Still struggling to fully believe it’s TMS — seeking guidance and reassurance

Hi everyone,

I’ve been struggling for a long time with what I now believe could be TMS or a mind-body syndrome. My story goes way back.
In October 2010, I had a non-epileptic psychogenic seizure after a frightening experience — I fell, temporarily lost control of my legs, and felt pure panic. Since then, my nervous system has never felt the same. I’ve lived with chronic anxiety, muscle tension, and physical symptoms that seem to move or change depending on stress and fear levels.
Then, in 2018, I injured my lower back, which reactivated a lot of the old fear. Since then, I’ve been experiencing:

• Persistent tension in my right glute (piriformis area) that sometimes spreads to my hamstring, calf, and heel (sciatica-like pain).
• A constant tightness on the right side of my neck and trapezius that makes my head feel heavy and dizzy.
• Periods of trembling or inner shaking, especially when the tension starts to release.
• Wooziness, dizziness, and a heavy-headed feeling that get worse when I’m tired or stressed.
• Episodes where it feels like my whole right side (from glute to neck) is one chain of tension that connects physically and emotionally.

I’ve seen many doctors : neurology, orthopedics, physio — and none of them found a clear structural explanation. Everything comes back “normal.” Yet the sensations feel so real and sometimes completely take over my life.
I know the TMS model says these sensations are generated by a hyper-alert nervous system and conditioned fear responses. I do see how fear, hypervigilance, and body focus keep the cycle going. But when the symptoms are so physical and consistent, it’s very hard not to doubt.
I’d really appreciate hearing from people who had a similar journey — especially those who had long-standing, one-sided muscle tension and dizziness connected to sciatica-like symptoms.
How did you finally convince your brain that it was safe?
What helped you calm the fear loop and get your life back?
Thank you for reading. I’m still trying to trust the process and to remind myself: nothing is structurally wrong, my body is safe, it’s my brain trying to protect me.

Mohamed

 

"I know the TMS model says these sensations are generated by a hyper-alert nervous system and conditioned fear responses."

Partially.
But what is causing the hyper-alert nervous system (anxiety)?
Where do conditioned responses come from?

There is much more to Dr. Sarno's original theory behind TMS and it's origins and function within the mind and body.
The repression of emotions
Our personality traits - our operating system and conscious vs. unconscious beliefs
and above all our repressed RAGE.

Education is the very first step in TMS recovery, and around here we highly recommend you read and digest any book by Dr. John Sarno. Sometimes it takes a few readings but seeing yourself within the pages of his books is one of the best ways to alleviate some of the doubt. You don't need to alleviate all of it right away, you'll just begin to open your mind more to the concept.
On the flipside
What else can it be? You've gone through all the Doctors and other specialists and clearly have not seen the results you hoped for, so you can put all that stuff in your back pocket. They don't have the answer.
I have had one sided symptoms (spread to both sides eventually, but not mirrored), I had those non-epileptic seizures, the wooziness, dizziness and inner shakes. Someone who is informed about nervous system work explained to me that this is NORMAL when your nervous system is always operating at high alert for a long time, and would eventually fade. He was absolutely right - all that is gone. Occasionally it returns to visit for a few minutes but when I label it in my mind as TMS it quickly disappears.
How did I convince my brain all is safe? I'm still working on that and I've take it step by step. I started by doing the free TMS program on this website called the Structured Educational Program (found at TMSWIKI.org scroll down the page, which is FULL of great TMS information and links by the way) which calls for reading that Dr. Sarno book so you can be educated about TMS from the source. This program takes you through the psychological work that helps you examine your emotions, repression, habits, repressed rage and all manner of other things. It's fine (and most of us do) augment this work with things like meditation or mindfulness to help that nervous system calm down a bit.
There are several techniques to help work through the symptom/fear loop. Mindfulness is most certainly a large part. We step into the loop when we are triggered. Right now you are most likely just allowing the triggers to take hold and send you spiraling into a looping whirl of thoughts. What if you got triggered - either by a scenario, words someone said, a sensation or an emotion and your immediate reaction was "OH NO!!!" but then you took a breath, felt that horrible rush of oh no feelings (in the body - usually pretty unpleasant) thoughts and just let it happen. Let it all come crashing down on you. You feel like utter crap and fear you are going to somehow loose it but you just get it happen...and it happens for maybe 50 -90 seconds and then eases off. You can breathe more easily and you realize you are actually OK. None of those thoughts came true, and the icky feelings passed.... now go do this over and over and over again until the icky feeling doesn't bug you much anymore. This is the physical method of what Dr. Claire Weekes calls floating (she talks about it with thoughts, but really you can do it with thoughts, emotions and sensations) - others call it "allowing". Dr. Claire Weekes has written a few small books dealing with anxiety and I suggest you also read one of those. She gives clear concise directions of what to do in all kinds of situations and works every time!

"I’m still trying to trust the process and to remind myself: nothing is structurally wrong, my body is safe, it’s my brain trying to protect me." AND my brain is trying to protect me from the hard things I tend to not want to think about, and have pushed away into the far reaches of my mind. Things like rage, anger and sadness which are also absolutely OK to feel, because that's how humans were created.

 

Thank you so much for this detailed guidance, Jan. I really appreciate you taking the time to lay out these resources and the background on TMS. I’ve tried a lot on my own before ; reading, exercises, and different approaches but nothing has really worked so far.

This time, I feel determined to truly learn and focus. My mental hyperactivity has often kept me from practicing effectively, but now I’m committed to concentrating on the fundamentals and genuinely seeking that peace. I’m ready to take it step by step and give it the attention it deserves.

Thank you very much

 

Thank you so much for taking the time to explain all of this with such clarity and detail.

Your explanation really helps me understand the process and the reasoning behind it, and I deeply appreciate it.

I wanted to share a bit about my own experience because my symptoms are so unusual that sometimes I feel like I’m the only person who experiences them. When my right glute or piriformis muscle tightens, it automatically triggers dizziness and a strange sense of being off-balance. Sometimes it spreads down to my legs, sometimes up to my neck. Sitting makes it worse, and at times I feel almost like I’m drunk when the symptoms flare up. I really don’t understand this connection between tense muscles and dizziness.

Other muscles sometimes tense strongly as well, and that also gives me a sense of imbalance. For me, it’s this combination of muscle tension in the lower back, upper back, and especially the right leg (sometimes both legs) and the dizziness that is the most frightening. Every time it happens, I feel like I might lose function in my legs.
Over the years, these symptoms and the anxiety surrounding them have even caused me to develop high blood pressure, which I manage with medication. I know deep down this is purely psychosomatic, triggered by severe, long-term anxiety.

I’m naturally very sociable and have never had social anxiety. I’m the type of person who helps others and cares deeply for my family, though I’ve learned to hide my empathy at times to avoid being exploited by toxic people. I’m always there for others, but these symptoms and this anxiety have made me lose sight of who I truly am.

Reading your explanation reminds me that it’s possible to face these sensations, let them happen, and understand that they don’t mean my body is in danger. I’m determined to apply this approach and start reclaiming a sense of safety and peace in my own body

 

OK, let me clarify - around here we aren't going to pay much attention to your "weird symptoms". Part of the TMS mind is that you feel NOBODY else has ever had your symptoms and that you are one some kind of island of isolated suffering. We've all been through this feeling and the thought process.
This is a rouse. It's all part of that "keeping you safe". It is incredible how creative the mind can be. I've had some WILD symptoms.

Your description of what you focus on seems to be that you have a physical sensation that triggers you, and your nervous system just reacts. Your brain wants you to think you have no control over this at all - but you do.
The brain and nervous system work this way: when you get some stimulation that typically triggers your cycle of symptoms the first reaction is knee jerk. You don't have control over that and it happens in about 3 seconds: not enough time for you to consciously respond. However right after that there is a little gap, almost like a hiccup that allows you to have control and CHOOSE how you will further respond or react. You can react by freaking out, worrying, listening to the depressing stories your mind is going to create or you can choose to sit there and feel all the sensations and cultivate a sense of safety within those sensations. They are SENSATIONS and that is all. The trigger also probably gives you emotions or states of mind eg: fear, depression, sadness, etc that it's "happening again" - however those emotions are actually either a) a series of thoughts and thoughts are not truth, they are just machinations of the mind or b) the actual physical chemical sensations of emotions. Emotions are simply energy - hormonal chemicals in motion that dissipate within minutes. Knowing this really helped me be able to feel safe feeling both the sensation of emotions and the sensations of symptoms because it is after all just normal and natural.

Don't focus on the fact that you have "never had social anxiety". This is not the kind of anxiety I'm talking about at all, and as you do the work you will slowly recognize little internal things you didn't even know you do. Judgments, the beliefs you are conscious of vs those you didn't realize are the true you, the outward manifestation of "you" vs. the deep inside you hide from the world and perhaps even yourself. The deep inside vs things like social constructs is what Dr. Sarno suggests creates a deep inner rage (and other difficult emotions) that we simply don't want to feel, or think about- it's the inner raging ID, that tantruming inner two year old who wants what they want and wants it now vs. the person we've been taught to be who is caring, concerned, worried about what people might think and would never be so selfish as do as that inner two year old suggests. We don't even want to think about it or feel it! We judge it. But when we can soften to these parts of us it takes the sting away. Triggers of all kinds begin to soften. It's not the total answer to TMS but it's certainly part of it.

You can absolutely face these sensations and teach your mind and brain that they are simply sensations. Begin to discover the reasons why your mind seems to need to keep you "Safe" and from what kinds of things it deems are "unsafe" is a great step in working with the psychological side. Focus less on the symptoms here and more on all parts of your life.
Begin to gently and kindly recognize what a reaction is (physically, emotionally and thought wise) to this cycle of sensations you get and then firmly and consciously make a choice to either react or respond to them gently. Do this with the mindset of experimentation - of viewing things from a bit of a distance instead of this hyperfocus.
Also begin to decide if you can step away, at times from worrying or thinking about your sensations and how they are so different, so strange etc. Just try to occasionally catch yourself having these thoughts about the symptoms and then make a firm decision to either continue that thought or to simply stop judging those sensations in any way.
Never pressure yourself to do this "right" or do it all the time - this is just something to maybe do a few times a day. You're just going to begin to get your mind open to possibilities of changing your thought patterns away from things you believe "MIGHT" be happening.

Then get that Sarno book and start the SEP! You have some great questions and some good insights already, and that is a great sign that you are ready for this work.

 

Thank you so much for taking the time to explain this so clearly. I really appreciate the honesty and depth in your message. I understand what you mean now about how focusing too much on the symptoms keeps me stuck in the cycle, and how the goal is to shift toward the psychological side instead.

It makes sense that my brain is trying to keep me “safe” and that these sensations are just physical expressions of that protection mechanism. I’m going to start working on responding differently ..thinking psychologically rather than automatically fearing every symptom.

I’ll be honest, it’s still very hard not to give them attention when they show up, especially since they mess with my balance and feel so real and intense. But I’m willing to start practicing this new mindset step by step, and to catch myself when I fall back into hyperfocus. I’ll also begin reading Sarno’s work and go through the SEP as you suggested.

Thank you again for your time, support, and guidance, it really helps to have this kind of direction and encouragement

 

Of course it's hard! This is not some automatic button ( are you old enough to remember Staples commercials on TV, that red button that they pushed and magic would happen?! you push and voila, no more thinking about symptoms. It's why we call it "the work" this takes time and effort. Even before you had the current symptoms, you were enmeshed in the habits that created the symptoms. Your brain is REALLY good at repeating those things over and over so it takes repetition and sometimes a LOT of repetition and often experimenting with what works best for your mind and brain to break those automatic habits. Please don't be hard on yourself or judge yourself when it's hard. One of the things that helped me is to imagine myself waving at myself falling back into habits like hyperfocus. Oh "HI" ... I'd do it with startling symptom sensations too. "Hi" is our welcoming, our way of noticing without a judgment, and without pushing things away. Just letting them be as they are for now.

You'll get the hang of it! Let us know what you think about what you read on the pages of whatever Sarno book you choose!

 

Thank you so much for this message ..I really appreciate the way you explain things with such clarity and kindness. It makes me feel more patient with myself, especially knowing that this is “the work” and not something that changes overnight. I really liked what you said about saying “Hi” to the sensations that simple idea makes it feel less like a battle and more like acceptance.

I also want to mention that I’m not a native English speaker, so I really do my best to fully grasp everything that’s shared here. Even the messages I write are often translated from French to English, but I’m doing my best to understand and apply all of this deeply.

I’ll start reading Dr. Sarno’s book soon and will share my thoughts once I go through it. Thank you again for your time and support it truly helps me stay motivated

 

Thank you for your answer.

My psychologist recently suggested SSRIs since I’ve been struggling for years. I still believe my symptoms are TMS-related, but I’m open-minded. I just don’t want to lose faith in the mind-body approach or start believing I’m chemically damaged.

Has anyone here combined meds with TMS recovery successfully?