someone to research me. I need help! My feet will not stop burning and itching. The pain is so bad. It never stops. I am only taking Nabumetone 500 mg.

    1. Donna: This is difficult to answer as you have found out from the doctors. I am going to do a bit of research on the possible effects of an MRI BUT I like the doctors have never heard of this happening. HOWEVER, you do have the symptoms of peripheral neuropathy as you have explained above. I do not know why they have not tried other pain medications for neuropathic pain regardless of the cause such as Nortriptyline and others that are available. There may not be a cure for neuropathy, but there are treatments that can help one live with it. I will send an E mail to provide more information. Meanwhile you need to see a Neuromuscular Neurologist and do not push the MRI effects that you believe is causing your symptoms but FOCUS only on the symptoms of neuropathy such as you describe, e.g. numbness, tingling, burning , itching, pain, , electric shocks, muscle cramping and spasms in all four limbs and skin that itches all over.

  21. Hello, thanks for all you do to educate those with questions. I have been suffering from progressive burning/stinging pain and numbness over the past two years. Unfortunately it has spread to cover most of my body at this point and shows no signs of slowing down/stabilizing so far. I have been seeing a neurologist with neuromuscular training and he feels it is small fiber neuropathy. After lots of testing there is no known cause and it is being classified as idiopathic. Antiepileptic and antidepressant meds have not been very helpful or have only worked for a short time. I would jump at the chance to try IVIg but as you know it is very expensive and from what I have read, it seems insurance companies typically view IVIg as investigational for SFN and will refuse payment. Still, I would love to hear more about your experience with IVIg and if you are aware of any physicians who would consider a therapeutic trial of IVIg for idiopathic small fiber neuropathy.

    1. James: I will respond by E mail to your questions. We have a document by an expert regarding the use of IVIg for SFN. Sounds like you have a progressive polyneuropathy. Will share some other ideas on neuropathic pain in the E mail. Was wondering on what basis the doctor diagnosed SFN? Did they have the skin biopsy done to confirm?

      1. Hi, been diagnosed with small fiber neuropathy by biopsy. I developed it after a flu shot 10 days later. Mayo clinic report to be immune mediated as a result of flu vaccine. I need help getting authorization for ivig since my blood work is fine. Please help I’m in severe pain 1/2 The nerve fibers are gone.

  22. LtCol
    How are you? My problem started in April 24, 2016. I woke at night with severe tingling in the right arm. On May 11, after lifting weights at gym, my left leg started tingling. In fact both legs were tingling. In addition, the left arm went limp. I iced and heated the legs and neck.
    On June 14, my middle left finger curled over. On June 17 and 24, my arms felt very weak. It freightened me to the point where I left my home of 38 years and moved across country to be with family. (widowed/no children)
    On July 4 and 6 the arms were in such pain and I could not lift them. Around July 23 the tingling and burning started at night. Sometimes its in the legs, the arms, the feet and hands. The pain is aweful. Just aweful.
    The first three neuros stated it was stress and said I needed to see a psychiatrist. I started counseling and she agreed that all medical ilnesses should first be ruled out. One of the neurologist then gave me an emg/nvc of all limbs. It showed no evidence of pn. She again stated stress and depression from retirement. On Oct 3, I went to the Cleveland Clinic and took emg /nvc of left leg and arm and skin biopsy on left leg. The emg /nvc is negative for pn. The sfn results will issue in two weeks. When I mentioned IVIG to the Cleveland neuro she stated its about $50,000. per treatment which I can not afford.
    I was required to do so much research advocating on my behalf regarding my health until if you need volunters I woud love to assist individuals and direct them to the appropriate institution.
    The fifth neuro believes its radiculopathies from my neck and back causing symptoms and I am in physical therapy.
    I am moritifed at having sfn. I am now on Lithium and alpha lopoic acid and am extremely depressed. Please send me information on IVIG. I am on medicare and I am thinking that should I have sfn it will be covered. Or perhaps there are research programs that I can join. I am also concerned that sfn can eventually incorporate the large fibers and I could become crippled.
    Please help me with any information that can assist me.

  23. Hi, My wife was diagnosed with SFN about 5 years ago. Both of the punch tests came back positive at the time. She is experiencing the pain over her entire body at this point. She has recently been having problems with the same kind of burning that she describes as internal around the gastro area. Does SFN affect the internal organs?

  24. Hello LtCol Richardson — I’ve been dealing with neuro Lyme symptoms and elevated heavy metals for the last 6 years or so. About 6 months ago, I started experiencing the pricks, pins and needles and burning associated with neuropathy first in my feet, then hands and throughout my body. My legs have become tighter and it has become more difficult to walk and stand (before my illness, I had been very active and athletic). I did the Therapath skin biopsy and it came back that I had significantly reduced sweat gland and epidermal nerve fiber density. My doctor however does not want to treat with IVIg, citing his view that it only helps a small percentage of patients and is not worth it with the expense. I do not agree and would like to find a different doctor. Would it be possible to send the article detailing the use of IVIg as treatment for SFN? Also, I understand that you have had IVIg infusions for many years — is there any possibility that the small fiber nerves would regenerate over time so that IVIg infusions would not need to be used in perpetuity? I am a 48 year old male. Many thanks for your service and your incredible help with this condition.

  25. Dear LtCol Richardson,

    Thank you for your contributions, it is heart warming to have a professional share their knowledge.

    I believe that I have SFPN. I watched a webinar where one of the speakers was Harvard Neurologist Dr. Anne-Louise Oaklander. Her research linked upwards of 1/2 the participants in her study that have fibromyalgia and found SFPN to be there as well.

    I have been diagnosed with Fibromyalgia since 2010 and was prescribed Gabapentin which I take every day. I have found it odd that despite my expressions of concern regarding numbness, shooting pain, burning, electric-like, etc in my extremities and elsewhere on my body, my Doctors (General Physician and Rheumatologists) have never suggested SFPN as a malady that I may suffer. They seem to throw their hands up and suggest that Fibromyalgia being the ‘waste basket’ syndrome that some equate it to be, well, all ‘problems’ are then shuffled into that category without exploring anything further. I am perplexed that Doctors do not investigate further, particularly as years go by!

    Dr. Richardson, what is your opinion regarding the research and findings of SFPN and Fibromyalgia? Further, any tips on talking to family Doctor about these issues?
    I live in a rural location, where a Neurologist would be 700 miles away; therefore, most treatment is done by GP.

    Thank you kindly.

  26. Hello , I have a similar story to some of these lists. My father (67yo) served in Vietnam and at that time suffered a severe traumatic brain injury that left him with left leg weakness for his entire life . He compensated for it , worked full time etc. about two years ago he was diagnosed with a stage 1 lung cancer which was removed and no chemo or radiation was needed . He is cancer free. He subsequently developed severe orthostatic hypotension ( he had been hypertensive until this point). He was worked up by a cardiologist and no cardiac reason was found. They sent him to a neurologist who was convinced that he had a paraneoplastic syndrome from the recent lung cancer, but he ruled out for that. He had a muscle biopsy by the neurologist. While we were waiting for these results he had a syncopal episode and fell down the stairs . After the fall his right leg ( the good one) became weaker than his original bad leg . While in the hospital the neurologist came back with the muscle biopsy report and he ruled in for autoimmune small fiber neuropathy . He underwent Ivig and 10 days of plasmapheresis. He spent 4 months in the hospital and rehab and then Developed a spontaneous left shoulder bursitis / septic joint that was drained and he required long term antibiotics. He recovered from that and the neurologist stopped the Ivig because he felt that the shoulder infection was related . He is now 5 months out of the hospital and still with imbalance and unable to walk. He is wheelchair bound with occasional walker use with physical therapy. He has no nerve pain, but does have muscle spasms in his legs . He is on lyrica. Any thoughts? Thanks

  27. Hello, and thank you for your time. I had GBS at the age of 5 and 24. Both were confirmed by a LP. In 1984 the symptoms started with burning and numbness. This than ascended to weakness in arms and legs, falling etc( it started about 2 months before I actually became paralyzed. This year in May I started with the burning and numbness again and I had difficulty walking with unbelievable pain. It progressed like it did with the GBS. I was hospitalized where they did a LP and it was negative. I ended up going to NYC to see a neurologist. I had a emg and nerve conduction with only should the issues I have with a neck injury.. A skin biopsy showed the small fiber neuropathy. Can these be related? I do have a history of autoimmune illnesses Hemospherocytosis, severe allergies, asthma etc.
    Thank you

  28. Hi. I have just been diagnosed with small fibre neuropathy. I have not had a skin biopsy. I had spinal surgery 6mts. Ago. I had 2 screws & bar put in my lower spine. L4.L5 area plus other work at same time. When I awoke after surgery I had severe pain in both feet like electric shocks. My surgeon would not listen to me. After coming home from hospital I got much worse. I also feel I have a shortening from my feet to my calls. If I walk on my bare feet I am bent over & get severe pain in my calls. I have to wear high shoes such as block heals or wedge shoes. I am on 400mg lyrica plus Targin plus a night tablet. My surgeon has never seen this before & referred me to a neurologist. He Cannot explain the shortness from feet to calf. He just said trauma to body may have accrued during surgery. He is a colleague of the surgeon. PLEASE HELP ME. My whole quality of life is gone. Thanking you. Cora

  29. Hi Doctor,

    For the past six months, I have been a mystery patient. I have SEVERE localized itching on my labia region. I have seen an infectious disease doctor, a neurologist (that referred me to a gynecologist), five gynecologists, three primary doctors. Every test has been negative. Finally, the last gyno I saw suggested it was nerve damage or a neurological itch. Does this sound plausible? I am lost and the gyno I am seeing is trying to treat me with gabapentin (400 mg/day – 200 morning/200 night). I have been on this dosage for five days and have seen no results. Please help me. I am so lost and cannot live like this. Do you have any ideas? It’s CONSTANT.

  30. Hi, I would like to write a little about my husband and his symptoms. It all started 4 months ago by electric shock on the right side of the head and down to the face and neck. Then began the guys even on the left side who lasted a few seconds, several times a day. We were at the doctor and he said it was the occipital neuralgia, in the beginning we thought that he got it because it was approaching his botox injections for migraines, but after the injections continued it after 3-4 weeks it started to suddenly burn under his right foot, after a few days was added in tingling, numbness, pain in the foot and left foot were the same. Then it continued with tingling in the fingers and now even burning pain in your fingers. Sometimes go numb his bones, and he may even cramp in the legs and feet. The lip may also be domna and burn. He has made Emg, eeng, and Qst test and got his diagnosis smallfiberneuropathy. All blood tests are good, no diabetes, thyroid or vitamin deficiency. Something must have caused this but we don’t know what is. Twelve years ago, he worked as a painter, but has never had such symptoms, he has also eaten ciproflaxin, a few years ago, but has felt good until four months ago. We live in Sweden and have not even any neurologist to meet, got to meet the neurologist once and has now been sent to go to home doctor. Jan eats saroten to night and to get neurobion (b12, b1, b6) every other week 6 times to see if it helps. My husband is 44 years and life has been turned upside down. There is no treatment that stops the disease and I am worried about what will happen. I am glad that I found your site. There is nothing we can do? Grateful for the response. Regards, Gina

  31. Thank you, sir, for your service. I am prior military and my husband retired from the AF. My issues started with migraines 27 years ago, increasing in intensity, recurrence, and duration. The longest migraine was over 3 months. I started having issues with numbness, feelings of weakness, and “insane, unstoppable itching” in my arms and legs 17 years ago. I have been diagnosed with SFN and have been told the migraines are not related. It was also determined that I have glossopharengeal and trigeminal nerve impingement. I have been moved from one neurologist to another, and told I had everything from MS to Lupus to Sjogrens to being treated as a hypochondriac. I didnt get any answers from the Mayo Clinic either. To make matters worse, no one doctor will treat both migraines and SFN. I recently had to resign my teaching position because the pain has become so bad I have to use a walker as I fall. I am only 50 and my hope for the future had been shaken to my very core. Since we have retired military insurance not many places will accept me. Do you have any suggestions on dealing with all this? Is there a military facility that can help me? Thank you gor being so open and helpful.

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