Day 1 Learned about TMS 2.5 months ago, now I see it in so many parts of my life

[Northy]

I'm very new to Dr. Sarno's work and the concepts underlying TMS, but I'm not new to aches, pains, and "injuries" that I now believe (or at least I'm >90% sure) can almost all be attributed to TMS. I've never journalled before and I don't really have a plan for what I'm about to write, so this will likely be somewhat stream of consciousness. I'm tempted to say "sorry if this gets long" but I'm not recognizing that my tendency for something like a preemptive apology may be one small part of why I have TMS. So instead I'll give this disclaimer – this is likely to be long winded, rambling, possibly disorganized, and I'm going to be ok with that and I'll fight my urge to read over and edit it trying to make it perfect. It might suck, and I'm gonna be cool with that.

Where to start... I first became aware of the ideas of TMS when reading through a different, triathlon-focused forum called slowtwitch. I'm a triathlete. It's a hobby, but it's a big hobby and a large part of my life. BUT, I haven't raced since the fall of 2019. Part of that might make sense, given that most races were cancelled in 2020 because of COVID. But then, why didn't I race in 2021? The reason: I've been in a cycle of pain and injuries since December of 2019. All the "injuries" are running related, or at least that's what I've been viewing them as. It started with my right Achilles on December 6th of 2019. My last race had been in September of 2019. It was a long-distance triathlon and by all objective measures I'd done well. I set a personal best time and was quite close to qualifying for the Ironman World Championships. In fact, if I'd been just 4 years older (therefore in a different age group) I would have qualified. Still, I knew I didn't have my best race because I got dehydrated during the bike portion and it came back to bite me during the run. Long story short, by several measures 2019 had been my best triathlon season to date and I was all excited to take what I'd learned that season and roll it into an even better 2020 season.

After a short break from training I ramped back up and in early December my Achilles started hurting. Turns out I now suspect it wasn't actually injured at all, but was a TMS symptom brought on by the stress of the end of a semester (I'm a chemistry professor) and other family stressors (I had three kids then, and four kids now – yikes!). Anyway, at the time it all made sense to me – I'd ramped up my training too quickly, added some extra weight lifting, and surely it was just too much for my right Achilles (though current me would say "and not too much for the left? You do run, bike, lift weights, etc. with both feet you know..."). I went to see my physical therapist, who suggested I'd be back to running in very little time since I caught it early and the area didn't look swollen or inflamed, etc. Trouble is, I have a tendency to go off the deep end and get fatalist very quick whenever I get a sports injury. After just a week or so of not running I was emailing my coach lamenting about the fact that this was going to ruin the run-focused block of training I'd started and derail my goals of qualifying for the world championships next year. I was in full-on panic, fear, worry mode. I now recognize that – even if there was some small trace of an injury at the time – it was my reaction to the pain that likely sent me down the rabbit hole of reinforcing that pain and feeding the pain cycle with fear and worry. This fear/panic/worry had happened to me once before with a high hamstring tendon injury in 2011, and I wasn't able to race for two seasons (but I was able to ski just fine... which doesn't make sense in hindsight and further suggests it was a TMS issue).

So that's what kicked things off in late 2019. I kept seeing PT, I traveled out of state to a specific podiatrist to have EPAT treatments, I dove in to the Alfredson Achilles Tendonitis protocol, I ramped up my biking and swimming and started using the elliptical to make up for the lack of running, I was in panic mode for months. By ~March I was slowly getting back in to running, but was still cautious and fearful. Then in April, just as I was feeling more comfortable with running, my left IT Band flared up for no apparent reason. This also happened to be about the time schools shut down for COVID and I was forced to manage home schooling of my three kids (my wife is an essential worker). My access to swimming also shut down as my pool closed, again because of COVID. Now my triathlon season is definitely over. So a stressful time and a new symptom. More time off from running and I went 100% all in on bike riding. Overall, I'm sure that was good. I ended up biking more than I ever had, even averaging 15+ hours of riding per week for about 6 months. I try now to lean in to the positive aspects of that aerobic base. But at the time I was still frustrated with no swimming and a lack of running.

I'll try to trim the next part by focusing on just major events:
• grandmother passes away in May, I feel guilty that I hadn't visited more often when her health was declining
• kids are still remote schooling throughout the fall of 2020, and I was juggling remote teaching myself, plus writing a grant proposal. Fall 2020 was a challenging and stressful time. Surprisingly I also seemed to have less overall pain during this time; perhaps that's because I was distracted by being so busy and I was also quite irritable so maybe I was feeling and expressing my emotions better?
• I was feeling somewhat optimistic by January/February 2021, and then an uncle I was very close to passed away suddenly. I regret not having visited or talked to him much since the previous summer. Within a week I had developed pretty bad groin pain and pain in my right shin/calf (I interpreted this as a carry over from the Achilles).
• to try and finally heal myself I took up Pilates (believing I was weak and imbalanced) and started seeing a new PT. I enjoyed Pilates, but the calf and groin pain increased until I stopped running completely again in March. I was beginning to believe that I'd never be healed, I was destined to a revolving cycle of injuries, and I'd never be able to race to my potential again. Fear, worry, panic, depression, all (in hindsight) feeding the pain cycle.

Sometime in the early summer my groin pain was receding but the shin/calf pain was still there. I went to a new orthopedist to check out my shin/calf and he ordered an MRI. This took quite a lot of time because I have a pacemaker (different story all together) but I finally got the MRI done in August. The result – surprise! – no evidence of anything wrong with my calf or shin. I thought "well that's good, but why has it been hurting for 8 months!?!"

Then the most significant next event – I went to do a bike fitness test in mid-September: three repeats of a steep climb nearby that I use periodically to gauge my fitness. The first lap my power was down significantly relative to earlier tests in the summer. Then I got two flat tires, fixed them, and the next two laps were similarly poor. I chalked it up to a bad day but I was frustrated. The next day, on a run, my groin pain came roaring back! In hindsight again, there were a few life events that likely contributed to the bad ride and groin pain the next day:
– my wife and I had our 4th child in August. Likely adapting to that.
– my wife's mother and her partner had just arrived for a 2-week visit only days before the ride. They both stress my wife and I out.
– a busy semester had just started, and my work stress was likely increasing.
– the "bad" run was likely influenced by feeling like I had "failed" my bike test the day before (need outcome independence...). Also, the logical part of my brain: I can't pull my groin riding a bike given that I'm clipped in and there's no way to over-exert or stretch your groin when clipped in!

I was seriously frustrated at the groin pain returning and looking for answers. I stumbled upon this thread on the triathlon forum I mentioned:
https://forum.slowtwitch.com/forum/?post=5464855#p5464855 (4 years of leg soreness (Page 2): Triathlon Forum: Slowtwitch Forums)
I watched the video linked by the person who posted under the name Chronic (who happens to be Enrique on this forum) and that was my first introduction to TMS. It sounded a lot like me – driven, perfectionist, stoic, goal-oriented – so I messaged Cronic/Enrique, ordered a copy of Dr. Sarno's Mind Body Prescription, and have continued exploring (and recognizing) TMS in myself for the past 2+ months.

I'm going to think of this as my first journaling experience. It's a long-winded version of how I came to this forum and to thinking about TMS. I'll probably post again soon because there's more context about what I believe were TMS pains from earlier in my life, but this is where I'll leave it for now. If you've made it this far, thanks for reading!

 

[Northy]

This isn’t a “day 2” posting, but instead a general continuation of my first post.

I believe I’ve accepted the concepts of mind body pain fully, but I recognize in myself little doubts, worries, and fears that still crop up. I’ve given some thought as to why and I think a lot of it comes from the fact that I was diagnosed with ankylosing spondylitis several years ago. I think it was around 2007 or so. The diagnosis was made by a rheumatologist I was referred to because I’d had significant hip/glute pain that I couldn’t explain. I’d had the same type of pain crop up before, but just assumed I’d overdone something physically, took time off exercise, and then gradually got back into activity once the pain went down. But this time it was more significant and an orthopedist I saw believed I had a femoroacetabular impingement and was recommending surgery! I was in my mid-20s, a very active skier, runner, cyclist, and was in no rush to have surgery. I’d had some blood work done that showed a genetic marker common among people with ankylosing spondylitis (hla b27), and was therefore referred to the rheumatologist.

When the rheumatologist first saw me he evaluated my posture, my spine and neck flexibility, my lung capacity, did some other stuff (don’t remember, it was a while ago) and said he was skeptical I could have ankylosing spondylitis given my flexibility and lung capacity. Then he took x-rays and said I something along the lines of “you have tell-tale characteristic sacroiliac inflammation, you do have ankylosing spondylitis.” From that point on, and until about a week ago, I’ve associated essentially any aches, pains, sharp spasms, etc. in my hips/glutes/low back with my ankylosing spondylitis.

Since that initial diagnosis I moved across the country and have had two different rheumatologists here where I now live. The first simply did once per year check-ups and kept me on daily dichlofenac because my mobility remains good and my case appears mild. When that doctor retired I went about 18 months without seeing anyone, and I only occasionally took the diclofenac. Then after two “flare ups” (I now suspect they were TMS pain) I decided to see a new rheumatologist, and I really like this new guy. He’s tremendous at answering my questions and we get along great. He also tells me my ankylosing is a very mild case based on the fact that it’s been “controlled” by diclofenac and a corticosteroid dose pack if I have a really bad flare.

Turns out the corticosteroid pack appears to have helped me with exactly one flare. It was right around Christmas of 2018 and my right hip/SI joint flared up so bad I couldn’t run (I was running 40+ miles per week, on top of biking and swimming) and it hurt to walk. We travelled to visit my wife’s family for the holidays and I took a short course of prednisone to treat my “ankylosing flare.” Within days I was back running again, which served as a great reinforcement of my belief that the issue was simply my ankylosing and “that’s what’s wrong with me whenever I get hip/glute/low back pain.” Since that time, all of my attempts to control or treat hip/glute/back pain flares with corticosteroids have not worked.

I am now slowly, but progressively, coming around to the belief that all – not just some – but all of the episodes of hip/glute/low back pain that I’ve had have been TMS rather than a result of ankylosing spondylitis. I’m now not even sure I have ankylosing spondylitis given how different my experience has been relative to other stories I read about ankylosing patients. Of course, I don’t doubt the very serious impacts ankylosing spondylitis can have on people’s lives, not one bit. Those whose disease progresses to where their spine literally fuses together, that’s not neuroplastic pain. As far as everything I’ve read so far, TMS does not result in your bones fusing together. What I’m skeptical of is whether I personally have ankylosing spondylitis after all. I’ll also note that I have my annual check-up with my rheumatologist in a couple weeks and I’m looking forward to talking to him about all of this.

So this long post is largely my retelling of why I think it can still be challenging for me to believe all my pain is neuroplastic. You see, for the past ~15 years I’ve been identified – and self-identified – as someone with ankylosing spondylitis who will naturally have back/hip/glute pain that comes and goes at times, and there’s nothing I can do about it. I also experience Raynauds syndrome in my fingers, which is another rheumatological disease, and has reinforced my belief that I have these autoimmune disorders. It’s hard to shake 15 years of learned association.

Even after reading Dr. Sarno’s book and so much of the information on this great website I still started a Medral corticosteroid pack just a week and a half ago (December 8th)! I had been making good progress with my shin and groin pain, I’d had several corrective experiences and was emerging from fear of those pains, but my left back/hip/glute started to really hurt. I initially chalked it up to an “extinction burst” but when it wasn’t going away I retreated to “this must be a legit ankylosing spondylitis flare, time to break out the steroid pack because this is different than TMS.” Over the 6-day course the pain didn’t really go down, and at times it got worse. It also shifted around between hip, to low back, to deep glute, to abductor, back to hip, etc. (all on the left side). I grew very frustrated and it was in that frustration that I began to finally question whether it’s ankylosing spondylitis at all or actually “just” TMS pain. The fact that it shifted around would be a clue, but I’ve always actually thought that’s exactly what ankylosing pain does since that’s always been my experience with flare ups! It was still a learned association of things I now would otherwise recognize as TMS. Like I said, given that I’ve self-identified as an ankylosing spondylitis patient for ~15 years and have associated all my hip/glute/low back pains to the disease it’s a really hard association to break.

A few days ago I took my diclofenac pills and diclofenac topical cream and put them in an old coffee can deep in our bathroom towel closet. I haven’t taken any since deciding to believe that all this hip/glute/low back pain is – and has always been – a manifestation of my TMS. I still feel twinges of pain that move around my left side, and I can still catch myself thinking “I should take two diclofenac tonight for this,” and then I remember to stay the course. I figure a good barometer of my belief will be when I no longer even think about diclofenac and/or corticosteroids. I’m looking forward to speaking with my rheumatologist about all this.