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*** TMS or Structural? *** Out of hope; don’t know who to believe anymore. :(

Discussion in 'General Discussion Subforum' started by Kerrj74, Jan 23, 2018.

  1. Kerrj74

    Kerrj74 Well known member

    Hi fellow back pain sufferers!! I always value the insight, comments, inspiration, and support I get from you all when I post. I wanted to put this out there because after 14 months of pain that never ends, I am running out of options and hope. I have spent 14 months reading every TMS book and listening to every audiobook, YouTube video, etc. For a few months I was 100% convinced my pain was TMS and I committed to it 100% and truly believed it. I did psychotherapy and journaling and also started exercising again. However, nothing improved at all. So then I got sucked back into the physical/structural diagnoses again. After a few months of no relief, I went back to the TMS theory for many months and was 100% convinced I had TMS. Committed myself to it and really believed it. Again, after no relief whatsoever, I am now back to the physical again!

    I had a 2nd MRI today in one year and another new Spine/Pain doc tomorrow who may recommended nerve ablations and/or spinal cord stimulator implant. I am so torn between what and who to believe. I fit the TMS profile completely (perfectionist, worrier, people pleaser, years of unexplained random chronic pains and ailments). However, the pain is so persistent and never improves and then doctors keep telling me something is wrong! I don't know who to believe anymore. They all have different diagnoses, so I am not confident in any recommended procedures. I don't want to make a bad decision for an unnecessary and possibly dangerous spinal procedure, but I feel like I have put all my faith in TMS as the cause so many times for months but never saw a glimmer of hope for relief. My full history is below if it helps. Would love to know what you all think. Thanks!

    Background: I am a 44 year old male with a long history of continuous health issues for the better part of the past 25 years of adulthood. For the past 14 months (since Nov/Dec 2016), I have had never-ending chronic low back pain that never improves or responds to any treatment, medicine, therapies.

    Other Ailments (Past/Present): IBS, elbow tendonitis, carpal tunnel, sinusitis, headaches, dry eyes, Anxiety/Depression, hemorrhoids, TMJ, stomach nervousness, tension

    Personality Traits: perfectionist, overachiever, chronic worrier, anxious
    Summary of the past 14 months:

    Doctors/Other Practitioners: 1 Orthopedic surgeon, 1 Physiatrist, 2 Physical/Rehab Medicine docs, 1 Integrative Medicine doc, 2 Pain Mgmt docs, 2 Chiropractors, 2 Acupuncturist,

    Imaging (MRI & X-Ray):
    • 1/19/17- MRI- findings: Degen disc L2/3
    • 11/29/17- X-Rays of lumbar/sacral spine (no issues)
    • 1/23/18- MRI- findings: TBD...

    • 4/17/17- L3,4,5 Medial branch block (70-75% relief 3-4 hrs. Placebo?)
    • 5/3/17 - L1,2,3 Medial branch block (didn't help at all)
    • 12/21/17- Nerve Conduction Velocity (NCV) test (pinched nerve down left leg)

    • Soft tissue/muscle strain
    • Core Weakness/Alignment
    • Annular disc tear
    • Bulging/Degenerative discs
    • Lumbar Facet joint syndrome
    • Pinched nerve down left leg- L5/S1 (NCV test)
    • Chronic Pain Syndrome

    Rx Medications:
    Ultram (helped a lot for a couple weeks) Lyrica (worked 1-2 days- placebo?) Neurontin/Horizant (worked 1 day- placebo?) Flexeril (Sometimes helps me sleep) Celebrex, Mobic, Prednisone, Valium, Xanax

    OTC: Tylenol, Advil, Aleve
    Topical: BioFreeze, Capsaicin, Icy Hot
    Natural: Magnesium, Turmeric, CBD Oil (cannabidiol), Vitamin D, Theanine, Kratom leaf

    Therapies /Treatments:
    • Physical Therapy (3 rounds during past 14 mo's)
    • Heat/Ice
    • Acupuncture (2 rounds)
    • Massage/Active Release Therapy/Trigger Point release, rapid release
    • Vax-D Spinal Decompression (~17 days)
    • Yoga/Meditation
    • TENS
    • Float tank
    • Core strength/stretching
    • Psychotherapy (CBT)
    • Quell (40 days. electrical calf stim)
    • Walking/exercise

    Lumbar "Devices": Various lumbar supports for sitting, Standing desk (Veridesk), Back braces, Pelvic tilt "seat"/Physio ball

    Reading/Information: EVERY TMS book, audiobook, forum, website, etc.! 10 times each!!!!

    Full Timeline:

    • 1994: After feeling a "pop" in my lower back while on a rowing machine, I developed chronic low back pain which lasted 2 years. Nothing helped it. NOTE: This was the SAME exact pain in the same location that I have been experiencing now!
    • 1996: Dr. said my L3/4 disc was destroyed and did an interbody lumbar fusion (pelvic bone graft, no hardware). For the next 20 years, I was relatively pain free.

    • Nov 2016: A few weeks into a new job, my low back started hurting. I didn't think anything of it. Started a little achy. Felt like I might have just strained something from bad posture at my new desk.
      • A few weeks later and it was very sharp and "spasming" on the lower right side. I could barely bend down to tie my shoes. It hurt bad to even breathe.
      • A few weeks later, it developed into more of a dull ache. Moved from left to right sides throughout the day. I would describe it as having dull knives stuck into my low back all day.
      • Pain didnt go down the leg. No numbness/tingling.
      • Pain to sit or stand for any period of time.
      • Relieved only when lying on back, but even that hurts at times.
      • In the beginning, heat helped. Then it no longer helped. Then ice helped numb the pain for a few months. Now neither really help.
      • Initially tried OTC NSAIDs, Flexeril, prednisone, ice, heat, bed rest, pain ointments/creams, etc
    • Dec 23, 2016: First Orthopedic Surgeon said it is probably soft tissue strain or an annual disc tear. She sent me for PT. I tried physical therapy in February - core strengthening, stretching, TENS, etc. No improvement.
    • Jan 19, 2017: An MRI showed L2/3 disc degeneration and a couple of "mild" disc bulges
    • Jan/Feb 2017: Tried a few sessions of Physical Therapy and Yoga.
    • Feb 2017: Physiatrist gave me Ultram, Flexeril, and Valium and said probably just soft tissue strain. After more weeks, no improvement.
    • March 2017: Chiropractor said I had two (2) bulging discs that were pressing into nerves and causing the pain. He was 100% sure! So he started me on a "VAX-D" Spinal Decompression table. I went every day for 30 mins each for about 4 weeks (~17 treatments from March 1 to 27) along with PT afterwards (core strength, massage, TENS, ice). No relief at all, so I stopped going.
    • March 2017: Physiatrist sent me to Spine Pain Specialist. He scanned the MRIs and a very quick evaluation and said it is most likely my facet joints (arthritic). He was 100% sure that was it. He said I needed a diagnostic medial branch block.
    • April 17, 2017: Medial branch block #1. L3,4,5 - 70-75% relief for 3-4 hrs.
    • May 3, 2017: Medial branch block #2. L1,2,3. Didn't relieve any pain at all.
    • May 11, 2017: Spine Pain Specialist said they would need to repeat the first procedure again!!! This was needed to confirm that it worked (that the relief I experienced wasn't a fluke) before proceeding with a nerve ablation. He said if it is confirmed, then an ablation would be recommended. If not, however, then he said it could be the L2/3 degenerative disc causing a "referred" pain to the area a few inches down lower in the back where I feel it. That would require more consults with a separate surgeon, a discography (discogram) diagnosis procedure, and then potentially a surgery (fusion or artificial disc replacement). I did NOT want any of that!
    • Mid May/Early June: I was scheduled for 3rd Medial branch block (to confirm L3,4,5 from April), but canceled it because I believed I was all better! After a strenuous weekend forcing myself to do yard work, I felt 100% better for five (5) days! I was convinced I was all better. Didn't hurt AT ALL! Then after 5 days, it started hurting again. I have tried and have yet to be able to replicate this relief. How could I feel 100% better for 5 days if something is structurally "wrong"???
    • June 2017: Tried a Quell wearable device for 40 days. Quell is worn on the upper calf and stimulates sensory nerves to block pain signals. It didn't help.
    • Sept 2017: Integrative Pain Medicine doctor. Evaluated me thoroughly for almost 90 mins! Tried natural things like diet, supplements, acupuncture, physical therapy.
    • Sept/Oct 2017: Acupuncture a few times a week. Didn't really help.
    • Oct/Nov 2017: Started Physical Therapy again a couple of times a week. Didn't help.
    • Oct/Nov 2017: Went to a Pain Management clinic. Tried me on Lyrica, Mobic, Celebrex, Horizant. Nothing helped other than first day on Lyrica and Horizant (Placebo?)
    • Nov 2017: Went to U. Penn Medicine (Physical/Rehabilitation doctor). Exam showed nothing. Said I could try an epidural injection. Sent me to get X-Rays or lumbar/SI joint on Nov 29th. Never followed up because I started Physical Therapy.
    • Dec 2017-present: Chiropractic, Acupuncture, and Physical Therapy. I go 3 days a week for PT. Strengthening core and hips, etc. Nerve Conduction Velocity (NCV) test showed pinched nerved down left leg (L5/S1).
    • Jan 23, 2018: Lumbar MRI. Results TBD...
    • Jan 24, 2018: Going to ANOTHER spine/pain doc!! TBD...
    Last edited: Jan 23, 2018
  2. Kerrj74

    Kerrj74 Well known member

    Oh and if you couldn’t tell, I am an engineer obsessed with details! LOL
    MWsunin12 likes this.
  3. balto

    balto Beloved Grand Eagle

    from reading your post I am guessing that you either have good financial mean or a pretty good health insurance plan. You should do yourself a big favor and book a visit with a TMS specialist. It seem like you have visit all kind of "health experts" except a TMS expert.
    I think your problem is trust. You don't trust or believe in any doctor, book, or diagnosis. When you said you were 100% convinced your pain is tms I seriously doubt it. Because if you were a 100% convince, a 100% believing your pain is tms then you would have see big different already. The biggest huddle in dealing with tms is achieving 100% belief. If you were a 100% convinced then you wouldn't have anymore fear of your pain. You wouldn't worry about your symptoms anymore. You wouldn't go to sleep thinking about it. Your pain is just an inconvenience. You would go any where, do anything, play any sport, .... in short, you have NO FEAR of your symptoms, and you would have heal already.

    Work on your belief. work on eliminate your FEAR. and if you can, book an appointment with a tms specialist.
  4. balto

    balto Beloved Grand Eagle

    Yes, how?
    you're an engineer, tell me, how?
    pain from a structural or physical cause do not take a break for even minutes. Forget about 5 days.
    Kerrj74 likes this.
  5. Huckleberry

    Huckleberry Well known member

    Just wondering. Did you use to post on the old Anxiety Zone Forums a few years back? Apologies if not you but just sound familiar.
  6. Kerrj74

    Kerrj74 Well known member

    Thanks balto. You are probably right about the 100% thing. I feel like every time I commit to the mind body theory, I get a few months into it and see zero improvement so I lose faith in it. Then I go to a doctor or physical therapist or chiropractor and they convince me something needs fixing. When the pain is so intense and persistent, I have an easy time buying into their structural diagnosis. A few times I was absolutely convinced of TMS. It made complete sense to me, and I told myself all day long for months that the pain was just my repressed anger/fear. When I never saw even the slightest sign of improvement, then I would decide there must be something physically wrong. Then a doctor would reinforce that belief and I would be sucked in again.

    I never let the pain stop me from living. I do everything- work, gym, family stuff, etc. I’m just in miserable pain during all of it. Even on vacation this summer I was in constant pain. I don’t fear the pain. I just can’t get my mind off of it. I can’t enjoy any moments because it is right in my face hurting me all day sitting and standing. I don’t know how to get past that?

    I haven’t tried a TMS practiciiner for two reasons: 1). Can’t find anyone on the website within a couple hours of me in south NJ, and 2) I feel like they are just going to tell me everything I have read a hundred times in all the TMS books.

    Thanks so much. I’ll keep working on myself.
  7. Gigalos

    Gigalos Beloved Grand Eagle

    Hi Kerrj4,
    As a fellow engineer I feel your need to be certain about every little sh!tty detail. I recognize the perfectionism, worrying and anxiety. I can totally see that you got symptoms when you started a new job, because combine it with these traits and you're in for a sh!t storm. In a couple of months I will be 'in between jobs' and I already feel emotions/symptoms rising from it.
    I already asked you in another thread if you did any 'mindwork'. You told me you had years of psychotherapy and I see it was CBT. I just don't know how well CBT connects to TMS, but maybe you have an idea about it yourself.
    Since you have put so much energy in everything else, do you feel that something more might be gained from therapy or do you feel resistance to it?
  8. Kerrj74

    Kerrj74 Well known member

    I don’t recall, but it is very possible! ;)
  9. Huckleberry

    Huckleberry Well known member

    Oh, probably not then. No worries. :)
  10. Kerrj74

    Kerrj74 Well known member

    Good point! Thanks
  11. Kerrj74

    Kerrj74 Well known member

    Gigalos: I think I need to try therapy again and try to dive deeper into my emotions and my fear of failure and imperfection. I suspect that is the cause of all my anxiety and most likely the chronic pains. Thanks!
  12. Huckleberry

    Huckleberry Well known member

    I’ll actually chime in on this as I’m intrigued/confused somewhat by this point as well. It seems that having pain flares is pretty common amongst back pain sufferers and often when not flaring it is possible to be pretty much pain free. I struggle to understand how structural pain can act this way but
    whenever I’ve raised this as an issue with my consultant He just throws the wax and waning of inflammation line at me. This makes sense to some degree but I know from my perspective there seems very little I can pinpoint that would often start the inflammation. Would you logical engineer chaps be inclined to think that chronic pain that flares like this is unlikely to have a structural causality then?
    Kerrj74 likes this.
  13. Steve Ozanich

    Steve Ozanich TMS Consultant

    James you can slap a table of contents on this and call it a book; a perfect TMSer. I can tell how bad people are TMSing by the emails they send me, not by the content but by how the email is laid out. They often have bullet points and some even have bibliographies in them. Not only do they try to be perfect in their life but they try to heal perfectly.

    It looks like you are near the best TMS doc out there, Paul Gwozdz, if you need a diagnosis, but no one really does. You only need to believe in TMS in order to heal, ie, that you do not have a physical body problem. Until you believe in that deeper you can't let go, and until you let go you can't move on, and right now you don't believe it. You said here .."100% and truly believed it"...and yet you went back to the physical world, so you didn't believe it 100%. You wanted to believe it (a reaction formation) which is different than truly believing it. Then you wrote after a few months you went back to TMS theory (btw, it is not a theory any more). So you're going back and forth believing and not believing, which is not believing, right? In my first book I quoted Emile Chartier for a specific reason, "To think is to say no."

    TMS results from confusion as does most suffering, and/or cognitive dissonance (that divided mind the good doctor penned). In the East it is called "Maya." Doctors are of course the primary cause of our confusion regarding health and so are causing much of our suffering. However, they can only harm you if you believe in them, and so you are the ultimate determiner of your suffering. Who do you believe Dr. Sarno and the millions who have healed from your same symptoms? Or your doctors? The same is true for mindbody docs that come here occasionally, they are harming people by confusing them. They say one thing about TMS and practice another, they claim Dr. Sarno is wrong here and there further confusing people adding to Maya. People get mixed messages and can leave confused. never healing.

    What does your intuition tell you? When you are ready to heal seek out those who can help you and avoid confusion. Rumi wrote, "when setting out on a journey do not seek advice from those who have never left home." Go see Dr. Gwozdz if you need that stamp of TMS. But in the end it comes down to you believing or not believing, no one's opinion matters but yours. This Type T persona often relies on the opinions of others before they commit. Just make up your mind to heal and then heal. But first must come awareness. All the knowledge in the world won't work unless it expands your consciousness. Knowledge is the kindling that ignites the fires of consciousness so first gather knowledge and then let it go. Rumi also wrote that there are 2 kinds of people who are never satisfied, the lover of the world and the lover of knowledge. Knowledge is not enough--- it must provoke a wisdom which is why most people don't heal by just reading the books. They read but they don't understand it. The person who reads and heals understood it, and so was no longer confused.

    Good luck, I hope that helps you, and never give up, your time is coming soon, when you are ready.

    http://www.hinduwebsite.com/maya.asp (Maya As the Field of Illusion and Power of Delusion)
    tgirl, Ines, Time2be and 3 others like this.
  14. Click#7

    Click#7 Well known member

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  15. Kerrj74

    Kerrj74 Well known member

    Wow! Thank you Steve O! well said like all of your books! ‘To think is to say no”! Yes, that’s it! If there is any doubt, then I don’t fully believe! I guess that is the part I have struggled with the most. Every time I think TMS sums me up, I over analyze things and find some reason why my pain must be structural (and then that gets further reinforced by some doctor’s next diagnosis). I need to commit 100%, believe 100%, and stay away from the doctors. You have inspired me tonight! Thank you so much for taking the time to read my epic novel and for your thoughtful response. Your books are awesome, and I am going to re-read The Great Pain Deception tonight! Thanks
    Lizzy likes this.
  16. Steve Ozanich

    Steve Ozanich TMS Consultant

    Very good, I'm pulling for you James. Stay with Dr. Sarno's work, it works once you understand it better and all its implications. People say they have added to his work and advanced it, but they haven't. They say he is wrong here and wrong there, but he isn't. They simply create confusion which stems from opposing opinions which can then shift beliefs. We are defined by our beliefs which manifest our reality. Part of that process includes imagination, or what we see in our mind's eye. I'm not sure which comes first but they influence one another. Yogananda wrote that "between desire and imagination, imagination wins out every time." So no matter how much you desire to heal you can't if you can't see it." Dr. Sarno comes along and shines a light into the darkness and shows us that we are ok, nothing is wrong with us. From that hope we can now "see" deeper and we can heal. Seeing does not guarantee healing, it is the matrix for it to survive. There can be perfect clarity and vision but if one chooses to not believe or refuses to see for shadow reasons then it can't occur.
    Tennis Tom, Click#7 and Kerrj74 like this.
  17. Kerrj74

    Kerrj74 Well known member

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  18. Click#7

    Click#7 Well known member

    ......but while you are waiting for that MRI report remember this ? There are tons of research papers out there that show "normal abnormalities" on MRI's of asymptomatic patients called incidental findings. Believe me I have to convince my subconscious too. You've done well since 1996.....but I think that was painful time for you (surgery) and sticks in your mind like PTSD. You got better ! The same thing happen to me 18 years ago, but no surgery. I got better too. So what was happening in your life back then ? I am asking myself all the same questions. We have just keep it simple... believe & heal. PS when you read Steve's book...his back according to his doctors was a mess ? Look at him today.
    Tennis Tom and Kerrj74 like this.
  19. Kerrj74

    Kerrj74 Well known member

    Great points click#7! Thanks so much! So true!
  20. Lynn S

    Lynn S Peer Supporter

    Oh my. I empathize with your grief and pain. What do you want the answer to your question to be? I often find when I make up my mind I find the evidence to support that decision. Also consider you have a long history and story that may be challenging to let go.
    Tennis Tom and Kerrj74 like this.

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