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A desperate update, opinions appreciated

Discussion in 'General Discussion Subforum' started by Duende, Apr 8, 2019.

  1. Duende

    Duende Peer Supporter

    I have written very little here, but I have read a lot. This forum seems edifying to me, not like many others I've seen in the dump that is internet, so here it goes:

    My personality is TMS total: perfectionist, self-demanding and conscientious, always looking to be loved, very responsible, I always follow the rules strictly and I have difficulty letting it go. I found this description in a success story here, and almost literally I had to copy it, because I'm like that!

    Part of my story is in my profile. My story started with fears and worries, and then the rest came.

    I think I've already read "everything" on the internet ... yes, everything. I'm fed up of reading. I also have a mountain of books mentioned here and there, and another mountain of success stories of all kinds, of people who have been cured of the most rare and difficult things, even ALS (read Ben Johnson for example, but there are more cases on Terry Wahls page).

    Today I feel very sick all day, every day. And I am constantly monitoring and evaluating my sensations and the state of my body, and feel in a very bad state. I often think I'm collapsing.

    Now I am enduring the following:

    - maintenance insomnia, I fall asleep easily but at 3-4 hours maximum awake and it's over.

    - logically I'm tired and I do not have much energy, but I can not sleep more than I get! (This makes me very angry)

    - my head is heavy, dazed, as derealized, as after a night of partying and alcohol, you understand me. I'm not focused and sometimes I do not remember things that just happened a minute before

    - sensation of fizzing in the body, like a strong pulse, not localized but general, in the trunk, like shaking inside. this is particularly disgusting

    - general muscular tension, more pronounced in the neck

    - I have a nervous twitch in my upper lip, for a year now

    - constipation, but this is since childhood. but it was never a problem. sometimes interrupted by very frequent stools. I really do not know if it is constipation since there is no consensus definition of constipation.

    - ocasionally the tip of the tongue tingles and some letters get stuck in my mouth

    - sometimes I feel that my left leg becomes numb, it is a sensation, it is not something objective, the leg works normally to the movement, to the touch... This was my first important symptom.

    - then followed the hand and arm on the same side, with a similar feeling. This scares me especially.

    - I get the impression that my hands are shaky but I do not see it, it is more an internal sensation.

    - I'm sad and crying every day, my life has become very dark

    Before these symptoms manifested, I read them and I feared them... I know this with certainty. Chance?

    In all this time, I have seen several general practitioners, including alternative medicine, my blood tests, vitamins, etc., are normal. At first I was afraid of MS, three different neurologists saw me and they did several MRIs and everything was normal. Then I started to fear parkinsons. In the last year I have seen three other private neurologists, two of them specialized in parkinsons, and in his opinion what I have "only" severe depression and anxiety. The last neurologist was 4 days ago. curiously after that appointment I slept acceptably, and the next day I was emotionally well, although my physical symptoms were there.

    None of the neurologists showed a glimmer of doubt. All my symptoms are listed on Anxietycentre.com, yes. But I'm still sad and worried. I also know that there are so many stories of people diagnosed at 5 years even 8 years since the first symptoms ... and this has me in this horrible limbo! On the other hand, sometimes I think that with so many symptoms that I have, if there is something wrong, doctors should have seen something, or not?

    Family and friends (wich I have less and less) do not understand how I am not happy and I forget this nightmare, but I can not because the symptoms continue and the vicious circle continues, and I feel more and more alone, misunderstood and isolated. A week ago I dreamed that my face hardened and I could no longer smile, it was horrible! I woke up with my heart jumping.

    I also have an energetic therapist, something similar to Reiki, who does not feel anything altered or wrong with me, just my thinking. but the thought can really make us sick, is not it?

    The cycle is: start a new technique (meditation by J.Dispenza, Healing Codes by Alex Loyd, TRE ... you name it) practice 4 days and goodbye, as there are no results. The other cycle is: 1-2 practicing the independence of the result, the letting go, the positive affirmations, you name it ... then return to fear and find an explanation for my symptoms on the internet. I have been doing this for 3-4 years, gradually getting worse. Especially the last year and a half has not killed me because I have children who need their mother.

    I know that the key is the mind. And this applies in all cases, whatever the problem, physical or mental. The mind is idiotic: it is not at my service, it is destroying me. But I can not make myself stronger than my mind and master it.

    My story is not typical of TMS. What the hell is wrong with me? How do you see? I have a horrible disease that can not be diagnosed early yet? What I can do?
    Last edited: Apr 8, 2019
  2. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Duende,

    Thanks for posting your heart-felt update. I am very sorry for your worry, and suffering.

    I respectfully disagree, unless I am misunderstanding what you've said above. In short I get that you have lots of symptoms, that you're worried about them, that they've been diagnosed as tension related (no physical or biological cause), that you seem to make no progress, and that you're anxious, depressed, and feeling isolated and hopeless.

    This is probably TMS, albeit on the more difficult end of things, but only because of your mental health around it. The symptoms themselves don't sound beyond the average TMS.

    I say all this to try to reassure you. Many have been through this as you know. You've read the success stories.

    You didn't ask for advice, but I will mention that your anxiety and fear, depression, isolation can be addressed, outside of your TMS work. While many make it out from where you are with an improvement in symptoms, and the mental health follows, improves, this is not always the case. I think you might consider attuned, personal support, some kind of psychotherapy if you can access it. This will help you relax more, accept yourself more, feel more present with you! Then the TMS work will have greater efficacy I think. You'll have more confidence and less fear, hopefully more strength to stick with an approach even when you don't get results right away. I wonder how this strikes you, my suggestion.

    Believe me, I am sending my love and support! Not my criticism.

    Andy B
  3. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hello Duende - and I am also sorry to hear that you are really struggling.
    This is good, because if you are fed up, if you are desperate enough, then maybe you will finally take the next essential step, which is to do the emotional work. I agree 100% with Andy B, that you need to go into psychotherapy. And you need to work with someone who accepts that the source of your health issues is emotional. It does not have to be a TMS practitioner at all - most good psychotherapists understand, as Freud understood, that our minds have a powerful influence on our bodies.

    I do see what you mean when you say your case is not typical - but only in the sense that the number of your symptoms, the extremes of your symptoms, and the depths of your anxiety and depression - these seem to be much more than the average person on this forum. We do have plenty of people with very extreme TMS symptoms along with severe anxiety and depression, but we end up telling them the same thing: they must get psychotherapy. Dr. Sarno himself, when presented with someone with extreme symptoms, also said that psychotherapy was necessary for those patients.

    Good luck, Duende. It absolutely is possible to take control of your brain and get back your life - but this is not something that you can do on your own, so please, find someone to help you do this in person, okay? You are not alone in this struggle, believe me!

    Lainey likes this.
  4. Duende

    Duende Peer Supporter

    Thanks Andy for your answer, I follow your story and I saw your ski video recently, I like it because I have practiced a lot of ski mountaineering until I had my first son.

    Many thanks to you also Jan, for your answer.

    Really do you think?

    I find it hard to find cases like that. I remember once I read here in this forum a user named Huckleberry who mentioned an internal sensation like bubbling or fizzing. But it is also mentioned in Anxietycentre, and in the parkinsons forums, and MS sufferers, and CFS forums, etc.

    It's all so weird. Between summer 2016 and summer 2017 I was taking medication for anxiety and depression, and in a psycho-drugs withdrawal forum they consider that this is a consequence of the withdrawal. Doctors do not think this is possible, obviously. I am so confused.

    I don't understand what you mean here. Sorry I'm confused and I do not think very clearly, the other night has been bad, I've slept very little and I'm "thick" and hoarse.

    I did not mention that I tried psychotherapy. I spent a year with a therapist who simply listened to me and told me to breathe. Then I had another good number of months of fairly intensive psychotherapy with another EMDR psychologist. Neither of them made any difference except that perhaps I became a little more aware of my sickly thinking processes, and I felt frustrated and like a great expenditure of money.

    Finally I made two more attempts: a very expensive psychoanalyst, and an online psychologist with whom I did not get to the 4 sessions with each one. My experience with psychotherapy has been quite sterile. The irony is also given that I have a degree in psychology from the university (uff what a shame).

    My energy therapist also does psychotherapy and the truth, I prefer it to those mentioned. But I do not advance. It's like an addiction to destructive thinking, which I'm not able to stop. And my physical situation does not help anything. I need to know that I do not have parkinsons or anything serious, and then move on from there. I need a miracle.
  5. HattieNC

    HattieNC Well known member

    I've had quite a bit of experience with Parkinson's. My father, mother, and father-in-law were all diagnosed. So, I'm here to offer you a little reassurance. In my experience, initial symptoms are quite extreme and even general practitioners can connect the symptoms to the disorder. My dad - who was relatively young (56) was diagnosed early into the disease.

    My husband has a myriad of TMS symptoms (even though he won't accept it) and one of them is internal tremors. Shaking on the inside as you described it. They usually manifest when he is stressed, overly tired, or is sleep deprived. Sleep deprivation can cause our bodies to do some pretty strange things. I know that I'm much more likely to experience pain when I'm in an insomnia cycle.

    I know you said you are tired of reading. But, I came across a book recently that was life changing. It's called the Brain's Way of Healing by Norman Doidge, MD. It's quite long and scientific, so I listened to it on Audible while at the beach. It might be worth a listen.
    Last edited by a moderator: Apr 10, 2019
    Ellen likes this.
  6. Duende

    Duende Peer Supporter

    Thanks, Hattie, for your response. It reassures me, but it seems that I need total security to move forward, and total security does not exist. I often think why my fear focuses precisely on diseases of uncertain not easy no rapid diagnosis... it has its logic: this way I keep myself in fear and uncertainty. As there are people who claim to have been diagnosed 10, 15 even 20 years after, my mind clings to that. I clearly feel that I have a kind of addiction to destructive thinking, and at this point I am fed up with myself.

    I read Norman Doidge, yes. What he describes, however, are extreme, almost miraculous cases. It's interesting.
  7. HattieNC

    HattieNC Well known member

    Please don't be fed up with yourself. As humans we are wired to think negatively. When I'm in pain, I'm much more likely to have negative thoughts, fear, and anxiety. I don't believe in the power of positive thinking (even though I used to have a fixation with Norman Vincent Peale) but I do believe we can learn to recognize when negativity is overcoming us and redirect like we do with misbehaving children.

    For instance, driving is trigger for me to have negative thoughts so I purposefully turn on my favorite Spotify playlist as soon as I get in the car. I can't sing and think negatively at the same time. Bedtime is another trigger. I have bedtime routines that make me feel relaxed and put me in a good mood before hitting the sack. I tend to have insomnia so keeping negative thoughts or monkey mind away is difficult. When I find myself going to a dark place, I replace that story with a happy one. A story of something that I wish had happened in my life, or I hope will happen. Often, I get so excited about the story going on in my head- it keeps me awake!

    https://www.psychologytoday.com/us/blog/unconscious-branding/201705/why-negative-thoughts-are-normal (Why Negative Thoughts Are Normal)
    Last edited: Apr 10, 2019
    JanAtheCPA likes this.
  8. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Duende, I'm going to be tough on you. If you don't want to hear it, then please, do not read this.

    You are stuck in a classic "Yes, but...." cycle. Your fearful brain is keeping you there, and you are letting it, because whatever the alternative is, it's way too scary for you to face.

    Continuing to ask for advice, and then saying "yes, but..." to whatever is offered, is just another distraction designed for you by your fearful primitive brain.

    You already said that you saw THREE neurologists and they had no doubt that your problems stem from emotional issues. Who else is going to give you this assurance? It's another "Yes, but...." which is designed by your brain to make sure that you do NOT move on.

    No one, especially yourself, is doing you any favors by enabling this.

    You said you've tried psychotherapy, but it sounds to me like you never gave any of the therapists a real chance. That would be your fearful brain again, finding a reason to reject them. It's extremely unfortunate that you have a degree in psychology, because that is probably not helping you to be open to the possibilities. But of course, that is just another example to add to what you already know about sabotaging yourself:
    Believe me, I know about self-sabotage - it seems to be one of the things we humans do really well.

    We see and hear about miracles here every day. For the individuals with the toughest cases and the toughest stories, these miracles happen when they open themselves up to do the difficult emotional work, as scary as that is for many of them.

    In the end, you must love yourself enough to take the necessary risks, and to know that you deserve to heal, and use that knowledge to fight back against your fearful brain.

    Good luck.
    Ren, silentflutes, Lainey and 5 others like this.
  9. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    With respect Duende, I want to echo Jan's thoughts, and her brave foray into "distance psychoanalysis!" We have to take chances as we address folks, and this is not easy for most of us.

    We've seen and responded to so many posts, and yours has an oft-seen flavor of "nothing can be done." I am not in anyway attacking you, nor is Jan.

    I hope you let in that Jan is saying: You're stuck, and the stuckness can be worked with! And truly the most effective way is to allow help.

    We've all been in our own versions of your current "hell."

    Allowing help means, critically, working with the defenses against allowing the help, and allowing the help to work. This "allowing" is a very hard nut to crack!

    In working with outside help, be this with a therapist, life coach, physician, nurse, physical therapist, etc, the relationship will always bring up subtle echos of one's past experiences, often unconscious, of relationships with important caretakers in early life. This is called "transference" as you know. Transference creates "believable obstacles" to relationship.

    These common obstacles, all related to "transference" revolve around trust, because trust is what is interfered with when we're young. Here are some, and none of them make us "wrong" for experiencing them.

    --the person I am working with does not understand me
    --I don't really trust this person's knowledge, attunement, or love for me
    --This is costing me $, and I need to see results quickly

    As Jan points out, in a sense, these are more crude walls, yet believable walls that protect us from deeper feelings. This person we're working with, we're aware of down deep, may take us where we do not want to go. Will we be truly taken care of? Will we survive? Will we be loved? Will we be safe? These questions live in us. All of us, all the time. They are part of Dr. Sarno's "what we don't want to feel."

    And truly, no help is perfect. We're on our own. But with grace, we learn that this is OK too, and we become more permeable to outside help, more receiving.

    I wish you the greatest love and understanding for your life, and the best guidance for the next steps. I hope that I am not reacting to your desire for help in a way in which "I hope you get better, so I can relax.":)

    Andy B
    silentflutes, Lainey, Ellen and 2 others like this.
  10. Duende

    Duende Peer Supporter

    Tears run down my cheeks as I read you both Jan and Andy. In no way do I feel attacked, no! :shame: It is the opposite: I thank you both for showing me the harsh truth, because what you both say is the truth, my truth. I do not come here to be caressed on the back (I do not know how you express this in English, sorry it's not my first language ...).

    I am self-sabotaging and throwing my life out the window, and for more seriousness, I do not trust anyone or anything, I never trusted. I think it has its origin in that I never trusted my mother for my problems as a child, I never relied on her or asked her for protection, advice, guidance. I probably received, but I did not allow it. I do not know how I've survived in life this way :(

    My body and my brain have "own life", they do what they have engraved on fire bangheada It has been painful but not long ago I became aware of this fact. And I've also become aware that what happens to me and when it happens, is not accidental.

    It's time to change, for my own good. The huge problem for me is how, I'm stuck. I'll have to find my way.
    JanAtheCPA, Lainey and HattieNC like this.
  11. Kozas

    Kozas Well known member

    I was a lot like you(there's a story about me in success stories subforum), and I still have pain but my quality of life is now better. What helped me the most was meditation and mindfulness, from my perspective doing anything in your state of mental health will be counterproductive. You will try something new, stick to it for few days and then abandon because you don't see any results. The key is to be okay with pain and not expect results, but doing TMS work for yourself. I know that's kinda strange - why waste time if you don't expect results, but from my experience(I speak only from my point of view!) this is the only way. If you finally relax, and will be able to forget about pain just for a while, and accept that maybe it is what it is, then you can start true work. Meditation is extremely helpfull in archieving this state.
    Don't try to change how you brain works, you will fail most likely. Just let him do his thing, and don't over analyze what he produces. Acknowledge that, but steer it into something productive. You are way overanalizing and from my experience you are propably thinking a lot about past(although maybe I'm wrong) and somethimes future instead of living here and now.
    For my personally psychotherapy was almost wortless, 15 minutes of meditation is worth more for me than 60 minutes of psychotherapy session.
  12. RogueWave

    RogueWave Well known member

    Hi Duende, nice to 'meet' you. Apologies for this long post, but I felt compelled to create an account and respond to you, because I went through a very similar experience to yours, and was able to cure myself completely.
    I prefer to remain anonymous, but I will say I have medical degree and have been in practice for over 15 years. In that time, I've had roughly 50,000 patient visits, and my specialty is pain.
    That being said, I've also recovered from 2 severe bouts of TMS. This first occurred at a very young age (from roughly 16-24 years old), and was mainly severe, chronic back pain. I was able to recover completely after several months of studying Dr. Sarno's books and getting a copy of his lecture.
    Eventually, when I got into clinical practice, I found TMS cases to be very common. I even developed an email relationship with Dr. Sarno, because I had many questions about how to determine when a patient was actually presenting with TMS, and when it was something else. So I learned a lot from that as well.
    Later on, a second bout of TMS exploded on me in my late 30s. This time, however, it wasn't as much pain as it was 'TMS equivalents.' I had pretty much all the same symptoms you listed, in addition to about a dozen more. I would sleep about 30 minutes a night, have severe neurological symptoms like numbness, tingling, losing hearing in an ear, or blurriness of vision, severe, chronic dizziness, the inability to focus, fatigue, sweating, etc. The list goes on. Sometimes it was only one of these things, sometimes several of them would occur at a time. The worst was the constant feeling of dizziness. Often I would fall against a wall as I was walking down the hallway to see a patient. I misdiagnosed myself as having an inner ear virus (very common), and then eventually thought maybe it was a relapse of Lyme disease, which I had had previously.
    I assumed this was all TMS-based, but studying Dr. Sarno's info all over again did very little to relieve my symptoms. They just seemed to keep intensifying.
    After every test in the book came back negative, I was stuck as well. There was nothing life-threatening, but what was going on?? And how to treat it?
    One day, I finally couldn't take it anymore, and for the first time I just got extremely mad over all of it. I have always taken care of myself, so I didn't understand how this could happen to me. I was practically suicidal at that point, because day-to-day living had become so physically and emotionally uncomfortable, I didn't think I could handle it much longer. Frustrated and desperate, I decided to treat myself as if I were a new patient coming to see me. I took my entire history as objectively as possible, and started scouring the internet.
    I was at that point I found a guy who went by the screen name of Hillbilly on a TMS forum. I never met him in person, but he quite literally saved my life. He described feeling exactly as you did (and I did), and how he worked very hard at TMS theory for 6 months with no real benefit. He knew his emotional state was affecting his physical state and vice-versa, but when Dr. Sarno's approach didn't help him, he started searching elsewhere. His posts made perfect sense to me, and applying his info was what started my full recovery. Here is a link to his original post, and if you poke around this forum, you can find all the rest from him:
    http://tmshelp.com/forum/topic.asp?TOPIC_ID=8511 (TMSHelp Forum - Stubborn Hillbilly gets better)

    The 2 books he recommends, which are both awesome in different ways, are 'Hope and Help for Your Nerves' by Dr. Weekes, and 'Mental Health Through Will Training' by Dr. Low (that was written in the 40s, so the language is a little funny, but it's the best book ever written on the subject). Dr. Low is the one who started CBT.

    I will be happy to answer any other questions you have, but please read those things first...especially Hillbilly's post. I have to say I am also convinced that TMS is one manifestation of generalized anxiety disorder (GAD), and not necessarily always a distraction from repressed rage, as Dr. Sarno theorized. Basically, this is what happens physiologically:

    Something stimulates the stress (fight or flight response), either in a big way, or chronically over a longer period of time. Human bodies are not meant for this fight-or-flight system to be triggered very often, and when it was, what can happen is that the entire parasympathetic system can go into a state of hyperactivity. This is where all the symptoms you are experiencing are coming from, and where practically all anxiety symptoms originate.

    And the body/brain get 'stuck' because the symptoms themselves become so stressful. We end up mentally dissecting them endlessly (which Dr. Low refers to as intellectualism), and/or fixating on and fearing them incessantly (which Dr. Low refers to as the Romanticism). Both of these reactions, or a combination of them, perpetuates the symptoms. So simply put, something creates the initial symptoms, but how we view the symptoms perpetuates them, because it prevents normal homeostasis. A body constantly releasing stress hormones cannot function normally. The symptoms won't kill you, but they are stressful enough to keep the negative cycle going.

    For myself, I grew up in an abusive household. My dad had severe PTSD from Vietnam, and I went home from school every day fearing something bad would happen. Eventually this constant threat response became chronic, and that is how my first TMS bout occurred. Eventually I got out of the house, but by that point the pain was a constant focal point. I had to sit a certain way, sleep a certain way, etc, etc. Finding Sarno's stuff finally broke that habituation because once I understand the pain was benign and curable, I stopped caring about it, and voila, my body relaxed, and it was cured.

    The second bout occurred because I was dealing with severe family stress, work stress, and relationship stress all at the same time. Add that typical adult stresses like a new mortgage, a car payment and insurance, the responsibility of having kids, etc, and it becomes clear why these TMS/stress symptoms usually onset during the mid 20s- mid 40s. In my case, my childhood experience just primed my nervous system for an explosion once adult life hit me.

    Hillbilly's stuff and the books I mentioned will get you on your way. And again, I will help as much as I can, but like most people are advising here, start working on this, and stop going from doctor to doctor, spending all your time on forums, etc. This passage is directly from Hillbilly, and I think it is appropriate to end this super long post with it:

    "Since my most perplexing and chronic symptom was stiffness and pain in my upper trapezius and right hip, I went looking at things on a symptom-by-symptom basis, instead of looking at the condition as a systemic problem. I did not fully understand yet that the entire nervous system was in a state of upset and therefore I attached danger to all these symptoms and somehow thought they had to be unraveled individually. This led me to find a book about stress and back pain, which landed me in a bookstore in Pennsylvania after a business meeting staring at a copy of Healing Back Pain by John Sarno. I bought the book and took it back to my room. I read into the night and finished the book back at home. I remember after reading the book and then the letters in the back that I had more confusion than clarity as to what I needed to do next. So back I went to the internet and found tmshelp. I lurked for a few days and then began asking questions. I was met almost immediately by what I call the cult of Sarno. You know, the kind of answers a fellow sufferer has to a question that says stop thinking and just do what Sarno says and you'll be fine. There was even a specific language spoken only by visitors to this site, with odd phrases like "my unconscious sure is tricky," and "I talked to my inner child and told it to calm down." I stayed on the site because there was promise, and away I went journaling, talking to my brain, pasting the 12 daily reminders in my car and on my computer. Daily I would faithfully follow the program, but I was waiting, per the instructions, until my pain eased to get back into activity. This went on for several months. At this point, had I been in the NYU program, I would've been invited to surrender my life savings for a psychotherapy program that I had read studies on that had limited at best outcomes. This was later confirmed in The Divided Mind. I reached a few conclusions: I was a resistant SOB, a serial repressor, intractable anger stuffer. I simply had so much baggage in my unconscious that I had to have my pain protect me from it spilling out. Thanks, pain. I appreciate it. I pondered this circumstance noon and night.

    A few weeks passed in which I walked through the motions of living. At night, suffering from terrible insomnia, I would ponder the things I'd read that gave me hope. I got out a pad and paper and began to write down the things that I wasn't doing that I knew I needed to. This was an epiphany for me. I wasn't following the simplest advice of all, which was to let the pain come and go or stay or whatever it chose to do, which both Weekes and Sarno prescribed. The problem was that I was still allowing my symptoms to control me. I wasn't in control at all in my life. I made room for rest, avoidance, paced myself too much. I decided I needed one thing, and that was courage to push through the pain and doubt and go back to living again. I took a break from all forums, all internet searches, and decided on one goal: I would live fully again, and I would be stronger and more resolute than before. I didn't need a hero. I needed to find the inner strength for MY journey.

    I was introduced to a lady who had gone through what I had through a mutual friend. She agreed to take me on as a pet project. She told me to buy a book called “Mental Health Through Will Training” by Dr. Abraham Low. I began to read the book in the two weeks before I met with her the first time. I got the feeling that I was listening to a football coach while reading Dr. Low rise above the complaints and whines of his patients and calmly, assertively tell them they were wrong. They were simply giving in to their stress symptoms. Even though none of them mentioned back pain specifically, I knew what he was saying spoke directly to the way I was behaving, overthinking, avoiding, mentally manifesting tumors and bleeds where there were none. TMS? Schmee Em Ess. Broken will and cowardice was my diagnosis.

    When I met with my therapist, she was always so sure of what she was telling me was correct. That was impressive. It was also a stark contrast to those on forums I used to listen to give advice even though I knew from their own accounts that they were unable to find their own solutions, they could advise me on mine. She gave me homework. Some of it was strange, like washing my wife's feet, but some things were just plain, everyday activities that I didn't do because of my symptoms like going for a walk with my daughter. But it all made sense in retrospect. This was living in which you took chances and impacted the people in your life. No more hiding. I increased my chores around the house tenfold. Within weeks I stood on a ladder for three days and stained my deck. I went to ballgames and sat on bleachers and talked to people around me. I was not ever comfortable, but I was OK and began to feel human again. This is the main point. You have to behave like a person who is healthy because in reality you are. You only think there is something wrong because of how you feel. One evening after cleaning up our dinner I went outside to build a fire in our firepit. I was bending over and over to pick up wood and sort of noticed that my back was moving freely and easily. It was the last I heard from my pain. It has been several years now.

    You are going to get better. You will restore your health to normalcy. There will be times that you will feel reluctant to do something, pressured, conflicted, but you will experience no more than normal fight or flight reactions that every human being on the planet experiences.

    After reading the above, you either had one reaction or another. You either believed it or you didn't. The dividing line between those who recover from nervous illness (which TMS assuredly is) and those who don't is what they actually believe. You can write or chant affirmations until you are purple in the face, journal your life's story colored with lots of offensive words about your parents or ex-spouses or children, do yoga with eastern gurus, sit in sweat lodges, beat pillows with mini baseball bats, or many, many other interventions people have undertaken to overcome their problem, but until you do absolutely nothing except understand what you are doing wrong and fix it, nothing will improve.

    What you are likely doing wrong is avoiding life. Specifically, you are avoiding discomfort. You've probably had this discomfort since childhood, but that isn't important. You were born sensitive, and you have little resistance to stress in your nervous system. You get powerful symptoms when stressed. You have difficulty concentrating, can't organize your life well, avoid social interaction, avoid any activity you think might cause embarrassment, avoid doing the most basic chores or daily living because they are boring. Instead you fill your time with things that command your attentive energy. More probably you do more than one. The biggest one I see is staying on this forum or another, posting your thoughts or those of others, getting into arguments about things that don't matter to anyone, including you. If you are an adult, you need to work. That is what adults do. Even if you don't do it for money, volunteer. Read some Thomas Carlyle. He'll inspire you.

    Meanwhile, there are people who love you who are watching you do this, have probably sought many times to encourage you to get back to living, but have met with such resistance that they have stopped altogether. The choice to stop is yours. You are no different in that respect than a drug addict. The decision has to come from inside you. It is a simple act of the will. It is not complicated and does not require the intervention of a counselor or guru. You have to be so tired of being miserable that you decide once and for all to fix this, to live courageously, and to stop coddling your precious feelings. Everyone alive suffers embarrassment at one time or another, and you are not so important that you can't accept it. It angers you, perhaps to the point of temper tantrums, that there are demands upon your time. You must stop seeing your failures or upsets as anything more than normal, average occurrences. Because objectively, that's what they are. Ask a few people what they've struggled through, and you're likely to be surprised. Then think to yourself, “Wow, if that person can do all this after going through what he has, I should be able to also.” You can, of course, if you believe it."
    nowa, Pietro Carloni, Tomi and 9 others like this.
  13. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Thank you so much, @RogueWave for registering and writing this post. I wish I could like it more than once. I've been having my own setback lately - I think it's time to take my own advice and re-read Claire Weekes.

    Who, by the way, wrote Hope & Help For Your Nerves in 1969 (the year I graduated high school). There is much wisdom that simply can't be improved upon. I will also check out Abraham Low.

    MWsunin12 and HattieNC like this.
  14. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi RogueWave,

    Thanks for posting this! Both your success story, and the specific pieces which "broke the spell."

    I want to suggest that you repost all or parts of your entry above on the Success Stories subforum. Your experience, especially as a physician is very profound for those still "taking this deep" ---- very important for many to understand. Buried in this thread, it won't have the impact of the success stories listing!

    You can tag it also, with appropriate tags, to make it easier to find.

    I am curious too about more of the steps as you took in this second round of information and healing. How did you apply it to you? What were your obstacles to application?

    Andy B
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  15. balto

    balto Beloved Grand Eagle

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  16. Duende

    Duende Peer Supporter

    Thank you thank you thank you.

    And thank you, especially RogueWave and you Balto, and Hillbilly who is not here but I've read you both a lot here and at TMShelp, so wise and valuable.

    I hope some day I can teach others to find the path of light.

    HattieNC likes this.
  17. RogueWave

    RogueWave Well known member

    I am quite sure you will! That's the funny thing about this condition, it's like being stuck in a dark cave, but once you find your way out, you can shine a light for others. So whenever I help someone with this, I always ask that they 'pay it forward' once they have recovered. I'm sure you will be doing that soon enough :)

    Also, I have an extremely busy practice, so while I can't post here that often, most likely they will be longer posts when I do, so fair warning! Ha ha.

    Hello @balto ! I read your posts many times as well, and wanted to say thank you for all the time and effort you spent sharing your experience. It was a great help to me at my worst time.

    @Andy B I will definitely get around to that at some point. I wrote 2 separate, long posts about my story and recovery from the dizziness (which was my worse TMS symptom the second time) in a FB group, so maybe I'll just link those there...? Or maybe it's time for a re-write with everything I've learned since then :)

    To answer your question, my first instinct when it started was that it was TMS. However, re-reading and studying all of Dr. Sarno's materials again didn't really help at all. So this was a time when my medical background started working against me, as I started to pick apart the symptoms separately, which was a mistake. I would have saved time if I had stepped back and looked at the whole process from the beginning, and looked at the various problems as all branches with the same root. But it's much harder to do when you're 'in it' as I'm sure we've all experienced.

    And I had heard Dr. Sarno's health was deteriorating at the time, so I didn't want to bother him with questions about my own case. After all the blood tests and scans turned up negative, I was relieved that it wasn't anything serious, but also even more stressed out because I had no answers.
    Most of my issues seemed to be neurologically based, but I was completely aware of the huge, constant stresses I was facing, and I was absolutely positive that rage wasn't underlying any of it.

    This is the point at which I found Hillbilly's writings. He argued against the idea of repressed rage being the underlying culprit, instead favoring the idea of an overloaded parasympathetic system. This was an 'a ha' moment for me, as it perfectly explained everything I was experiencing.

    This wasn't a case of repressed rage, but a body stuck in a constant 'fight or flight' loop. The massive, long-term stressors caused constant release of stress hormones and neurotransmitters, which caused havoc in the parasympathetic nervous system (a good summary of its functions here: https://courses.lumenlearning.com/boundless-ap/chapter/functions-of-the-autonomic-nervous-system/ (Functions of the Autonomic Nervous System | Boundless Anatomy and Physiology)).
    Dr. Weekes discusses this very well in her books, so I won't expound upon it any more.

    I believe in some cases of TMS, repressed rage is probably the underlying issue. However, after analyzing my own case, and literally hundreds of patients since then, my firm professional opinion now is that most TMS cases fall into the 'chronic parasympathetic arousal' category. One of its functions is to control muscle tone, and when it is chronically stimulated by stress hormones, muscle tone over-constricts. This is the 'tension' Dr. Sarno speaks of, and why even though TMS usually strikes one or several areas, there are almost always tender points upon palpation in certain areas of the body. And they area almost always postural muscles. My guess is because postural muscles are always working to keep us upright, and are therefore much easier to overstimulate. It's just a personal theory, but it makes sense from an physiologic point of view. And of course, the tense muscle restricts blood and oxygen flow, causing the pain.

    The main reason TMS becomes chronic is because the pain becomes the new stressor, and it's almost always present. And even if it's not, we fear it returning. We are also told we need PT for months on end, surgery, drugs, etc...all of which add to the stress.

    Interestingly enough, and something I haven't read very much about, is that the brain, and therefore the thought patterns, are subject to overstimulation as well. The fight-or-flight response is hardwired in our DNA to save our lives in an threatening situation. When this happens, the brain/thoughts become hypervigilant, and will make us consider a worst-case scenario. We think we are controlling our thoughts all the time, but we are absolutely not. 5000 years ago while our ancestors were out in the woods hunting/gathering, and a noise was heard, if the brain didn't go hypervigilant and consider the worst possible danger, there's a good chance we'd be dead (if the noise were something serious, like a bear). But now, the brain doesn't differentiate between threats. A bill due, a problem at work, kids, relationship stresses....they are perceived by the brain as threats, and will cause a resultant stress hormone release. Then once we are producing physical symptoms like pain, or offshoots like insomnia, IBS, fatigue, foggy-headedness, etc....we are stuck. The symptoms become persistent stressors, and the loop starts.

    That being said, the biggest difficulties I had (and I assume most people will have), are letting go of other potential diagnoses and REALLY focusing on this information. This is vital. If there is doubt about any of this, the process will continue. This is why Hillbilly was so adamant: "If you really know your pain/symptoms are benign, why are you still here?' Whether its repressed rage or just an overloaded system, the 'cure' is still the same: knowledge, and full acceptance of that knowledge. Confidence comes with that knowledge, and the biochemical state of a body in a state of confidence vs one in a state of tension cannot co-exist. One will predominate, so the focus only needs to be on the fact that ALL of the symptoms are benign, harmless, and curable. Full confidence.

    Dr. Low talks about all of the following ways of 'sabotaging' the cure, and I was guilty of all of these at some point. All them keep the body in a stressed/tense state, and will prevent healing. Please read his book for more info, but for now, in no particular order:

    1. Self-diagnosis. REALLY bad idea. Stop. If you accept TMS as benign, stop searching. Train your will to stop yourself from constant support groups, WebMD, etc. I know they might make you feel better in the short-term, but in the long term it will keep you stressed.

    2. Romanticism. Or in other words, being overly dramatic about your pain/symptoms. Self-talk and talking to others like 'This is never going away', 'I know I need surgery', 'This is constant agony', 'the worst', 'I can't', etc. The brain can be convinced something is far worse than it is, and can pump out stress hormones immediately. I was at a dinner once and the waiter came out and told us some of the food might have gone bad, and immediately some people threw up. It was instantaneous. Soon enough he returned to tell us he had made a mistake, and all was back to normal. That's how fast we can have a strong physical reaction to a thought, so be VERY aware of how you are talking and thinking. Decide once and for all that all negative self-talk and negative thinking is the enemy, and when you catch yourself doing it, stop and replace it with something positive like 'every day I'm getting better!' Sounds corny, but it was a huge help to me. When I was at my worst I'd just listen to inspirational videos on youtube, so my body would be flooded with 'feel good' hormones. That always helped.

    3. Intellectualism. Or in other words, over-analyzing every single thing you feel. 'Well at 3 yesterday I had this pain, I think my chair was 5 degrees too low'...things like that. Let it go, use your will to change your thinking. Learn to say 'f*ck it!' more often, especially when you find yourself dwelling on the details hour after hour. Again, if you really accept the symptoms as benign, why stress about the details?

    4. Defeatism. "This just isn't going to go away. My *insert family member here* had back problems, and I'm just like him/her.' STOP. Again, talking/thinking like this will convince your brain of the worst scenario, and it'll keep you mired in misery. Pay attention, and change the dialogue immediately when you catch yourself.

    Whew, I hope you all hung in there. Waaaay longer than I expected, but I hope it makes more sense. I'll end with this link to some of Dr. Low's best quotes: http://laurabsmoot.blogspot.com/2008/05/101-recovery-spots.html (.: 101 Recovery Spots)

    Recovery from severe TMS is not a game. It takes effort, will, and above all, patience. Read the info to give yourself confidence, but after awhile, drop the constant need for re-assurance and go live your life with as little fear as possible. Call yourself on any the forms of sabotage I listed above (Dr. Low called this 'spotting'), and just work at it.

    You will regain health, normalcy, happiness, etc.

    Don't ever give up on yourself, ever!
    nowa, tgirl, zclesa and 5 others like this.
  18. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi RogueWave,

    Thanks for the more detailed explanations of your journey. And your help understanding some of Dr. Low's material. I started the book and am intrigued.

    What typical TMS folks don't have here (or probably anywhere) is the level of support he describes, with regular meetings and the addition of including family in the education process. He was obviously an inspired teacher. And it makes me think how the treatment TMS sufferers are undertaking themselves might be better explained to ---and supported by, family members. Obviously there is need for this inclusion and education.

    This I really get personally. I see that small stuff activates deep survival circuits which have no real relation to the problem at hand --- and this is particularly true with prolonged stress:
    The conditioned, victim-child, depressive tendencies we all have, along with the fears, and the easily over-activated nervous system all turn into a difficult stew, as you describe.

    What strikes me is that Dr. Low's work, like Dr. Sarno's points out the importance that we become the locus of control in our lives. Not about all the things which happen, but about our inner environment.

    Here are some of my favorites from the "list" you linked.
    • Be self led, not symptom lead.
    • Choose to hope rather than "gloom, doom and despair."
    • Don't blame, complain or explain.
    • Drop the excessive need to control outer environment.
    • Get out of duality. A firm decision will steady you.
    • Have the courage to be wrong in the trivialities of everyday life.
    • It's okay to be average.
    • Most symptoms are NOT dangerous, only distressing.
    • Remove the danger from a situation.
    • Secure your racing thoughts.
    • Thoughts produce symptoms & thoughts let them go.
    • To be simple is to be great.
    • Treat your mental health like a business, not a game.
    • Trust in your own validity.

    Thanks for these great words!

    Andy B
    Last edited: Apr 17, 2019
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  19. westb

    westb Well known member

    As someone with IBS as a predominant symptom I'm giving a big Yes to all of this. Thank you @RogueWave. You've spelled all of this out so clearly. Re-educating the brain and thought patterns is probably the biggest life challenge I have ever experienced up till now. But it's the only way through.
    JanAtheCPA likes this.
  20. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Please do, @RogueWave !

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