1. Alan has completed the new Pain Recovery Program. To read or share it, use this link: http://go.tmswiki.org/newprogram
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A desperate update, opinions appreciated
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."