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Burning/freezing Nerve pain - any succes stories??

Discussion in 'Support Subforum' started by Megatron, Mar 11, 2022.

  1. Megatron

    Megatron New Member

    Hi friends

    Could really need a succes story or 2!

    I have had a burning pain/sensation all over my body/skin (shifts randomly) for 2 month now.
    Sometimes its more a icy feeling.

    All tests are normal, MRI, Lumbar Puncture, bloodtest etc..

    Cold weather and cold wind can trigger pain sometimes and the skin is sensitive to touch.

    Anybody had this and it went away?? (please only write the good news if any)

    Info: have had the same sensations 6 years ago but no so intense as now!


  2. Skylark

    Skylark New Member

    Hi, yep I’ve had that too. It went away. I was struggling with facial pain (Atypical TN) so I had those sensations on my face and head but also on other parts of my body like legs and arms. The key is learning to ignore the sensations. When they pop up say to your brain “awesome, we’re doing this again today” and move on with your day . When I started doing that, they would leave as soon as I stopped thinking about them. When my brain realized it couldn’t scare me with that anymore, they stopped completely.
    Megatron likes this.
  3. Megatron

    Megatron New Member

    Thank you so much for the reply @Skylark

    I am also struggling with face pain - did you manage that the same way?
  4. miffybunny

    miffybunny Beloved Grand Eagle

    Yes I did and it's all TMS.
    Megatron likes this.
  5. Megatron

    Megatron New Member

    Also the face pain?
  6. miffybunny

    miffybunny Beloved Grand Eagle

    Yes I have experienced that as well. There are success stories re: trigeminal neuralgia which is also TMS. The brain can create any symptom.
  7. Skylark

    Skylark New Member

    Hi Megatron, yep I managed facial pain the same way. I literally told my brain (as many times as I needed to per day) “cool, we’re doing THIS today? Awesome, you do that and I’m gonna enjoy my day”…..roll your eyes at your brains attempts to distract you. Mine did take time before it went away but eventually it did. You have to distance yourself from the pain, and I know that sounds impossible but trust me if I can do it, you can too. I had atypical TN in all 3 branches on both sides of my face plus nerve symptoms in my arms and legs. It’s gone now. Because eventually my brain learned that it couldn’t scare me with it anymore. Now of course, I am dealing with the symptom imperative, but I know that one day it will stop and it just further proves that nerve symptoms are TMS. Your brain may come up with a new way to scare you once you beat this symptom, but don’t be afraid. Facial pain/nerve pain/tingling/burning ARE mind-body pain and you WILL get better. Do you have any new activities or interests that you could pursue? I found it helpful to do “normal” things. Do things you enjoy and show your brain that YOU are the boss. I would talk fantasy football with my husband or I would work on designing a catio for my cats, etc. Focusing on something other than your symptoms is the key. You could even find a show that has a bunch of episodes and get your mind thinking about what’s gonna happen next. Also, don’t read any type of facial pain/nerve symptoms literature isn’t TMS related. That was my first step in recovery. Read the success stories here. I must have read some of them a hundred times. I took a screenshot and kept them on my phone and read them any time I felt overwhelmed by my symptoms. You can absolutely get better!
    Sterling, MWsunin12 and Megatron like this.
  8. Megatron

    Megatron New Member

    Thank you SO MUCH for taking the time to write such a great answer! It helps a lot!!
    I will begin to implement the strategies asap - it will great :)
    Did it take long time to get the initial results?
    Best regards
  9. Skylark

    Skylark New Member

    Your welcome! I’m happy to help any way I can. I remember my initial feelings regarding TMS like “can this really work?” And the answer is YES! For me, I didn’t get better right away, it took several months before I saw any physical results. And I’m still experiencing symptom imperatives. But it’s important to remember that this process is different for everybody. Try to forget any timelines and just focus on you and your healing journey. The more you stress about how long it will take to get better, the more focus you put on on symptoms or put pressure on yourself to get better fast….the longer it will actually take to heal. In the beginning I kept giving myself an end date, a holiday or something, and I would still be in pain that day and super discouraged. It wasn’t until I accepted that I would be living in pain for awhile longer and that it was okay, that my brain was gonna do its thing and I wasn’t going to let it bother me that I started seeing results :)
    hawaii_five0 likes this.
  10. fridaynotes

    fridaynotes Well known member

    i have mostly recovered from the most unnerving nerve pain in my arms and legs~ it took over 6 months of TMS recovery strategies but i am
    just about totally recovered from it. i mostly found that very very radically honest journaling every day helped me. that, and meditation, somatic tracking and reading things and participating on this forum. it’s a process, but there’s light at the end of the tunnel if you do the hard inner work~ i promise.
    Megatron and tgirl like this.
  11. Megatron

    Megatron New Member

    Hi @fridaynotes

    thank you very much.

    Can you tell me a little about How it started and did it feel like burning on your skin or how did it feel? Did it move around or was it only in one place?

    Have a wonderful day!

    Cheers from Copenhagen :)

  12. fridaynotes

    fridaynotes Well known member

    it started quite quickly i think… especially when i laid down to go to sleep. my hands and feet would feel numb, tingling and even feeling of little electric shocks in both of those extremities. it would keep me up half the night with a degree of panic and dread about what could possibly be wrong! then, during the daytime I would have intense muscle weakness where my arm muscles would feel weak and aching and even pulsing a little bit. it felt like a true predicament, and even though I got lots of bloodwork and doctors visits they all said I seemed perfectly fine! so, I set about doing a lot of the important and deep inner work to start to uncover what could be going on in the unconscious that was creating these physical manifestations. eventually, after a number of months a very hard dedicated and disciplined work, I really started to see results and now I feel like I’m just about 98% fine.
  13. Dorado

    Dorado Beloved Grand Eagle

    I thought burning nerve pain was bad... then I experienced freezing nerve pain. Both were from the mind-body connection and neither were fun!

    Freezing nerve pain is such an odd sensation. I distinctly remember the first time I experienced it - years ago while commuting home from my work office. Living in the frost belt (Chicago of all places) had me blaming my cold nerves on icy weather, but those suspicions shifted when the summertime came and the sensations just wouldn't quit. ;)

    Your tests came back normal. You have been medically checked out. It is safe for you to proceed with the mind-body approach - you and your nerves are completely safe today. That may seem intimidating, but it's actually good news! The next step is thinking about the mind-body cause of these symptoms. Ask yourself today: What's going on in your life?
  14. Megatron

    Megatron New Member

    Hi Dorado

    Thank you so much for your reply about the nerve pain.

    My situation right now is that all tests (MRI, Lumbar puncture, bloodtest, PET Scan, ENG, EMG) are good.
    The have ordered a test for Small Fiber Neuropathy in may that I am waiting for, so the reality is that I am still waiting for one test to be done.

    However, as I have had similar symptoms 6-8 years ago (no so intens as now) the doctors are not so sure that it can be small fiber because that does not go away once it has started. My symptoms has gone away before (again not so intense but 100% similar to the ones I am experiencing now).

    The pain/sensations really shifts a lot - from hour to hour and day to day, Sunburn feeling, freezing pain in arms or calves - or NOSE?! Then an all over body sense off burning and beeing off somehow.

    I have been prescribed Lyrica but that does not do me much good - the pain comes and goes anyway.

    Did you have the same sensations/pains all over your body or was I more "local" pain?

    Best regards
  15. Dorado

    Dorado Beloved Grand Eagle

    My sensations were showing up all over my body: my face, hands, feet, scalp, stomach, you name it. It seemed like nowhere was safe, not even my neck. That was another “red flag” for my neurologists who suspected the mind-body connection was at play: small fiber neuropathy typically begins as a localized issue (e.g., a specific part of the left foot), it doesn’t involve your entire body very suddenly. And it certainly doesn’t favor your calves for a few hours only to call out your arms later on in the day. I strongly suspect your biopsy results will be coming back negative. :)

    I know the sunburn feeling as well. Do your hands and feet sweat a lot? Do your fingers and toes shrivel up when exposed to water for prolonged periods of time?
  16. tgirl

    tgirl Well known member

    Dorado, would you say it’s likely mind/body if the sensations move around the legs (not feet) only, not the whole body? Appears in one leg, then the other, then both, then neither…Again I’ve been totally checked out by neurologists etc and my doctor thinks it’s my ‘subconscious mind’. I keep hearing it has to move around the whole body to be mind/body? Thanks!
  17. Dorado

    Dorado Beloved Grand Eagle

    @tgirl, absolutely! That is still aligned with the mind-body connection.

    I would trust your doctor - it sounds like they are well-versed in this area. Not everybody is lucky enough to have a doctor who truly “gets” the mind-body connection. Sounds like a keeper to me.

    Have you been doing any mind-body healing work? Or have doubts prevented you from applying the work to your nerves?
  18. tgirl

    tgirl Well known member

    Great question Dorado. I have been sticking with the ‘don’t let myself get down and panicky’ method. I feel I know what my emotional issues were in the past ( anxiety ridden) and what they are presently, so I kind of feel I’ve over sensitized my system. Not sure what action I should take other than live my life and stop fixating. Unfortunately I don’t achieve this 100 percent of the time.
  19. Megatron

    Megatron New Member

    My hands and feet sometimes sweat (an abnomal feeling actually).
    Right now it is the sunburning and the feeling of the first layer of my skin has been peeled off which makes it irritating to wear clothes.
    My face . especially around the nose is hurting/burning - sometimes around the eye and forehead.. A kind of freezing pain... If I Google it comes back with Trigimenial Neuralgia but it does not really fit the symptoms.
  20. Bex1111

    Bex1111 New Member

    Thank you for this. I had rib pain that I have been so stressed over that in thr last few months has moved into burning face , in noes , moving around , arms and random patches . This gives me hope

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