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Small Fiber Neuropathy

Discussion in 'Support Subforum' started by winterhaven123, Jan 8, 2016.

  1. Boston Redsox

    Boston Redsox Well Known Member

    I am so sorry that u are going threw this but u are in the right place and it's not going to be easy....

    Was my divorce, I know I will be starting my way up the hill and I will slowly climb out of my anxiety/depression and will start dropping my anti. I stop all pain meds 2 months ago and I am slowly doing the work
  2. winterhaven123

    winterhaven123 Peer Supporter

    If you dropped all your pain meds you are making great progress You are on your way. Good Luck & be sure to let Me know how you make out.
  3. Boston Redsox

    Boston Redsox Well Known Member

    I will ....I have dropped them before but relapse back because of FEAR...i know this time i am stronger and have a better understanding of FEAR.

    Again this is a journey and we all may have a different path but we all end up at the same address!
  4. mike2014

    mike2014 Beloved Grand Eagle

    I like this line, FEAR is False Evidence Appearing Real.
    TheUndyingMind likes this.
  5. Boston Redsox

    Boston Redsox Well Known Member

  6. 0208mad

    0208mad Peer Supporter

    Hi I have seen 6 neurologists and cannot get a diagnosis. I have all the symptoms of Small Fibre Neuropathy the non length dependent. Mine started in the back 3 years ago.Now it's all over me. I have had two skin biopsys all clear MRI scans all clear. Numerous blood tests all clear.
    Just wondered where you are with it now and how you are doing ?
  7. 0208mad

    0208mad Peer Supporter

    do you have it widespread[/QUOTE]

    Hi just wondered how you are doing. I too have all the symptoms of Small Fibre Neuropathy but cannot get a diagnoses. I've had two skin biopsys that are clear MRI which is clear. Blood tests clear. Mine also goes away when I lay down. Sounds familiar to you.
  8. wannarun

    wannarun Peer Supporter

    I haven't written in this post for a long time, but I wanted to give an update for those who are in pain and struggling. Around June of 2015, I had started to possibly accept TMS. I still had my doubts and did one last round through the medical system. You know just to be sure. The last thing I was going to do was physical therapy. I figured at least it would help me get moving again. I also but the Sarno audio CD on my iPhone and listened to it exclusively everywhere I went (mostly in the car). I think I heard the words 30 to 50 times. I slowly started to believe. He kept making reference to vigorous physical exercise. I did an exercise class that was similar to CrossFit and it seemed to help as I was starting to lose the fear of moving my body again. I then took the full plunge and signed up for a Crossfit membership. I was still so afraid of "hurting" my back or making the pain come back worse. They worked with me very slowly and the fear started to dissipate. As my fear of moving went away and as I focused on what I could do as opposed to the fear, the sensations started to subside. Particularly, with my lower legs and feet. I was so afraid to run, but in the classes we started slow and built up. I was surrounded by so many supportive people I didn't have a chance to let the fear settle in. I can totally run again. In 2016 I did a marathon relay with friends. No more SFN type symptoms in my feet. My back is a slightly different story. I have found it harder to let go of the thoughts that surround it. I know it is what I need to do, but as you know this beast can be tricky to tame. I can deadlift over 300# with no additional change in sensation or pain. I just continue to have this slight sensation in the lower right part of my glute. I know it is TMS. I still think about it too much or watch it, but I am able to live my life again. 2015 was rough. I didn't want to kill myself, but I didn't want to continue living with the pain. My wife was up to her eyeballs with me. She had been watching me turn into a shut in and just couldn't handle it anymore. We had to go to counseling and it also helped me get better. Today, I'm active. I still have some sensation in my lower right glute, but I travel in planes, sit at tables, go out with friends, win Crossfit competitions and love life. We are not meant to live in pain. We have to find that thing we are hiding from and change our life. Then we have to ignore the pain because it is a liar. It isn't real. Live your life aggressively and know that you can move just fine. You won't make it worse. It may get worse at first, but it is the TMS trying to grab you. Let it. Ride it like a wild dragon. Keep moving forward. You will win.
    tgirl and TheUndyingMind like this.
  9. TheUndyingMind

    TheUndyingMind Peer Supporter

    Wannarun - congratulations on your progress! Your story inspires me that I too will soon be able to return to the gym. It was always a great place for me to get away from things and de-stress but apparently I wasn't always focused on the right things that I should have been coping with emotionally and then TMS entered the stage.

    My mind became conditioned to believe that physical activity was perpetuating my symptoms when in fact all it was doing is increasing my awareness they were there. I always thought it was odd that I could workout just fine, but the symptoms would get aggravated later... There was nothing preventing me from doing the activities just my mind playing tricks on me.
  10. stradivarius

    stradivarius Peer Supporter

    Jut re-edited this post as I realise it did not sound too pro-TMS!
    Great to read this thread as I have the burning and tightness all over my body too. Waiting for the MRI results, but the neurologist thought I just had central nervous system sensitisation .

    Wannarun - congratulations on your success!

    Winterhaven, there is always hope. This article describes how pain levels can be reduced in neuropathy, including diabetic neuropathy, using visualisation.

    http://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (Nocookies)

    Also, the foundation for peripheral neuropathy say that nerve conduction can be improved in neuropathy with tai chi. I know these are not TMS methods but it does go to show there is always hope no matter what. I personally think I have TMS as I think anything to do with over sensitisation of the CNS has to be TMS. I wish you all the best of luck.
    Last edited: Aug 11, 2017
  11. TheUndyingMind

    TheUndyingMind Peer Supporter

    Winterhaven - neuropathy can be overcome. I have it in my calves and I've made it far enough in TMS recovery that there are times where it completely disappears. It still comes from time to time but the fact that I now have proof that it goes completely away means that it's entirely defeatable.
  12. stradivarius

    stradivarius Peer Supporter

    Thanks TheUndyingMind for your affirmation. That gives me hope.
  13. bman

    bman Peer Supporter

    Hi just wondered how you are doing. I too have all the symptoms of Small Fibre Neuropathy but cannot get a diagnoses. I've had two skin biopsys that are clear MRI which is clear. Blood tests clear. Mine also goes away when I lay down. Sounds familiar to you.[/QUOTE]
    I was diagnosed with neuropathy 15 years ago - they said it was small fiber. After about a year it mostly went away except when I walked/hiked for about 2.5 hours. Three years later I developed RSD in big toe which lasted for about five months.

    Seven months ago I developed sciatica and neck pain due to "pinched nerves" in back and neck which "triggered" my neuropathy symptoms after a month. I have burning, numbness and pains in my toes and forefoot primarily when I am on my feet. I had EMG and biopsies - my neurologist said that it wasn't SFN but he was not sure why I had it - EMG showed slow nerve function, biopsies were negative. He thinks its hereditary but I really don't care. I have known about TMS since 2008 and believe that it is the cause of many of my other symptoms - backaches, tingling in hands and legs, neck pain, chest pain - because all come and go. The neuropathy is hardest of all - I can't tolerate any of the meds so I have to rely on TMS tools for relief. I have been actively working on TMS for about a month. I keep a daily log of my pain, as well as emotional issues that come up. I have been getting in better touch with my emotions - I cry more and get angry.

    Today I finally got the results of MRIs on my back and neck for my other symptoms and it showed bulging discs and some stenosis - yet most of the symptoms connected with the "pinched nerves" in my back and neck have eased considerably - I am reconciling it in my mind because deep down I know its TMS. For the past week I have been trying to highlight the times of the day with little or no pain in my log and trying to think about them. I realized that I have more time without neuropathy pain (although the numbness hasn't gone away) then with pain. Today was not a good day, but I still believe it has to be TMS because it went away in the past and because it comes and goes.

    The biggest problem with neuropathy is that unless it is caused by drugs, lyme disease or some other treatable cause (there are 100 types of neuropathy with many different causes) conventional medicine really can't help you. Therefore, your only real alternative is to accept that it is TMS. Remember, all pain originates in the brain therefore, we need to work to change the neural pathways to change the perception of pain. Even with my neuroapthy I still walk about 2-3 miles a day and try to engage in as much activity as I can. It has been a struggle for the last 6 months but I cannot accept a lifetime of pain. I am very encouraged by Wannarun. Remember I beat it 15 years ago - we both can do it again!
  14. TheUndyingMind

    TheUndyingMind Peer Supporter

    Bman - I sense you have unacknowledged doubt when you say...

    "but I cannot accept a lifetime of pain"

    You're subconsciously worried you will be dealing with this your whole life. Try your best not to think ahead. Imagine yourself having a "good day" each and every morning. Through repetition and belief your mind will follow; eventually change will take hold. Try your best not to measure your progress as that will bring the mind's focus back to it.
  15. bman

    bman Peer Supporter

    While I didn't say a lifetime of pain - you are very perceptive. I definitely have doubts and I acknowledge them - they are clearly an obstacle to recovery. I have been able to see improvement in all my other symptoms but the neuropathy has been difficult. Almost all of my times without pain are when I am off of my feet. It is very rare that I don't have pain when on my feet. Alan Gordon says to see the pain as just "sensations" which I can do to a certain extent. With most of my other symptoms I can take a tylenol and get some symptomatic relief which helps me to work on the TMS, but I haven't found symptomatic relief for the neuropathy other than getting off of my feet. Most of us have highly analytical minds and we probably do too much research. Because I've had neuropathy for 15 years I have had too much time to look at conventional medicine's approach which is very negative and offers little or no hope if you don't have a treatable cause. These messages bounce around in my brain and encourage my unconscious mind to continue the pain. As a result it makes the process harder. You are absolutely right, I need to take it day by day and accept that some days may be worse (or better) than others. Thanks for your thoughts.
  16. TheUndyingMind

    TheUndyingMind Peer Supporter

    Bman - I know exactly what you mean about being analytical and doing research. I can't tell you how many spine/back related articles I used to have bookmarked or physical therapists I was following on YouTube. The keyword there was "used" to. I deleted everything - all the hours of research. I highly suggest doing the same if you haven't already. Purge it from your mind completely. Keep up the work, you can conquer this!
  17. stradivarius

    stradivarius Peer Supporter

    Eureka! I was just reading Healing Back Pain again and I found this on page 118:

    "Mononeuritis Multiplex is another descriptive diagnosis for the cause is frequently unknown. It refers to nerve symptoms that appear to affect many nerves in a random pattern. It can occur with diabetes, but many people who have it are not diabetic. In my view it is often an example of TMS neuralgia"
    Boston Redsox and TheUndyingMind like this.
  18. Dorado

    Dorado Beloved Grand Eagle

    0208mad, given that you said your symptoms occur throughout your body, I assume you experience pain in your hands and feet. If that's true, then I have a couple of questions that may be of assistance in further convincing you that you are indeed free of neuropathy:

    1) Do your hands and feet sweat? If yes, then you definitely don't have small fiber neuropathy. I thought I had all the symptoms of small fiber neuropathy as well, until I went to some of the top hospitals in the world, and they all said distal sweating is reduced in genuine cases of small fiber neuropathy that affect the hands and feet, as the small nerve fibers responsible for autonomic functions such as sweating are damaged. For patients with small fiber neuropathy, excessive compensational sweating may occur in proximal limbs (not distal limbs) to make up for the lack of distal sweating. For example, an individual with small fiber neuropathy in their hands and feet may begin experiencing excessive sweating in their rear as their body attempts to regulate its temperature. I passed multiple QSART sweat tests, and my hands and feet began sweating more than ever when my symptoms began (this was one of the symptoms I complained about the most!), so we know my small nerve fibers are not damaged. Excessive distal sweating is often a sign of emotional stress.*

    2) Do your fingertips "wrinkle" in warm water or while swimming? If yes, then you most likely don't have small fiber neuropathy. Fingertip wrinkling is controlled by the sympathetic nervous system, which is compromised of small nerve fibers. When an individual's hands have sustained true nerve damage, the affected fingertips will not be able to wrinkle, as damaged small nerve fibers become incapable of carrying out this function. My hands began wrinkling almost immediately upon contact with water when I started experiencing symptoms (it used to take much longer for them to wrinkle), so we know my small nerve fibers are simply overactive (typically a sign of stress), not permanently damaged or even in danger of being damaged.**

    The autonomic nervous system, which includes the sympathetic nervous system, is extremely susceptible to emotional stress, and you might be experiencing sympathetically-mediated pain that will go away once you fully believe you can be healed. Trust me, I've seen some of the best doctors in the world, and they all told me this. I was so convinced I had neuropathy and was in so much pain, I didn't even think I needed to see any neurologists for confirmation purposes (and I didn't know how to live anymore)... but I ended up not even having it. I hope this helps you find peace of mind, too. Below are some techniques that are helping me, as well as other people with extremely similar symptoms and stories; if you're still doubting your neuropathy-free status, keep in mind that individuals with full-blown and critically severe neuropathic pain that is structural have used these practices to lessen and/or completely end their pain by retraining their brains. Ultimately, this means a large number of people - regardless of whether they have TMS or not - can significantly benefit and decrease their pain:

    1) Biofeedback - http://www.christopherfisherphd.com/psychological-services/biofeedback/ (Biofeedback) (Biofeedback)
    2) Neuro-rehabilitation - http://wheelchairtorollerblades.com/ (Wheelchair to Rollerblades - My Story through Limbic System Neural Rehabilitation) (Wheelchair to Rollerblades - My Story through Neuro-Rehabilitation)
    3) Neuroplasticity - http://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (Nocookies) (Nocookies)

    *SOURCE: https://image.slidesharecdn.com/pai...nosis-and-management-31-638.jpg?cb=1503854606 (conclusion = small fiber neuropathy diagnosis is made when sweat output is lower than normal)
    **SOURCE: https://the-sieve.com/2012/04/14/the-story-told-by-fingers-that-dont-wrinkle/ (The Story Told By Fingers That Don’t Wrinkle) (The Story Told By Fingers That Don’t Wrinkle) (conclusion = small fiber neuropathy diagnosis may be made when fingertips are unable to wrinkle)
    Last edited by a moderator: Jan 30, 2019
  19. stradivarius

    stradivarius Peer Supporter

    Dorado, that's brilliant that you got the all clear and are in a more hopeful place. Thank you for posting these links, that is really interesting about the sweating/ wrinkling. I am sure that will help a lot of people. I am going to try putting my hands in water and see what happens.
    I would be really interested to know what your symptoms are, if you don't mind sharing? I mostly have burning/ extremely tight muscles that get tighter after use, sometimes a bit of numbness/tingling and I'm wondering if anyone else has the same thing, particularly the tight muscles.
    Last edited by a moderator: Jan 30, 2019
  20. Dorado

    Dorado Beloved Grand Eagle

    I do have Ehlers-Danlos; I've read that over 83% of us have autonomic nervous system dysfunction. In the medical field, it's referred to as a "genetic trifecta." I believe that because I'm genetically predisposed to autonomic dysfunction, a period of extreme emotional stress in my life led to my body getting stuck in one of the nastiest fight-or-flight modes ever seen (also referred to as sympathetic nervous system overdrive).

    I've experienced:
    - Burning skin
    - Nerve pain (allodynia) - so severe that I could barely hold my phone, type on a keyboard, grip a doorknob, etc.
    - Altered sense of touch in my fingers and toes - not true numbness, but similar in the sense that the senstation touching an object feels different than before
    - Tingling (hands, arms, feet, legs, head, lips, etc.)
    - Extremely heavy and stiff limbs due to blood pooling and tension
    - Excessive sweating, especially - but definitely not limited to - my hands, feet, and armpits
    - Increased skin impressions/dents whenever any object (even light wrapping paper) gently touched my skin - skin impressions/dents are absolutely normal to a certain extent, but it was occurring much deeper and faster than ever before. Additionally, the skin impressions were sometimes very painful, such as when I'd sit on hard benches, rest my chin on my hand, grip pencils, cross my legs, etc.
    - Fingertips that wrinkled almost immediately in the shower, as well as upon gripping objects (even when they were not even slightly wet or cold)
    - Headaches
    - Dizziness
    - Nausea and vomiting
    - Dry eyes and mouth
    - Blurry vision
    - Red feet with bulging veins when walking
    - Occasional blood pooling and overly dilated blood vessels in hands when walking
    - Chronic fatigue/exhaustion
    - Increased need to use the bathroom
    - Increased heart rate, especially upon standing - this was picked up on a tilt table test, but was not considered severe enough to diagnose postural orthostatic tachycardia syndrome (POTS) that particular day. My heart rate does occasionally increase by 30+ BPM upon standing thanks to my Ehlers-Danlos, but this started occurring daily and on a much more severe level than ever before
    - Increased Raynaud's-like symptoms and vasospasms where standing for even a few seconds would result in deeply yellow and purple feet from vasoconstriction, and my digits would become numb and red in the cold. Again, I experienced this to a much lesser extent as a child from Ehlers-Danlos, but I would say it increased by 85% and became seriously painful
    - Mottled hands when walking, known as livedo reticularis. This is also common in Ehlers-Danlos, but later became increased for me
    - Cold hands and feet - again, I had this as a child from Ehlers-Danlos, but it was worsened by over 50%
    - Multiple chemical sensitivity - I had to stay away from alcohol, vaping and smoking anything, drinking sugary coffee with high amounts of caffeine, etc., and it was important for me to make peace with that
    - Muscle spasms/twitching
    - Facial flushing
    - Dermatographia - commonly associated with allergies, but can also be from an overactive autonomic nervous system

    ... and so many more I can't even remember at this point. My list of symptoms was ridiculously long - one hospital listed 30+ in my patient profile.

    Note that some of these symptoms (e.g., excessive sweating, fatigue, facial flushing, vomiting, blurry vision, dry eyes and mouth, increased heart rate and POTS-like symptoms, vasospasms, fingertip wrinkling, etc.) may not sound neuropathic to someone unfamiliar with autonomic neuropathy, which occurs due to damage of the small nerve fibers that control and/or influence these types of autonomic bodily functions. I don't have CRPS/RSD, but many of these symptoms closely mirror it given the role of the sympathetic nervous system.

    I've also had to deal with some pretty intense nocebo situations. I saw a handful of neurologists, all of whom said there was no way I had nerve damage (although one did put down "toxic neuropathy" in my online patient profile, as I had begun to complain of neuropathic symptoms after a weekend of heavy drinking and a week and a half of vaping propylene gylcol- and vegetable glycerin-based vape oil; that particular neurologist never asked me about my individual stressors, and none of us knew I had Ehlers-Danlos yet. What he actually meant to indicate in the patient portal was that I had nerve pain after ingesting toxins, but he didn't truly believe I had nerve damage. That said, it still terrified me, and I didn't understand his intention at the time). One of the best neurologists in the country, who performs extensive research across the globe and has decades of experience, said I simply had an overactive sympathetic nervous system from emotional trauma and referred me to a pain psychologist who was supposed to teach me biofeedback to calm my nerves. The neurologist had written a study on sympathetic overdrive with the pain psychologist and thought very highly of him.

    However, the pain psychologist messed with my head by saying, "Why do these doctors not believe that something is really wrong here? You've indicated having a sensitive nervous system since your childhood. You know, half of what doctors learn in medical school is later proven to be incorrect - medical students are often told they are the ones who are going to make a big breakthrough in medicine or prove the information in their textbooks wrong. What I think is that you've always had poor circulation, and when you drank heavily that one weekend, the poor circulation and alcohol destroyed your nerves." (EVERY single physician I've ever repeated that last sentence to says it's basically IMPOSSIBLE for that to randomly happen to a young person who used to be able to tolerate alcohol and has no vitamin deficiencies or extensive history of alcoholism. Also, if my circulation had truly been that poor, the alcohol wouldn't even have made its way to the nerves throughout my body. Not to mention the fact that symptoms like excessive distal sweating that disprove neuropathy, and the way my symptoms immediately occurred throughout my body was not characteristic of alcoholic neuropathy. Yup, the pain psychologist truly is an idiot.) I was having trouble believing I didn't have crippling neuropathy because the other neurologists didn't even want to perform certain "gold standard" tests on me (e.g., skin biopsy, etc.) - they just said there was no way I had neuropathy.

    Well, my doctors performed the "gold standard" small fiber neuropathy tests (I had already passed some EMGs, but those really only look at large nerve fibers)... and everything was negative, just as they had predicted. My other neurologist was not happy when I told him about the pain psychologist. It was such a mess of a situation, but that's why I'm happy I didn't give up on life. Hang in there!

    Also, to confirm, I've had the following large and small fiber neuropathy testing (includes testing for autonomic neuropathy): multiple skin biopsies, multiple QSART sweat tests, multiple EMGs, multiple neurological exams checking my sensory abilities, a tilt table test, extensive blood panels to check for toxins as well as autoimmune diseases that frequently cause nerve damage, etc. I've also had a brain MRI and a Doppler vascular study to rule out some other problems. All negative!
    Last edited by a moderator: Jan 30, 2019

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