Day 4 My Journey and What They Told Me

For me, TMS is a lot bigger than just even pain. I have struggled for years with sensations that I don't want and my own extreme reactions to them and my own hyper-vigilance waiting for them to come. It was terrible. I still remember the first major one, the one that set me off on this whole years long path. I was at a critical point of graduate school. I was in love and headed toward engagement.

My girlfriend and I were talking late, late at night on the phone when I suddenly felt this "surge" in my chest, like something just rushing through me and out at an angle. I was stunned and scared.

My girlfriend was very kind and helped me calm down from it. But the next days were terrible.
I went to a PA at the Minute Clinic. Hiatal hernia? No, but. . . something. The next few days calmed down and then came back again to me, at night, then during the day. I remember one day walking past the same CVS and just feeling like my vision was going red and I was scared.

I had this for a couple years on and off. I remember once being at church and just feeling like I had to get up and get out. We walked together outside in the rain. My girlfriend told me of her father who used to take her out for long bike rides whenever she was feeling stressed. She loved the long slow motions. (I also discovered at this time, random factoid, that I could use Listerine Mint Strips to help calm myself down: a sudden intense blast of mint. I think mint has calming properties as an herb or something. But this worked.)

I suffered from this surging and intense rushing for ten years probably. I don't get it now, or only very occasionally and now not something I react to. After two years, the very day that my last reader, a great scholar, agreed to be on my dissertation committee I had another surge, a surge that I called my Dad about. Dad started talking about having a heart attack and how an elephant sits on your chest. I called 911. The volunteer firemen asked me if I wanted to go to the hospital; they said I seemed fine, just worked up. I said I probably should go, right? They said they would take me. On the drive I started I losing feeling in my hands and arms, which really freaked me out. But I was told later that it was just too much oxygen in me, since I was being given oxygen from a tank.

They checked me out. I asked the nurse if there was someone else there with a more serious condition I could pray for, he said pray for everyone. So I tried! Later, they did a stress test. I felt some tightness in my jaw and so they stopped and did an echo cardiogram. They came back and said they wanted to do a minor surgery on me, an angiogram, to go in through a catheter in my leg and release dye into my heart to test its function. I said, OK.

They did the procedure and found nothing. A month later, the followup cardiologist told me this: "I don't know what caused your problem that night, but it wasn't your heart."

A wonderful thing to hear--but it didn't stop me from the surges or the feelings.

I got an academic job (thank God!) and continued to have these but rather less so. My wife now gave birth to our kids and I started to get back pain, especially after my first son was born (I have four sons now and one daughter!). I rmember crying with the Deacon at our church and saying that I don't know that I can be a man for my son. He was very encouraging.

I got back pain the next year or so. It came and went. Basically, I would seize up and then be down for a couple days, rest, ice, Motrin, and then I would get pissed off and get back up, stop taking the Motrin and just get back to it, however much I hobbled or had multiple spasms as I did it. Then it would go away. One Christmas morning was terrible. Church was very hard that day. Then a party at the Deacon's house. I had to leave. I was crying in the front seat of the van as we drove home I was in so much pain. (All I had done was reach over while sitting on the floor opening presents; that motion sent me into this pain.)

I ended up at a doctor's office for this one, about 9 months later. I was better but not great. He said my back should have healed by now and so he sent me to "the best physical therapist in the state"--which he said would get him into trouble with his medical group because he was supposed to only send people to their PTs! So, good guy, even if mistaken.

The PT--this was during October 2020 (five years ago, now that I think of it)--said I was the classic case of a middle-aged man and now I was transitioning into having back pain like all men do. He said I should expect to have 2-3 episodes of these intense back pains per year, just like he does, and all he can do is teach me to manage them.

I thought: "That sucks. Really?" But I did what he said and did my $3,500 worth of therapy over the next few months. Then I just quit. I was better enough and it wasn't really helping that much.

Then I tried a posture method. This made sense to me more than anything else. The idea is that we have back pain because of our bad western posture. Back pain doesn't exist in the rest of the traditional world because those people don't tuck their pelvises, etc. It's a nice idea and makes some sense. It really helped me for a year or two, 2021-2023, but then it started to fail. I got back into it and finally I was told at one point by one of the coaches that maybe I really did need surgery or something, if their methods weren't working on me. So, that was my last meeting with them.

My father in law was a Neurosurgery PA and he was always clear that surgery is almost always a waste of time and doctors know this. He also told me that the doctor he worked for had told him years ago that nature had badly designed the human back and that's why we have these problems!

What a stupid thing to say, especially from the perspective of the study of nature. Maladaptation like that does not happen.

Then I found an online PT who introduced me to Allan Gordon and John Sarno. This PT, interestingly, has his patients study these authors BUT he also has them find motions that are good for them, because he has found that, for example, if your right leg raise has a 9/10 pain, then if you do six to eight left leg raises, you can very often find that when you do your right leg raise again the pain has gone down to 5 or 6. Basically, he seems to use these movement methods to help people stay positive while he also guides them through the MBS/TMS literature. He told me that I almost certainly have TMS.

But his program was ultimately not that much help for me. I didn't know where to go after it; so I just reread The Way Out and then started to look for Sarno's books.

I recently had a confirmed diagnosis of TMS by a TMS aware physician that I found on TMSwiki.org.

Oh, and the pain has mostly moved away from my back and, last year, it was in my right leg, down the back hamstring (sciatica-style) and then that calmed down and in the summer it was in the right knee for a couple months and now it is in the left knee for the last two months. I thought at first that maybe it was due to running or bad shoes.

No, the TMS doctor said. Unless you get actually injured, running the way you do (lightly, not that much) is perfectly healthy and cannot harm you.

So, that's the stories of what I have been told by doctors!

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I'm sure someone reading this will think I say this all with perfect confidence and boldness about the future. I am confident and bold and I am strong. But I don't always feel that way. So, don't be governed by how you think you're supposed to feel!

It is the truth that will make you free--and the truth is that you have power over this.

Thanks for reading!

 

@crastinus — what a long difficult tale. You’ve been through a lot. Welcome. It’s great you’re doing the SEP!

 

Thank you!