Is TMS really that smart?

Sorry for my English, not my native language...

I am in a very low place in my life at the moment. It started with unsuccessful dental surgery and led to tons of stress and anxiety for 4 months, non-stop, every day. And then it started...

Out of nowhere, in the shower, I got burning in my throat, nose, mouth, lips and tongue. Something like this happened for the first time in my life, and I was so confused. Was sure that it was because of this dental issue, basically nerve damage (the neurologist pointed out I might have trigeminal neuralgia, and put me on meds). It led to more neurologists and more problems.

2 weeks later, my legs and arms started tingling and went numb. I went to the ER, and once I got out, my burning mouth stopped. Now my issue was legs and arms. I still do to some extent.

Overall I also had the following:

- muscle twitches all over my body
- random burning, pins and needles in my legs, arms
- random muscle pain in my arms
- numb body when trying to sleep, like I am drowning in my bed
- cold legs, feet

Now it gets worse. Several doctors told me I needed to get on antidepressants. I resisted till one day, I just wanted to be back to normal. I drank 1 pill of Lexapro (10mg) but had weird dreams and decided that I will stop. After a month, I was encouraged to try again. Took 25mg of Trazodone for sleep, and, the next morning, 5mg of Lexapro. And after a few hours ringing in my ears started. I know antidepressants are ototoxic. But it is hard to believe that it happened after 5mg, and tinnitus was the only side effect I was legit afraid about before I started. And just like that, I got it; also, I had a new wave of anxiety during those days. I also have pressure in my ears and had hyperacusis for a day.

Is this all TMS?

Because I got buzzing and tingling arms and legs after I went on a low-carb diet (I was sure it was electrolytes deficiency, yet blood work was fine), now, since I have tinnitus, my legs are not that big of an issue anymore, still have some twitches, buzzing but not that much anymore.

Also - I did QST for my legs, and it pointed out nerve damage (I could not feel warmth in my legs during testing), but I can feel warmth in everyday life - like getting into a bathtub, and adding something warm to my legs. I feel it all.

Ringing in the ears - got after a small dose of antidepressants that I stopped right away. Never in my life have I had hearing issues. Now I also have a burning mouth coming back (there are moments when all is good, then it randomly starts, then kind of goes away again, then comes again).

Is TMS really that smart, and it makes all these symptoms come up after specific events that would make me believe that it is actual damage? I just don't know what to believe anymore.

 

Welcome to the Forum @anna11 ! Your English is very good.

Yes, in my experience TMS is that smart, or more specifically, our unconscious mind uses our autonomic nervous system in this very smart way.
I've gotten tinnitus just by reading about it on the Forum. Fortunately, this time I didn't.

Making all these associations is an important part of the recovery process. The more you are consciously aware of what is likely going on, the less impact it has on you. You have made a good start on your recovery process.

 

@anna11
@Ellen is right! Our brains are smart and most of our thinking is subconscious: we are not aware of it.
I think of TMS like my brain waving a red flag. It will try anything to get your attention. I have had many symptoms over the years I did not know was TMS.

 

Thank you Ellen & Cactusflower. I am actually scared that tinnitus might be because of taking drugs. There are so many people reporting T as a permanent side effect after taking SSRIs.

 

When I think back to having my severe symptoms (pain & tingling etc), before discovering TMS, I was extremely perfectionist/ people pleaser.
Realistically, nothing less than thinking that I was physically damaged, would have seemed an acceptable enough reason to say no to people, slow down, or do things imperfectly.
With the profound realisation that TMS is so powerful (and smart), I was able to give myself the much needed permission to ease up.

 

TMS is the mind-body connection - nothing more, nothing less. It's your body physically responding to emotional pain and stress. For me, it was more helpful to view it this way as opposed to a condition that was able to outsmart me. I had to remind myself that fight-or-flight mode, AKA sympathetic nervous system overdrive, is something that I can control instead of an obscure third party.

TMS/the mind body connection is the same process that causes someone's eye to twitch when they're upset, another person's cheeks to turn red when they're embarrassed, etc. After long periods of intense emotional pain and stress, these reactions can become even more intense and include symptoms such as extreme nerve pain, chronic regional pain syndrome (CRPS), frozen shoulder, back pain, interstitial cystitis, etc.

TMS/mind-body symptoms can also include mental health conditions such as PTSD, depression, anxiety, OCD, etc. - this is because constant emotional pain and stress can cause physical changes to the brain, which is neuroplastic/capable of changing. Don't let that scare you - TMS/mind-body work can undo this process if continued emotional stress is what caused the mental health conditions.

If you're noticing an increase in symptoms after certain events or stimuli (Example: Beginning antidepressants), that means your body is responding to heavy emotions either associated with those events or just in general. There may be times when it feels like you are reacting to random events or stimuli because TMS/the mind-body connection can temporarily make the body more sensitive (Personal Example: I suddenly became unable to drink more than a few sips of champagne without serious nerve pain while I was in the middle of a nervous breakdown). There are other times when it may seem like TMS/the mind-body connection is specifically targeting your fears because you develop related symptoms (Personal Example: I was terrified of urinary tract infections after a nasty infected confirmed via a urine culture, and I continued to have symptoms for weeks even after a follow-up test showed that the antibiotics worked). Regardless of which scenario you are dealing with, it's just a process.

So there is nothing outsmarting you. TMS/the mind-body connection knows nothing and does nothing other than simply respond. It's part of our nature as humans. But it can be managed!

 

One other thought - because TMS/the mind-body connection is just a process, I can respond to another question. This may be helpful:

Can TMS/the mind-body connection cause all the symptoms mentioned in your post, plus countless other symptoms referenced on these forums? Definitely. It really can affect any part of the body! It may sound like a lot, but you'd be surprised. Again, the good news is that this can be undone.

 

Thank you all for sharing your thoughts and examples from your own experience. I pray it can be undone because it is hard to see a point to live anymore.

I am an extreme perfectionist, overachiever. I have goals and steps for everything, I had such big plans for this year, and with this sickness, I am put off track so far from my dream life that it makes me crush even more. I grieve my life and how everything could have turned out if this misfortune had not happened to me. I think about it every day. Instead of being free, I am stuck in a body I don't want to be in. I don't want to talk to or see my family and friends anymore, I don't know how to get strenght to continue to work.

 

Did your symptoms went away eventually?

 

I am so sorry you are in so much emotional pain. TMS/the mind-body connection is going to respond to that pain by perpetuating further physical and/or mental symptoms.

For what it’s worth, even if someone has a bit of nerve damage, TMS/the mind-body connection can certainly worsen symptoms. Because the brain is neuroplastic and capable of changing, and given that pain cannot be felt without the brain interpreting pain signals, it’s possible to also decrease pain related to some structural damage or conditions as well - my internist at Mayo Clinic taught me this in 2017. I have a connective tissue disease that causes joint pain, but it is only debilitating and constant when I am under emotional stress. You are not the only one on these forums with a bit of nerve damage confirmed via tests such as QSART, plus you also say your nerves can function just fine in your daily life.

Also, because QSART testing only observes your sweating patterns and sweating can be increased or decreased by TMS, it’s not always that meaningful. Sweating is controlled by the autonomic nervous system, which includes your sympathetic nervous system. Fight-or-flight mode, AKA sympathetic nervous system overdrive, generates TMS/mind-body symptoms.

I really think the fact that you feel warmth in your daily life but not during testing is a TMS smoking gun. That’s actually a good sign! We know your body is indeed responding to emotional pain and generating symptoms. You CAN overcome that.

How are you handling emotional pain and stress? What support resources are available to help you?

 

@anna11
I was where you are last year. I am not pain free, I still struggle to feel emotions, and with self talk but I am SO much better. You can do this! Slowly, gently.
You can meet your goals, but you must take to heart how much you are pushing yourself. It is ok to slow down, it is ok to change goals, it’s ok to change timelines - There is a fine balance between trying to control things and attaining goals, and enjoying life and enjoying the journey to achieve your goals.
It is hard to hear now, but you will understand.
At least know you are not alone. I love @Dorado question about support. If you need it, it is there for you. The structured Educational Program was created by people who care deeply to help you. It’s a great place to start after reading a book by Dr. Sarno. I took it slow, breaking down each day into two or three parts to help me begin to break the habit of feeling I must do things right and perfect. https://www.tmswiki.org/ppd/Structured_Educational_Program (Structured Educational Program)

 

Yes they went away eventually.
Sometimes I still get blindsided by difficult situations and complex emotions. The symptoms begin to return, but then go away as I work through what’s so upsetting.

 

@Cactusflower mentions above about the significance of our subconscious and how active it is. I think TMS can seem "really that smart" because it's working from inside our individual minds. Therefore, all of our inner fears/stressors/coping tendencies/trauma/pain/joy/hopes, etc... -- it's all in there.
I was sick recently and having a hard time sleeping. BUT, when I did fall asleep, right away I had these ridiculously vivid dreams that were so personal to me & my past experiences. I was shocked that dreams could be produced so quickly and be so detailed and thorough. It reminded me of how fast symptoms can appear.
For me, it can go from nothing to full-fledged issues, and that can and is TMS / mind-body syndrome.

One thought for me is that the power of my individual mind is also ready and available as I use the tools available and find solutions to my TMS / mindbody issues. If the symptoms can come on quickly, so can the solution.

Just an observation: How you describe yourself is very very close to how Dr. Sarno describes some of the personal traits of folks struggling with TMS in his early books.
That was helpful for me when I was able to see myself/my tendencies in Sarno's writings.

I wish you well!! I can relate, and I have high hopes for my situation and for yours. There is such a great community and amount of resources here...Tap into that.

 

I have said it many times on this forum, and I will repeat it again: the weirder your symptoms are, the more likely it is TMS. The variety and spread of the symptoms only points at the desperation of the nervous system which is trying to send you signals. Focus on your nervous system and TMS - and you will succeed!

 

@Dorado @Cactusflower

Thank you for your concern when it comes to support.

Honestly, I am not doing that good. I don't want to communicate with people about my situation because I am so angry. Everyone, doctors and even my friends and colleagues told me I should get on antidepressants, that it would help me get through this period of my life. And now, once they see how much worse it got after I took only a few pills, they have nothing to say apart from how sorry they feel for me.

I went to a psychologist once, and even she told me that my case is so fucked up* and that she is working with long-term trauma, suggested digging into the past, and so on. I kindly refused therapy because the past has nothing to do with this situation where I am.

*My story - after dental surgery, I got visible soft tissue damage in my face, and no one knows how. I was looking for answers for four months, went to all the possible doctors (dental surgeons, plastic surgeons, neurologists, ENT, dermal and laser estheticians), did all sorts of tests, MRI, CT, no one could see anything bad while there is literal dent (don’t know how else to explain it) in my face. On top of that, they did a bone graft, although I did not need one, and now my skull is wider which makes my face asymmetric. My gums are cut and sewn back way lower than on the other side.

At first, I was sad, of course, but it healed nicely, and I didn’t think about it; what’s done is done. To me, the main thing was that my face felt normal, and I didn’t have pain. Then, some estheticians told me that my cheek did look swollen and asymmetric. And now that is the only thing I can think of - AND, I can feel and see it too. Every morning I wake up, and my cheek is swollen, but it was normal before; I had 0 issues. And I have no idea if my mind is making this an issue now or if it magically started to get swollen because few people pointed it out.

I feel like crying whenever I look in the mirror, and this is the exact trigger that makes all the physical symptoms come up. And I can’t solve this trigger; nothing can be done anymore, and I just keep spiraling into grief, and TMS worsens. Because the only thing I can think of is how I will never have my face back. It’s impossible not to think about it because I see my face in the mirror daily.

 

Considering my story - how can I do this? My nervous system is fried up… And I genuinely don’t know how to help myself; I started journaling, but it does not seem that it will be the answer in my case.

During this time, tinnitus has been accompanied by pressure headaches and painful pressure in the ears. I also have a congested nose out of nowhere; while I am somewhat ok during the days, it is hard to breathe at night… Have a dry mouth as well. Feels like my whole head is under pressure, which sucks a lot.

My mom told me that I need to visit an energy healer at this point :/ (it's hard for her to see me this way).

 

@Bonnard Thank you very much for your kind words; I also wish you well!!

 

The fact that you healed nicely, felt normal, and didn't have pain until feedback from estheticians definitely sounds like another TMS smoking gun to me. This is what we call a nocebo: A medical professional says something is abnormal and we develop symptoms upon receiving the feedback.

You've had MRIs, CT scans, etc. - all of which point to nothing nefarious. Also, you say your QSART test indicated damage in your legs, but you typically feel warmth - just not when you were having that test performed (which can be due to nervousness). A dental procedure shouldn't affect your legs. These symptoms affecting your entire body are indicative of TMS.

In addition, your story of going to the ER and the burning mouth disappearing after leaving is clear TMS.

Regardless of whether you have a dent or if there is some damage somewhere, you know that your disabling symptoms such as nerve pain, inability to feel temperature, burning mouth syndrome, etc. can stop or at the very least lessen dramatically. Remember, I have a real connective tissue disease that causes real symptoms, but it only becomes disabling and extremely troublesome when my emotional stress and pain go unchecked. Funny enough, my disease also causes dysautonomia AKA an overactive sympathetic nervous system, so my nervous system can also feel "fried up." But dysautonomia doesn't stop me until my emotions become unbalanced. It's also true that TMS can cause reversible conditions such as CRPS where swelling and other symptoms are extremely visible. Many posters on this forum have healed from CRPS, which frequently appears after real injuries (example = someone really did break their leg after a car accident, but it should have healed after a certain number of weeks)... yet CRPS itself still nothing more than TMS.

I do not see anything here that says you cannot thrive and have a fulfilling life where pain does not disable you. You CAN do this. There IS a way. You are understandably dealing with fear and confusion right now, as well as grieving changes to your face (lots of people who have experienced facial or other bodily changes after surgeries, accidents, etc. have discussed how much of a shock this can be). While these feelings are normal, there is hope - you just need support and to work toward believing it. This forum can help with all of that.

Sending you lots of love. You are not alone.

 

'Darkness before the dawn' is one phrase that has always helped me when things got the most difficult, and when I felt I couldn't handle what was happening.
It kind of relates to Dorado's comment about symptoms building off emotional pain. It seems especially cruel that the mind-body connection responds to pain by continuing (and even adding) more difficult symptoms.
But, the reverse has been true for me. Symptoms (crazy, strong, and hope to cope with) have just evaporated. Once my unconcisious mind doesn't need to distract, symptoms fade off.

Moving the focus away from the physical symptoms and into the psychological and the solution was critical for me. Also, the times where the emotion was the most raw were times where I had the most growth. Because I was at my wit's end, was really craving solutions-based steps. I saw above where you mentioned that your nervous system is fried...That level of difficulty can be channeled into the solution.

I am sorry you've got so much to cope with right now!! Sending you healing vibes and prayers/thoughts. You can do this..you really can. You will.
Hang in there...

 

What more can I say then it is 100% ok to be angry, and to feel this anger, sadness etc in your body.
Although the esthetician did trigger you, and you went down a fear & emotional spiral, in the end the trigger is yours and you CAN change your reaction to this type of trigger. It just takes work.
And you can do this.
I would encourage you to watch @TG957 and @miffybunny as they tell their stories of CRPS - not that their symptoms mirror yours, but that they had very complex and difficult tms symptoms and have overcome them. Their stories have inspired my hope.




Do not let psychologists who do not have the skill or desire to help you dissuade you. The very first psych. I saw was mean and cruel, he had absolutely no clue as to treat someone with TMS.
If you are interested both ISF (Inner Family Systems) and EMDR psychologists deal with mind/body and trauma. I have two friends with major childhood trauma doing EMDR and one completely healed from tms through it.
These decisions do not have to be made now.
Start slow and small. My journey started with a commitment to myself. I started the SEP free program here. It was VERY hard for me. I totally lost my mind in panic and stress. Symptoms were wild! But I was ok!! You may choose to do Pain Preprocessing - it may be a better fit for you.
I even went back and did it again, slower and with more heart, a few months later. Still huge anxiety and fear… and slowly the panic began to leave a bit.
I still have symptoms but less mental suffering. I still have a lot of fear, but am slowly learning and absorbing what I need, the skills, the mindset and attitude.
But it all started with the decision to simply begin.