Starting to consider myself a success - twitching, back pain, pelvic pain, RSI

Hi all,

Apologies in advance for the length. I have occasionally frequented this forum, particularly when I was at my worst. I don't know if this forum is nearly as active as it used to be some years ago, but figured I'd post here anyway just for others like myself who might sift through this forum for every little bit of hope they can capture.

My first adult TMS episode I can remember, although it was not until recently that I recognised this to be TMS, was around 3 years ago. I had a constant, spasm in my right eyelid. Not like a normal twitch (fasciculation), this was a slow movement which caused my eyelid to fully close, pause, then open again slowly. It started out of nowhere one evening while watching TV and didn't stop for about a month. It would occur every 5-10 seconds and drove me insane. I went to a doctor and an optician who were both of little help, advising me to simply drink more water. Exams were coming up and once I got myself fully engrossed in studying and gave the eyelid little thought, it stopped.

Fast forward another year and I had been doing a lot of running and got myself into really good shape. Gradually I noticed my right knee started to hurt. I assumed it to be a running injury and took a break, but the pain kept getting worse. After a few weeks of self care and rest did nothing, I began to get worried. The pain got so unbearable that I could hardly walk 50 feet without having to stop. This lasted around a month again, with doctors and physios finding no explanation on an X ray or an ultrasound. Again, it just sort of vanished when I stopped paying so much attention to it.

Shortly after the knee episode, my thumb began to spasm and my right arm became (felt) weak. Thanks to my pharmacology/medical science degree, I was already well versed in the horrors of neurodegenerative disease and began to fear the worst. I was on the lookout for other symptoms, and one night after having my first ever panic attack, my entire body erupted with muscle twitches. This led me down the BFS rabbit hole. My calves twitched every single second, of every single day, for at least 9 months. I had buzzing, tingling, feelings like water was running down my leg. I didn't even bother going to the doctor, because I realised it was all just anxiety, but I was still worried about having to endure this for a long, long time. Finally, something took my mind off the twitching and it faded into the background - woohoo! Only, that thing turned out to be RSI.

I was about to leave academia behind me and begin working a manual job with a promising career. I was excited, but nervous. I had been a bookworm my entire life. I am from a manual working family in a rural area, so it's not like it was totally foreign to me, but definitely not where I thought life would take me. It started as thumb pain in one hand, and rapidly worsened to pain in all fingers and thumb of both hands, both wrists, tightness and fatigue in forearms, and a general "uneasy" feeling in my arms - hard to explain the sensation. These symptoms were there whether I used my arms or not. I knew this was TMS, but it was hard to shake. I feared for my future, would I be able to work with my hands and earn a living? After 3 months I hit rock bottom and decided I just didn't care anymore. I refused to let it make me miserable anymore. Within 2 weeks, I was pain free and have remained pain free in these areas.

Next on the list was neck and back pain. Started after feeling a jolt in my neck while out fishing. Was probably nothing, but my OCD latched on and within a couple days it kicked off a 3 week spell of constant anxiety and constant pain. After 3 weeks though, I got over it and back to normal. Next up was pelvic pain. I knew this was TMS before it even started. By this I mean, I felt a twinge (very normal, happens from time to time) and I had the same fear thought as I had with the back and neck pain: "oh god, is this the start of another pain episode". Even though I saw it for what it was, there was nothing I could do to stop it. It was as though I was my normal self, watching my thoughts spiral out of control, descending into obsessive madness. The constant pain soon followed, and moved aorund all over my pelvis. Every bit of it hurt, I needed to pee every 5 minutes, it hurt to even touch my manhood. This went on for about a week, before I decided that I was just going to stop fearing all of it. No fearing the pain, no fearing the thoughts about my pain. Within a couple days I was back to pretty much no pain down there.

So here I am, pain free for now. I have no doubt I will experience another TMS episode, maybe I'll experience these episodes my whole life. However, over the past year I have gotten so much better at recognising them, and letting them pass me by much faster than before. I'm very aware the role my apparent OCD plays in this process. The best thing I have learned for dealing with OCD is to not fight, resist, or try to change thoughts. A lot of the time on forums like these, people will tell you that you need to "change your thoughts". This is correct, but also incorrect. Ultimately, your thoughts will change as you get better, and you won't be so latched on to your symptoms and the way you feel all the time. But, at least for me, changing your thoughts comes about as a result of changing your beliefs.

Ask yourself, what are your beliefs in relation to your pain. Do you believe that the pain has the ability to ruin your quality of life and that unless you can be rid of it you'll never fully enjoy life? If that's the case, good luck stopping those fearful thoughts from coming at you. Fighting thoughts on a moment by moment basis is a recipe for loss. View them simply as symptoms, not the cause of your problems, which is your irrational beliefs of what your pain is and what it means for your life. The only way to break the obsessive pain cycle is to change what you believe about the pain. I believe this hits on the same premise that Alan Gordon speaks of, when he says it's often more about the energy with which we approach healing, rather than what exactly it is we are doing to heal ourselves. Ultimately, I don't think it matters too much whether or not you stick with a strictly Sarno protocol, or something more like Alan Gordons approach, or even just meditating and doing yoga or whatever.

If your beliefs change from "pain is terrible, I can't live like this I must fix it" to "pain is what it is, I can be happy anyway so what does it really matter", you will get better.

 

Thank you for posting your success. I’m sure it really means a lot to so many to hear how you dealt with all this suffering. I can relate to so much of what you posted. Congratulations.

 

Brilliant post, @michaelg21, thank you so much for taking the time to create it! Might I suggest that you make it your Profile story? If you hang around here some more you could easily point people to that if you think they might benefit (I invite people to read my profile all the time, where I also include other resources and other posts that I like).

A few things I am noting:

YES, YES, YES, a million times YES. This is the key to managing a brain mechanism that is in all of us, which can not be "cured", but which can absolutely be managed in the otherwise unmanageable modern world.

This is a valuable distinction, so thank you for this. We see a lot of OCD behaviors here, which are sometimes very difficult to address. I agree with you 100%, but I can probably improve how to get this concept across by being more mindful of the subtlety involved!

Thank you again, and keep us posted!

~Jan

 

I feel like OCD is TMS.
I totally agree with you on not trying to control your thoughts. My story has many similarities to yours. I have found mindfulness and listening to Alan Watts have totally changed the way I live.
I no longer try to control my experience, I don't hide from bad thoughts and I don't cling to good ones. I just sit back and let it all unfold.