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It was Complicated, and So was I....

Discussion in 'Success Stories Subforum' started by Back2-It, May 19, 2013.

  1. Back2-It

    Back2-It Peer Supporter

    Warning: this is a long one. I used to post on this form prior to its change, so I may be a new name to most of you. Some of the references are to the TMShelp.com forum....

    The Lead In...
    It was complicated, but many things in life are.

    In December of 2008, I was worried. Worried sick. I was sick, but more on that later.

    I was all over Dr. Google, because I had this bulge in my right side that was growing larger and larger. In the summer of 2007, when I had first noticed it, I was in a sheer panic. I went to the local hospital, where I was assigned a doctor, a DO. He examined me, palpitated the area and said he could see or find nothing. He took X-rays and blood. Meanwhile I had to hit the road for a solid week due to work. During that entire time, I was unable to have a bowl movement, because I was still uneasy about this bulge being “nothing”, when clearly it was something. The lab results were not back by the time I came home, so I called the doctor’s office. He said there was no sign of anything unusual in the blood, and the X-rays proved negative. The doctor told me to lose weight. I needed to. Traveling for two and three weeks out of four did not make for a healthy lifestyle, due to no routines in exercise and bad food choices everywhere. After hearing the news I was relived and then did something about the chronic constipation: I drank half a bottle of prune juice and took a nap. In the middle of my nap, I felt a rumble and ran….

    It was now back to business as usual. Though I could still see and feel the bulge, I decided that I had a hernia. Then it all went to the back of my head, because I was in the midst of helping to care for my uncle and also a sick friend of a friend whom I had known once years prior and “adopted” because nobody was taking him out from his house. He had had a back injury at work, went on disability and then had lost balance and taken a header down his mothers stairs, and was diagnosed with neurological problems. On a good day I was only caring for one, running over to my uncle’s house, where he lived alone, or taking Bob to the store our out for a meal and a drink or to the Off Track Betting. On bad days I would be taking my uncle to the Off Track Betting in the afternoon and Bob to the OTB in the evening. I hated the place, so I would never stay. They would call for rides. I was Good Samaritan Taxi.

    My uncle had been sick on and off with lung problems for at least 10 years prior, due to smoking. Each time he got sick meant a rush drive down to the ER in the city (Chicago), waiting, admission, and a guaranteed hospital stay of at least three days, wherein each day or evening either my sister or I would visit. It was here that I first began to have some stranger than strange symptoms. At around midnight I left the hospital (the hospital was generous about visiting hours), and as I was walking outside to the garage to get some fresh air, my head felt funny and I was getting dizzy. I managed to shake it off, but became really concerned that it was high blood pressure. By the time I got home early the next morning, I was in a panic. Somehow I managed to sleep; then the next morning woke up calmer – until I looked in the mirror. A blood vessel had broken in my eye. I was now off the charts in a panic, and tried to take my BP with a cuff, and I couldn’t do it, so I raced to the drugstore and bought a digitalcuff, where, indeed, my BP was off the charts high – 210/101. I called my now PCP, the doctor who did not see my bulge just a few weeks earlier, and he put me on BP meds and reminded me about my weight.

    My uncle got progressively worse, and this meant more and more trips to the ER and more and more time spent at the ER and the hospital and then even at rehab. He was eventually diagnosed with lung cancer; then all caretaking hell broke loose. During this same time I am still trying to be Good Samaritan with my buddy Bob. I was beginning to feel stiffness in my back and an ache on my side, but I shoved it all aside while this was going on.

    Over the years, my uncle, whom I had great distain for at the time, because of his prior drinking problems and how he had treated my late mother (his sister), cost me in time and in money. He was not well off, so I was helping with some bills. All the while I was helping him I was neglecting my own business. I was unable to spend time to bid on work, so I lost income and was spending more. Soon I was in debt.

    Then, early in March of 2009, my back stiff in the upper shoulders on and off and my side aching, I got home from a trip and went to bed. Then I got call. It was the ultimate wakeup call. The phone rang as I had just drifted off to sleep that night. I didn’t recognize the number, but answered. Nobody was there. However, the sudden rolling over to get the call triggered a pain in my right side that was not describable. I immediately got up and started pacing. I even drew a hot bath and tried to soak the pain out. Finally, after five hours of pain, I drove myself to the ER (I live alone), at 3:30am. I was convinced I had cancer. My father had died of lung cancer, and though I never smoked, I always feared cancer, like many people. The good news was that I did not have cancer, but as pain like I never felt before throbbed away and I gripped the metal edges of the gurney and clawed at the same for some relief, none was had, even after I was told that I had a bad gallbladder problem. I was relieved to hear it was only gallbladder. They then gave me some morphine, which did not even touch the pain. Compared to the kidney stone I had passed a few years prior, the kidney stone was like scraping my knee. It was as if somebody was using a hole saw to drill through me. In a short time, a doctor came in and told me that I had a horribly diseased and inflamed gallbladder, filled with stones and ready to burst. He could not in good conscious send me home. So, this was no hernia, it was gallbladder. My mother had had hers removed, so I was conscious that sometimes gallbladder problems run in families. Out it came, and I spent two nights in the hospital. I was told I was lucky, that my GB had been hours from bursting, and that it did not cause any duct problems and no trouble with my pancreas.

    My sister came and got me and dropped me off. The next day I had to go and get groceries. Still, after one week I still had the stiff, achy feeling in my upper back, and my side was still sore, of course, but I chalked that up to gallbladder surgery. Did I mention that ten days prior to my emergency surgery I had gone back to my PCP and he told me that this bulge was weak stomach muscles, and suggested physical therapy, which I was scheduled to start the day prior to my emergency surgery. Because my stomach muscles were still weak, I decided to schedule for PT in a few weeks when I was healed, so I did.

    The physical therapist gave me some exercises to do and I generally laid low from work and travel and caretaking and took care of myself diet and exercise-wise. The stiffness in the upper back gradually faded as did the pain in the side. I was feeling pretty good, but I was lonely. I had not been involved in a relationship for five years or so. I grew nostalgic for my old girlfriend, so one day I went to her father’s grave, a man that I really loved like a father, and put a can of his favorite beer on the grave – a beer we had shared many times, and poured one out on the ground. One for your Tom! ( About a two years earlier, 2006, I was the only one in the hospital room when Tom passed after a long series of illnesses. It was blazed into my mind, and still is). I then thought that if my GF visits the gravesite and sees this, she will either call or not. I left it up to the Fates. About two months later I got a call. This made me happy and she had ended it with the guy she had dumped me for, so we got together. Life was good.

    Then it wasn’t.

    We began to talk marriage and getting a house together, just as the real estate market was tanking and my house was losing its equity faster than the Titanic could sink. Her ideal for this or that type of home had to be met, and I thought we reached a compromise. Ahh, but there was an additional caveat: her mother needed some of my GF’s income to stay in the house. I remember this caused me great distress, as to how to afford this at the battered economic time in my life. I was still taking care of my uncle and buddy.

    Then, as they say, I woke up with it. I woke one morning in July 2009 with a heavy feeling on my side. Something had gone wrong with the surgery, I thought. Or it was cancer. Or…. I was in a panic, and went back to the surgeon. Oh, did I mention that I was given cypro shortly after the surgery because one of the surgical wounds was slightly infected? Did I mention that I had an allergic reaction to it that created first blisters and then a redness and soreness worse than any sunburn that was painful beyond belief and covered most of my body? The surgeon examined me, and I told him my symptoms and he said that he could not in all honestly tell me it was from my surgery. I went back to my PCP, the same idiot who missed the gallbladder. Why did I go back to him? Because I had had no time to find another doctor, with work and caretaking. Nobody knew why I had heaviness on my side, which was now effecting my entire right side. My PCP told me that a small percentage of people who have gallbladder surgery have pain of unknown origins, and that I would just have to learn to live with it. Still, I suspected otherwise.

    I knew I was stressed, so I began to think that this pain was related to my stress somehow, but I was still afraid. So afraid, that I had a complete breakdown. I admitted myself to the psych ward of the same hospital that six months prior had removed my gallbladder. I was now officially crazy. I told them that I had “health anxiety” and that the various SSRI’s my PCP had tried me out on had no effect and that I was having reactions to them. Even though I had entered the psych ward voluntarily and was “no danger to myself or others”, I was now officially “mentally ill” in the eyes of the state and in the eyes of all my friends who knew and my girlfriend. I had always been the rock, the person who went over and above, and now I was trapped in a psych ward with the use of only payphone twice per day for an outside connect. I was also “committed” to stay at least four nights. I was now not allowed to leave.

    I’m going to speed this story up, but I think this background was necessary.

    Released from the psych ward, I went to weekly classes. I called them my “psycho classes”. There I witnessed horror. I saw people who were anxious and distressed and lived for adjustments in their psycho meds from their shrink. I remember they did not want to be on meds, most, and I remember one poor woman who was taking care of her elderly mother, literally crying because she was trying to resist taking Xanax, though it helped her to cope. She was afraid of addiction. Never a pill man, those classes made me quit the Cymbalta and the Ativan that the shrink in the psych ward had put me on. I remember having my last Cymbalta pill at the rehab place my uncle was staying at. I was done with pills, or so I thought. Had I stayed on the Cymbalta and the Ativan for the recommended period of time my mind might have calmed down enough, especially with the use of the Ativan, for me to not head off into the land of "What if". I eventually went back on Cymbalta, which did nothing, and took Ativan as needed, until I felt didn't need either anymore.

    Around that time I ordered a book at random off the internet about what I thought was anxiety, called “The MindBody Prescription,” by John Sarno MD.

    I read it and dismissed it.

    I was still having that heavy feeling on my right side. I had to have something really wrong. Back to Dr. Google. Dr. Google convinced me I had a back problem. Dr. Google had me go to a neurologist who told me that I had a thoracic disc herniation. He was quite sure. He said he had seen many woman get this, but never a man. He showed me pictures of his relative who had a lower back disc herniation. “He eventually needed surgery, because of the pain and not being able to walk right.” I should have an MRI, said the neurologist. Eventually, I did. The neurologist was right. I did have a thoracic disc herniation. Saw it myself right on the image.

    Oh, did I mention that I was also sent by my PCP, just before I fired him, for an MRI to see if I had MS? I had to wait over a long holiday weekend to get the results. I had been given the CD of my the MRI of my brain, and I concluded that the white dots were lesions, and that I did, indeed, have MS, which if you get as a middle-aged man, usually means an agonizing death within five years.

    So now I knew what was wrong with me. I had a “slipped disc”. Then I consulted Dr. Google’s files on thoracic disc herniations. It was not good. To have a TDH that was symptomatic, with referred pain to the side, which I had, was one in a million, and a good prognosis was not to be had, and surgery was extremely dangerous. I began to feel worse and worse. My entire right side now ached and burned and I felt the stiffness reach into my lower abdomen and side, and now even my left side and leg. In desperation I called a friend who had had back troubles, and she said I should see Dr. Joe. I did. He was very helpful, even over the phone before I was officially a patient. I drove to his office in a panic for my first appointment. Dr. Joe was a chiropractor. But Dr. Joe could help. He promised. He did help. Ever thoughtful, he even tried to get some of his chiro associates to see me closer to home, to no avail, however. They were afraid to touch me, because of the thoracic area of trouble. One wrong “adjustment”, they said, and I would be paralyzed. Dr. Joe took me on. Eventually he dismissed me, saying that there was nothing more he could do for me. Why, I asked him, did it hurt to raise my arms? Why was my side sore. He told me something about nerves crossing in the spine. By this time I had started to re read MBP, and told Dr. Joe about the herniation being to the left and the pain to the right. He repeated that nerves in the spine cross and can cause symptoms on the opposite side. I may have reached my new baseline in life, which would be constant pain and probably further back problems. I was told not to jog or run or do anything that could lead to “further injury”. What injury, I wondered. I had just gotten up one morning with this.

    For 1.5 years I was convinced that I had the worst back problem in the world. One in a million. That meant in the US that only 350 unlucky souls per year were diagnosed with this. I won the worst lottery in the world. Even having AIDS or leprosy was a better choice for treatment and level of pain.

    I was on my own. My pain was increasing , along with my anxiety level. How would I care for myself? How would I take care of my house? How would I now earn a living? I was mentally and physically defeated. I set MBP aside and learned to live with my disaster.


    Along the way, I saw specialists and rehab people, but they just reinforced Dr. Joe’s prognosis. I was doomed. But then things didn’t seem to make sense. Despite the heaviness and soreness, I could still bend over and touch my toes. I could still lift weights. I didn’t understand.

    Then I bought “Healing Back Pain”. I was a little more encouraged. I know that on this forum there are those who are dogmatic Sarno and those who oppose his suppositions on rage and emotion, but THE MOST HELPFUL THING I TOOK AWAY FROM HEALING BACK PAIN WAS THE IDEA THAT THE HUMAN SPINE WAS NOT A COLLECTION OF PATHETICALLY WEAK BONE PARTS. This was the start of my cure. So, I read the book and waited for my cure. It didn’t come. I joined the TMShelp forum and TMS Wiki later on. I found out that many people weren’t cured by just knowing that their problems weren’t physical. I read the forums and looked for MY EXACT SYMPTOMS and could not find them. Ironically, as I read Hillbilly’s cure, I see he did have the same exact symptoms I had, but I never saw them mention in his postings.

    Time went on without much progress.

    I read the following additional books:

    1.Hope and Help for Your Nerves (did not have much of an effect).

    2.Mental Health Through Will Training ( made sense; nothing was new under the sun)

    3.The Power of Now ( too methaphysical for application. It made no sense at the time).

    4.Get Out of Your Mind and into Your Life. (I liked the title—by this time I knew my troubles were psychogenic, and this book had some pointers on how to change your thinking and mindfulness. Much later, after I felt better, I listened to the CD of Tolle’s “A New Earth”. It would have been a great companion piece to Haye’s book, had it been published at the time).


    The Healing...

    Then, two things happened which really helped me.

    The first, was going for massage therapy. I just wanted to feel good for a short period of time, no matter the admonitions by Dr. Sarno that I was just feeding the physical problem. I established a great relationship with this therapist (no, NOT that type), but we liked the same books and had the same dry sense of humor. She explained to me about muscles and what they did, something no doctor did. She said I had tight trapezoid muscles, which are nothing unusual. So, wait, I was not so special after all? I was “normal”?

    Then a friend found me on on Facebook, somebody I had not seen in 30 years. She had had a feeling and dreams that I was not well. She felt it. It turned out that she had had long term pain from Fibromyalgia. We started to have discussions about the pain, and I invited her to go to one of the TMS classes I attended.

    I did see a TMS doctor. He pronounced me healthy, but could not tell me why I hurt where I hurt. I have seen this repeatedly on the forum, where a TMS doctor or practitioner of some sort will pronounce a person healthy, but do not provide sufficient information as to why they are in pain, which often has to do with hyper-tensed muscles. The massage therapist provided this information to me. It seems in reading the Sarno books that he takes time with is patients not only to get their emotional background but to fully explain why their L-5 disc herniation cannot be causing buzzing in their big toe. When TMS/anxiety patients cannot get that full dose of knowledge, especially when they come armed with MRI images, it can result in a less that affirmative diagnosis, in the mind of the patient in many cases, so the fear and anxiety continues.

    Eventually, as I regained more and more of my life, my muscles one by one started to release, but it was not an overnight cure. I was totally confused for a long period of time, because of the different things that were causing my main area of pain; the pain could have been from a botched surgery, from nerve damage from the surgery,an abdominal hernia, or from pain referred from my thoracic disc herniation. I had to sort through it all. For most it is not that complicated. For me, it was complicated.

    I did have to go back in time and explore how I reacted to stress and what patterns were destructive and created tenseness. I am not sure that in many cases a deep probing of the emotional suck hole has to be done. I do feel that , as Dr. Sarno states, that unless you overcome the fear of your symptoms and re-start your life in various ways, you will never get better. Call this CBT or an old-fashioned kick in the pants, I don't know. But it is true.

    I also broke from the forums for long periods of time while I got my life back. If I visited after knowing what was wrong with me, I would just reinforce the fact that something was wrong with me, instead of setting a steady agenda of returning to life.

    There is excellent support on the forum (TMShelp.com) and on TMSWiki, and I would like to thank Tennis Tom and Art and Hillbilly and HellNY, Forrest and many others who offered support and advice. I have chimed in lately, but everything I say is said better by others, especially Hillbilly (now retired) and Balto and TT and Art and Forrest.

    Never, never, never give up hope. Resume your life. Change what you can; think different about what you cannot. Read Ace1’s “Keys to Healing” (on the TMShelp.com forum). They are profound in their summation of all of the books I read above.

    Most of all, there is no one template that can be placed over you as an individual. Your journey out of pain will be as individual as you are as a person.

    God Bless to all.







    "Bridges Freeze Before Roads"
     
    Brant, intense50, Laudisco and 2 others like this.
  2. Sheree

    Sheree Well known member

    Wow. All that you went through and you managed to overcome it. It must feel great now. Thanks for taking the time to write your story - it gives us all hope.
     
  3. Forest

    Forest Beloved Grand Eagle

    Thanks for sharing! I have always loved your posts, and got a lot out of reading your story.
    I have always felt that understanding that we don't have a physical problem, and that our symptoms are benign is the key to recovering. The problem is that it is really hard to get to this point. Having someone explain to you what TMS is so helpful in accepting this approach. This is probably why Dr. Sarno started his first lecture off with the physiology of TMS. Without it, you will always have those doubts that your symptoms are structural. Once I realized and fully accepted that my symptoms were benign I was able to overcome all of the fear I had of my symptoms. The knowledge was the key.
     
  4. Back2-It

    Back2-It Peer Supporter

    I thought the long lead in should be written so people can recognize the stress piled on stress, combined with a specific type of personality --"goodist" -- that builds to serve as the last straw on the camel's back. What I did not include were all the psychogenic illnesses I had had for the previous 30 years, which were never realized by me to be the results of chronic stress and anxiety. All of the previous ones disappeared over time, but this was -- as Red Foxx used to say -- "the Big One", the grabber, that got my attention and would not let go.
     
  5. Back2-It

    Back2-It Peer Supporter

    I agree with you Forest, it is hard to get to the point that you believe your problems are benign, especially when you have been equipped with MRI and transcripts and dx's from numerous doctors confirming the worst.

    Many TMS/MB practitioners mean well and want to see the best for their patients, but, in the case of an MD or a DO that does not feel confident in explaining the physiology of the body, because it is not their speciality area, there should be some kind of "fail-safe" way of explaining this to new patients. I have read where doctors today spend about 5% of their training on muscular and skeletal issues, and with TMS/MB many of the problems come down to what your erector muscles are doing or not doing, I can see where they would want to refer to a structural doctor, who will no doubt instill the fear of a structural problem. Dr. Sarno had years of hands on clinical experience, so he had seen it all, so when a patient came it with a familiar pattern of complaint, he could be positive in his dx, and so could many of the patients.

    This can further become troublesome when the only person a patient sees after visiting the allopathic doctors is a TMS psychiatrist or psychologist or a therapist, who are not qualified to make medical dx's, so the message has one weak leg. The mind practitioner is telling you that the structural person has got it wrong, but the patient knows that the mind practitioner is not qualified to reach that dx, so fear and anxiety can linger.

    This is not the case with all, or even many, but it certainly happens too much of the time where the "success" stories are not being written daily, while the people who suffer do turn up daily. I think that if a MD or DO is to dx TMS/anxiety symptoms, that they should have a protocol that they follow, or refer to either a video production on the physiology of TMS so better practices can be followed and higher healing rates achieved. Maybe Dr. Sarno should become a media star in his older age, and do one super lecture for the ages? I not really joking about that, especially when so many in chronic pain believe it is the result of spinal problems.
     
  6. gailnyc

    gailnyc Well known member

    Back2-It, this is an amazing and inspiring recovery story. I'm so glad you posted it. I know I will be coming back here to read it when I need inspiration.

    I like what you say about TMS doctors. I had a not-so-great visit with a TMS doctor myself. I wonder if you can elaborate more on how you got past your own less-than-ideal experience with one.
     
  7. Forest

    Forest Beloved Grand Eagle

    I would love to find a way to put together that “super lecture for the ages.” It would be quite the spectacle.

    I do think there are a lot of difficulties for physicians in treating TMS. The way I heard it described by one physician is that the medical system is designed to have a doctor visit last 15 minutes. After that the insurance will stop paying. The problem with TMS is that it takes longer than that, probably more like 45 minutes, to teach someone about TMS and make them feel confident with the diagnosis.

    Diagnosing TMS in general will always have its challenges. I do think that the PPDA will make major progress in this area, especially in developing a protocol for practitioners to use in diagnosing TMS, and helping them form relationships with skilled TMS therapist.. There are challenges in implementing a program like this, but having a practitioner association behind this kind of training will go a long way to improving the treatment of TMS.

    Good communication between the physicians and therapists is key. This is something that Dr. Sarno and his therapists mastered, and what probably made them so effective. If the doc and therapist are not on the same page, then the patient is going to be receiving conflicting views about their symptoms which will only increase their doubts. Seeing a good TMS doctor can go along way to helping people accept the diagnosis. Hopefully these docs will have adequate training opportunities in the future.
     
  8. PaperCrane

    PaperCrane Peer Supporter

    Oh my, this struck a chord. Thank-you for taking the time to share.
     
  9. Leonor

    Leonor Peer Supporter

     
  10. Back2-It

    Back2-It Peer Supporter

    Forest, I think this is a big weakness in the whole experience of MindBody treatment. Many doctors today do not have a good understanding of the muscular and skeletal system, devoting, I understand, only about 5% of their studies to it. Because most TMS/anxiety symptoms involved the nerves and the muscles and the tendons, the "TMS" doctor can read the charts and the MRI results, etc., but when -- or even if-- they lay hands on a patient, they cannot tell the patient that hypotonic back muscles can refer pain all over the place, so with a weak prognosis the patient's doubt continues. This is assuming that the MindBody patient even reaches a doctor who subscribes to MB symptoms. If the summation of TMS/anxiety comes from the patient himself, then they are at the mercy of a "TMS" practitioner who may have no knowledge of anatomy. This may be one reason why the TMS forums are not overflowing with success stories like they should be. Dr. Sarno had years of clinical experience, so it was easy for him to tell a patient that his pain was not related to this or that disc, but, essentially, "tension".

    An interactive chart of the most typical "stress" infected muscles and organs would go a long way to helping people. The best example on the internet is found at Anxietycentre.com, where hundreds of symptoms are listed.

    If knowledge is the key, and if the anxious personality needs a bit more reassurance than the average person, then they need access to more knowledge. I found my extra dose of information by accident, from an experienced medical massage therapist, who told me what tight muscles do, and that I was no special case. This was after seeing a TMS doc, who could not tell me why I had pain where I had it. After finding out I was not special, then i gradually calmed my entire systems and everything gradually released.
     
    juderocketqueen likes this.
  11. Back2-It

    Back2-It Peer Supporter

    I surely hope it helps. ;)
     
  12. Back2-It

    Back2-It Peer Supporter

    Basically I was a bit lucky in that i found a good medical massage therapist, who told me that my tight muscles were nothing special, and that they refer pain all over the place. Then a bit of anatomy study myself confirmed it. Then i quit looking for reassurance and worked on calming my entire system down. Oh, I also did have to force myself to use areas of my body that I was babying, and believe me, the initial exercising was horribly painful, but I made sure i was going for overall fitness, but i could not ignore the atrophy that had set in to parts of my body from bracing and guarding in an effort to avoid pain. It is kind of dogma to suggest that one should not focus on a part of the body that hurts, by stretching and exercising it, but if you understand that it is tension and anxiety that is causing the problem, and if this is "benign", then why not beat yourself up a bit, not to "challenge" but to "practice"?
     

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