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Discussion in 'Support Subforum' started by wannarun, Jan 9, 2016.

  1. wannarun

    wannarun Peer Supporter

    I feel an overwhelming need to post my story somewhere. I guess I will put it here. Let me know if there is a better location. If you or a loved one suffer from pain and no one seems to give a clear reason to the madness I would suggest Mind Body Treatment. I have struggled with lower leg and back pain for about 3 years now. The only thing that has helped is TMS and getting active with my body. I am not 100%. I kept waiting for my life to be perfect before I wrote this. I guess that would be common with a TMS personality type. I decided to write this before I am perfect. I would say that I am "better". I am not "fixed" and that is ok. I am at peace with my current state and that is what is making the difference.

    If any of this resonates with you let me know. If you have additional questions or think clarification on something would help you let me know. I think TMS is similar to depression in that a lot of people don't understand. We have wristbands for cancer, but TMS is silent. It is confusing, painful and lonely. I've heard from some of you. Acceptance is difficult, but out of the many things I have tried this is the only thing that has helped.

    I am envious of those who can go through the 42 day program and get better quickly. For some of us it just takes longer. I stopped counting days. It was making me crazy. Just knowing a general direction is good enough for now.

    The Precursor

    My pain started in October/November 2012, but looking back the roots started in 2011. I was working at a new company and I got a phenomenal opportunity to do some additional consulting work outside of my 9-5. I grew up in a very hard working family. The belief that you should bust your butt from dawn to bed was well ingrained in me. I would get tired, but would just "muscle" through. Lots of other people worked 70 hour work weeks I didn't see how I was any different. In the beginning of 2012 I decided to up the ante and train for a half-marathon. I really wanted to see how far I could push myself. At the same time, my direct supervisor at my first job was going through a very tough personal issue. He was missing lots of work, I was picking up most of the slack. At first I felt bad for him and then I began to feel very resentful. Between working crazy hours, spending a large number of those being resentful, drinking caffeine like a fish and running crazy I was setting myself up for something bad.

    Pain Stage 1
    I did well in my first half-marathon 1:46. Not bad for a first timer. Convinced I was, "Born to Run" I got some additional books upped my mileage and intensity at the same time. This is a horrible idea not advisable. I got my first dose of shin splints. It hurt. After 6 weeks it was still not gone. This was highly unusual. I had also had back pain off and on my entire life starting at age 17. It would come and go. I chalked it up to an old injury and didn't pay it much attention. The back pain also seemed to come back. It wasn't that bad, but somehow seemed to be related to the madness in my legs. It didn't fade away like it used to. I remember thinking, "I think I really broke my body this time." I figured it was time to see my primary care Dr.

    Primary Care Round 1
    I thought I must have a stress fracture or something like that. I figured I would get some X-Rays maybe a cast or something and be back to it. As I explained the symptoms to my Dr. he seemed a little puzzled. The one thing I remember is that the sensation kind of reminded me of the sensation when you lose oxygen or blood flow to your limbs. Like when you sit on the toilet too long. That was the best I could explain it. He gave me a strong anti-inflammatory (MOBIC). It did nothing. I went back in two weeks and he decided to do a nerve conduction study. It came back normal. He realized that at this point there wasn't much additional he could do for me and sent me to an ortho.


    Ortho 1
    I would explain my symptoms to the nurses and they would always look at me like I was insane. I guess my symptoms did not fit the possible diagnosis from their training. The ortho had a full bone scan done of my body. It revealed nothing. I took this as a sign that I should try and run again. Since nothing was wrong with me, why not.

    Running did not go well. I had never gone to a PT, but I found one who was a runner and specialized in helping runners. I thought surely this guy could help. It helped a little, but not much.

    Running Club
    The first ortho thought I just needed to run better so I joined a running club. One of the women was a PT. She recommended I see an ortho who specialized in runners.

    He basically said stop running and had no idea why this would happen. He sent me to one of his PTs

    Caring and clueless. The woman desperately wanted to help me. She tried Graston technique on my legs. It did help me feel a little better and I could do a little more running, but the underlying issue did not resolve.

    7/1/2013 - No more running. I also stopped wearing socks. It seemed to help. Even at work. I just wore crocs. It was weird, but people loved me and just accepted it. Even in Winter.
    I gave up it was too much.

    Poison Ivy
    I got a nasty case of poison Ivy and steroids to clear it up. Interestingly, the steroids seemed to fix my issues. I felt great. My dr. seemed a little puzzled and thought my issues might be auto-immune related. I found this very interesting when I later learned more about TMS and some of Sarno's comments on steroids. He noticed the same effect. Dr.s just mention that steroids tends to make everything better.

    Pain Back Primary Care Dr. (MRI Time)
    Finally, my Dr. decided to order an MRI. It came back, minor disc bulge. Ahh, ha bingo. I did some reading online and thought I could do some core exercises to fix it. Unfortunately, it didn't seem to help.

    I found a spine clinic. I wanted them to see my MRI and tell me how to fix myself. They were like, you are totally fine go do some PT. I told them I already saw 2 PTs. They said go see our neurologist friend.

    Again caring and clueless. Here comes the drugs and a diagnosis. Peripheral Neuropathy. Basically, we have no idea what causes this, how to fix it and you'll have it forever. You are F*c%ed. Not what I want to hear. My mom, step-dad and myself are intense problem solvers. We were going to figure this out. I went to the Cleveland Clinic read all about small fiber and all the other types of neuropathies. More drugs, more skin biopsies and no better off.


    A friend of mine knew a PT that specialized in neurologic disorders. Bingo, just the man for me to see. He had a big personality and was very confident. He was a walking placebo effect. His clinic was like walking into a fountain of youth. He just had a certain way about him that made you believe you were going to heal. Except I didn't. I would do a little better, but not a cure. Unfortunately, my insurance visits ended and I didn't know what to do. I kept doing the exercises. I would talk with people who used them and got cured. I was using the McKenzie method. I just kept thinking, maybe I'm not pushing my end range far enough. Then I had a miracle week where I believed I pushed far enough and felt better. It didn't last. I went back to the PT and told them what happened. They seemed inclined to push my harder again. This time I pushed so hard that the pain went away on my left side and moved to my right. I actually think I really hurt myself, but my TMS also latched onto it.

    In-between visits to the PT I went to see a chiropractor. The guy was an actual crook. A wealthy crook. One of my friends pointed it out to me early. I stopped going, it was very disturbing.

    Bad Thoughts
    I was starting to have some really, really bad thoughts about life at this point. I didn't really share them with anyone. I knew I didn't want to die, but I didn't want to live another 40 years with the kind of pain I experienced on a daily basis. Like an atheist in a foxhole, I prayed to God, but my relationship with him was weak. I felt alone and uncertain. I think my mom knew for sure that I was not in a good state. When my wife would take the boys to a gymnastic meet for the weekend, my mom kept popping in. I just wanted to be left alone, but I think she was honestly scared I would do something dumb or permanent.

    I didn't know what to do, but the months of PT were just not working. I didn't know what to do. My neighbor worked for a neuro surgeon. I figured it couldn't hurt. He did another MRI. He concluded there was nothing to do. I bullied him. I wouldn't let him leave. He was going to do something. He finally agreed to do some injections. The first one did nothing. At some point, I got the idea that what was wrong with me was my SI joint. Someone just needed to figure it out. I asked him to do my 2nd steroid injection in my SI joint. I also purchased some new shoes I wanted to wear. Where he placed the needle was the exact spot of my pain that day. I thought, "yes, he got it. That was it. My SI joint was messed up. This will fix it." My belief was very strong. In a day or two, I was able to wear the new shoes with socks that I wanted so desperately. I found my diagnosis and treatment. I was happy. Except it didn't really seem to make things better. The third shot did nothing and I still had pain, but perhaps a little less.

    Chiro2 and PT4
    I was done with opinions. In the words of Gregory House, "The fastest way to diagnose is to treat." I went to a chiropractor that my friend from earlier recommended. This guy was not a crook and did give me some treatments and ended them when it seemed they would no longer make a difference. I respected that. I also asked a PT to treat me for SI joint. He did, but the pain did not abate.

    Ortho 4
    I learned about stem cell therapy and decided to get an injection of PRP Platelet rich plasma. It was only $350 what the heck. Worst idea ever. It caused massive inflammation and was intensely painful.

    Pain Mgmt
    The ortho unsure what to do next recommended I go see a pain mgmt friend and maybe he could do some magic with my sciatic nerve. I went. The Dr. was not caring and knew exactly. I handed him my heap of medical information. He was furious. He said, you just have pain, don't worry about it. I couldn't comprehend. What about my SI joint, feet and all the other host of symptoms. He told me I needed to stop seeing Dr.s and that I was fine. I tried to ask more questions, but he stormed out of the room. He told me I needed to get active. He agreed to try a cluneal nerve injection, but only if I would start exercising. Easy enough, you do the shot and I'll ride my bike. I tried asking more questions, but he just stormed out of the room. I thought he was the worst Dr. ever. In hindsight, he was probably the one doing me the most good. I just wish he could have explained it better.

    After the PRP I had intense pain. I could not go to work for 5 weeks. I was able to work from home. I lay flat on my stomach with my laptop propped up. I don't think I realized how dysfunctional I had become. I wouldn't go anywhere, move or do anything. No restaurants, no sitting. I was afraid to walk the dog. The pulling on the leash might pull my spine out of place more. I was a complete wreck and unable to do anything. I could go to work and my house. That was it. Even at work I had stopped going to lunch with friends. I would come home for lunch trying to get enough energy to get through round 2 of my day. Several times throughout my day I would find a closet and lay down for 5 minutes just to help the pain subside. This certainly wasn't a way to live.

    CEO Time
    This was very disturbing to my company. The CEO called me. He was very generous, but I had not spent much time with him personally. He decided to make it his personal mission to help me. He told me I needed to speak with 2 of his friends who had both battled with back pain. I really didn't want to talk to anyone about it, but at this point I felt I owed it to him. Also, my co workers were concerned and every one had something for me to try. The only thing suggested that I had not yet tried was acupuncture. I gave it a try with not much of an effect. I did really like the acupuncturist however.

    Door #1
    The people he had me speak with could not have been more different in their approach to dealing with back pain. The first had multiple surgeries and fusions. He had various medical ailments and I actually had to wait some time to talk to him due to some other physical issues. In his case the surgeries had helped, but it seemed to be temporary and then there was some other issue or additional surgery required for another body part. At the same time I was investigating the Laser Spine Institute. They said I qualified for surgery with my mild bulging disc. I noted that others didn't think surgery was necessary. The told me they used advanced techniques and were different from others. I was a little skeptical, but kept an open mind.

    Door #2
    I wrote to the CEO's 2nd friend. I gave him a summary of my condition. He immediately wrote back and said don't see anymore Dr.'s until you talk to me. Hmm, very odd and kind of reminded me of the pain Dr. It was Wednesday we wouldn't be able to talk until Saturday morning.

    Within 15 seconds of the conversation the person told me he knew what I had and to make sure I had a pencil to write everything down.

    At this point, I'm going to pause for a second. I had been searching for years, seen numerous Dr.s, scoured the Internet and after reading a brief summary this guy had it figured out. How was this possible? I was completely skeptical. He told me I have TMS and to read Dr. Sarno's books. He said he had suffered just like me for years. The only way, was to fully accept the diagnosis and I would be better.

    What? Like WTF? This was crazy to me. How can this be possible? I'm an empirical type of guy. It is difficult to believe in something without proof first. You have to believe it before you see it. This seemed a difficult challenge for me. I knew my life was out of balance. How could this be caused by my brain? It felt so physical. This seemed impossible. Regardless, I got the book. My wife accepted it immediately and thought it made sense. I actually felt a little bit better after reading it.

    Fear and More Dr.s
    I was unsure. I thought, well maybe I just need to make one more round through the medical establishment. I scheduled a rheumatologist and a different pain Dr. I had numerous blood tests before, but it couldn't be as easy as a book, right? One of the things my CEO recommended was getting into one hospital system and sticking with it. My primary care Dr. was not part of a large hospital system and I decided to book all the appointments with the same system. I thought perhaps the reason I was failing was a lack of coordinated care. Interestingly, the first day I went to see the pain specialist, my pain got worse. I had actually been doing a little better with the Sarno books and when I started thinking physical again things went downhill.

    Caring and Smart - This pain Dr. had a much better approach. He showed he cared and was definitely of the mindset I just needed to get more active. He told me I needed to go to PT. I explained, that I had been several times without much help. He said this guy was different.

    This guy was different. No white lab coat. The Black Keys were blasting over the speakers. It felt more like a cross-fit gym than a clinic. It was small. Only a handful of patients and most were very athletic. His approach was mobility, strength and getting me moving. If I would ever tell him about this pain or issue he would shrug it off and get me focused on moving. He was helping me to stop worrying so much about my physical issues that I had obsessed on for so long. It was hard to admit, but I told him and another clinician about the mind body approach and they were both on board. After a month of attending one of them specifically asked about it. I mentioned that I had kind of tapered off of the mind body activity. He asked me if it helped and I said it did. He told me I should go back to it. The most amazing thing happened almost instantly. My pain dropped 2 or 3 points. The fact that someone in the medical establishment had recognized and recommended this approach made me feel better.

    I was starting to do better, but still did not have a lot of faith in the TMS diagnosis. It is hard because it feels so physical. My wife planned a family reunion in TN and my parents had planned a trip to MI. The MI trip was a memorial for my step-grandmother that had passed. My mom rented an RV so I could lay down on the trip. I thought I would be able to do both trips possibly. After the MI trip I was much worse. My pain was intense. I've heard other people sometimes have issues traveling.

    I told my wife there was no way I could go with her and the boys to TN. It would just be too painful. She was hurt immensely. I had enough energy to go to MI and once again her needs had been pushed aside. Earlier in the year her half-sister had passed away. I did not attend the funeral because of the travel. I was a crappy person to be living with. I didn't want to live with me either. I could tell that she didn't want to divorce me, but she was just done with TMS, back pain and watching me basically live under a blanket doing nothing. As much physical pain as I was in she was living through it as well.

    I didn't blame her. There was part of me that thought maybe I can just live in my parent's basement. It wouldn't be much of a life, but I could manage it. I really didn't want to lose her and I was such a sad state of affairs I knew no one else would want to be around me either.

    I Googled for a marriage counselor. He asked how I found him and I said he had very good reviews on the Internet. He was surprised and didn't understand why anyone would give him less than a 5. He had obviously never seen healthgrades.com. Even outstanding Dr.s barely get a 4. This guy had a 4.5. He was going to be my guy for sure.

    My wife agreed to go. The first time I met him I stood the whole time. At some point I was conditioned that sitting was bad. It was very difficult to sit. He seemed to get it. Not in the kind of way someone with first hand knowledge would know, but he understood that pain can be caused by emotions or stressors. He also knew how to fix my marriage with my wife. Within a few months we were back on track. I was relieved and starting to feel better.

    I started seeing him on my own once my wife and I were doing better. I started doing a lot of TMS reading with other books and he was helpful in moving through those and talking about some difficult issues from my past.

    Turning Point
    My PT time was about used up. I knew that my core issue was TMS and that PT (physical therapy) would not "fix" my issue. I used it as a tool to get moving. Even Sarno said to use vigorous exercise. I decided to take an exercise class with my oldest son. I didn't tell anyone about my back. It was helpful. I was "sprinting" in the class. It was amazing. I then tore my hamstring. I actually wondered if it was another form of TMS. No, I actually injured my body this time. It was interesting to me how close the TMS pain resembles physical pain of something broken. The difference is that physical issues heal. You know you are getting better. TMS lingers on forever. It moves around. Physical damage is very specific. An exact spot is hurt and very specific movements make it worse or better. TMS can be vague and hard to gauge. Some days are better than others. It moves around. You never know exactly what will trigger or make it worse.

    Yeah. Those crazy mother-fu*k@rs. I thought to myself, If I can do cross-fit than I don't have anything physically wrong with me. It is just this TMS monster I have to battle. Apparently, I can deadlift one of those bar things with weights on the end and not feel intense pain. You know how I can do that? My back is actually fine. I did talk to my coaches about it. I've done a poor job explaining it. They want to understand. I don't explain it well. They seem to be happy to have me in class and work with me. I explained how it can be a little nerve wracking doing some of the exercises given my past, but I want them to just encourage me and make me do it. It has been awesome. They set me up with some special training and additional books. When you know the right movement pattern you increase your ability to function and not worry about hurting yourself. Along with my PT5 it has helped me get over the fear of moving.

    I was so afraid of moving at one point my back got extremely inflexible. It is the same thing that happens when you immobilize a joint or body part. It becomes really stiff. They were all helping me move again.

    Test Time
    I had been feeling better. To my wife's astonishment, I agreed to drive 15 hours in a car to visit her dad in FL. This is an incredible milestone. I did it both directions and was no worse for wear. Boo-Yeah. Suck it TMS.

    Current State
    I still have mild symptoms. Even as I write this I feel the odd nervy sensations in my lower back, glutes and feet. It is better than a year ago and I believe it will continue to get better. I try not to think about it. I measure success not in my degree of pain, but my ability to function throughout my life. When I focus on that the pain continues to get smaller. It isn't easy.

    I think of Buddha and how suffering is caused through desire. I desire my pain to be gone and focus on it. The less I desire it to be gone the more it leaves. The more I desire it to be gone the stronger it comes back.
    tgirl likes this.
  2. billiewells

    billiewells Peer Supporter

    Thank you for sharing your story. There are some really useful observations which resonate with my own battles
  3. Boston Redsox

    Boston Redsox Well Known Member


    Thx for sharing
  4. mdh157

    mdh157 Well known member

    x3........glad you shared this, it reminds me this ain't gonna clear up overnight

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