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Two Foot Surgeries Later... Just Now Finding Out About TMS

Discussion in 'Support Subforum' started by Clucker, Aug 7, 2019.

  1. Clucker

    Clucker New Member

    Hey everyone,

    Sorry in advance for the novel! Once I began typing, the words just kept coming. I figured it was, at the least, probably a very therapeutic exercise to get this all out and hopefully helpful for others suffering.

    My first introduction to TMS came about 6 months ago, when I was doing some research after being diagnosed with bilateral tarsal tunnel syndrome. At the time, I agreed that there was an element of truth to what I was reading about TMS, but I didn't believe it to be true for myself. And I certainly wasn't willing to give it a shot. After all, my podiatrist just gave the confirmed diagnosis of tarsal tunnel syndrome. Well... here I am now after my second surgery (tarsal tunnel release), still in a very similar position, and am beginning to think there's much more to this TMS thing.

    The Initial Injury

    While sitting in a chair at work at around 5pm, on the day after some trail running, I suddenly had excruciating arch pain in my right foot. I was barely able to walk to my car and drive myself home. It would settle down at times over the coming months, but it would never completely go away. It's always been assumed that the trail running was the incident that caused the injury, but the fact that it came on so suddenly, the next afternoon, has always been confusing and unsettling to me.

    The first podiatrist I saw wasn't able to find anything structurally wrong in the MRI and we reached a dead end, so I went on to podiatrist #2. Podiatrist #2 thought the MRI might have been showing signs of a damaged "spring" ligament. He instructed me to give PT a shot and said if that didn't work, then we could proceed with reconstructive surgery. He strongly advised against the surgical route, saying to use that as a very last measure, but after failing with PT, and having dealt with the issue for several months already, my mind had decided that the only way forward was surgery.

    Surgery #1

    Going into the surgery, I had read TONS of horror stories about foot surgery and in retrospect had become absolutely paranoid that I was somehow going to end up in the same boat. Spoiler alert... my worst fears soon became my reality.

    Coming out of surgery, the podiatrist said that the spring ligament was indeed damaged and that the surgery was successful. Finally, onto recovery! To start things off, I clearly had what I now believe to be a bit of a CRPS episode once the nerve block wore off. I was constantly woken in my sleep from severe, inescapable burning pain in my heel and big toe. Next up, the surgical site became infected.

    Despite these initial setbacks, I finally began to make some progress after the non-weight-bearing phase. I did eventually get back to being functional in everyday life, but never had a single pain-free step. Something always felt "off". After telling my podiatrist this numerous times, he said everything is fine, just continue with PT and give it time. But I was convinced, something was wrong.

    One morning, on my first steps of the day, I had an excruciating stabbing pain in my toes whenever I pushed off with the foot. I tried to brush it off, but before the end of the day I could no longer walk. My podiatrist was baffled by it and skeptical that anything structural was taking place. He even talked a little about how powerful the mind was in situations like this (wish I would have listened a little more in hindsight). However, there was no doubt in my mind, this was a physical pain with a physical reason.

    I went to my PCP and got a referral for an MRI. The MRI showed signs of edema in the third metatarsal, which as I've now learned, could really mean just about anything. Yet, due to the pain I presented with, my PCP, and later my podiatrist, dubbed this a stress reaction. Back to the walking boot and knee scooter for 6 more weeks!

    A Failed Recovery

    6 weeks turned into 12 weeks, as I was having a terribly hard time transitioning back out of the walking boot. And so continued the endless symptom imperative, bouncing from one debilitating symptom, to the next. I even had my first bout of serious lower back pain around this time. Fear and doubt had officially taken over, and so did the belief that I would never get better. To make matters even worse, the same symptoms rapidly began to appear in my other foot as well.

    I decided it was time to change podiatrists and get a new opinion. Right away, the new podiatrist said that a lot of my symptoms appeared to be nerve-related. To go with that, when he palpated the pathway of the tibial nerves on both feet, it was tender. We also did some form of nerve conduction study there at the podiatrist's office. It was confirmed. The diagnosis was bilateral tarsal tunnel syndrome, which is a common occurrence after previous foot/ankle surgery, and apparently not all that uncommon to see it arise in both feet. It made a lot of sense and initially felt really good to have an answer, however, for the next several months, I had a never-ending doubt in my mind that this wasn't the right diagnosis.

    This time I got a second and third opinion from podiatrists. I saw a spine specialist, neurologist, and rheumatologist. All agreed that tarsal tunnel syndrome could very well be the issue, but all of them also questioning it in their own way and offering other suggestions such as CRPS. All tests came back normal and ultimately no other diagnoses were considered.

    I should mention that about a year before this all began, I was diagnosed with Sjogren's Syndrome that just happened to be discovered on a blood test. I was sent to a rheumatologist who confirmed the diagnosis with another blood test, but we both agreed that I don't present any symptoms of Sjogren's Syndrome. He said to consider myself lucky. Sometimes the symptoms remain dormant despite the Sjogren's/Lupus antibody being present in the blood. The rheumatologist also didn't believe any of the issues I was experiencing my recovery from foot surgery were autoimmune related.

    Over the next few months I tried PRP injections, steroid injections, laser therapy, and every other alternative treatment known to me. Most did nothing, or made matters worse. The steroid injection, however, led to the nerve symptoms mostly disappearing for a couple of days. This was convincing enough for me and my podiatrist that tarsal tunnel syndrome was the right diagnosis. Since I wasn't making any real progress, and had tried everything else, I decided to go for the tarsal tunnel release surgery.

    At this point in time, I was in so much pain that I had to go on medical leave from work, which by the way is just a desk job where I had the option to work from home indefinitely. I wasn't able to sit for more than a few minutes, without my feet screaming in pain. If I sat with my feet flat on the ground for 30 minutes, it would feel as if I had been standing on my feet for 12 hours straight. When I tried to work laying down, crippling lower back, upper back, and neck pain prevented me. At just 27 years of age, my life was consumed by relentless pain, isolation, and a lack of purpose. A devastating place to be.

    Surgery #2

    In the last 2 weeks leading up to the surgery, I finally began to see some substantial progress. My daily steps went from only 500, up to about 3500. I even got out for short bike rides, but sitting, for whatever reason, was still extremely painful. I was also still getting the nightly "nerve pain firework show" when laying down for bed. So I decided to go forward with the surgery.

    At my 10 day follow-up, I was still unable to sit without severe pain. At my 4 week follow-up, I was still unable to sit without severe pain. 6, 7, 8 weeks. Severe pain. On top of that, I couldn't for the life of me get my activity level back up to what it was before the surgery. My back and neck symptoms were only continuing to get worse.

    At 9 weeks, the pain began to change. The extremely sensitive sole of my foot began to calm down, the shooting pains, and nightly "nerve pain firework show" began to disappear. Exciting, right? Not exactly. The pain was immediately replaced with some inflammation of a tendon that was altered in the first surgery. While the pain had moved, it was still so severe, that I now wasn't able to sit for more than a few minutes without severe ankle pain while sitting. It even hurt while laying down! But not while walking or during activity. I decided to take 2 days of complete rest and let any inflammation die down, but ended up being in even more pain. It finally hit me! My pain had entirely stopped making sense.

    Other Random and Scary Symptoms

    In case it's useful to others on here, I figured I'd type up some of the other extremely random and scary symptoms I've experienced since my foot issues began. Some of these predate the initial foot injury.
    • Numbness and tingling in the hands, back, butt, and legs
    • Needle prick sensations throughout my entire body
    • Random throbbing pains in various places (recurring in fingers, abs, left arm, feet)
    • Chronic fasciculations (BFS) throughout my entire body. Seems to follow the pain.
    • Sinus pressure/pain, with confirmation of no sinus infection
    • Vertigo/Dizziness spells lasting 30+ minutes
    • Stomach pain flare ups lasting 2-3 days at a time
    The Discovery of TMS

    Thanks to my badass care team (therapist and physical therapist), I have been slowly getting introduced to the world of pain science and how psychological symptoms could play a role in physical pain over the last couple months. Despite their consistent and polite nudging, I didn't fully buy into the idea until just a few days ago. I stumbled upon TMS again in a podcast and this time, it made complete sense.

    I've now purchased and read The Mindbody Prescription, and to no surprise, I clearly fit with the perfectionist/goodist mentality. I was a straight A student throughout college and figured I could apply that same hardworking approach to my health and recovery through all the conventional methods. I was willing to work harder than anyone else, so of course, I would eventually get back to 100%.

    My back and neck symptoms also perfectly align with Sarno's mentioned trigger points (glutes, lumbar muscles, and traps) that are said to be found in the vast majority of TMS patients. I wouldn't say that I've had a hard or stressful life in comparison to a lot of the TMS sufferers I've read about, but at the end of the day, I'd imagine that's all relative to each person and their own experiences. I've already had several eye-opening, tear-jerking emotional realizations in just these last few days.

    The response so far? I've officially started to turn the sinking ship around, slowly, but surely, as my foot had been regressing for about 3 weeks straight. With approval from my PT, I decided to sit for as long as I could, pushing through the pain just to see what happens. I've had mixed results, but on one occasion, the pain began to disappear after about 40 minutes, and by 90 minutes I was nearly pain-free. I took a quick break, then sat for another nearly pain-free 90 minutes. That hasn't happened in over 6 months.

    My back and neck issues have improved by 80-90% already. I sat up in my bed, slouched, to type up most of this and was in very little pain. I wouldn't have dared to do that a week ago.

    What's Next?

    I'd like to continue to pursue this TMS approach and see where it takes me. I don't see my journey being a quick one, but I'm willing to give this thing a go for the long haul. I can tell my brain is having some resistance to the idea of TMS, but that's something I'm going to continue to work on.

    I'll be seeing my neurologist and rheumatologist in the next week. I'm getting an ankle MRI and lower back MRI in the next week. If I get confirmation that there's nothing serious going on, I'm going to unplug myself from the world of doctor visits for a while. I also plan to take a vacation from PT once I get to a comfortable enough place.

    Being quite new to all of this, I figured it would be worthwhile to still ask if this sounds like TMS to those of you who have experienced it. I do experience more CRPS like symptoms, such as discoloration and temperature anomalies of the affected foot. Sarno states that CRPS (RSD) is a more severe form of TMS, that also includes the skin and circulatory system, so I guess it all still fits the mold. What are your thoughts?

    Also, do any of you have other suggestions for resources that you found particularly helpful? I just purchased The Great Pain Deception, so that'll be my next read.


    Props to anyone who has been through this, is going through this right now, or will some day. Nothing but love and respect for all of you.

    theroomstoocold likes this.
  2. theroomstoocold

    theroomstoocold New Member

    I am glad you are first ruling out anything serious before you go full TMS mode.
    I do feel like your story fits the mold of TMS. So many things are that Sarno explained.
    I am still learning too, and am still in my process of trying to really accept the diagnosis and get relief. So far I have not.
    I just joined today because someone on facebook said it can be really really helpful to read even just a post of two of success stories to help you every day to stay on track.
    The journaling is a huge thing. I have not been doing it and i feel thats why I am also not getting better. I am so good at repressing everything. I am currently getting in with a pain pyschologist which I have my first appt next week.

    I am sorry to hear about what you are going through and keep us updated
  3. Clucker

    Clucker New Member

    Thanks for reading my story! I'm still very new to this, but I can already see the impact that journaling has had. It's been a bit of a snowball effect. I expected the first couple sessions to be very powerful, but they weren't. That's been changing with each session though. Check out Nicole Sachs' podcast, The Cure for Chronic Pain if you haven't already. She goes over journaling quite a bit and talks to guests who share their own unique journaling experiences/strategies.

    I just read through your thread as well. Have you tried consulting with a TMS physician? Sounds like you're kind of in the realm of not knowing if TMS is the reason for your symptoms. Some validation from someone with professional experience could really help. Below is the link to TMS doctors and therapists in case you haven't seen it. Looks like there are professionals you can consult with over phone or internet if there's not one close enough to you. I've been thinking about doing this same thing.

    https://www.tmswiki.org/ppd/Find_a_TMS_Doctor_or_Therapist (Find a TMS Doctor or Therapist)
  4. Baseball65

    Baseball65 Beloved Grand Eagle

    My absolute favorite was "Healing Back Pain" by Sarno. I used it not only for my initial FAST recovery but also throughout the years for mystery flares of many locations. There is no reason why You can't recover fast too.... other than resistance to the process.

    Part of the recovery from TMS is to 'unlearn' all of the crap that we learned in the 'pain business' and the 'medieval structural mythology' as Sarno named it.

    A lot of the terms and diagnoses you wrote didn't even exist twenty years ago when I got better. I see new names of syndromes every day on this forum...apparently the MRI manufactured cash cow has been fattening up a lot since I recovered. Part of my own recovery is to 'bleep' out the name of these mythological characters like the unpronounceable Russian names in Dostoevsky....(LOL)

    The most important focus of healing is what was going on in your life when these symptoms appeared? Sometimes this takes some quiet reflection especially when we've been drinking the koolaid for a long time. Work, Family, Finance, Relationships, Career Goals... Spiritual or Mental troubles?

    Be careful of the 'confirmation' your looking for from the medical world... It might never come. Their job is to find problems so they do...new ones all of the time! .... I was told if I ever even JOGGED again I risked paralysis. That was two decades of very, very active life ago with all of the associated oops's attached (falls, body slams, Hit by pitches and such). This isn't a different treatment, it's a different diagnosis. A permanent and liberating one at that!

    The human body's capacity for healing is beyond our ability to fathom....

    which sucks for them because then they have nothing to sell us.... it came free from , to quote Sarno, 'The Divine architect'
    whalesy likes this.
  5. Clucker

    Clucker New Member

    Hey Baseball65, thanks for the feedback! I'll pick up a copy of Healing Back Pain as well. Sounds like that's still considered to be the best book, despite The Mindbody Presciption coming out later.

    I really like the idea of bleeping out the names of all these scary symptoms/syndromes. I've already started trying to replace the word "pain" with "sensation" based off someone else's suggestion. I can see how much stuff like that changes one's perspective to be much healthier.

    The more I think about what was going on in my life at the time of the initial injury and the months leading up to my first surgery, the more I realize it was easily the most stressful time I had been going through in at least the previous 3-4 years, if not much longer. Pair that with the hypochondriacal mindset that I'd been developing for years and this TMS thing really becomes a no-brainer.

    I met with my podiatrist today to go over the ankle MRI results, and structurally, everything looks the healthiest it's been since this all began 2 years ago. The "tendon" I've been sure is inflamed looks 100% healthy. No other signs of structural issues anywhere else in the foot/ankle. He looked at me like he couldn't believe what I was saying when I told him I was happy to see nothing in the MRI and that I had begun to believe that the pain was psychological.

    The concensus amongst each of my doctors is now universally becoming CRPS, which they each have their own take on for how to treat. I plan on embracing it as Sarno suggests, by treating it as TMS. All of the other scary symptoms I've experienced, I know can all very easily be chalked up to TMS/equivalents.

    I'm definitely aware that this search for something with my doctors could go on endlessly or that they might throw something else out as a diagnosis, but thankfully, with the knowledge of Sarno's work and the help of my PT/therapist, I believe I can safely determine what is and isn't TMS or an equivalent and I feel confident that I'll know when the timing is right to pull the plug on the doctor appointments.

    Thanks again for reading my story and for the honest feedback! Very excited continue the work and see where this all goes.
    whalesy and HattieNC like this.

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