If you'd rather hear my story, click HERE for a Podcast interview (2019) 

 

FROM PAGES 171-181 OF MY BOOK THE MINDBODY SYNDROME (TMS): A PATH TO RECOVERY & FREEDOM (2020)

 

WARNING: If you're prone to symptom influence, like many TMSers, maybe skip this reading all together. Either way, know that this was my experience and does not mean you will have, nor need to have, the same. The sole purpose of me sharing my story here is to “qualify” as a TMSer, so that you, the reader, can identify and see that you too can be free.

the beginning

I began worrying and obsessing about my body when I was a young boy. It all started with stomach issues when I was around 10, just after my parents divorced (coincidence?). I was examined by doctors on several occasions, even taken to the emergency room several times, but no cause was ever identified. This stomach stuff stuck around until I was around 17, at which point I began having some mild low-back and leg issues (minor sciatica, though nothing compared to what was to come later in life). I saw a few different doctors over the years, mainly because I had pretty severe numbness in my left foot, but there wasn't much pain. It was really more discomfort and annoyance than anything else. I was repeatedly given exercises and stretches and warned that it could progress as I got older – ahhhh, the proverbial seed was planted and grow it did! Years passed and the anxiety surrounding my perception of being fragile increased. I did have some legitimate accidents over the years, which contributed to my burgeoning fear. I was what you might call “accident prone.” For instance, the first time I broke my arm, both bones, I was six. The second time, my left arm, both bones, I was twelve. The last time, my right arm, both bones again, it was a compound fracture, which required a serious operation wherein two plates with a total of 24 screws were put in my arm. I was 15 when that happened. My poor mother! Oh, and the plates and screws are still there in my arm...and NO, they do not set off the metal detectors when I travel, it’s not that type of metal. Beyond accidents, I also had a tonsillectomy at 19 and wisdom teeth extraction at 24. Normal procedures, sure, but for someone like me (a typical TMSer), these added to my increasing fear and obsession with my body.

tms episode #1

During the summer of 2009, at age 32, I had my first bout of severe back pain and sciatica following a nasty breakup with a long-term girlfriend (significant repressed emotional event #1). One morning, I awoke with my trunk severely contorted to the side, making it nearly impossible to walk. This was very scary. Shortly thereafter, sitting and lying down also became incredibly painful. I attempted to subdue the pain by drinking heavily and taking drugs, but after several months the pain wasn't improving. In fact, it was getting worse and the booze wasn't working as effectively as it had initially. I finally decided to see a doctor, who immediately ordered an MRI. The scan revealed two herniated disks and spinal canal narrowing. I was terrified. The doctor mentioned the possibility of surgery but said we could try less invasive methods first. He prescribed the usual regimen – drugs and physical therapy, which seemed to work because the pain slowly eased. These back issues would show up here and there over the next several years, for a few days to a week, but never for too long. On a few occasions I had to use a cane since walking was difficult and painful. I also started to see a chiropractor regularly. During these minor flare ups over the years, I began making some association between the onset of the pain and heightened times of tension in my personal life.

tms episode #2

Fast forward to Xmas eve 2014 – a nightmarish acute attack crippled me while lifting weights. I was doing squats with free weights when I suddenly felt a “pop” in my low back, which was followed by instant sciatic pain shooting down my left leg. I could barely move. This type of pain is truly ineffable – only those who have experienced it really know. Anyhow, the sudden onset of pain was new to me. In the past, the pain typically came on more gradually, worsening over the course of several days. But this time it was immediate. I had to shuffle out of the gym, hunched over in extreme pain. This went on for weeks, mostly confined to my bed, before I finally decided to return to the doctor. I was scared to go because five years earlier he had told me that surgery was likely going to need to eventually happen. I feared that time had come. He ordered another MRI but to my surprise, the findings were very similar to those of the 2009 report. Nevertheless, he sent me to see a neurosurgeon who, upon seeing my contorted truck, immediately wanted to give injections and said surgery was probable. Luckily, I had already done some of my own research on spinal injections and found that they had very low success rates (not to mention they’re not even FDA approved, see the following for more on this commonly unknown fact: https://www.fda.gov/drugs/drug-safety- and-availability/fda-drug-safety-communication-fda-requires- label-changes-warn-rare-serious-neurologic-problems-after). I thus declined the injections, much to the neurosurgeon’s disapproval, and opted for the same-old physical therapy and chiropractic path, again. Five months went by and the pain remained. The hardest part about this episode was that walking was very difficult, much more so than it had been in the past and, at times, even impossible. Because living in NYC without a car means one must walk quite a lot, my life became very limited during this time. As a result, I fell into major depression and even began having suicidal thoughts. I had also gotten sober several years earlier, so drugs and alcohol were no longer a “solution,” not that they ever were in the first place! I was at a crossroads and truly believed I had only two options: surgery or suicide, which I labeled my own personal S.S., since both options were awful. But then one day a friend told me about this guy named Dr. Sarno. I had the gift of desperation at that point, which is often necessary for us TMSers, so I started looking into Dr. Sarno and TMS. Things immediately began to click. Just before this attack, I had gotten married and changed jobs (significant repressed emotional event(s) #2), two big triggers mentioned in Dr. Sarno's work. I was incredibly relieved to learn that there was an answer to this nightmare, one that didn’t include surgery, drugs, or any of the other methods I had already tried. So I really dove into TMS work. Within a few months, my symptoms vanished – I was cured! Or so I thought....

tms episode #3

No more than five months later, after learning of a dear friend’s death from an overdose and that my wife was pregnant with our first (significant repressed emotional event(s) #3), I had another episode. Apparently the frightening emotions that go along with these two life events were too much for my unconscious mind, so the symptoms returned. Again I was in the gym lifting weights, I felt a “strain” in the lumbar area of my back and it locked up. This wasn’t an immediate onset like the previous episode, but by the following morning, my trunk was yet again contorted and I was limping and hunched over from sciatic pain. My own personal S.S. began its slow ascent back into my mind. Thankfully, however, I was resolute in the integrity of TMS recovery, having just experienced great relief as a result of its implementation. Thus, I decided to return to TMS work. The pain stubbornly remained for around four months, though it wasn’t as severe as before. The pain subsided with the birth of my son – I guess a newborn was enough of a distraction in and of itself.

tms episode #4

I was in pretty good shape for several months, though still not entirely pain free. Eventually a new onset and pattern emerged – the pain began gradually increasing on its own with no attributable trigger like the prior weight lifting experiences. At this point I was convinced that I had TMS. I had so many of the common TMS personality traits and had come to see the clear-cut triggers surrounding the occurrences, yet clearly there were some lingering reservations because the pain returned...and became again so intense and persistent. I decided to go see an actual TMS doctor, hoping that an official TMS diagnosis would resolve any hidden doubts. So I went to see Dr. Gwozdz (Dr. G) out in New Jersey. After going over my MRI results from both 2009 and 2015, and talking for a few hours (yes, he spends that much time with his TMS patients!), he diagnosed me with TMS. Eureka! I finally got my TMS diagnosis and I was thrilled. I really believed (hoped) that a diagnosis would be the quick fix, the last piece of this TMS puzzle. But several days passed and the pain remained. I was confused and felt the weight of oncoming hopelessness arising. I didn't know what was going on or what to do next. I thought I had everything I needed in order to accept that my pain was TMS and nothing else. A thought kept returning to me: “I must be one of those TMSers that needs psychotherapy.” As such, I started seeing a TMS therapist. We immediately began unearthing some heavy stuff that I sort of knew was there, but refused to look at, at least in any meaningful manner. TMS psychotherapy turned out to be incredibly helpful for me and the pain gradually subsided over the 14 months that we worked together.

 

tms episode #5 – last-ditch attempt

I was doing quite well for some time, TMS symptoms the furthest thing from my mind. Then, later that year, my wife announced the pregnancy of child number two (significant repressed emotional event #4). This was a planned pregnancy, but I guess I wasn't as ready as perhaps I thought because shortly after learning of the pregnancy, the symptoms returned, only this time they were much scarier than ever before!! Here's some further context of what was going on in my life at the time of this relapse: I had recently undertaken a rigid Buddhist practice, but not like any sane layperson would. The good little TMS perfectionist that I am, I was basically adhering to the same code of conduct as would a monk in a Buddhist monastery! I shaved my head, I stopped listening to music, I tried to cut out all forms of entertainment, and I joined a Buddhist group. I went to my first daylong silent meditation retreat while simultaneously observing Uposatha – intense stuff for a novice practitioner. The daylong went well and it seemed I was making progress in my practice. At the end of that day, however, on my way home, something felt off, both mentally and emotionally. I just felt very peculiar, a bit disassociated, but I just shrugged it off. That night, as part of Uposatha, I slept on the floor. You can probably see where this is going... I awoke the next morning feeling quite stiff, noticed tension in the back, and had some light anxiety. The “off” feeling was still present and intensified over the next two days until the episode hit full on. I awoke with my lumbar completely locked up and sciatica down my left leg. I immediately fell into panic mode. I thought I was free of TMS! I had done everything, or so I thought): I went to a TMS doc and got the official diagnosis; I did TMS therapy for 14 months; I read and reread all the books; I participated in TMS online communities and programs. WTF?!?!?! I felt deeply deceived and desperate. Nevertheless, I started doing the things I had learnt over the years, such as positive self-talk, journaling, doing nice things for myself, and getting on with my days the best I could – walking, going to work, spending time with family and friends, etc. The pain began to lift after a few days, but then bam! – the sciatica shot over to my right buttock and right leg. This was really scary because my symptoms had always only been on the left side. This was, however, classic TMS, a textbook example of the symptom imperative (symptoms jumping from one area to another). The recognition of this gave rise to some calm and I began feeling a bit more confident, though I was still in a lot of pain. Then, shortly thereafter, the symptoms appeared in both legs! Sciatic pain in both left and right legs is inexplicably excruciating and I feel deep compassion for anyone who has had to experience it. My confidence in TMS began to spiral downward, but I still decided to put in a call to my TMS doctor, Dr. G. He asked what was going on in my life and I told him of the new pregnancy and other life stuff like work, friendships, etc. He listened attentively and assured me it was TMS. His confidence was soothing and I felt some relief, for a day or two, but then more symptoms started to surface.

One morning I awoke and immediately noticed numbness in my “saddle region” (entire buttock area, inner thighs, and genital area). There was also severe weakness in both legs. In a panic, I consulted “Dr. Google” – bad, bad idea – finding Cauda Equina Syndrome (CES). After reading the symptoms associated with CES, wouldn’t you know it, I started experiencing all of them. The weakness in my legs intensified to the point that it felt as though I ran a marathon, only not in the sense that there was soreness, but rather incredible weakness. Then came complete numbness in both feet. I suddenly couldn't go up onto the tips of my toes on either foot and it was near impossible to walk, not so much from pain, but from numbness and weakness. I was terrified. I also started having trouble urinating and defecating....and full disclosure, I could still get an erection, but it was all numb in that area too and, as such, dysfunctional. My anxiety was through the roof, around the clock. After about two weeks of this I called Dr. G again in order to explained all of the new symptoms. Upon hearing them, he said I'd better get an MRI, just to be safe. WHAT?!?!?! I now had my TMS doctor telling me to get an MRI!!! I nearly fainted when he said those words. Absolute panic and anxiety suffocated me. My mind immediately began catastrophizing: “Do I actually have CES? ALS? MS?” and “I’ll be in a wheelchair for the rest of my life,” over and over again. Yet even with all of that, deep down inside I sensed some calmness and peace. It occurred to me that this experience could only be one of two things: 1) it really was a medical issue, like CES (or ALS, MS, etc.), in which case there would be an operation or some other medical intervention and I'd simply have to live with whatever the outcome from that would be; or 2) it was a TMS last-ditch effort, the “big one,” as it were, in order to keep itself in control via fear and bodily obsession. Although I was still too frightened to discern which one it was, a part of me was inching towards acceptance.

Off I went to see a neurologist. I wobbled into the neurologist’s office, a nice man, who sat me down and started with some basic resistance tests, balance, and response. He then asked about my specific symptoms. After I detailed them to him, a look of worry came over his face. He anxiously began scribbling on a form. Nervously, I asked what he was doing. He responded that he was ordering an emergency MRI. “Oh great,” I thought, “That sure doesn't sound good!” But again, I perceived a feeling of calm around it all, the acceptance was growing. I went to have the emergency

MRI the following day, but I was in too much pain to lie down for the entire 45-minute process. I tried twice, but just minutes in, the radiologist stopped the scan because I was too fidgety. I didn’t know what to do because I clearly needed this MRI; it was, after all, an emergency! But it was also very clear that I’d be unable to lay there still. The radiologist suggested I find a location that offers upright scans. Frustrated and scared, I left the appointment without any results. I went home and researched MRI alternatives. I finally found a place that did seated MRI scans. I explained my situation and they had me come in right away. Being allowed to sit, though still very uncomfortable and claustrophobia inducing, I successfully completed the scan. I instructed the technicians to send the results directly to Dr. G, not to the neurologist. They expressed some concern since it was the neurologist who ordered the MRI in the first place, not Dr. G. But I stood my ground – I wanted to hear from my TMS doctor first because I was pretty certain of what the neurologist would push for based on my previous experience, even if there were no new findings. Dr. G would certainly tell me were he to encounter anything serious on the report.

 

Dr. Gwozdz called about a week later. I remember trembling when I answered the call. He asked how I was doing and, with a shaky voice, I replied that I was fine. Dr. G knew me pretty well by then and could tell I was scared, so he got right to it. He said there were some changes on this report compared to the previous reports, which is to be expected with time and age, but nothing he hadn't seen countless times before, ergo I was fine. He read back to me the section centered on the cauda equina since he knew I was worried about CES, and it too was okay. Instant relief washed over me. He asked if I wanted a copy of the MRI report – I declined. What did I need that thing for? Toward the end of our talk I told him that I didn’t want to follow up with the neurologist and he consented. A few weeks later, though feeling much better, I decided to follow through

with a TMS consultation with Steve Ozanich that I had booked prior to learning of my MRI results. This was basically the last remaining act I hadn't already done for my TMS recovery. Steve and I discussed many amazing things surrounding TMS and life in general. He also turned me on to Eckhart Tolle, which helped me immensely over the following several months as my own shift gradually came about.

my shift

Insights began surfacing quickly and frequently after my TMS consultation. All of the previous research, practice, and personal experience I had undertaken began to converge. As the dots connected, it became absolutely clear that I needed all of my TMS episodes in order to arrive to this point. I therefore started to enjoy life again, irrespective of any lingering TMS symptoms. Then one day, I can’t say exactly when because I was no longer focused on the symptoms, the TMS was no longer there. I now see just how much I learned about myself and life throughout this TMS journey. Moreover, I continue to learn as I deepen these practices. Where I once felt hatred and hopelessness surrounding my TMS, only gratitude remains. I am grateful for my TMS experience because it served as the catalyst for the necessary and meaningful changes I required. I share my experiences and insights with other sufferers in hopes that they too might come to know their TMS in a similar light.

 

other tms manifestations

I'd like to add that, similar to other TMSers, with recovery from my primary TMS source (lower back and sciatica), I also experienced either a complete cessation or a significant reduction of a myriad of other physical ailments that I now know to have been TMS. These include:

  • Tennis elbow in both elbows

  • Pain in both wrists

  • “Popping” sound in ears

  • Pain and swelling in both knees

  • Twitching in both eyes

  • Calf twitching

  • Neck stiffness and pain

  • Jaw pain

  • Dizzy spells

  • Chronic fatigue

  • Pain in both shoulders

  • “Frozen” left shoulder

  • Pain in both hips

  • Digestive issues

  • Overactive bladder

  • Allergies

  • Chest pain

  • Anxiety & Panic Attacks

  • Depression

  • Insomnia

© 2018 Kevin Martillo Viner, PhD