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Peripheral neuropathy with Pain

Discussion in 'Success Stories Subforum' started by zeeman01, Jul 11, 2018.

  1. zeeman01

    zeeman01 Peer Supporter

    I just wanted to post this in hopes it helps someone else. Back in 2009 I experienced many neurological and pain issues for over a years time without any help from doctors. This came on after a few years of prolonged stress with my wife and i going through terribly infertility issues so I new the source but did not know how to fix it. I was diagnosed with non specific peripheral neuropathy and was convinced I had a terrible neurological disease of some kind. Here are the symptoms I experienced.

    Symptoms List
    -Perceived weakness in limbs
    -Cramping in all limbs
    -Intense tingling and burning all over (mostly feet, legs and bum) non stop
    -could not run very long, can only walk/stand for 15-20 mins
    -pain all over (feels like a deep bone or arthritic pain)
    -loose bowel movements
    -bladder urgency at night
    -muscle twitches all over
    -exercise seems to make things worse

    I had been reading many health message boards and was convinced I had MS. I had 3 MRI's, been to pain specialist and 3 different neurologist/rhumotolgist ect... I started working with a natural path who found out that my B12 was on the low side of normal and we did methly b12 injections for 5 days which helped a little but still did not resolve the problem.

    I was able to finally recover over the period of about 6 months afer suffering for over a year with this. Here is what worked for me.

    1) Having all test done that I wanted to help me feel better about not having a nerological disease
    2) Staying off health message boards and stopped searching dr google
    3) The big AH-HAH moment happened when i had to stand for a church ceremony. I told the priest that I needed a chair as i could not stand for long but he forgot to provide one. This forced me to stand 40 minutes. After that time I felt a bit worse than normal but not too much worse. I started to think maybe this is something I can deal with and recover from even though the pain and tingling was still fully there
    4) Finding the website neurosymptoms.org. This website is dedicated to a list of functional neurological issues. There are many people suffering with simlar issues. I started following the greated exercise program seen here. http://www.neurosymptoms.org/physio-exercise/4533198131 (Physio / Exercise - neurosymptoms.org)

    All off this drove me to stop worrying about my health and symptoms and really start trying to live my life again by going on walks, playing golf with a cart and just trying to do more and more things that I enjoyed even though I was in a lot of pain.

    After months of this mindset the pain and tingling slowly started to decrease but it took many many months. I still get occasional leg pains, cramping and tingling in my body but I don't focus on it anymore and it usually goes away pretty quickly. I know all of this sounds too simple but it worked for me and it can work for you too!

    See image about recovery below that I also found useful
  2. Gigi

    Gigi Well known member

    Love the graph, Zeeman! I think we've all encountered that low spot, not being able to see that we were truly on the road to recovery.
    I'm delighted that you found your way to recovery. It is such a blessing! There are days that I still marvel that I’m pain free. I will never take it for granted.
    Thanks for taking the time to share your success.
    JanAtheCPA likes this.
  3. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I like this statement from the web site, which certainly applies to anyone who needs to recover from a very debilitated starting point:

    The principles of rehabilitation in this situation are to recognise that you probably are doing a bit too much on the good days and not enough on the bad days.
    Bodhigirl likes this.
  4. Dorado

    Dorado Beloved Grand Eagle

    Wonderful story; thank you for sharing! I've recovered from extreme nerve pain myself and know it's not always easy to believe that something so severe can be caused (or worsened) by emotions.

    I no longer visit the NeuroTalk forums, but I remember seeing so many individuals who were diagnosed with neuropathy despite negative biopsies, sweat tests, etc. One poster in particular spent a great deal of time trying to convince their doctors of nerve damage only to pass every single test. Finally, after many years, they finally "failed" an EMG test where the results were slightly off. The test didn't indicate severe or even moderate damage. It's pretty normal for an EMG results to change as one gets older. Unfortunately, this person took this test as a major win and testament to their pain.

    Nah, buddy, your symptoms are being caused by emotions. If only they had access to what we know, right?

    Cheers to a great and pain-free life!
    Laleah Shoo Shoo and JanAtheCPA like this.
  5. Marinedad

    Marinedad Well known member

    I suffer the same issues it’s been 8 years for me with no resolution at all...done all the tests
  6. zeeman01

    zeeman01 Peer Supporter

    Sorry to hear that you are going through this. The fact that u are here is good. A few other things I did was take 1000mg metyl b12 ever day and I did 30 second cold shower bursts on my feet to help with circulation but acceptance and no longer fearing being sick helped the most... best of luck
    Last edited by a moderator: Jul 28, 2018
  7. tgirl

    tgirl Well known member

    I went on the neuropsymptoms.org site and thought it was informative. My only concern is that it says the pain is usually found on one side of the body and my nerve ending pain is on both legs. It moves around but is on both legs. Have had a lot of medical testing that has come back normal.
  8. Marinedad

    Marinedad Well known member

    I also suffer mainly on my legs and feet but can get it everywhere ...Steve O says this is the anger that is trapped in our body
    Drew, tgirl and JanAtheCPA like this.
  9. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    tgirl, you said two things that pretty clearly indicate that this is TMS. Which means that you need to stay off of sites like neurosymptoms.org! And pay attention to what @Marinedad said!
    Dorado, tgirl and Marinedad like this.
  10. Dorado

    Dorado Beloved Grand Eagle

    Agreed 100%. Neuropathy symptoms can absolutely be TMS - trust me, I've been there.

    If the medical testing is normal, please trust it. I spent way too much precious time convinced my life was over from debilitating alcoholic neuropathy. At the time, success stories involving as many nerve symptoms as mine were very difficult to find. Nowadays, plenty of people like me are coming forward with our experiences. Please listen to them. You are not alone.
    JanAtheCPA and tgirl like this.
  11. Marinedad

    Marinedad Well known member

    Yes agreed ... they are very aggravating to say the least but once you are cleared from all organic possibilities TMS remains
  12. tgirl

    tgirl Well known member

    Thanks Caulfield. I read through a few of your posts and can see you’ve been through it. Awful! Thanks for commenting JanAtheCPA and Marinedad.
  13. Dorado

    Dorado Beloved Grand Eagle

    Yup, and we have to understand that even people with true neuropathy (which I do not think anyone here has!) are impacted by the mind-body connection/TMS - heavy emotions affect the nervous system and make nerve damage symptoms much worse. I saw people on neuropathy forums with documented small and/or large fiber nerve damage discuss how they have more difficulty walking, driving, standing, etc. when they were stressed out. So even some of the horror stories we've all read are from people dealing with their own problems.

    Actual nerve damage is a condition that's been successfully targeted by techniques that train the brain to stop registering constant pain signals, as noted here: https://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (Nocookies)

    What does this mean? It means that we have the ability to impact structural issues like true nerve damage much more than many realize. This comforted me when I was still going through my healing journey - I remember saying to myself, "My tests are all normal and the doctors agree that it's mind-body, but I still have doubts about my future sometimes. In those moments, I have to remember that patients with actual nerve damage can improve their pain situations, so why can't I when I don't even have nerve damage?" This made me fear neuropathy a little less, and fear is a big part of the mind-body pain cycle.

    It's sad because I genuinely thought my life was over in much of 2017. I couldn't even hold my cell phone or feel bed sheets touch my ankles without crippling pain. Petting my cat was an absolute nightmare! Not to mention all the weird autonomic symptoms like Raynaud's, bizarre sweating patterns, etc. However, in 2018 I've been traveling, hitting up exotic beaches and (responsibly!) drinking pina coladas, making new friends, going out on dates, getting compliments at work, etc. I went to a party last night and felt like a completely normal person. There is life after these symptoms! They will go away once you beat the loop of fear and obsession, balance your emotions, and get back to fully living life again.
    Last edited: Dec 16, 2018
  14. Marinedad

    Marinedad Well known member

    I keep telling myself I still have anger in my body and it’s slowly being processed one day at a time and I don’t care why or what caused all I know it’s triggering my body to feel pain.
    I started to use guided imagery and body scan to picture a healthy body and blood flow to all parts of my body
    JanAtheCPA likes this.
  15. Marinedad

    Marinedad Well known member

    It’s been over 8 yrs I been suffering this after major trauma of a divorce sick child , father died of a bad illness a failed business of 25 yrs the list goes on it just took me a long time to stop being a victim
  16. zeeman01

    zeeman01 Peer Supporter

    just wanted to add that I too had the issue on both sides. I kept trying to find a success story with the exact same symptoms I had but these things can be quite individual. They key point to take a way from all this is that people can have general nerve issues and that they can improve.
    tgirl likes this.
  17. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Great insight, @zeeman01 ! In fact, I would go so far as to say that "...can be quite individual" is somewhat of an understatement. Our fearful unconscious brains are SO tricky, that if you are the type of person who must have confirmation that your symptoms are exactly like those of others, it is practically guaranteed that your brain will come up with a custom-designed symptom that has never been seen or described before.

    It's just another frustrating aspect of the Symptom Imperative. But once you've figured it out, that's a huge step forward in the battle!
    Laleah Shoo Shoo, Trellis and tgirl like this.
  18. Vladan

    Vladan Peer Supporter

    I am aswell having tms issues and i can confirm you that tingling/numbness/burning everywhere in my body, legs/buttocks,hands,feets,back,mouth everywhere.. and once i didnt care about it or not worried by it it went away,i am now stuck with other symptoms but i am working on it aswell.
    Try to accept it and do something else and not think about it.
    Tms is like this,if you are let's say worried about tingling,if some new symptoms come (much more heavier) and you focus on it,other one leaves.. that's my experience.
    Dorado, Gusto and JanAtheCPA like this.
  19. sweetandsimple

    sweetandsimple New Member

    Zeeman- thanks so much for writing this. It really speaks to me because I am dealing with tingling and burning (on my face) AND I know it’s fueled by infertility/treatments and the stress that comes with it!! It means a lot to read about someone who became symptomatic from the same source of stress. Not many people get how soul destroying it can be. So thank you!!

    Our journeys have been very similar (I too thought I had ms etc) but was tested and had the all clear. It’s taken a good year since then though to fully grasp the idea of tms and I’m finally in a place of total acceptance and I’m now slowly but surely working on recovery. I had various other symptoms when my anxiety was at its highest but 90% of those have gone now- it’s just this facial tingling that needs to shift. I’m encouraged to read that yours went eventually. I’m working hard to accept that it will go when it’s ready!
    Laleah Shoo Shoo likes this.
  20. Vladan

    Vladan Peer Supporter

    i am not a specialist,but all i can tell you,forget about it,calm yourself,relax,ignore it and it will go away.

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