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New to the forum and excited to be aboard the TMS boat!

Discussion in 'Support Subforum' started by donavanf, Dec 23, 2014.

  1. donavanf

    donavanf Well known member

    Greetings, new friends!

    I'm a little nervous, but very excited to be posting on here, I have been lurking about for a while, feeling INCREDIBLY relieved to know that I am not alone in this "boat". This is a wonderful wiki, a fabulous forum and I have already gained great insight from the many bright minds and brave souls on here. Thank you! I hope to be a regular contributor to the forum, now that I know about TMS, I am in the "I want to shout it from the rooftops" phase. I feel like a Jesus freak, wanting to baptize everyone in the waters of the Sarno!

    I hope the sharing of my journey can help others.

    A bit of backstory, I am an writer, actor and photographer, grew up in Los Angeles, had a VERY strange childhood and somehow in the mix, decided to go to acupuncture school. Looking back at my life from the hot air balloon of my minds eye, I can now see that I've probably suffered from TMS since age 7 or so, when elementary school started. Please see my profile page for ALL the gory details. Bring your reading glasses, I'm long winded....phew!

    Shorter story here: I was a sickly kid, who learned that illness was a quick way out of things I hated. And BOY did I hate school. So I was sick a LOT! Though, years later, perfectionistic glutton for punishment that I am, I decided to go to graduate school. Three graduate schools at once, in fact. What a TMS Petrie Dish! Initially wanting to attend USC film school, I took a detour into Chinese medicine because I was helped greatly by an acupuncturist at the impressionable young age of 19. I now wish I had read Sarno back then, because I probably (maybe) would have seen that I had TMS, not "Weak Spleen Chi" and saved myself four years of school, much hypochondria, and perhaps I'd even be a working filmmaker. Ah well, what's done is done. Beating myself up for what I "should" have done is part of what got me here. I'm done with beating me. Done with "shoulding" on myself. Almost. ;)

    I've always had something "wrong" with me, from sore throats and tummy aches as a child, to diagnosed OCD and IBS as an adult, and later, panic attacks and anxiety, even been on and off some SSRI's and anxiety meds, but I'd luckily never really had any kind of chronic physical pain. That changed a bit, after my mother died of cancer in 2000 and my father re-married a wicked witch who estranged him from the family. This woman literally stalked my dad, married him, cut me and my sister (and his 9 year old granddaughter) out of his life. Worse yet, she went on to dig up my mothers remains, in a ghoulish grave robbing plot of sociopathic mind control. Shudder. Or shoulder, as the case may be. *my shoulders are the current focal point of my tms*. I say "current" because while I'd had my "back go out" more than a few times 30's, this really got bad in my 40's, early 2013 to be exact, when I had to accompany my panic disorder/fibromyalgia riddled sister (tms, tms, tms) to NYC (the ultimate Autonomic Overload City), to see my niece graduate from film school. In addition, my sister had not been on a plane in over 30 years and wanted me to be her travel companion and safety net. I wanted to be a "Good" brother and uncle, but didn't really want to go, couldn't afford the trip, also hate flying, have a loving but rather anxious relationship with my sister and I myself have had my share of panic attacks. I also felt (and I still feel guilty for even saying this) very jealous of my niece. She was going to graduate from my old dream that never came true. Film school. I felt deeply conflicted, but my gut instinct was to respectfully decline and bow out. I did NOT want to go. But my sister offered to pay for the trip, guilted me like crazy and I went along for the "ride" like a good little goodist. And what a ride it was. A roller coaster ride. And not a fun one.

    It was go, go, go, do, do, do, run, run, run from beginning to end and I came back to LA in emotional tatters, spent, financially broke and exhausted. I felt like I needed a vacation after my "vacation", but instead of resting up for a few days, I immediately returned to my drab and draining day job from the tornado of the trip, and shortly thereafter developed a strange series of symptoms that spanned the gamut from migraine headaches to lower back pain, TMJ pain, panic attacks, chronic fatigue and finally, shoulder blade and neck pain. The former is mostly gone, but the latter (shoulder and neck pain) is still with me, though MUCH better since a kindly stranger came into my day job and asked me (as I was doing some "posture exercises") if I was in any kind of pain.

    I was in horrible pain, daily. My neck felt like a stone pillar and my shoulders felt like they were in the jaws of a T-Rex. My jaw felt like it was in a metal vice. I said, "Yes, I am in chronic pain, in my neck, jaw and upper back, but I am working on it. It's my bad posture and weekend job, I'm a professional photographer. Tough on the body. You know, all that PhotoShop and camera lifting. I'm not getting any younger. It finally got me. RSI. I've never been much for exercise, but now I have to. I've been seeing a chiropractor, a rolfer, an acupuncturist, a physical therapist and a masseuse. My PT has me doing all kinds of foam rolling, corrective exercises, postural corrections, you know..."

    He said, "Is any of that stuff helping you?". I said, "No...but it takes time". He said, "Look, it's none of my business, but I have a question for you, when did this start?". I said, "Oh, well, it started when I lifted a bunch of heavy suitcases on a recent trip to NY". He wouldn't fall in for that, thank GOD. He then said, "Heavy suitcases, huh? Um, was the trip stressful?". I told him it was hell on earth. Then he asked me if I had been under any stress before that. When I told him my mother had died a horrible death of cancer, my dad left me, my life turned upside down, I had to give up a lot of my dreams and I hadnt been the same since, he (ironically) put his arm on my shoulder and said, "I'm sorry to hear that, it sounds like you've really been through a lot. You've really had to bear a heavy burden of sadness and loss. That has got to take its toll way more than your posture or carrying a camera ever could..."

    Tears welled in my eyes. Then he asked me if I liked my day job. I said, "Well, I LOVE photography! But no. I F***ING HATE this HORRIBLE retail job!!!" He said, "Sounds like you have a lot of anger, and why wouldn't you! You're human, after all...". I said, "Aw, no, not really, I never feel truly angry, at least not consciously". A glint formed in his eye. "Not CONSCIOUSLY"...."What if I told you I thought your neck and shoulder pain may have less to do with suitcases and cameras and more to do with stress, tension, grief and a mountain of repressed and very real, un-conscious RAGE?" I looked at him like a deer caught in the headlights. The headlights of truth. I knew, deep within, this man was saying something huge to me. Something TRUE. He then recommended a book. You guessed it, "Healing Back Pain", by Dr. Sarno. He said, "Just promise me you'll read it"...."It saved my life, I used to be you, and now I'm 100% pain free".

    I read the book. Cover to cover in 2 days. At first, I didn't think much of it, in fact, I kind of wondered if it was baloney. Keep in mind, I'd had YEARS of school that focused on the body and I was very convinced that my posture was the cause of my pain. And worse yet, I really trusted my Physical Therapist (a beloved former anatomy professor of mine) and put a lot of weight into her words. But something strange happened as I read. My pain got a tiny bit better. So I read it again, and this time, I saw what I didn't want to see. I saw myself on every single page. A goodist to the core, a somatizer since childhood, Type-T, perfectionist, angry, anxious, narcissistic, neurotic and in deep denial of a tornado of inner turmoil. I was a four alarm fire and my pain was merely the fire alarm.

    My superego was having a tug of war with my ID and my shoulders and neck were the rope that I was hanging my ego with.

    I began to stop worrying so much about my posture. I stopped physical therapy and started psychotherapy. I learned to say "no" without blaming my back or feeling guilty. I tried, with difficulty, to have more fun and think less about pain. Not easy. But the more I did this, the better I felt. I began to realize, it was my MENTAL posture that was the cause of my strain (and pain), not so much my slouching. This paradigm shift has been equally powerful and challenging. Thank you Ace, for the keys to healing. I read them DAILY. "I take my time, forgive and let go easily". "I'm calm relaxed, patient and confident". "I am always easy on myself". "I am comfortable with doing nothing." Seems easy. But it takes a lot of doing to undo! Or vice-versa.

    Lather, rinse, repeat!

    I'm not out of the woods yet, but I'm getting there. I've read ALL of Sarno's books, Dr. Schechter's book, Steve Ozanich's book (genius), half way through Dr. Schubiner's book, been journaling (hello flare-ups!), continued with the psychotherapy (much better for TMS than physical therapy) and I've even slowly started shooting photos again, my true passion. Next, I want to go back to my earliest desire, acting. One step at a time, slowly re-realizing my dreams, seeing how hard I am on myself and curing myself with knowledge. Self-knowledge. It's the real deal. It's the yellow brick road and the ruby slippers, the alpa and the omega.

    I applaud everyone who has gone through this journey, overcoming TMS is the hardest thing I've ever done, no doubt. And the most important. I'd say, I'm about half-way home. I have an appointment to see Dr. David Schechter in January (I am blessed that his office is less than a mile from my work) and while I have flare-ups, and many ups and downs depending on my stress level (which is currently high due to the TMS-mas season), in general my pain has gone from a 9 to a 5. I'm shooting for a zero. Heck, I'm shooting for a three. But zero would be nice! I'm keeping the faith, because I've seen it get to a zero, and ironically, the moment I say, "Hey! My pain is gone!!!!"...it returns. :(

    Maybe some of you can enlighten me to why you think that is? Any ideas? I have some of my own...but I'm open to any and all input. I am here to keep learning! The more I learn (and unlearn), the better I get. And I am open to any questions anyone wants to ask me. I'm new at this, but I've had TMS my whole life, I'm just new at recognizing it! So, ask away. Happy to answer.

    And speaking of happy (the best cure for TMS), Happy Holidays to everyone reading this, a bright new year and much luck in your journeys. See you all again, soon...

    PS- I am SO excited about "All The Rage". How wonderful is that!!!!!! A film about Sarno!!! Hooray to the filmmakers!!!! Can't WAIT to see it!!!

    PPS- Has anyone on here had shoulder and neck tension as part of TMS? I hear a LOT of low back pain stories, but few shoulder blade, upper back, neck tension stories. Or maybe I've just missed em'? Yes, I still have that 1% doubt this is TMS, get back on my foam roller, obsess about my posture and fall back into pain! I suppose this in itself is classic TMS, but my mind LOVES to second guess itself.

    PPPS- I re-edited this 3 times and added 2 P's to my S's. Hello, perfectionist!!! :banghead:
    Last edited: Dec 23, 2014
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  2. Ryan

    Ryan Well known member

    I to was once where you were. You have a lot of knowledge already which is good. Once you gain enough let go of seeking more and put the knowledge into action. Sometimes less is more, as we continuevto look so hard for answers to find. Some need to so they can strengthen there belief, thats ok, we all heal differently. You don't need to find the exact thing thst causes tms. It is stuff in our past that causes it and cutrent stressors, you can either change what happend in the past if you can or let it go. Us tmsers want answer to everything in life and don't let it unfold. We resist where are at the moment and always wanting something better, there is the tension.

    It's about finding out why you are the way you are, ie perfectionist, low self esteem, etc. Your deeper self knows and when your ready you find the answers. People will help and support you along the way but in the end you will be your ultimate healer, along with a higher power(mine is jesus). Let go live life for today, connect with people, and find your purpose here, we all have one.

    That's awesome you get to go see Dr schecter. You are fortunate to have that so close, as a tms doctor can strengthen your belief in the dianosis. Until you can overcome the fear of the symptoms they will persist. As the great doctor said if one is preoccupied with the symptoms they will persists.

    I to had upper back and neck pain that is gone, along with a bunch of other symptoms. I can tell you mine was tms, tms can hit you in a multitude of places in the body.

    Wishing you the best of luck. Faith and perseverance go a long way in the healing process. Never give up, when it's your time to heal you will heal. We are what we believe.

    Last edited: Dec 23, 2014
    Anne Walker likes this.
  3. David88

    David88 Well known member

    Thank you for your beautifully written story.

    I am in the midst of my own lifelong battle with TMS.

    What are Ace's keys to healing that you mention?
  4. IrishSceptic

    IrishSceptic Podcast Visionary

    welcome , Im only a recent member too having read Sarnos book in August and then all the ones you mentioned apart from Howard Schubiner's.
    yeah I have shoulder and neck,upper back pain that mostly came about when I got serious about pilates. my lower back improved and then those areas were attacked. I was so confused at the time ! But it makes sense now.
    I'm also trying to be patient with myself as I have a lot of work to do and find a lot of resistance to actually doing it.
    good advice from Ryan.
    once youve read a few books, really try to get to work on it. Thats one regret I have so far, procrastination.
    Anne Walker likes this.
  5. donavanf

    donavanf Well known member

    Thanks for the comments so far, everyone. David, the keys to healing are here:


    Ryan, thanks for the encouraging words. And my spiritual go to guy is Jesus, too! I'm a left leaning, non legalistic, grace based Episcopalean. I love the Message Bible version of Matthew 11:28: "“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

    That sounds like the antidote to TMS if I've ever heard one!

    Speaking of Jesus, I am very interested in reading Walt Oleksy's book, "God Does Not Want You To Be In Pain". Have you read it? I love Walt's posts on this forum and his book sounds terrific.

    And speaking of books, I recently read a book called "Hardwiring Happiness", by Dr. Rick Hanson, great stuff in there, on the power of mindfulness and neurally hardwiring positivity. I recommend it to my fellow TMS'ers. He also wrote a book called, "Buddha's Brain", also quite good. And yes, I know, I've over read and under-done! I think a huge part of my TMS is in no small part due to the fact that I can't get OUT of my mind (psyche) and drop into my body (soma). It's especially challenging when being in one's body isn't much fun! :(

    Any thoughts on how to "walk the talk", anyone? I can't stop overthinking! I want to learn to like living in my body, but it's a challenge, because I feel like it's been a nearly lifelong enemy...which is certainly not a good attitude, but a hard habit to break when you've spent a lifetime analyzing and worrying instead of just enjoying the moment and "being here now", as Ram Dass so eloquently said in his famous book.
    Last edited: Dec 24, 2014
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  6. Ellen

    Ellen Beloved Grand Eagle

    The only options of where to focus your attention aren't just mind or body---there's a whole world out there! Try focusing outside yourself--on nature, on animals, on other people, on an absorbing activity. This is what I try to do when I am miserable, and as long as I remember to do it, it works pretty well.

    Best wishes to you....
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  7. heleng

    heleng Peer Supporter

    Hi Donavanf

    Thanks for writing your post. I have a very similar story in terms of life events creating health problems. I can see now that I too have had TMS for a very long time and that it runs in my family. I think some families suffer with TMS and there is almost a culture that has developed and that each generation is blighted by it. I feel each person's TMS is very individual to them in how it manifests itself and the triggers and therefore the recovery will also be very personal. I feel I have a lot of understanding now and have a growing sense of belief but the pain is still bothering me. I have pain in my shoulders and lower back. I have recently been through a no pain phase, the first for 2 years and as soon as I became aware of the lack of pain it returned. It was frustrating and upsetting and the more upset I felt the worse it has got. I have also realised that if it went away once it can go away again and this time I feel the trick is to try not to care whether it is there or not. Easy to say, hard to do, but not impossible. It has taken me years to find out what all my odd maladies are caused by and I feel my recovery will be quite slow too as even though i hate the pain I have become so familiar to it that being without it is a strange kind of loss.

    Thanks for telling everyone your story, it has really helped me continue to have belief in recovery and more happiness in the future. Keep going and don't give up on yourself as you deserve to be free of your pain.
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  8. kev55555

    kev55555 New Member

    "Yes, I still have that 1% doubt this is TMS, get back on my foam roller, obsess about my posture and fall back into pain! I suppose this in itself is classic TMS, but my mind LOVES to second guess itself."

    I'm right here with you. I've even had TMS in the past, gotten the pain to a zero for long periods of time, with the occasional flair up during stressful times (right now, which is why i'm here)

    This time the pain is in a new spot and it's so easy to convince myself it's from all my sitting. There's so much information out there now on how bad sitting it for you. It's hard to fully get to that 100%, when I'm not sure how to know if maybe I am just sitting too much.
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  9. Anne Walker

    Anne Walker Beloved Grand Eagle

    Hi Donavanf. I enjoyed reading your story. I had very intense and stubborn right sided shoulder, neck and head pain for well over a year. It is all better now!! I could tell you lots of stories about the various places my pain has expressed itself. I have a very creative mind and it sounds like you do as well! In your original post you asked why the pain returns once you consciously recognize that it has dropped to zero. I used to wonder about that as well and it got to the point that I avoided celebrating too much when I was not in pain. That is not true anymore. Now I drink it in when I am feeling good. For me, I think the reason the pain would return with a vengeance when I reflected too much on the absence of it, is that then the pressure was suddenly there to do and be all the things I dreamed for myself. With the pain gone, I am left with myself, no more distraction. I feel like I am learning how to live without the pain, drama, struggle, crisis... I have also had a lot of anxiety, panic attacks, ailments... I don't have a whole lot of experience feeling ok, relaxed and good. So that is what I am working on. Also, I was in the film business for over 20 years. Personally, I don't think you are missing out on much. I am trying to recover from 20 years of working in the film business. The honest and good hearted are generally in subservient positions, living paycheck to paycheck and expected to be grateful for the privilege. The ones with creative control and power tend to be motivated by self promotion and preservation. I don't want to seem bitter. I was very successful in the film business, but I was not happy, and there are very few people I truly respect in the film business. Documentaries are of course a different story.
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  10. Forest

    Forest Beloved Grand Eagle

    Heya, @donavanf, welcome to the forum! I loved reading your story. You're a great writer and I'm really happy to have you join us.

    Putting things into practice really is the challenge, isn't it? I love Ellen's advice. Have you tried mindfulness meditation? It might provide a solid foundation. The goal is to learn to slow down and develop more awareness about how you respond to things. Later on, this gives you the opportunity to choose how you respond, but at first it is just a lot of practice slowing down, letting go, and developing awareness.
    I'm a big fan of Dr. Hanson. He's brilliant and a terrific communicator, tying together neuroscience, practical psychological research, and Buddhism.
    I had symptoms in my neck and the upper ridge of my trapezius for a very long time, but really, in truth, the actual symptoms don't matter. That's just a distraction. The real challenge is, as you've noted, putting things into practice, which means slowing down.
    Based on your other posts, I bet you'd really enjoy Howard Schubiner's book, @IrishSceptic. There's a lot in there.
  11. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi donavanf,

    Thanks for your in-depth post.
    I'm keeping the faith, because I've seen it get to a zero, and ironically, the moment I say, "Hey! My pain is gone!!!!"...it returns. :(

    Maybe some of you can enlighten me to why you think that is? Any ideas?

    For me, some fear arises at this affirmation about my healing. I wonder for you if it is a little doubt, which you also speak of, and fear arising. I think you are doing well to see how your deep education takes time, and how pushing for perfect results is part of the root of the syndrome.

    Here is Schubiner's post on fear, which I like because it is not a certain answer. It is a list of possibilities. That in itself is a sort of softening around "getting it right." I try to have compassion for my fear and doubt. For me personally, that is the medicine I need, regardless of pain results... Rejecting myself for fear or doubt also needs to be seen and held lovingly. And when it is, this is a deep medicine for me...


    Good luck in your Journey.
    Last edited: Dec 28, 2014
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  12. IrishSceptic

    IrishSceptic Podcast Visionary

    @Forest made a similar remark in his youtube video which I just watched today funny enough after pointing some ''Fibro* fighters'' to it.

    He said his pain disappears when he isn't trying, which is similar to what I've found.

    I have been thrown by my right foot going into serious pain recently > the doubt starts and that's especially bad for me as I am still a little sceptical still and trying to find faults in Sarno and others!

    *Fibro fighters don't want to know and its sad.
    Its kinda become an identity and given Forest was diagnosed by Goldenberg (one of doctors who coined term Fibromyalgia) it should really be brought to the attention of Fibromyalgia sufferers that people like him exist.

    I can empathize as can many others as you feel it has taken over your life completely, burrowing into every aspect of your existence. the first thought on your mind in the morning and the last thing you think of at night(if you can get to sleep). its a horrible existence.

    This is what makes the current medical approach all the more frustrating. Yeah, lets just ''manage your pain''. the reason researchers have been bamboozled for so long and will be for another while > they're looking under the wrong rock.

    Interesting that the idiopathic conditions that Doctors can't pinpoint the cause of , can then conclude there is no cure. I think because Doctors tend to be competent people with better mental habits/coping mechanisms they seem to overlook the level of the general population's way of dealing with certain things.

    away to take out my anger on a pillow :D
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  13. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Irish: It seems so unfair to that innocent pillow!
  14. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    And, donavanf, it may help you to relax if you contemplate that once you have a 50% reduction in pain, you have done so much learning that the full blown syndrome is essentially banished. You can't unlearn this stuff. There may be setbacks, but overall, the progress is inevitable. And if you're in pain, you have the tools that fit you personally, in order to take the right action.
    donavanf likes this.
  15. Forest

    Forest Beloved Grand Eagle

    I was on a phone call with Alan Gordon last Sunday and we came up with a term for what we think is most important in TMS healing. The term we came up with was "Symptom Response Modification" (SRM) - in other words people need to modify how they respond to their symptoms. Alan is the most talented TMS clinician I know, and I hope the term takes off.

    I think that that is the most important thing, really. The symptoms want to distract us and give us tension. We just need to find other ways to respond to them. Different people have different styles for how to do this, of course. One way I like is to simply let the symptoms know how small and insignificant they are. But that is what the first half of Alan's TMS Recovery Program is all about. Further, when I see people on the forum who have been struggling for a very long time and they finally make gains, it is often through some form of internal tranquility that they found through symptom response modification. Once you get your "head right," your body will follow... It's all about your "mental game."
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  16. Enrique

    Enrique Well known member

    Welcome Donovan! You are in the fortunate percentage of people to believe the diagnosis. I was just reading The Divided Mind again and was reminded that only 10 to 20% of people believe that TMS could be the cause of their pain. No wonder none of my friends or family have believed their pain is psychosomatic :). Frankly I've quit trying to convince anyone. I just put it out there and plant a seed.

    Hey, I am from So Cal too. I grew up in North Hollywood... I know it's miles from Hollywood, but still it was cool to run into stars once in a while down there. I left when I was 18 so it's been a while but some of my school mates were in commercials and TV shows. In fact, my High School (Notre Dame in Sherman Oaks) had a lot of child actors and children of the industry. It was surreal.

    Anyway, glad you are here and making some headway.
    donavanf likes this.
  17. Shirley

    Shirley Peer Supporter

    Donovan you sound like a brilliant self-aware person with so much "mind" action!
    "Distress is based in the mind" audio. "How often are you giving yourself permission just to be you?"
    "Dare to be you in each moment." Your life is advancing simply as it must and will. Isn't that a comfort? :)
    Keep up the good!
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  18. Forest

    Forest Beloved Grand Eagle

    Dang, @donavanf, you get the monthly award for the most legendary introductory support forum thread. You've got 16 replies!
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  19. Forest

    Forest Beloved Grand Eagle

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  20. Forest

    Forest Beloved Grand Eagle

    (couldn't resist)

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