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New member in a lot of pain.

Discussion in 'Support Subforum' started by Pilot in pain, Aug 4, 2013.

  1. Pilot in pain

    Pilot in pain Peer Supporter

    So glad to see this forum here. I just watched all the youtube videos and I was saying every 5 seconds, that is me there, that is me here, etc. I have been a commercial pilot flying 747's around the world for 20 years and sitting in the most hideous posture one can put themselves in. In 20 years I have never taken a single day of sick leave as I have never been sick. Most of my life I have eaten raw vegan, continually have been a work out person since 15, now 44 and have been fortunate to have never had a health issue until now. 2 years ago in the gym I started noticing a small sensation in my back, i do not want to even call it a pain, just an awareness. As I was curling weights I could feel it at my L5. Over the year it got worse and the weights I would curl standing up became less and less. Eventually I had to sit down to curl anything. I could not do long flights anymore and a 10 hour flight would bring on pain in the L5 and then it was moving up into the thoracic and then it would be 8 hours and then 5 hours and then literally I could not sit in the seat at all and that put me on disability where I have been for a year now. My neck has pain, upper back has pain, lower back has pain. As I type I just finished my 20 minutes of 3 times a day on the denneroll for my neck, wearing a back brace to stand up as I type with a 6 lb weight on my head and an intelliskin shirt on to pin my shoulders back. Then I have 3 X a day wobble chair exercises to do to help my back, I have to hang myself by the neck 5 times a day from the door, sleep on a special pillow, the list goes on and on. I have been to 11 doctors, 3 chiropractors, 3 NDs and a dentist to try and find out why I am in so much pain and there are a few minor structural issues in my spine but nothing that should be torturing me like this. I read Sarno's book and even managed to get him to respond to a few emails as I was really in a hard way but he is out so we are on our own it seems.

    I read each book cover to cover twice and I am shouting at my brain and I am doing EFT tapping every morning and night saying it is all in my head, I control the brain so I control the pain and trying to think of everything in my life that could be inner rage but this is my stumbling point. I dont want to toot my own horn but if the brain represses issues then mine is doing a heck of a good job. I dont really recall anything in life that would be classified as rage. I have had a few friends mess me over with money as I am definitely a goodist or whatever it is called and I am willing to walk backwards to help people and it has come back to bite me many times but it does not keep me up worrying about it or anything. I am trying to find out what it is that I need to find that gotcha moment and bring it all out but I just can not really put my fingers on anything.

    I am in Utah so I doubt there are any TMS doctors here but if anyone knows of any please post. Would a regular psychotherapist be helpful even though they have never likely heard of John Sarno or his techniques? Where I doubt there is anyone near for TMS issues, what would I have to tell a regular old mental health doctor to let him know where I am trying to go with this?

    I will start writing a journal like it says in the videos but honestly my life is really not so bad. I dont feel rage and I dont really dwell on past issues as nothing really pops to mind that would be the root problem other than the problem itself. It has taken away my life completely, I am in bed a lot, not able to do any of the things I used to do or love, can not pick up my daughter and hold her as my back is shot, can not play with them as my energy is 0. I have been tested for every single condition known to medicine and the best anyone can tell me is fibrogyalgia and chonic fatigue which is all BS.

    I dont know what I am even asking here I guess other than anyone know anyone in Utah that does this or any referrals even if I have to travel to see someone that can help and what all these procedures cost as I doubt any of it is covered by health insurance correct?

    I am thinking every day that it is all in my head and I control the body but nothing so far. THe pain literally jumps around, it is crazy. I have pain in areas of my back where there is no structural problems at all and the main pain areas are only minor problems structurally that I am sure everyone has.

    Anyway, I have a lot of reading to do now with all these success stories. The problem I have with Sarno's book is that it does not really lay it out step by step on the best way to conquer this issue. Accepting the concept I think i can easily do but it is not making the back pain go away. I keep telling myself I am content and I accept all issues that could be back there but I just do not seem to be getting any better.

    Thanks everyone!

    Pilot with his wings clipped!


  2. Anne Walker

    Anne Walker Beloved Grand Eagle

    Hello Pete. I have a few thoughts. Boy, do I wish that TMS was a condition that we could go down a checklist and then have results. 100% sure of diagnosis, check. Uncovered and released suppressed rage, check. Journal every day, think psychologically, meditate - check. And then we are pain free and can truly embrace our lives again. It has not worked that way for me though. I just turned 51 yesterday and discovered I have TMS a little over 3 months ago. I have made progress and I am more convinced than ever that this is what I have, but it has been a whole lot of work and the more I do the work, the more surprised I am at what I discover. In a way it has been a forced journey of self discovery because I would definitely not have chosen this path if it were not for the pain. I am still in pain, but it has not been as constant and it moves around. It still gets me, it still distracts me, but it is more like the pain du jour. Sometimes it is what I started with 8 months ago - chronic neck and right head pain, and then sometimes it is insomnia, intense bladder pain, numb and painful front teeth and nose, sciatica, panic attacks, anxiety... There was a singleminded simplicity to the chronic pain I had before I started working on the TMS. Now I have a whole myriad of things to pay attention to and think about. As I read your post, Pete, what came to mind is how insistent you are that you don't feel any rage. I am not questioning that, it could very well be true, BUT you do feel something. We all do. So the work I have been doing has been about becoming aware of what I am feeling and then learning how to physically experience and accept those feelings. If you asked my husband if I had trouble feeling emotions he would probably laugh, and a few months ago I would have too. But I have come to learn that what I thought was experiencing my emotions was really more of a defensive reaction - I was running from fear, crying because I didn't feel I could express my anger etc etc. Everyone's journey is different. When I first tried to become aware of what I was feeling my typical response was "I feel tired of being in this pain. I feel sad that I am in pain. I feel frustrated with this chronic pain." It was difficult for me to feel myself outside of the pain. I first read Sarno's book almost 20 years ago when I was 32 years old. A disc ruptured in my lower back and I had intense back pain and sciatica. For several months I tried to convince myself that my mind was creating the pain, I resumed physical activity, I worked with a therapist to see if I could uncover the traumatic event that was causing the pain. Eventually I had surgery and suffered chronic lower back pain for years. I realize now that my focus then was on what do I needed to do to get rid of this pain. And really the question is how do I need to be. That is a much more involved and complicated question. There are going to be common threads but the solutions are going to be very individual. It may involve giving up control and being willing to explore questions without immediate answers or pain reduction. I work with a TMS therapist via Skype because there aren't any in my area. I was very hesitant about that at first, but it has worked very well for me. I hope this is helpful in some way. I wish you every success.
    JanAtheCPA likes this.
  3. Pilot in pain

    Pilot in pain Peer Supporter

    Wow that sounds like an ordeal for sure. How has a Skype version of treatment been for you? I have called a psychoterapist in my area that is actually provided for by my health care and he deals in somatoform disorders or however it is spelled and he is willing to meet with me but I am sure he does not know TMS from a bucket of paint. I will see what he can do I guess but ultimately I guess I need to go find someone that is TMS specific and either fly there and hotel it for a week or two and see them to see if they can get me started or find one in a state where I know someone. Is there a list somewhere of every TMS doctor in the country? I hope you feel better and get to the finish line. Thanks for responding.

  4. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi Pete - and welcome to our forum. I think I just have two things to add today:

    1. I agree 100% with Anne.

    2. I believe that any therapist who understands the mind-body connection can help you if his or her personality is the right match. Don't get me wrong - discovering Dr. Sarno and reading The Divided Mind (his fourth book) is what turned my life around - but there are MANY other effective mind-body therapies and theories which don't refer to Dr. Sarno and don't use the term TMS - but really, it is all the same as what Dr. Sarno came to call TMS. I just looked up Somatoform theory, which clearly accepts that the brain can create physical disorders. Sounds like TMS to me!

    So try the local therapist first and give him the link to our wiki so he knows where you're coming from. The chances of finding common ground are not guaranteed, but I would think they are pretty high unless he's a narrow-minded jerk :^) He might even be thrilled to be able to work with someone who has already accepted the mind-body connection.

    Again, welcome, good luck, and keep us posted!


    You can also start doing one of our free online programs: The Structured Educational Program or the Alan Gordon Recovery Program
  5. Anne Walker

    Anne Walker Beloved Grand Eagle

    Are you looking for an MD or a therapist? I would recommend a therapist that specializes in TMS. Sounds like you have had a pretty thorough medical examination and they haven't found anything to diagnose you with. After working with my therapist via Skype, I see no reason to travel anywhere. I was concerned before I tried it, but it is not really that different from being in the room. Its not like you have to see a therapist but if you can somehow afford it or get insurance to pay for it, you might get to where you want to go a lot faster. Or you could try Dr Schubiner's Unlearn Your Pain program first, or Monte Hueftle's Master Practice. I learned different things from each and they have both been really helpful. I think if you enroll in Dr Schubiner's program on line than you can also have email access to him and more on-line support. I think that costs $100 instead of $25 for the book. And if the psychotherapist in your area is covered by insurance and he specializes in somatic disorders, it could be worth a try. He might be more helpful than you think. TMS is a psychophysiological disorder and finding a way to focus on the psychological instead of the pain is a key component to recovery. The pain truly is just a signal that something bigger is going on. Could be how you process emotions, could be how you handle stress, could be a traumatic event or a combination of all those things and more. I was a very successful film producer and my first big pain episode hit me at the height of my success, out of the blue. I still do not understand why then, why when I had finally made it. I thought things were going really well in my life. I can perhaps make things sound really dramatic, but really I am just trying to say that it is all worth it in the end and although I haven't made a full recovery from the pain yet, my life is already better than it was before.
  6. Anne Walker

    Anne Walker Beloved Grand Eagle

    Jan's advice is really great. I must have been writing my response while she posted hers but I think she is absolutely right.
    JanAtheCPA likes this.
  7. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Pete, Anne gave you some very good advice. I will get back to you tomorrow with more but just wanted you to know today that we at TMSWiki hear you and are here to help you heal.

    It may not happen overnight, but you will heal. Meanwhile, surf TMSWiki.org/forum for posts from others about healing and read more of the success stories on the site.

    I'm in a Chicago suburb. You can look at my postings to learn more about me and my healing. -- Walt Glenview.
    JanAtheCPA likes this.
  8. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Great minds, Anne - LOL!
  9. Pilot in pain

    Pilot in pain Peer Supporter

    Wow so much positive energy and support. I literally thought I was absolutely alone with this. I went to 11 doctors, no one could come up with anything. I thought it was inflammation at first. I started taking Serrapeptase or however you spell it, the anti infam enzyme, 1X the dose, 2X the dose, 3x the dose, 5x the dose and nothing. I ate nothing but anti inflam foods only thing I would put in my body. Started taking MSM, 1000 mgs a day, 2000, 5000, 10,000, 20,000, 30,000, 50,000 mgs a day nothing. Had prolozone injected into my spine 30 times. Would literally get 100 needles at a time injecting some kind of PABA all over my back, MRIs Xrays, small army of blood work over the last year or two, neutologists told me I had fibromyalgia and chronic fatigue, endocrineologists put me on thyroid and testosterone shots which I quickly realized were useless so I stopped them all. My regular MD just told me to go home as there was nothing else he could think of. The Cleveland Clinic heard my story as part of their 2nd opinion program and declined me as they did not know what to do. I have given up every type of food known to man, taken more vitamins and crazy herbal crap than you can throw a stick at. A year into it I can still not walk up a flight of stairs and the pain jumps around like a pinball bouncing around a pinball machine. A day or so ago it went into my shoulder! Never had a problem with my shoulder in my life and literally now it is completely frozen. I got so mad I went up on my rebounder and spent 10 minutes bouncing screaming at myself telling my brain to F off and stop messing up my shoulder and honestly after not being able to lift my arm 30% from vertical, I was able to raise it up over my head after that little session of flipping out at myself and telling my brain how pissed off I was at it for trying to hurt me when I have done nothing but be nice to him all these years! hehe. I have not gotten into journaling yet but I will start it. I will go to this doc and see what he has to say. If it does not work I will look for a TMS doc and go where ever I have to to be seen or do it on Skype. It has been a rough few years for sure and the Physical Therapy the sports med docs have me on now takes up all day but they did find I have forward neck carriage in my xrays so my head tilts forward a bit from 20 years of having crap posture on a plane. I am doing foundation exercises as well and have dont the peter egoscue back program a number of times but nothing works. THe pain is there. If I look down my neck kills me. If I sit too long my thoracic kills me, if I stand too long my L5 area kills me. I can go to the gym if I have energy and work out full speed on my back, pull ups, put every ounce of weight the back machine can handle and knock them out, I can stand on my hands, do yoga, there is nothing I can not do to BRING ON the pain physically except stop, sit or look down. THe second I stand still, sit still or look down, my whole back is like it is burning on fire with pain. It is not the spine although the spine has a few minor issues, slight bulge at L5 and a hemivertebrae at T4 and my neck looks like a goose neck lamp but the sports med guys are working on that. The pain is not at the spine, it is either side of the spine and as of yesterday in my shoulders. I think I have been applying Dr Sarno's techniques at night, EFT tapping and reading the daily 12 affirmations and reminding myself that it is all in my head and my back is fine so maybe I have it on the ropes for the first time and now it went to the shoulder which was kind of interesting. I really thought I was going nuts as there was not a single MD of the 11 and ND of the 3 that mentioned anything about TMS and it all being in my head. I am motivated so for now I am still going to talk to the brain, tell it I am in charge, I release any stresses I have and let them go and that there is nothing structurally wrong with me and I will keep doing that over and over. Hopefully i will get to see the analyst this week and I can post the results here. I know misery loves company they say and I wish I was alone with this which would mean no one else was suffering but if there are folks out there that do have to have it, I am glad there is a place where we can all come to chat and support each other. I am really pissed at my body for letting me down to be honest. Stupid brain! hehe

  10. Anne Walker

    Anne Walker Beloved Grand Eagle

    Yes, let us know how it goes. You are on the right track! I certainly understand being mad at your brain for causing all the pain. But don't forget how amazing your brain is and it thinks it is protecting you. Perhaps some day you will understand why. Its definitely not just trying to mess you up for no reason. I think its interesting that you can work out with that intensity and the pain comes when you stand and sit still. I think that is another good sign that there is nothing structural going on. And lots of people have forward neck carriage without pain. Sounds like you are already reading a lot, but you might also really enjoy Steven Ozanich's The Great Pain Deception. You seem to have a very strong will and although he recovered from a very extreme case of TMS, he gives lots of interesting advice that you might relate to.
    JanAtheCPA likes this.

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