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My moving-toward-success story!

Discussion in 'Success Stories Subforum' started by Cara, Dec 22, 2016.

  1. Cara

    Cara Peer Supporter

    I’m long-winded, and I feel like my pain story could fill a longish (but very boring) novel. So excuse the length. Feel free to skip any part that bores you.

    I’ll start at what I first thought was the beginning and now see was the middle. In January of 2012, my back started to ache as I was training for a February marathon. I’d had lots of trouble with hips and feet (See? It was the middle!) before, so I attributed the pain to running 60 miles a week. That seemed a reasonable explanation. I took it easy for the weeks leading up to the marathon and ran the marathon in February 2012. The marathon started out very well, but by the time I finished, my hips and back felt really awful as, I thought, hips will do after running 26.2 miles. The recovery was slow but, again, not anything alarming until April 2012.

    In April I still felt off: sluggish and tired and stiff, down on life in general, so I decided that the solution was to kick myself in the rear a bit. I’d been lazing around for two months, after all. So I went to the track to get back into speed work. My back hurt a bit, but I ignored it. I pushed myself hard. Then I went to power yoga, and my back felt worse. I ignored it. By evening, I was very uncomfortable, and by the next day, I could barely move. I went to the doctor and was diagnosed with a “sprained” back and was prescribed physical therapy. It all seemed so reasonable.

    I went to physical therapy for 12 weeks (!) and at the end of those 12 weeks was still in pain. The trouble was, the physical therapist had done everything she could think of. I shouldn’t have been in pain anymore. She told me that it was just a matter of time and that I should just be careful as I returned to running. So I was.

    By mid-summer, I was running again, still with some pain, but then the sesamoiditis I’d been fighting since 2010 got worse. I had had surgery in 2011 and physical therapy for that as well, but none of it helped. I went to a chiropractor who pointed out the imperfections in my back, and then my back and foot hurt worse.

    I went to a podiatrist who examined me very carefully, kindly, and professionally and (bless him) said that he could not explain my pain because the ultrasound really didn’t look like that of someone with sesamoiditis. He didn’t tell me I wasn’t in pain, but that’s what I heard him say. I was angry. I was in SO MUCH pain. In retrospect, I hear him saying that my problem wasn’t what I had been told it was. He probably didn’t know about TMS.

    I took matters into my own hands and tried putting a pad in my shoe to move the pressure over to other bones in my foot and ended up giving myself a stress fracture by running on that pad. In the weeks of healing that ensued, when I had to stop running and move to biking, my back got more and more sore and stiff, and by mid-autumn, both my foot and my back were extremely painful. I couldn’t load my dishwasher. I couldn’t do laundry. I couldn’t exercise. I grew depressed. I grew suicidal. I started counseling for major depression, but eventually I had to quit that because I couldn’t walk the mile to the therapist and then even when I drove, I couldn’t sit for an hour and talk. The therapist told me I needed to deal with my back issues, so I went to an orthopedist.

    The orthopedic doctor said I had some issues with my hips, which didn’t surprise me, after the lifetime I’d already lived, and she ordered an MRI and more physical therapy.

    Just before Christmas, I woke up one morning determined to make the best of a bad situation. I was going to very slowly walk for a bit on the treadmill just to get moving. I was terrified of getting really flabby and out of shape. As I was changing my clothes, I sneezed, screamed, and hit the floor. I couldn’t get up. I couldn’t move for the pain. I had to be heavily assisted to the car and then the doctor, where I repeatedly nearly passed out from the pain. I was given pain-killers and muscle relaxants. A few days later, the orthopedic doctor called with my MRI results and said I should quit therapy and go to a neurosurgeon immediately. A piece of my L5-S1 disk had broken off and was in my spinal column.

    Because we live in the world we live in, I couldn’t get into a neurosurgeon until February, so I spent the rest of January drugged up and lying down, in agony. When I finally saw the neurosurgeon, he cleared his schedule and operated within days. I should have gotten better then, but I didn’t. I was in physical therapy until August, at which time, again, although I was in pain, the therapist declared that she had done what needed to be done, that I was getting stronger and would soon be out of pain. But that was in August of 2013, and by spring of 2016, I was in such pain I sometimes had to crawl around my house. I started to think about death again, which scared me, so I decided to take action.

    I went to a chiropractor who said that the problem was that I was missing most of my L5-S1 disc. It was “bone on bone” pain, he said. He said I should give up running and probably biking too. I grieved a lot about that. He worked on me a few times and then transferred me to the physical therapist in his practice. The therapist was a great guy, and I trust his professionalism and knowledge, but after months of therapy, my strength tests were better, my nerve tests were better, and my pain was not better. It didn’t make sense. So he ordered another MRI and told me to see a neurosurgeon. My pain grew worse and worse as I finished up the school year and waited for my appointment.

    The neurosurgeon told me that yes, I do have disc herniations, but they aren’t putting enough pressure on my nerves to be causing me such pain. Surgery wouldn’t fix anything. The pain had to be bone-on-bone pain. I cried, not because this was bad news, exactly, but because there were no answers and I was in real and debilitating pain. He recommended that I see a pain management doctor, so I made an appointment. The doctor was on vacation and then was backed up, so I couldn’t get in for two months.

    I was depressed—again—about the fact that at the age of 41, I had come to the point of pain management. What did that mean? And what is “bone-on-bone” pain anyway? A friend invited me to a lake swim where, after only swimming half a mile, my back stiffened up. Why should swimming cause “bone-on-bone” pain? It didn’t make sense. Plus, I had previously been counseled not to get shots in my spinal column, and here I was signing up for a doctor who did that. I was confused. Something was off. Something was missing. I suspected that by going to specialist after specialist, I was missing the forest for the trees. So I decided to use my summer “off” to read everything I could get my hands on about back pain and what caused it and what the options were for treatment.

    I went to the local library and checked out EVERY book they had related to back pain. I sat down to skim through every single one with the aim of deeply reading the top six. More than once I came across quick references to Dr. Sarno and his book Healing Back Pain. None of the books I read explained quite what Sarno was about, but it came up enough that I was curious. I went home and downloaded Healing Back Pain on my Kindle.

    While reading Healing Back Pain, I had several Aha! moments. Dr. Sarno raises some interesting questions about the back pain epidemic. And then he described people who weren’t getting better using traditional methods of treating back pain. Hmm. When he pointed out that doctors aren’t trained in psychology and psychologists aren’t trained in physical disorders and so everyone is missing something, I thought, “Yes! That’s what I thought! We need someone who can see the whole picture!”

    When Dr. Sarno described the TMS personality, it was me! I am intense and passionate but careful about expressing my emotions—cautious and shy since childhood. I am a perfectionist, and I don’t enjoy causing conflict. I am my own worst critic, and I am severe. I am a teacher and mother. I am 41, trying to bring up a middle schooler and grade schooler and 115 high schoolers. My grandma just died. I am in the years of responsibility where TMS really becomes intolerable. Dr. Sarno was describing me! I devoured the rest of the book, putting everything else in my life on hold to finish reading it. Then I read The Divided Mind. Dr. Sarno hypothesizes that TMS is a cradle-to-grave tendency in some people, and I looked back on my life. Growing pains as a kid. Stomach pain every time I went to school for 12 years. A mysterious leg problem my sophomore year of college that took me out of cross-country. A weird stomach condition my junior year of college. No one could find reasons for these pains, but they were real! As an adult, I’d had a weird floppy leg, where I lost control of one leg when running. I’d had hip pain. I’d had plantar fasciitis. I’d had surgery for sesamoiditis but then foot pain for years afterward. Finally, back pain that didn't go away after surgery. I’d had a lifetime of unexplainable pains and disorders—when one dissolved another would appear. TMS.

    In spite of this insight, my back wasn’t better. I wasn’t one of those people who read the book, recognized herself, and then was well. So I read all the other Sarno books. (TMS personality?) My back didn’t get better. I started journaling every day. My back didn’t get better. I keep reading. I took my books and journal on vacation. My back hurt throughout vacation. We went to Yellowstone and Grand Teton National Parks. I enjoyed them, of course, but every time we were hiking and my foot slid as I was going down a hill or I stepped in a small hole, pain shot up from the base of my spine to the base of my skull. I would gasp and freeze and cry. My family, used to me being in pain, felt sorry for me and was very solicitous. It’s hard to watch someone suffer.

    My husband had asked, before we left for vacation and just after I read Sarno for the first time, if I thought I could go horseback riding and white water rafting. Sarno and the people on the TMS wiki (I had found it by that time) seemed to say that I needed to get out and live my life. So I had told him to sign us up. The day of, we were worried about what it would do to my back, but we went anyway. We rode up and up and up a mountain in Wyoming. It was beyond beautiful. It was bliss. We came to the ridge and a storm blew up on the surrounding ridges, whipping our hats off in the summer wind, sun shining through dark clouds. It was sublime, and I thanked God and Sarno for getting me there. Then we had to ride down.

    I am afraid of horses, if I’m honest. I’m afraid of heights. After the week I’d just had, I was afraid of slipping down hills. As we descended, I was terrified and in pain as bad as I can remember. I was holding onto the saddle in a death-grip. I was gasping with every fall of the horse’s foot. My daughter, an eight-year-old, turned in her saddle with tears in her eyes. “Does this hurt you so much, Mommy?” she asked. “Are you OK? What should we do??” And then I decided that I was experiencing TMS. I told myself I was safe. I was safe. And I was in pain because my inner child was terrified and throwing a major fit. “So you are just going to let this happen, OK? You are going to live your life, damn it!” I demanded of myself. “You are safe. And you just need to allow the next hour to happen.” And then, as if by miracle, my pain started to melt away. By the time we got to the bottom of the mountain, I was fine. I had done it! I had used my mind to cure my pain! I had made the connection between my emotions and my body and seen a difference!

    The next day, I went white-water rafting. I was fine. This, in spite of the fact that I had been blaming sitting to grade papers as the cause of my pain. Sitting to grade papers was worse than horseback riding and whitewater rafting? Ridiculous! I started an evidence sheet as Alan Gordon suggests and put those two days at the top.

    Back home, my pain returned. I canceled my appointment with the pain management doctor, though, and made one with a TMS doctor. My pain got so terrible, however, that I called my friend that I was planning to meet at the NJ shore and told her I couldn’t make it across the country, and I wouldn’t be fun if I could. I was crying. I couldn’t even walk up my stairs. I couldn’t get myself off the couch into a standing position. I was devastated. She told me (bless her!) that all I needed to do was get well enough to make the flight and then I could lie on the couch all weekend. She packed wine and our favorite movies and said my pain didn’t matter. And then my pain got bearable. As soon as she took away its power, it calmed down.

    After a long flight, I was in some pain when I arrived on the coast, but not terrible pain. I didn’t go in the ocean the first day, being afraid of having a pain spasm if I stepped in an invisible hole under the water or was knocked over by a wave. But that night I was angry at myself for not living my life. So the next day I went in the water. I was fine. We went for a long walk up and down the beach. I was so very happy to have no responsibilities and to be with my good friend. Then we went in the water again. I was perhaps a little too relaxed because as I was getting out of the water, talking to my friend, a wave knocked me over. I was tumbled under water and onto a sand bar. I had been wearing a hat and sunglasses when I was thrown, and as soon as I regained my footing, I asked about my hat. It wasn’t until I had it back in my hand that I realized that my first response had not been pain. It had been that I needed to get my hat. In fact, I wasn’t in pain at all. I had spent the summer afraid of slipping six inches down a hill or stepping off a curb because of the pain those things caused, and I had been thrown to the grown by a wave and not felt pain! I had very minimal pain for the rest of the weekend. More evidence.

    The pain returned on the flight home, but instead of blaming the sitting position I was in all day, I thought that maybe I was stressed about going home. I started to think differently. I think that was when I really believed that it made sense to think psychologically.

    I wish I could say that was the end of my pain, but it wasn’t. The school year started and my pain grew progressively worse, and sometimes it grew weirder. It started to attack me when I put my left foot down while walking, and then it would buckle the left side of my back and would make me almost fall. One day, it was doing that and then attacked my left eye. I was trying to teach while stumbling, gasping, and pressing on half of my face with tears streaming out from under my hand. It was so ridiculous I had to laugh.

    In September I saw the TMS doctor. It was anticlimactic. He listened to my story and then asked me what I thought. “Do you think you have TMS?” he asked. I said I thought I maybe did. He said he thought so too. The fact that he didn’t say he knew I did was hard on me. He also said, though, that the idea that the cure would be immediate didn’t play out in his experience. People don’t go to see a TMS doctor if they get better from reading the book, he said, but he’s seen people get better. He told me that I needed to set the goal of getting back to running. And then I went home. But I wasn’t better.

    Over the next month, everything got worse. TMS, instead of a ray of hope, was one more thing to do. It was one more thing to beat myself up about. Why couldn’t I fix it? When was I going to find time, amid my 80-hour work week and my two busy children, to journal and meditate and exercise? My pain got worse, as did my depression and anxiety.

    I wish I could explain the turning point. I cannot. Maybe it was the day I took off work to sleep and take care of myself and saw my pain reduce in the span of 24 hours. Maybe it was reading Mindfulness and starting daily meditation. I think there were a few people on the TMSwiki that made a big impression on me with their counseling towards self-compassion. I can’t say for sure because I still have days or weeks when I don’t get any sleep or exercise, when I’m stressed and busy and in lots of pain. But now when the pain comes, I don’t despair because I no longer believe the medical explanation that I’ve ruined my back and will be in increasing amounts of pain for the rest of my life. I know that my back hurts and that that means that I’m not taking enough care of myself. When I was first diagnosed with TMS, thinking that was itself a stressor: it’s my fault I can’t get out of pain! I don’t have time to meditate! I don’t have time to journal! I don’t have time to sleep! I suck at taking care of myself! Now, though, I know that I have turned my pain around before. I know that as soon as I get a day or two to rest and take care of myself, my pain will decrease. I know I can do it.

    This Christmas holiday, I have been getting lots of sleep. I’ve been meditating every day. I have eaten good food and indulged in some good wine. I’ve been going to exercise classes but being gentle with myself while there. I joined a yoga studio, and I’ve been allowing myself to be unable to do most of the asanas. I do what I can and I am grateful for what little I can do. Yesterday I went for “run,” but I walked for a minute after every three minutes of running. (I couldn’t have done even that much this fall!) This morning I went for a swim, and I didn’t beat myself up for being out of shape and slow. I swam 2000m and didn’t cramp up! This afternoon I realized that I wasn’t in pain. At all. I looked at my husband and kids and declared, in amazement, that my back didn’t hurt! It’s amazing how different all of life feels when one is not in chronic pain.

    My back is the same as it was a few months ago. I am certain that I still have disc herniations. I still have two vertebrae that are “bone-on-bone.” Those things are permanent. They don’t heal themselves. But Dr. Sarno said that the same can be said for most adults, and most people are not in the kind of pain I’ve been in. Clearly, there was, all along, something else going on because here I am, sitting and writing my very long story and not feeling bone-on-bone pain. Here I am, one more moving-toward-success story!

    Thank you, Dr. Sarno and Alan Gordon and TMS Beloved Grand Eagles and therapists and all of the people who have helped me see the connection between my mind and my pain. It’s good work you are doing in the world, and I am (for the rest of my life!) grateful.
    Ellen likes this.
  2. Ellen

    Ellen Beloved Grand Eagle

    Beautifully written story. Thank you so much for sharing it with us. I know it will inspire many people. Wishing you the best on the rest of your recovery journey. Keep us posted.
    Cara likes this.
  3. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Cara,

    I enjoy reading your story, and am touched by your report of the help you have received from the Forum.

    This seems so important for you, and a good guide for others. Pain is calling you to attend to what is not right in the moment for you. How are you treating yourself? etc.

    And this, to understand that this view of "doing more to be pain-free" is itself pressurizing. It is natural, with our personalities to do this striving and pushing, but you are looking right through this to the truth and relief.

    Thanks for your heartfelt story, and I hope your self-compassion and patience grows, and your pain decreases. You have found so many important, personal keys/insights for your recovery.

    Andy B
    Cara likes this.

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