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Small Fiber Neuropathy in CFS

Discussion in 'Peripheral Neuropathy' started by alex3619, Oct 7, 2010.

  1. alex3619

    alex3619 Senior Member

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    Hi everyone,

    It has recently come to my attention that many of us have small fiber neuropathy, as posted on CO-CURE:

    CLINICAL PAIN MEDICINE
    ISSUE: 9/2010 | VOLUME: 9:09

    Small Fiber Neuropathy Demonstrated in Pain Syndromes

    Andrew Wilner, MD
    Toronto—Nearly half of patients with a painful condition had evidence
    of small fiber neuropathy on skin biopsy, according to research
    presented at the 2010 annual meeting of the American Academy of
    Neurology meeting (poster P05.231).

    Devanshi Gupta, MD, and John Harney, MD, neurologists at Dallas
    Neurological Associates, Richardson, Texas, and co-authors of the
    paper, reviewed 48 patients who underwent skin biopsy for evaluation
    of small fiber neuropathy. Of the patients, 30 had a painful
    condition, such as fibromyalgia, chronic fatigue syndrome, chronic
    pain syndrome or some combination of the above. Of these, 13 (43%) had
    evidence of small fiber peripheral neuropathy determined by reduced
    epidermal nerve fiber densities on punch biopsy of the skin. Although
    some of these patients had positive electromyography and nerve
    conduction velocity tests for neuropathy, others did not.

    “We have found an overlap between small fiber neuropathy and chronic
    pain in many patients,” observed Dr. Gupta.

    Punch biopsies were taken 10 cm proximal to the lateral malleolus
    (abnormal <5.4 fibers/mm) and 20 cm from the anterior iliac crest on
    the thigh (abnormal <6.8 fibers/mm). Specimens were sent to Therapath
    Lab for interpretation.

    Dr. Gupta advised that physicians consider a skin biopsy for
    evaluation of small fiber neuropathy in patients who present with
    sharp, shooting pains, orthostatic hypotension, autonomic symptoms,
    trophic skin changes, incontinence, sexual dysfunction or other
    neuropathic symptoms. One should consider a small fiber neuropathy
    particularly in patients with comorbidities such as diabetes,
    Sjogren’s syndrome or vitamin deficiency, according to Dr. Gupta.

    “There are other ways to diagnose a small fiber neuropathy,” Dr. Gupta
    observed, “but skin biopsy is the easiest way and provides an
    objective number, which can be followed. The technique takes a little
    practice, but it is straightforward to learn.”

    “Small fiber neuropathy should be suspected if there is distal limb
    (lower extremity greater than upper extremity) pain or decreased pain
    sensation,” W. King Engel, MD, director and professor of neurology and
    pathology, Neuromuscular Center, Good Samaritan Hospital, University
    of Southern California, Keck School of Medicine, Los Angeles. “I do
    not do skin biopsy exams. I am concerned about false-negatives. Skin
    biopsy abnormalities must not be the sine qua non of diagnosing small
    fiber neuropathy. A careful clinical sensory exam for hypo- and/or
    hypersensitivity, along with the history, is the best way to diagnose
    a small fiber neuropathy. However, a punch biopsy of skin can support
    the diagnosis of small fiber neuropathy.”

    Dr. Engel cautioned that the reproducibility of results of different
    biopsies taken at the same time in the same region probably is not
    consistent enough for following improvement or worsening
    determinations.

    “When you see chronic pain overlapping with symptoms of small fiber
    neuropathy, it is very correct to pursue a thorough investigation,”
    Dr. Gupta concluded. “If you diagnose a small fiber neuropathy,
    patients may respond to specific treatment for neuropathic pain.”

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    The Cleveland Clinic Journal of Medicine has this to say:

    http://www.ccjm.org/content/76/5/297.full
    Small fiber neuropathy: A burning problem
    JINNY TAVEE, MD
    + Author Affiliations

    Neuromuscular Disease Center, Neurological Institute, Cleveland Clinic
    LAN ZHOU, MD, PhD
    + Author Affiliations

    Director, Cleveland Clinic Cutaneous Nerve Laboratory, Neuromuscular Disease Center, Neurological Institute, Cleveland Clinic
    ADDRESS: Lan Zhou, MD, PhD, Neuromuscular Disease Center, Neurological Institute, S90, Cleveland Clinic, 9500 Euclid Avenue, Cleveland, OH 44195; e-mail zhoul2@ccf.org.

    Next Section
    Abstract

    Small fiber neuropathy is increasingly being recognized as a major cause of painful burning sensations in the feet, especially in the elderly. Although strength remains preserved throughout the course of the disease, the pain and paresthesias are often disabling. Diabetes mellitus is the most common identifiable cause of small fiber neuropathy, and impaired oral glucose tolerance and individual components of the metabolic syndrome are often associated with it. Some cases, however, are idiopathic. Skin biopsy (with an evaluation of the density of intraepidermal nerve fibers) and tests of autonomic nerve function are useful for the diagnosis. Management involves controlling pain and identifying and aggressively treating the underlying cause.

    Previous Section
    Next Section
    Key points Symptoms of small fiber neuropathy typically start with burning feet and numb toes.

    Key points Causes and associated conditions can be found in over 50% of cases. These include glucose dysmetabolism, connective tissue diseases, sarcoidosis, dysthyroidism, vitamin B12 deficiency, paraproteinemia, human immunodeficiency virus infection, celiac disease, neurotoxic drug exposure, and paraneoplastic syndrome.

    Key points Findings on routine nerve conduction studies and electromyography are typically normal in this disease.

    Key points Management includes aggressively identifying and treating the underlying cause, advising lifestyle modifications, and alleviating pain.


    Alex again: given that B12 problems, glucose and connective tissues diseases, neurotoxins and HIV can probably cause this, what's the bet that XMRV is another cause?

    Bye
    Alex
  2. paddygirl

    paddygirl Senior Member

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    Willpower?

    I'm confused, I was directed to a website with happy people selling some life long treatment for peripheral neuropathy, do I need willpower and money too??? :(
  3. Francelle

    Francelle Senior Member

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    Apart from a dreadful cough probably due to Mycoplasma Pneumoniae (elevated titres), peripheral neuropathy was my first symptom of Fibro/M.E. Despite the subsequent emergence of many other symptoms, two neurologists had no clue as to the ‘package of’ what was happening to me.

    The second neurologist I saw did suggest that it was probably a small fibre neuropathy and did thermal threshold testing etc. but in the absence of IENFD (intra epidermal nerve fibre density) testing here in Australia there was no way to objectively diagnose the SFN.

    The other neurologist (first one I saw) said that I was probably developing ‘psychosomatic’ symptoms – jerk! Meanwhile three years later I still have these ‘psychosomatic’ symptoms (as do we all). I so feel like sending this woman this paper and other objective testing I have since had done and remind her of my case – but perhaps I’ll wait a bit longer until further evidence of XMRV comes about!
  4. alex3619

    alex3619 Senior Member

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    Hi everyone, I think sfn is hard to treat when we aren't sure of the cause. Willpower has nothing to do with it. Cool water soaks help apparently, at least for burning feet syndrome, but although I don't get relief with hot water, I do feel much better several hours later - some patients have stated that they can't handle this at all, so it might be that only some patients respond better to hot water. I do know that cool water (not freezing!) will immediately reduce the pain.

    Others do recommend supplements or drugs, I forget which at the moment, except that alpha lipoic acid has been suggest by a doctor I know on the net.

    Bye
    Alex
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, lipoic acid for sure. You need a good brand and the right dose. It is wonderful. I think all doctors should know this, but most are clueless. Thank goodness mine knew about it.
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What can it hurt? Send them a copy of this report. Drs do need to keep up on their education, correct? So why not this article. I know my Dr does not mind me bringing docs in, not sure if you still see this doc. Best of luck!

    GG
  7. August59

    August59 Daughters High School Graduation

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  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I am so glad they mention supplements like lipoic acid.:D
  9. dannybex

    dannybex Senior Member

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    Hi Sally,

    Do you know if you have any heavy metal problems, (mercury, etc.)? I was told a year or so ago that lipoic acid helps, but if one has heavy metal problems it needs to be taken every 3-4 hours for several days so that it doesn't move mercury to the brain?

    This is according to Andrew Cutler, who has written a lot on heavy metals and chelation.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    No metals that I know about. I take all of my supplements with the supervision of my doctor who knows about them. I never had luck doing them on my own. Dosing is important and we are all different.

    It really makes me sad that most docs don't know about supplements. The Lipoic Supreme is great for me. Helped my nerves in my feet and those and other things I take have helped my POTS so much! My feet are great now.

    Another thing is going Gluten Free. I have read a lot about how that is good also. Doctors rarely try that either. I am the one that brought it up to my doctor.
  11. August59

    August59 Daughters High School Graduation

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    Which Lipoic Supreme do you take? There seems to be several with that name and I have been looking into the big differences between Alpha Lipoic Acid and R-Lipoic Acid?

    I started taking a "Coenzyme B-Complex" a few weeks ago and it appears to have be helping some, but still a little too early to tell. I didn't start it for neuropathy, but have noticed some improvement with it so far.

    Thanks
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I use Lipoic Acid Supreme by Designs for Health. I love it, it has been wonderful for me
  13. John Day

    John Day

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    Intra Epidermal Nerve Fiber Density Skin Biopsy IENFD (Australia)

    This is a reply to Alex's post regarding the incidence of small fiber neuropathy within CFS. It has particular relevance to Australians because the emerging objective test for SNFN is the IENFD biopsy. A major study has been done by the Adelaide Univeriity and is presented in this PDF:

    http://www.horizonscanning.gov.au/internet/horizon/publishing.nsf/Content/6B81AEB3E7EE0001CA2575AD0080F344/$File/Vol%2018%20-%20skin%20biopsy.pdf

    The astonishing fact is that the IENFD biopsy is not available in Australia. I have contacted a number of universities, hospitals and chief pathologists who have all confirmed this fact.
  14. lahma

    lahma

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    I was diagnosed with small fiber neuropathy (SFN) about 3 yrs ago. It is not the peripheral type and I experience pain/burning sensation in many areas from the neck down. I probably had SFN for many years prior to the diagnosis.
    I also have been having more fatigue as well such that I can do normal activities for only several hours per day. Does anyone with SFN also experience any excess fatigue?
    Thank you.
    LAHMA
  15. Mark

    Mark Acting CEO

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    Hi Lahma, welcome to the forums.

    I don't have a SFN diagnosis, but I'm very interested in this subject because it seems to fit well as a description of my burning and itching sensations. So I'm going to look into it with my GP next time I see him.

    Anyway: what I have noticed for my own symptomology over the years are a couple of patterns. First: the pain, burning and itching sensations are worse when I have relaxed my very strict diet - so for example if I eat some wheat/gluten, that increases my likelihood of getting more trouble from itching and burning pains, although there are some things (eg specific clothes, bedding, sofas) that always provoke those pains no matter what I've been eating. Second: when I am having trouble with itching and burning pains and I'm unable to track down the source for that pain, or when I'm unable to find any clothes that don't provoke my sensitivity reaction, fairly quickly that then causes a relapse into all my other symptomology, which is all much more debilitating (basically, near enough everything else on the standard lists of symptoms for CFS starts happening within a week or two and gets progressively worse and worse) - the fatigue/exhaustion/inability to sleep is particularly debilitating because it reduces my capability to cope practically with everything else.

    (Unfortunately, this downward spiral is happening to me at the moment :-( If it gets really bad I will have to take a week or two out of life purely to concentrate on saunas, diet, supplementation, clothes, etc etc, and do nothing else until I've fixed it - normally whenever this happens I can pull myself out of the hole again in a week or two...so far...but it's hard to do...)

    For me, one of my most important observations, over the years, is that when I am attempting to sleep when I'm in contact with something that is currently provoking that reaction, I am not able to really sleep properly. It's like trying to sleep while being randomly pricked with needles and burnt with 'deep heat' - not exactly conducive to refreshing sleep! What seems to happen after a few days of that is that I begin to get back into the state I was in for a decade or so: I 'sleep' for 14 hours, with my body apparently somehow completely 'shut down' and insensitive, and not even moving at all during the night, but I don't feel refreshed at all and wake up feeling absolutely shattered, and with the same neck pain (etc) that I went to bed with. With one half-decent night's sleep, the neck and back pain, the normal muscular pain that I accumulate during the day, will have been 'healed' overnight - but if I'm trying to sleep in a situation that's provoking my itching and burning, I don't sleep properly and that healing doesn't happen.

    So that's how the SFN connects to the fatigue, for me anyway - assuming of course that SFN is the right explanation for my own painful sensations...but I would imagine that chain of cause and effect could easily apply to any painful sensations. Once we get to a certain level of fatigue - which doesn't take much, just a few nights disturbed sleep - after that the body will be so tired that you just fall asleep straight away without necessarily noticing the tingling and itching, or at least, falling asleep despite that ongoing pain - but that doesn't mean you are really sleeping properly, and it doesn't mean that the problematic exposures aren't happening - I think the body just 'switches off' somehow and shuts down in a way that lets you 'sleep' but you're not really sleeping. I was in that state for more than a decade, and it was only after methylation block treatments and loads of detox measures and allergen-avoidance measures that I managed to get out of that hole; now I exist on the edge of that precipice, and if I relax any of my strict allergen-avoidance measures for any length of time, I start to slip back down into the hole.

    I don't know how widely relevant that whole pattern is, but I have long suspected that this kind of process that I've observed is at least likely to be significant for a lot of people diagnosed with CFS.
  16. lahma

    lahma

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    Mark,

    I have noticed that when it comes to bedding and/or clothing, 100% cotton fabric against my skin causes much less burning and pain than fabrics containing polyester or other synthetic fiber. I use a process of elimination to find out which things give me more or less burning sensation or activation of that feeling.
    Hope this helps.
    Wish you well with your situation.

    LAHMA
  17. Sing

    Sing Senior Member

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    Diagnosed Today

    I just got diagnosed by a Neurologist with Small Fiber Neuropathy today via a punch biopsy and my clinical history. This punch biopsy is not available yet in a lot of places, I was told. I think I have had this for years, but didn't know what it was. I first noticed something was very wrong when I didn't realize I had cut my foot, but the dog pointed it out. Then I clumsily poured boiling water on my hand and it did not cause pain right away, or normally even afterwards.

    All the symptoms have gotten worse. It is not only pain and numbness, but also weakness, clumsiness, imbalance and hypotension while standing. Irregular heart rhythms and digestive problems can also be involved, as well as other organ systems. The small fibers at the ends of the legs (the feet) may be the first things one notices either burning or numb but a lot more nerves can become involved. There is a whole network of non-myelinated nerves in the skin and then other nerves connected with the Autonomic Nervous System and various organs which can become affected. The nerves are dying back from the ends.

    The treatment is hopefully directed towards both whatever can be found to be causing it (there are a lot of possibilities) as well as the pain itself. For that, I was told that Gabapentin, or Amitriptyline or Lyrica or Cymbalta are currently considered useful and safe. I have only tried Gabapentin personally, and it is helpful.

    I felt both relieved to have one cluster of symptoms confirmed with this test and diagnosis, as well as shocked and sad to know that my nerves are dying back. Afterwards I just went to a pet store and watched the fish swim around for a long time. The low light and bubbling water sounds were pleasing and soothing. These fish were living biological processes, with eyes which could see and respond to my standing there. Then I met a ferret, at very close quarters for the first time, seeing his claws, sharp teeth and rapid running frame. Encounters with young, vivid life.

    Sing
  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Sing, ask your doctor about a good Lipoic Acid for neuropathy. Some doctors may not understand it is good for neuropathy. A good doc will know the right dose for you.
  19. Sing

    Sing Senior Member

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    Okay. Thanks, Sally!
  20. Mark

    Mark Acting CEO

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    Hi Lahma,

    Long delay in replying to your post here - sorry!

    I've been on 100% cotton since over 10 years ago - it was a start, but only a start. I've had some good results with silk too since then, but only temporarily. A year or so of housebound nakedness made a big difference! And I agree with you: the process of elimination and careful observation of sensations is really the only way to manage things, ultimately.


    There was a fascinating presentation touching on these allodynia issues at the State of the Knowledge workshop, look out for that, by Theoharis C. Theoharides.

    PS: See also James Baraniuk's presentation on day 1.

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