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Numbness, tingling, electric shocks, paresthesia, allydonia, small fiber neuropathy

Discussion in 'General Discussion Subforum' started by Sunrise, Nov 23, 2020.

  1. Sunrise

    Sunrise New Member

    Hi all,

    I am a 29 year old male, otherwise very healthy.

    Around 2 years ago, I started to notice an electric shock down my arm (ulnar nerve) when performing an overhead press movement at the gym. I went to the doctor who recommended a physio who assisted me with this and it was resolved. The initial reaction was a typical hypochondriac reaction, once the issue was resolved I was all good. Then, I started to notice the shock sensation move to my radial and median nerves. Then my arms began going dead at night in my sleep. Then my legs starting buzzing. I read Dr John Sarno’s Mindbody Prescription and found these forums.

    My symptoms:

    • Numbness.
    • Tingling/pins & needles.
    • Vibrations. Feel like there is a phone vibrating in my pocket, but there is no phone..
    • Burning soles of feet - go from hot to cold and from over-sensitive to numb and back and forth.
    • Clothing sensitivity.
    • Stinging sensations.
    • Neuropathic itch - I get a spontaneous itch and then when I itch it, it produces electric-shock like sensations which radiate up the limb that I’m itching.
    • Positional numbness - if I cross my legs, sit on the floor or if I lean on something, within a minute I feel the numbness/tingling/pins and needles coming on. Even just crossing my arms, the pins and needles will begin shortly after.
    • Pallesthesia - Brushing my hand across certain fabrics will produce a vibrating in my hand for a few seconds following. Similarly, using a hair dryer, lawn mower, or something that vibrates will produce an effect that continues after ceasing use.
    • Electric shocks/zaps when I touch or scratch certain parts of my arm/foot. Or if it comes into contact with a rough surface.

    Other issues which I believe to be unrelated.
    • Tinnitus (likely headphone use)
    • Hypertonic (overactive) pelvic floor -> resulting in chronic prostatitis, testicular pain, etc.
    • IBS

    The last 2 I truly believe are a result of the stress response experienced from these nerve issues and pelvic floor therapy has more or less resolved them.

    Issues which MAY have contributed:
    • Was given Ciproflaxin for an infection of the prostate which I didn’t even have. It was my pelvic floor tightness.
    • Had my gallbladder removed due to polyp a few months before symptoms appeared.
    • Moved out of home, started a stressful job and cut off a toxic relationship.
    I have had MRIs of the spine and head, nerve conduction studies, blood tests and so forth. All clear. The doctor says I am a physical specimen. My resting heart rate is in the 40's - which is that of an athlete. I have zero fatigue, in fact, I have excess energy. I am able to jump off the couch at 11PM and run a half marathon, no problem whatsoever. Most of my symptoms disappear only whilst exercising.

    What screws with me most in the cyclical nature - one symptom replaces the other. At any given time, there is a handful of those symptoms I’ve listed above, then they will disappear and replaced with a random bunch. It’s never all at once. Just when I think one is gone and I can move on from the stress it's causing me, it is replaced by another. I understand Dr. Sarno covers this in his book. I experience no pain - yet.. and I pray to God it never progresses to that but if we’re being realistic, just like every other similar instance I’ve read about, it starts with sensory disturbances and progresses to pain.

    I don’t really know where to go from here. I am familiar with Dr. John Sarno’s book and I believe what he preaches - but I'm not so sure it applies to neurological issues. I believe the tension and stress about the nerves caused my hypertonic pelvic floor, which resolved after I realised it wasn’t prostate cancer or something worse. But, still, I am having a hard time accepting the fact that the nerve issue is anything other than classic small fiber neuropathy destroying the receptors at the end of my nerves, which is producing these sensations.

    I had big plans for life. I had a lot of ups and downs. I had a spontaneous pneumothorax which probably set off my health anxiety, then a few years later I got chronic Tinnitus. Shortly after resolving the Tinnitus, I had to get the gallbladder surgery. Finally! All of this behind me - time to look forward to life and health... And then of course came the onslaught of neurological symptoms.

    I have completed a masters degree, I have a career, my own home over my head but I would trade all of that in a heart beat and live on the street eating out of bins just to be able to sit down without numbness, tingling, electric zaps, burning feet, etc.. I have seen 5 or 6 psychologists, I have tried Prozac, Lexapro, CBD Oil, Smoking marijuana, Valiums, etc. I sit with my girlfriend at dinner and all I can think about is the uncomfortable feeling of my jeans touching my quadriceps, driving me absolutely insane. Neurologist told me it’s all in my head, we don’t have a skin biopsy test in Oz and to move on and “Call us if anything changes”. How can “My head” dictate the fact that if I cross my legs they go completely numb? I look at literally all my friends enjoying life with no fears or ailments and I am filled with depression as a result. My family is sick of hearing it and I have nothing to talk about with them but this scenario which has plagued me for 2 years.

    In Australia we do not have the means to test for small fiber neuropathy by the gold standard “skin biopsy” - we have a QST and QSART test which I am hoping to have done in December - thanks COVID lockdown. I have heard they are very unreliable. So, even when I do get them and if they come back OK, I'm not at all in the clear. Or if they don't come back OK, what can one really do for neuropathy? Just pain suppressants. I am not even experiencing pain yet and they're pushing Cymbalta, Lyrica, Gabapentin at me. Wtf?

    I guess my question here is, has anyone overcome this sensory neuropathy using the methods outlined by Dr. John Sarno? There is nothing but doom and gloom when it comes to SFN. At least with Tinnitus, there were tons of success stories of people adapting and moving on. SFN is literally all doom, gloom, suffering.

    If you made it this far - thanks for reading.
     
    Last edited: Nov 23, 2020
    jimmylaw9 and TG957 like this.
  2. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Sunrise,

    Welcome to the Forum. I never experienced your symptoms, but will address some things.

    You might look at this thread if you have not already.
    https://www.tmswiki.org/forum/threads/small-fiber-neuropathy.11221/page-3 (Small Fiber Neuropathy)

    Dorado, a member here had many experiences like you describe. He is doing quite well now.

    Yes, these principals do apply to "nerve issues." Many of the symptoms you describe are considered TMS equivalents.

    I've always had this with lawn mowers, so I guess I am not too alarmed.

    This is very TMS-ish! I would put this on your list of "what supports this as TMS."

    Another support, albeit perhaps not seeming helpful for you, for TMS. I get that you have symptoms, but when a physician tells a patient it is "all in their head" this is actually a good sign.

    I had a spontaneous pneumothorax which probably set off my health anxiety, then a few years later I got chronic Tinnitus. Shortly after resolving the Tinnitus, I had to get the gallbladder surgery. Finally! All of this behind me - time to look forward to life and health... And then of course came the onslaught of neurological symptoms.[/QUOTE]
    More evidence you may have a mind-body syndrome going on, as I suppose you know as you write this.

    More evidence that this is mind-body, and it is hard to know why, but it is "fishy" if the underlying cause was physical

    Good question. What you can do for neuropathy is work a TMS process. I was diagnosed with idiopathic neuropathy (my symptoms were pain), put on Gabapentin. G. was not needed --and neither was a scary diagnosis.

    You are obviously upset because life has given you these experiences, and you're understandably fearful and worried. Remember that fear is a greater distraction than the pain, according to Dr. Sarno. I am not sure of your mindfulness practices, but I would highly recommend daily practice to learn to witness your fears, and get less swept away by them. We tend to believe our fears, but this in fact tends to fuel symptoms.

    We have the free programs listed at the Wiki, and they cannot hurt you if you want to engage in them. Hopefully Dorado or others with more experience with these type symptoms will contribute. I am not quite sure how to "at Dorado."

    Andy
     
  3. Sunrise

    Sunrise New Member

    More evidence you may have a mind-body syndrome going on, as I suppose you know as you write this.


    More evidence that this is mind-body, and it is hard to know why, but it is "fishy" if the underlying cause was physical


    Good question. What you can do for neuropathy is work a TMS process. I was diagnosed with idiopathic neuropathy (my symptoms were pain), put on Gabapentin. G. was not needed --and neither was a scary diagnosis.


    You are obviously upset because life has given you these experiences, and you're understandably fearful and worried. Remember that fear is a greater distraction than the pain, according to Dr. Sarno. I am not sure of your mindfulness practices, but I would highly recommend daily practice to learn to witness your fears, and get less swept away by them. We tend to believe our fears, but this in fact tends to fuel symptoms.

    We have the free programs listed at the Wiki, and they cannot hurt you if you want to engage in them. Hopefully Dorado or others with more experience with these type symptoms will contribute. I am not quite sure how to "at Dorado."

    Andy[/QUOTE]

    Thank you, Andy. Your words are encouraging and helpful. I feel like I have wasted my 20's worrying about my health. The neurologist gave me a diagnosis of "functional neurological symptoms" to get me out of there. If I ever emerge out of this battle victorious, I will spend the rest of my days trying to help others.
     
  4. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Sunrise,

    Glad you find my words helpful.

    I also meant to mention Claire Weekes' work, which you can find at the Wiki and online. Many have found her work helpful in dealing with "strange sensations."

    Andy
     
    Jeather and tgirl like this.
  5. Sunrise

    Sunrise New Member

    Thank you, Andy. I am familiar with Claire Weekes. I plan on studying her work when I'm given an opportunity - going through a transition to a new job while trying to keep things together mentally during this as my feet feel like they're on fire! Anyway - I am not looking for compassion, everyone is dealing with their own battles. I hope someone out their reads and can relate and we can connect, perhaps discuss some strategies and experiences.
     
  6. Vladan

    Vladan Peer Supporter

    Z

    The less you care,better you get.
    Quit everything,move on.
    Do not waste a minute of your life on that,been there,had all of that,once i focused on something more important in my life it slowly faded.
     
    MWsunin12 and Drew like this.
  7. TG957

    TG957 Beloved Grand Eagle

    Your symptoms match the definition of CRPS - Complex Regional Pain Syndrome. I recovered from it, and so did several other people on this forum, strictly by the mindbody technique, without pills or surgeries. You can and should succeed, too. Feel free to ask questions and best of luck to you!
     
    Last edited: Nov 30, 2020
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  8. Sunrise

    Sunrise New Member

    Hi all, have been following the structured education program. So far so good. Symptoms still present, moving around, but my reaction is certainly much better. I will keep this thread updated. Cheers for the support!
     
  9. Sunrise

    Sunrise New Member

    Just checking in again to say my symptoms have reduced significantly, however, it's happened before so I'm trying not to react to it or get attached to the feeling and continuing with the structured education program.
     
    tgirl and TG957 like this.
  10. Idearealist

    Idearealist Peer Supporter

    It's ironic, but I feel like MDs intensify their patients' commitment to believing there is something physically wrong with them when they cavalierly dismiss their symptoms. I really hope the paradigm shifts in coming years with the expanding knowledge of how powerfully the brain can impact the body
     
  11. Sunrise

    Sunrise New Member

    Just checking in to say my symptoms have returned with vengeance, alongside some symptoms I thought I had truly overcome - testicular pain, pelvic tension - autonomic nervous system disfynction from the neuropathy? Or just good old TMS? I find myself avoiding situations where I may find some confirmation that my sensations are neuropathy and not TMS. I read that with Small Fiber Neuropathy, your fingers stop wrinkling up when under hot water for a certain time as the nerve endings are dead. I noticed mine don't really do that anymore, but I am too scared to fully confirm.. Now I avoid swimming, saunas, etc.
     
  12. tgirl

    tgirl Well known member

    Try to reach out to Dorado on this site, as she has dealt with some of this and recovered. It sounds to me like you are over anxious about all of this. Remember, you were told these symptoms are in your head by doctors. Don’t discount this.
     
  13. Emhaynes12

    Emhaynes12 Newcomer

    Hi-
    I read your whole post and I’ve experienced a lot of similar sensations. All of mine are neurological burning in nature. Once I get over the burning skin in my arms, it goes to back, then leaves back and goes to legs etc. I can relate in what you wrote and as scary as it seems, I do think this TMS stuff is the answer
     
    tgirl likes this.
  14. TG957

    TG957 Beloved Grand Eagle

    I had neuropathy and healed. You have to get used to setbacks. They are inevitable, and panic makes them worse. Tgirl is right, your anxiety only feeds your pain. Fear is your main enemy, learn to recognize it when you are fearful. We all have fear and anxiety, there is nothing wrong with the emotions themselves, but allow them to absorb you is wrong. Meditation is what helps us stabilize our nervous system so we sustain bouts anxiety and fear.
     
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  15. Sunrise

    Sunrise New Member

    Thank you everyone for your responses. I have been here before. I am handling it much better than previously. I am just checking in, so that one day if I overcome this chapter of my life, someone going through something similar can view the ups and downs in my journey, documented on this forum. If I ever heal from this, I will spend my time assisting others.

    If anyone is reading this and experiencing similar - feel free to reach out to me. At least we're not alone fighting these battles ;)
     
    Sam007 likes this.
  16. Cincinnati_S

    Cincinnati_S New Member

    I am 8 months into burning/numbness/tingling. Started during HIGH ANXIETY times in my arms and has sense "spread" to basically my entire body. I feel better when exercising, eating, meditating, showering. While things feel cold I don't have sensitivity to temp changes. Pain comes and goes in ears, face, back, legs. Mostly constant in arms. Sometimes pants/shirts irritate my skin other times not at all.

    I'm on my TMS healing journey - started a stopped a few times. Would be great to create a subforum for "neuropathy" type symptoms.

    My belief is this is TMS as it started during my anxiety stuff and my CNS has been in a relative state of shock since then. Not only is my CNS creating the pain it has also driven my small nerve fibers to be on heighted alert - causing the irritation/pain. Glad to setup a subforum and or talk directly.
     
  17. Sunrise

    Sunrise New Member

    Have you had a nerve conduction study, skin biopsy, QST, QSART to rule out legitimate neuropathy (not TMS) from dying fibers? Unfortunately the biopsy is unavailable in Australia and is the gold standard in identifying SFN. How old are you?
     
  18. Cincinnati_S

    Cincinnati_S New Member

    My QSART was normal and my biopsy showed mild distal SFN (5th percentile in all three biopsy locations) but my neurologist that performed the testing (Cleveland Clinic) does not believe my symptoms are from SFN. He believes this is Central Sensitization which is also considered a TMS equivalent. I'm 47 in otherwise great health.

    This past summer I was able to reduce my symptoms by ~50% BEFORE getting my SFN results (using TMS approach). My diagnosis set me back but the more I observe my pain the more it seems like its TMS - moves around some, goes away during cranio sacral therapy, shower, sleep, meditation, even talking about my symptoms with a therapists decreases the pain.
     
  19. Sunrise

    Sunrise New Member

    I would suggest getting a second or third opinion. If you're in the 5th percentile then that shows structural degradation of your nerve fibers, no? Personally, if I could have some sort of confirmation of neuropathy I'd be going the Pirenzepine route to try regrow the fibers, then ARA 290, etc. There are some unconventional treatments for neuropathy, but if it's TMS it'll do nothing for you.

    The only real test is the skin biopsy, but even then, they need to test you once, then test you again a year later and compare the density of the nerve fibers and again a year later.

    I've done so much research on this, studied articles and have been on every FB Group/reddit/forum available, and every sufferer says their symptoms change daily - one neurologist claimed "The only thing predictable about neuropathy is that it is unpredictable". I've been to Neurologists where I legitimately knew more on the subject than them. Sucks I can't get the test in Australia and Corona makes it impossible to fly to Europe. I would hate to pursue this TMS route for years and years just to find out it's useless for the structural damage.
     
    Last edited: Jan 5, 2021
  20. miffybunny

    miffybunny Beloved Grand Eagle


    You definitely have TMS. Neurological tests and biopsies are useless because you can get positive results. Central Sensitization is just another trendy label for "we don't know"...it's nonsense so don't get hung up on it. I had CRPS which is the mother of all neurological chronic pain syndromes and I'm here to tell you that everything you describe is TMS. Stop searching and looking for reasons to disprove it. Get off the medical merry go round. Neurologists will NEVER help you with this, I can guarantee you that. I strongly suggest you email Dr. Howard Schubiner and he can confirm what I'm saying. Also check out his lecture on YT that is posted here and my success story.
     
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