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Autonomic Nervous System Dysfunction

Discussion in 'Support Subforum' started by Red Mountain, Aug 24, 2018.

  1. Red Mountain

    Red Mountain Newcomer

    I developed tingling in my feet and fatigue in my thighs a year ago. I was on hormone therapy that I thought was causing it. My Raynaud's got much worse, I developed SI joint pain, thoracic pain, and neck pain, anxiety, panic attacks, I stopped exercising. I had been a runner, skier and hiker. I quite the hormones and I am in menopause which I thought was causing my symptoms. But, my back pain and the neuropathy, fatigue, tight muscles, vascular spasms/pooling in my hands, dizziness, intolerance to temperature changes, digestion problems, weight loss got worse.

    I thought most of the orthopedic symptoms were from facet joints and discs so then I had a nerve block in my back and the combination of the sedative and the trauma to my back really caused my autonomic nervous system to go haywire. I went to Mayo thinking I had a thyroid disorder b/c I had been diagnosed with empty sella syndrome of my pituitary, but the Doctor said it was fine, and referred me to the autonomic nervous system department.

    A neurosurgeon said my back was fine and that I should look into the TMS/MBS as a reason for my symptoms. He gave me Unlearning Pain and it has helped me a lot with some things. I have had a lot of anxiety in my past that I was able to deal with by exercising. I developed an eating disorder in high school and would binge then run to deal with anxiety. I am also a perfectionist and have OCD, all of this is so much worse now. I see the connections between my personality and the TMS.

    But, the Doctor said the blood circulation and temperature control was not related to my back. An internist suggested that I go to the Mayo Clinic to the autonomic nervous system specialists. I have an appointment in a couple of months. Does anyone have familiarity with this? I am wondering if the TMS can really help my other autonomic nervous system dysfunction OR should I go to Mayo? I am worried about winter b/c I really can't keep my hands warm, I also thought eating mire fat might help, but not sure!

  2. Dorado

    Dorado Beloved Grand Eagle

    Last edited by a moderator: Jan 31, 2019
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  3. Marinedad

    Marinedad Well known member

    I have the same issues everybody wants to
    Inject me
  4. Gusto

    Gusto Peer Supporter

    That's awesome that an neuro suggested TMS, is that common in the states?

    Every doctor ive suggested the stress/ans link to regarding my neuropathy symptoms look at me funny. Although they have no explaination themselves
    Last edited: Aug 25, 2018
  5. Red Mountain

    Red Mountain Newcomer

    Caulfield, Thank you so much for your reply and reference to your story. I need all the encouragement I can get!
  6. birder

    birder Well known member

    I'm with Caulfield. It's one TMS to go, hold the Mayo.
    C'mon, I HAD to! But your brain - and your unconscious mind - are pulling the strings of your autonomic nervous system. When you get to the point, through TMS work, where you truly understand that and know you can heal yourself, you will. Believe it!
  7. Dorado

    Dorado Beloved Grand Eagle

    birder is correct! Please trust us and the doctors who suggested TMS.

    Last summer I couldn't even jump in the lake without my hands and feet turning purple and yellow within minutes - that's how bad my Raynaud's was. It was devastating and I couldn't even hold a pint of ice cream for longer than about a minute or so without symptoms. However, I swam in the ocean this spring when it was still fairly chilly - as cold as the lake - with no trouble. The blood pooling, nerve pain (I was convinced I had small fiber and autonomic neuropathy!), dry eyes, strange sweating patterns, poor circulation and skin that was easily dented from vasospasms, stomach issues, headaches, orthostatic intolerance (documented via a tilt table test), fingertips that constantly wrinkled, mottled skin and livedo reticularis, etc. have all gone away now.

    I'll tell you what my internist and the neurologist both told me: You will be OK.

    I had trouble believing them because the autonomic symptoms were so visible. How can you deny purple feet or the fact that I used to be able to hold a pencil without my skin sinking in from poor circulation? But they were 100% correct. I feel amazing now. I even have Ehlers-Danlos, a connective tissue disorder that famously causes autonomic dysfunction and could easily be blamed for my issues, yet the symptoms are gone. This is why I'm such a strong believer in the mind-body connection.

    Don't think of this as some autonomic disorder. It's nothing more than an overactive sympathetic nervous system from emotions. The autonomic nerves are easily aggravated by emotions - you are not abnormal! You're just stick in fight-or-flight mode right now. This is completely normal and a very core part of the human existence. Sympathetic mode is turned on whenever the body perceives danger.

    Find ways to embrace your inner peace and love for life - as you balance your body through this way of living, it will shed the symptoms. We're all here for you, Red Mountain.
    Last edited by a moderator: Jan 31, 2019
  8. Red Mountain

    Red Mountain Newcomer

    Thank you, I am really struggling today. I did a lot yesterday more walking, bending and lifting and really did fine emotionally. But this morning I have lots of tightness, tingling in feet, legs, and hands and the pain in my sacrum. I've always worried I've overdone it and my mind just keeps replaying that. I'm very anxious about all this and (the emotional work I need to do) so things get so much worse when I know that I need to convince my subconscious I am fine. It really seems to wind things up. And I feel so alone.

    I am thinking about finding an online therapist who specializes in this b/c my current therapist doesn't know anything about it. That also frightens me. My mood goes from good to depressed so easily. I've been emailing Dr. Schubiner and he is awesome, but I need to talk with someone. Any suggestions would be great.

  9. birder

    birder Well known member

    [QUOTE="I am thinking about finding an online therapist who specializes in this b/c my current therapist doesn't know anything about it. That also frightens me. My mood goes from good to depressed so easily. I've been emailing Dr. Schubiner and he is awesome, but I need to talk with someone. Any suggestions would be great. [/QUOTE]
    There's a state-by-state list of TMS therapists on this site. The Pain Psychology Center does Skype therapy and they're terrific.
  10. Dorado

    Dorado Beloved Grand Eagle

    Remember that the brain is neuroplastic and always changing. Your amygdala is just a little overly sensitive to powerful emotions right now, but it can be trained to calm down and not prompt your autonomic nerves to go into sympathetic/fight-or-flight mode. There's nothing wrong with you, and this isn't permanent or unchangeable. Plenty of us have gotten through it, and so can you. You are not alone.

    Also, Dr. Schubiner is THE MAN. I emailed him when I was having some setbacks and doubts. Trust his word. He GETS it.

    CRPS/RSD is another example of extreme autonomic dysfunction that is TMS. We've seen people fully recover. Steve Ozanich, Schubiner + other TMS doctors, and members on this forum who have recovered all agree.

    Make sure to stay off all dysautonomia and neurology health forums - they only hinder healing.

    Also, TMS is nothing more than a natural bodily response to power emotions. Everyone on the planet gets it to some extent, whether it's a simple eye twitch when someone is upset or a severe case of CRPS after too much chronic stress. It's not an actual or separate medical condition. There's nothing wrong with you! :)

    It's not about diets, supplements, or anything else that points to biological thinking - it's about getting back to living life without obsessing over and fearing the symptoms. What makes you happy?
    Last edited: Aug 25, 2018
  11. Red Mountain

    Red Mountain Newcomer

  12. Red Mountain

    Red Mountain Newcomer

    I like to cook, sketch, read and mostly to be outside, walking, hiking, running, riding horses, gardening and helping out in the community. Time with friends is also brings me joy when I'm not fixated on pain.
  13. Jules

    Jules Well known member

    Focus on what makes you feel good then. I love gardening, painting, and being in nature. Now that the weather has cooled, me, hubby, and the pooch, (we’re empty-nester) go hiking every weekend. This helps me unwind and process the stress of the workweek. Don’t fixate on the pain, just do what you like, and tell your brain you’re safe, in no danger, and not afraid. I have to tell myself that all the time, but it works. The important thing is to keep active; this reinforces to the ANS that nothing is wrong and that it doesn’t need to be activated.
    Dorado likes this.
  14. MWsunin12

    MWsunin12 Beloved Grand Eagle

    @Dorado You rock this forum! Seriously! Thank you.
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  15. Karim

    Karim Peer Supporter

  16. Karim

    Karim Peer Supporter

    Living life i lived, trained, run have a normal life. Enjoy going out with my friend AND the pain Is still there. You guys Say live life but that's not true to some people
  17. Dorado

    Dorado Beloved Grand Eagle

    It's not limited to just living life. You also need to work on not fearing the symptoms, truly believing in the mind-body connection and understanding the true source of the symptoms, changing your patterned thinking when dealing with daily life (how are you dealing with stress and emotions?), creating new habits, etc.

    Karim, I am so very sorry you're going through a tough time. I'm not even talking to you in person and I can tell there is a lot of emotion in your posts. And I am NOT judging you for that - trust me, I have been there too many times to count, and I know the CRPS is making everything magnified times a million. I know how it feels to be in your shoes. My mental state sure wasn't helped by the fact that my hands and feet were turning purple and I couldn't even feel my cat brush her tail against my ankle without me screaming in pain. I thought I was going to lose everything - my job, my place in the city, my friends, etc. I didn't have CRPS, but many of my symptoms were similar. I was completely and utterly broken. But I want you to know that it can get better.

    What is holding you back? Is there someone in person you can rely on for total emotional support, like a counselor who can help guide you? What happened in your past? What are you still holding on to? You don't need to answer these questions for me, especially if you want to keep some of the details private (which I 100% respect). But I promise that many of us have healed, and there are absolutely CRPS patients who have healed. John Sarno, Steve Ozanich, Howard Schubiner, etc. have all seen CRPS patients heal, too.

    There is a CRPS success story on this forum and I truly believe it's one of the most incredible stories I've ever read. You can have a success story as well. I know you said you feel discouraged by there not being as many CRPS success stories, but the truth is that most of us feel like nobody shares our exact set of symptoms, and that's often a reason people cite for not being able to move on. You are not alone. And truthfully, even when there are 10,000 stories on overcoming symptoms like back pain, people still don't believe their symptoms are TMS when it's happening to them! So it's not always as helpful as we think it is to have countless people with our same exact situation. I believe the CRPS success story on here serves as a fantastic resource.

    I believe in you, Karim!
    Last edited: Oct 16, 2019
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  18. Karim

    Karim Peer Supporter

    I haven't seen the crps posts, only one person AND she Is constantly attacking, i don have edema o purple hands i have pain un my articulations so am am wondering now after the inicial diagnosis if i hace arthritis
  19. Karim

    Karim Peer Supporter

    I am not afraid of my pain my pain doesnt limit my activities, why people keep saying dont fear pain. After 11 yrs of pain i know the pain can't do harm to me, so that idea of fearing pain doesnt convince me. I do push UPS pull UPS lungees, sprint whats next? I DONT focuse On the pain. But un Time you Say ok you still here . Not fearing the pain or focussing arent the cure
  20. Karim

    Karim Peer Supporter

    So for sor guys getting to where i am Is a cure?? Is getting better? So i can't get better like pain free 24 7

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