The power of suggestion (Nocebo)

I have had quite the experience in the last 24 hours which has sent me through a loop, the biggest I've had in a while.

Overall, I have had the best month by far in sooooo long. Despite some freak outs (yeah yeah I know my popping and cracking thread), I have been pressing on. My symptoms have been the best they have been and have improved week after week. Last Friday I ran a 10k for the first time in 18 months. I cancelled my Botox appointment I was supposed to have today which feels terrifying but I am trying to think psychological and minimize physical interventions.

I have been told I talk too much about my symptoms (classic TMSer) so I am going to keep it to a minimum, but think it's necessary to explain some of the story, so be warned.

Yesterday I was in my Dystonia education class/support group I've been doing since last December. (Yeah yeah why am I still in it? Definitely have thought about quitting and now definitely definitely thinking that, let's not going into it for now). I mentioned that I had made very good progress by walking outside barefoot on the sidewalk which had been scary for me for a long time (I didn't walk barefoot at all even around the house or the yard for years). Despite being physical exercise, it was actually something I started doing for my TMS, it helped me convince me my feet were strong and I was not going to hurt myself on a pebble or if I felt my toes or feet feel a certain way. It's been going so great! But after I shared this, someone in the class who has Runner's Dystonia and currently has a stress fracture (SF) told me that walking on hard surfaces causes SFs.

After a few seconds of like registering that Girlfriend had actually said that to me, I felt the rage and fear and panic all at the same time and you bet, my feet especially my "bad" one were immediately on fire and my left leg started spasming.

What evidence of TMS huh?

I couldn't even participate in the rest of the class. I wanted to unmute myself and scream at her WHY THE F DID YOU JUST SAY THAT, but of course she has no idea that the fear of a SF is my number one trigger. I wanted to click that Leave Meeting button but then I would go downstairs to my family as a nervous wreck and panic. So I just stayed. I emailed the instructor who is a neuro PT for his input and he assured me what walking on hard surfaces was totally fine and not more inherently like to cause injury versus any other activity.

Despite this assurance (usually my obsessions can be quelled by my compulsion of seeking medical assurance) woke up in the AM and my first thought was how angry I was at this person. How refreshing though to have a few moments I didn't just go into the full body scan. But you know that came and so did the pain. I could put aside okay I didn't get a SF by walking on hard surfaces, but now I am too terrified to do it again and just the whole fear of a SF with all the increased activity I have been doing came to the forefront again.

It was a run day for me and I was excited to do it and I was still gonna do it, but I got in my head during it and my symptoms were worse.

It all made sense, her "Power of Suggestion" and the fact I was going for a run instead of shooting up my leg with a paralyzing agent which I was supposed to get today and doubted if I made the right choice. Afterward the run I felt worse. Typical "you overdid it!" This work is hard man. I am trying to be consistent and minimize my freak outs and work on the doubt. I know there are a billion reasons why I should be feeling the way I am feeling today and it is more likely that this psychological stress of what she brought up would make symptoms worse versus me having hurt myself. I know, especially given my track record, it is way more likely that my brain creates the symptoms than actually have an injury. I've already been through this episode so many times, you think I'd be bored. And anyway, hell no I can't go back to an MD with this pain because guess what? I've already had a really similar one and already MRI'ed that area back in January... so again I'd be the boy who cried wolf.

Other people's comments really really bother me. It's been a lot of journal fodder. I fear feeling "stupid" or "ashamed" because I was too "greedy" for wanting to be able to run again and run frequently and decent distances. I have a fear that other people who warn me "it's not gonna last" or "enjoy your run, you don't know what tomorrow will bring" or "you are going to hurt yourself" or "your walking is like your running right now, you need to take a rest day" - all things that have been said to me -- will be right and I will be the silly stupid girl who was wrong to try and do what she wanted to do, and I should have listened. (I will add none of these have been from MDs, just other people). Then FULL SHAME and embarrassment will ensue. Other things that come up is I will let everyone down if I yet again am laid up on the couch and can't take care of myself or my family or my pets. My running has always been a source of guilt because I've felt selfish for taking the time for myself.

Any advice on how to deal with comments from others, especially ones who "suggest" things to you that trigger symptoms?

Anyhoo, for you dear readers, if you've made it this far... as I often do on days like this (in addition to reading and journaling), I will try and look for past threads on this forum dealing with my issue du jour.

2 good ones that are worth revisiting if you have experienced the Nocebo or Power of Suggestion by others.

https://www.tmswiki.org/forum/threads/the-power-of-nocebo.12958/ (The power of nocebo)

https://www.tmswiki.org/forum/threads/using-dr-sarno-and-dr-schubiners-techniques.14211/ (Using Dr. Sarno and Dr. Schubiner's techniques)

I always love examples and experiences by others if anyone would like to share.

 

Every time your symptoms are triggered is the chance to do the work to soften the trigger by feeling your emotions.
Basically you are a giant bucket of stress and your bucket is full. Every chance you get to stick a hole in the bottom of that bucket and drain off a little of it is doing the good work.

Your mind on TMS wants you to live in a bubble of glass. Safe from any stress, surrounded only by happy thoughts. That’s not reality. It fools you into thinking you are so fragile you can’t handle a sideways glance or wrong word from someone. Sure it’s hard, but what is truly bugging you?
Fear.
What really frightens you is that feeling of free these two words (two letters) sf bring to you. You thought fear, you began to feel the fear and your first instincts are to run and then to hide. Don’t feel the fear by staying here (feeling anger was cool with you, good work), and hide from your family so they don’t sense the fear.
What would have happened if you’d turned off your meeting and sat with yourself, and just let it all flow through you? Feel the fear, cold sweat, the distastefulness and discomfort of it all for 2-3 minutes. Just sit and let it pass. Let the fear thoughts float on by but don’t follow them. No stories or meaning attached to them…
Then go wash your face and get a drink of water or whatever to give yourself a moment before being with the family. Even taking a second to do a visualization - think of a joyful time with the family - a birth, a child’s first step etc. something to help you step away from the stress for a second.

Helmut talks about doing visualizations to get a “dopamine hit” and that this really helped him with the anxiety. It’s worth a try to experiment. He says it took a few months for his brain to catch on, but then he felt much better.
Some triggers might never go away, but what softens is your ability to feel the fear and be ok with it. Sure it will affect the nervous system and your emotions but then it will level out again fairly quickly.
Perhaps you might think about what is truly supportive and empowering to you. Is the Dystonia group really being supportive, or would joining a TMS support group be a better fit for you right now? What do you really need?

 

All I can say is I would have ZERO hope if I were in a Dystonia group. It would be in direct conflict with everything I’m trying to do with healing from TMS. It’s like trying not to be scared but deliberately going to a haunted house every day.

 

I had to leave chronic pain and fibromyalgia and herniated disc groups, actually about to "hide" a friend on FB who is a specialist in herniated discs. I like him and don't want to unfriend him but he posted things the other day about disc directional preferences when they bulge or herniate and how they press on nerves and we should only do certain activities with symptoms and I'm like NO NO NO, this is the type of thinking I'm trying to get away from. I already spooked myself reading Dr. Weil's Spontaneous Healing where he talks about yeah, herniated discs don't cause pain but they can cause muscle weakness and nerve dysfunction, and then someone in our shared TMS group said yeah, that's what happened to me, nerve damage. Oof. NOT what I wanted to hear!

I'm close to leaving my "conventional" running group as well. I'm in a couple of ones where we really shoot the shit more than anything, but every time I see some long term pain post in the "normal" group it just spooks me.

 

Oh good grief I have heard all of that stuff and more. Think of all the PT prescriptions for pain such as "weak core" or "weak hips" or "mobility limited" or "your posture is bad" or "sit too much" etc. Most of these people mean well but they latch onto these beliefs when there is no efficacy proof anywhere to support them, and poor people like dystonic above are so desperate for a lifeline they grab on and hold on tight.

Man, I recall in my darkest days back in 2018 trying to wrap my head around all the stuff I was supposed to be doing - all the strength stuff, all the stretching. I actually had to make a spreadsheet to keep up with it all.

 

Of course that was what I knew would stick out with this post Hence "(Yeah yeah why am I still in it? Definitely have thought about quitting and now definitely definitely thinking that, let's not going into it for now)."

I just want to clarify for better or worse, this is done through a Neurological Physical Therapy practice -- hence me joining last year way before I knew about TMS, and it's not the Facebook Group which I stopped participating in long ago. It is a "Dystonia Education Class" and they do at least talk a lot about the autonomic nervous system and psychological factors instead of all physical treatments. It is not actually a Support Group, and people with several types of dystonia are in it.

Again I am sure your answer is the same, but did want to clarify I'm not a complete idiot.

 

Thank you Cactus this is a really good suggestion. An option I definitely didn't think of, it did not need to be stay in the group and put on a happy face and it didn't need to rushing downstairs in a panic in front of my family.

 

lol I was doing 30 minutes of pelvic stretches twice a day to manage scrotal pain. It’s absolute insanity the information overload that is out there, plus all the fear mongering and the grifters preying on our fear to sell their strength straining routines or stretching or whatever. And now content creators use AI/bot farms to have all comments on their videos be success stories and how well these routines worked for them.

society has many issues, and what has become of the modern internet is in my opinion very near the top.

 

So what's very interesting is that this is a weekly group. So I went the last time at the start of June. I had done a few classes already knowing about TMS, but they were kind of more fluffy not having to do with any physical treatments, but already then I was like I'm not so sure about this. But then I took 3 weeks off from the group when I was on vacation. And during that time I had a huge change in my mindset and did a lot more TMS work. So now coming back to it I'm like oh wow, like this really isn't where I should be. This was like a huge wake up call for me.

 

Yay! I’m glad to hear it! And I also can’t wait til you never say the D word again! Lol (because you don’t have the D word. That’s not your diagnosis.)

 

Quit the running groups. They are all filled with TMSers with a capital T because they are runners and some of those people also drinking the Kool Aid about Chiropractors or Lifetime PT. Or someone will get injured even if a legit injury and it will be an injury you think you have and you will go off the rails.

I have that same thing though like "I don't want to defriend this person because they are nice and they didn't do anything wrong" but I really got to cull my Facebook running friends who I am not real friends with at all. Very people pleaser of me and you.

 

Sounds familiar and yep, insane. The sad thing is the victims are delighted to do this stuff because they feel like they're taking action. I guess the good thing is that it's just a waste of time (and in some cases $$) and no harm done from drugs, surgery, etc.

 

I’ve spent thousands, hemorrhaging my meager savings, whilst being unemployed and living with my parents. Depresses the absolute shit out of me, but oh well, learning lesson I suppose. Still would’ve been nice to buy a Vespa or EBike to get me to work or a few months rent on an apartment. LOL, if I don’t laugh I’ll cry!

 

YUP!! I loved research - it was one of my passions in my education and in so many aspects of my life -
I like(d) to figure things out by reading about everything, BUTTTT honestly, the amount of information now available and contradictory stuff and who knows what the source is.... And, ahhh, I could go on for hours about this because there's just so much that has become clear to me! ha ha --- More and more and more information -- it all led me down a road of problems that really were no comparison to the original symptom that started this all out.

 

Yup, when I learned about the replication crisis I was in shock. It really is quite alarming. Humanity is in such an early state in its development with regards to technology, I don’t think we are anywhere near ‘mature’ enough to have access to some of the information we do.