Where were you a year ago?

[BloodMoon]

@Mani What about the CBT? Did you already try that too in conjunction with graded exposure therapy?

 

[Rabscuttle]

I definitely agree with that. A book cure also ties in with the way modern medicine works (when it does work for certain things)... take a course of tablets and the symptoms go... I think we're conditioned to that expectation. The other thing that someone else was saying (can't remember who, it might have been Ellen) is that they have noticed from postings on the forums over the years that book cures are inclined not to be book cures for the long term. It turns out that they really needed to change some things.

Oh, my goodness, it brought a tear to my eye reading that! You've really got this, Rabs!

Thanks Bloodmoon, your support and wisdom means a lot to me.

and lol, just now as I was reading this thread I had a huge jaw spasm that a year ago would’ve sent me crying in the bathtub out of fear for what it meant. Immediately I just picked up my book and read aloud. The fear is fading.

 

[Diana-M]

It was complete and utter dysfunction in terms of how I was living and treating myself. I needed this. It’s quite a thing to be in pain and still be the happiest and most hopeful you’ve ever been. What will my life look like when it’s gone for good?

Me too! So well captured!!! Utter dysfunction calling for a complete reboot. And I love the positive sentiment. It’s true! I’m happier now than I’ve maybe ever been.

 

[Mani]

@Mani What about the CBT? Did you already try that too in conjunction with graded exposure therapy?

How did you know ive done cbt?

In the hyperacusis community there was this guy ronniespector. He had 24/7 burning ear pain and like all the symptoms you can imagine. I cant look it up but the guy was really truly suffering for sure. He was the reason i started reading schubiners book. Wait ive blocked the sub but i really wanna share his work https://www.reddit.com/u/RonnieSpector3/s/T5CklBsgRx

His posts and comments - if youre curious please check his comments too - share the story. I cant read it anymore as i have completely blocked the hyperacusis sub but ive read his work a ton and i think you should check it out. He was the guy that inspired hope from day 1. As far as im concerned he wasnt really part of the tms community but he did share schubiner videos and resources


He’d sit 10m away from a shower for 10 sec (with plugs and headphone) and then the next day 20 and then hed move a meter and so forth and so forth and i personally had an incredible lack of success with that method. Id feel terrible on day 3 because of other exposure and then lose all the ground i gained. Cbt in general made me feel like i was telling my brain there was something that needed to be fixed. You’ll probably say that im doing it wrong and i understand that you might be passionate about it. I can explain what i mean if you care but you didnt really ask for everything im saying rn lol

I have found that my brain will gradually make sound softer when it deems it as safe. I have obviously done baby stepping to get better but like music exposure and shower it just didnt work like that.

What i have done is for example in the beginning, id just sit in the living room with my folks until i started getting really uncomfortable or loud tinnitus spikes and then id either put plugs in or leave the situation.

A rigid schedule just wasnt really it for me. I dont know why but ive never been able to make sounds less loud by that form of exposure. I have worked better on vibes so far.

I dont wanna act like the ultimate truth because im still finding out what works for me.

 

[Mani]

I agree what yall are saying in the sense that we were probably all dysfunctional long before tms started. I think i do wish i wouldve gotten this as a 60 year old or suttin like that.

Like man and i know how to calm myself down better but the clock is fucking ticking. I’ve always felt like i have a love surplus to share with the world and i would really like to get going with trying to find the one. yeah yeah ‘dont put pressure on yourself’ I kknow i know. Its just a strong desire. I dream about my sister having kids and me being the nice uncle and loving them so sweet.

I actually turned 20 today which means im no longer a teen and am actually approaching unc status. The real gems will be taken by 25 so i best get to work.

I’m typing this with a grin on my face but im dead serious lol

 

[Rabscuttle]

I agree what yall are saying in the sense that we were probably all dysfunctional long before tms started. I think i do wish i wouldve gotten this as a 60 year old or suttin like that.

Like man and i know how to calm myself down better but the clock is fucking ticking. I’ve always felt like i have a love surplus to share with the world and i would really like to get going with trying to find the one. yeah yeah ‘dont put pressure on yourself’ I kknow i know. Its just a strong desire. I dream about my sister having kids and me being the nice uncle and loving them so sweet.

I actually turned 20 today which means im no longer a teen and am actually approaching unc status. The real gems will be taken by 25 so i best get to work.

I’m typing this with a grin on my face but im dead serious lol

Happy birthday Mani! And you’re so young. Pressure is a killer! Think about how much you’re going to be able to offer your future partner from going through this. I know it seems grim right now, but you’ll be a better more rounded individual when you come through the other side.

plenty of gems at any age, any gender, anywhere in the world at any time!

 

[BloodMoon]

@Mani Happy Birthday!

Well, it might seem like it, but I'm not actually an 'evangelist' regarding taking baby steps, I just know it worked and is continuing to work for me with my brain, so when people are struggling imo it makes sense to try it. But if it hasn't worked for you, it hasn't worked for you.

The following seems very important to me...

I have found that my brain will gradually make sound softer when it deems it as safe.

What have you noticed makes your brain feel safe enough for it to do this? What circumstances, what actions etc? If you don't know atm, I'd suggest taking some gentle observations. Because whatever kind of thing is making it feel safe, you need to do more of it.

In the hyperacusis community there was this guy ronniespector.

Ronnie Spector and the 'wall of sound'; I like the guy's sense of humour!

 

[Diana-M]

Happy Birthday, Mani!!!

 

[Mani]

This seems very important to me. What have you noticed makes your brain feel safe enough for it to do this? What circumstances, what actions etc? Because whatever is making it feel safe, you need to do more of it.

Just getting on with my life. Just absolutely paying zero attention to sounds. Obviously im not perfect but living at home with other people while having earplugs in obv. Id just do my own thing and let other people make the noise to which i dont respond.

When i make the noise myself or like plane exposure or whatever it somehow becomes the entire activity, even when im trying to distract myself with some other task.

Actually what constantly seems to happen:

I try some weird exposure thing. It doesnt lower tolerance but does leave me overstimulated. I get frustrated that it didnt work for the millionth time. I decide to stop doing that and to just get on with life. I notice that some sounds bother me less and then the cycle begins anew.

Most important is self compassion, safety, feeling emotions and just kind of getting back into it. You know how easy it is to have a sound in the background and grow fixated on it, like a lot of people do with tinnitus. Its a little dan buglio esque i just try to make friends with sounds. Its just vibes based, i cant explain it.

Before it got worse id be dancing in the shower to try to convey this safety but it just — maybe it did work slightly but it was just not the way i had to communicate with meself

When my progress really halts ill try something else again but for now im quite satisfied with progress.

 

[Mani]

Thank you all for the best wishes!!<3

 

[BloodMoon]

When my progress really halts ill try something else again but for now im quite satisfied with progress.

Not 'when' but 'if'/'should' (sometime, never!) my progress halt... Words matter to the brain! They really do influence it. Great that you're satisfied with your progress.

 

[Mani]

Not 'when' but 'if'/'should' (sometime, never!) my progress halt... Words matter to the brain! They really do influence it. Great that you're satisfied with your progress.

Absolutely right!

 

[BloodMoon]

I think everything you said about baby steps made sense and it inspired me because you could prove it worked out in your own life. I think it was a good year or more before I was able to climb out of my severe depression. I just literally couldn’t make myself do anything. It all felt pointless.

You know, that’s something I sometimes forget — the depression part. I was really low when I was bedridden, but then my anger at the situation took over and, as you know, I started peeling carrots and never looked back. When I reply to people now, I sometimes forget to acknowledge that stage — unless they mention it. Anyway, what an achievement, pulling yourself out of that.

I think you’re onto something with the rock bottom. There does come a point where you stop wallowing in denial and self-pity and just say to yourself, “If I don’t try harder, I’m going to die like this.” That happened to me.

Bingo! That turning point — when you know it’s change or stay stuck — explains a lot. It’s why some people “get a wiggle on” quickly while others take longer. My rock bottom was being bedridden, but others’ might look very different. Everyone’s threshold is unique, but it's reaching your particular rock bottom that is the tipping point for a change in attitude.

Adding more faith in God coincided with this. And it gave me an added source of strength to lean on.

I love that. I’m more than beginning to think we all need a mental “home” to return to. Yours is faith; mine’s become art. I can’t create the way I used to, but I love just appreciating it. My husband and I saw that the little old (15th century) church near a house we’re hoping to buy holds a quiet two‑hour contemplation session, open to everyone. We’ve decided we’ll go if we move — it feels like a lovely thing to do for the peace of it all, even though we don't anticipate a conversion!

I’m STILL resistant to the pain that even baby steps cause… Each day is a building block... I believe this IS the answer.

This makes my heart sing. Your “building blocks” image nails it. I’ve started “pebble or marble counting”: I keep a glass jar and drop in a pebble every time I achieve something, however small. Raelan Agle talks about it in one of her videos — it keeps progress visible and tangible (her progress was to do with CFS/ME but can be applied to people in pain of course). I use more than the 10 marbles/pebbles she suggests; one can just adjust how you do it to whatever suits. I think we may have touched on this before, but I'm employing it a lot these days.

Time stamp: 5:04

But at the same time, my nervous system is calming down from meditation and self-soothing... This has also contributed to me being able to do my daily baby steps.

That’s such a great sign. From your past experience of it too, meditation clearly works for you, but your brain fought it at first because keeping you restricted and therefore 'safe' was its priority.

I’m sure this hasn’t answered your question! ... People have to get to the point that they’re willing to try and, more importantly, STICK with it!

Oh, it’s definitely answered it. You, Rabs, and Adam helped me realise people only really commit once they’ve hit their particular and unique rock bottom. Before that, advice tends to bounce off. All we can do is plant seeds — the rest happens when people establish for themselves that most other roads lead to a cul‑de‑sac (I say 'most' because, of course, some people find that, say, just meditation or practicing tai chi, or whatever, does the whole trick for them).

I’ve been thinking about this question still!... We all look for the easier way out.

Exactly. Sarno emphasised journaling, but self‑soothing didn’t get the same spotlight. The tougher cases often had to learn daily living despite pain, and that side of things rarely got mentioned. That’s why “baby steps” are a hard sell — they require grit and patience above all.

And it’s confusing… After some time goes by, you realize there are no shortcuts though...

Yes — that sums it up. It’s slow, messy, and frustrating, but it’s the way through.

I’ve noticed something else too. For me, “stepping away” from the forum wasn’t physical — it was mental. I stopped needing to ask questions and just replied to people instead, and that shift really cemented the mind‑body ideas in me.

I can see that same shift in you now. When you reply to people you’re writing like someone who’s internalised the work. It doesn’t mean we’ll never ask again, but we’re no longer, as you say, chasing a magic bullet. We’re just living the process. And that’s a huge step forward on this 'journey'.

 

[Diana-M]

what an achievement, pulling yourself out of that.

I notice a lot of people entering the forum are lost, depressed and think life is now totally hopeless. It really is a fight to come back and a lot of things contribute to it. For me, reading the book, Feeling Good, by David Burns and doing the exercises he mentioned faithfully, helped me a lot. It was a good start. Also the forum kept me alive. The friendship and the hope.

as you know, I started peeling carrots and never looked back

Yes! You peeled carrots in bed! That left a huge impression on me. The last few months I’ve begun to make salads for me and my husband every night while sitting at the table. It’s taking back your life, even if you have to sit or lie down. It’s saying to yourself, “I’m still alive. I still have work to do. I still am useful.” And that sends a powerful message to yourself that you’re now on the road to get out of this. People who are down with TMS think they can’t get on with their lives. But you can. Just do what you can. Make a start. You also have to get over the fact that things aren’t ideal or how you used to live. You just have to look at what you can do now, not at what you’ve lost.

I love that. I’m more than beginning to think we all need a mental “home” to return to. Yours is faith; mine’s become art. I can’t create the way I used to, but I love just appreciating it.

Yes! I agree. Art is transcendent. A nice home to have.

My husband and I saw that the little old (15th century) church near a house we’re hoping to buy holds a quiet two‑hour contemplation session, open to everyone. We’ve decided we’ll go if we move — it feels like a lovely thing to do for the peace of it all,

How exciting! I hope you get the house. And also nice to have such an old church nearby. A quiet contemplation session sounds wonderful. I bet you’ll enjoy it, and the old church as a place to ponder all things peaceful and beautiful.

The tougher cases often had to learn daily living despite pain, and that side of things rarely got mentioned.

Yes! And it’s what holds a lot of people back who need it more than anything. The longer you sit, the weaker you get, and pain increases due to stiffness. I got much worse and then my feeble random attempts at movement felt like failures. You really have to put yourself in the mindset of a professional athlete; they accept daily physical pain. Even welcome it. You have to become your own coach. And your “workouts” are baby steps. Not glorious by any means. But yes; they are absolutely a means to an end. And they significantly add up over time.

When you reply to people you’re writing like someone who’s internalised the work. It doesn’t mean we’ll never ask again, but we’re no longer, as you say, chasing a magic bullet. We’re just living the process.

Thanks, @BloodMoon! Yep. Just living the process. And it’s hard, I’ll admit. You’re much farther along. And I’m honestly so glad you’ve stuck around on the forum, because without example like yours, people with tough complex TMS like mine wouldn’t have much hope. For some, they get out quicker than others. But some of us are slower. I don’t really care how long it takes me, at this point. I just care if I do my building blocks today. (Love your visual marble idea for counting up baby steps!)

 

[BloodMoon]

I hope you get the house.

Thanks. I think I'll just move into the church if we don't! lol

The last few months I’ve begun to make salads for me and my husband every night while sitting at the table. It’s taking back your life, even if you have to sit or lie down. It’s saying to yourself, “I’m still alive. I still have work to do. I still am useful.” And that sends a powerful message to yourself that you’re now on the road to get out of this. People who are down with TMS think they can’t get on with their lives. But you can. Just do what you can. Make a start. You also have to get over the fact that things aren’t ideal or how you used to live. You just have to look at what you can do now, not at what you’ve lost.

Amen to all of that!

You really have to put yourself in the mindset of a professional athlete; they accept daily physical pain. Even welcome it

Yes — and those Shaolin monks who can endure enormous pain inspired me too. They demonstrate that you can show your brain that you know that what you're doing is safe. (Not that I'm advocating that we teach our brain in such an extreme way, of course!)

(Love your visual marble idea for counting up baby steps!)

I play with it all the time! Sometimes I collect them in the jar for a whole week, and seeing them pile up really lifts the spirits — a cheerful reminder of all those little wins adding up over time.

 

[Rabscuttle]

I had my best day ever yesterday! I worked for 9 hours then immediately after met up with a friend and spoke for 2 hours straight. I had such long stretches with no symptoms while speaking, and even when I got periods of significant facial tension it’s still easier to get words out. It’s interesting, but I’m clearly bracing less when getting ready to speech, much less of the horror on the horizon. That catastrophic thing that I fear never comes to pass. I even bought a longboard to ride around town with lol, something I haven’t done since 6th grade. Something called me to it, I have some fear with issues related to my legs and I thought it a good way to address that. I want to eventually commute with it so it’s a fun goal to work on this summer!

I wanted to share something that has been helping me. I’ve been really trying to implement positive self talk these past few months. But when I get symptoms it’s sometimes a struggle, what do I say to myself, how should I treat myself in this moment? Indifference isn’t enough for me, and saying we got this brain or I love myself feels vague. And honestly the whole rage thing, Which I tried to implement does less than nothing for me, I’ve been rage filled for my whole life and very aware of it for years now, just made me bitter, jaded and resentful. I started speaking to specific body parts, and while this may be focusing on the physical in a sense it seems to help my thoughts related to the symptoms run their course. For example if my jaw is acting up I’ve been saying “I love you jaw, thank you for allowing me to eat and speak, I believe in us” and then I move on. For thoughts where I’m getting down on myself or ruminating on the past I'll say “I love you brain, thank you for housing my spirit and letting me experience this world/ physical reality”. I pair this with feeling the related emotion first or doing my best to (it’s still a struggle sometimes of what that means to me). I’ll thank my body when it lets me engage in exercise inspite of symptoms. I kinda just treat it like a flowchart (I address the part of the body that’s having an issue and then thank it for something it does allow me to do). It breaks me out of the “oh fuck this shit” mindset. I’ve struggled with body image issues my whole life, and chronic pain has made me feel really trapped, and I’ve really REALLY *fucking* hated my body when this all began. I feel like all of me needs more love y’ know. We’re all made up of living cells and they’re doing their best. I’m sure the brain/ TMS generated tension and pain isn’t so fun for them either, lol. For this stuff to have an effect and feel real I did need the foundation that spiritual meditation has given me, that I deserve more and better than my current lot.

 

[BloodMoon]

Fantastic, @Rabscuttle!

What you've done is reverse-engineered the homunculus without the diagram. Perhaps you already know about this, but just in case you haven't come across it (I was only reading about this just the other day)...

The somatosensory homunculus is a representation of the human body in the brain’s somatosensory cortex. The term homunculus comes from the Latin word for “little man” and refers to a map of the human body that is laid across a portion of the cerebral cortex. Essentially our brains are maps. This mapping results from the way connections in the brain are ordered and arranged. The ordering of neural pathways between different parts of the brain and those going to and from our muscles and sensory organs produces specific patterns on the brain surface.

So, I think that is exactly why you've found your "thank you, jaw" approach is so effective—it targets the jaw's oversized "territory" on this cortical map (right next to lips and hands, which get huge real estate due to constant sensitivity and use in speech/eating). When you speak directly to it, you're focusing attention on that precise neural zone, strengthening sensory awareness while dialling down overactive fear/tension signals through the parasympathetic "rest" response.

Vague self-talk spreads thin, but it seems that your pinpoint gratitude is retraining the jaw's brain area to relax, letting speech flow smoother without bracing. As the brain naturally processes body parts as distinct, responsive regions—your intuition perfectly matches that wiring... Totally brilliant!

If you've never seen the homunculus diagram or the models representing it, you can see them here: https://learnsomatics.ie/how-your-brain-sees-your-body/ (How your Brain sees your Body - Learn Somatics)

 

[Rabscuttle]

Fantastic, @Rabscuttle!

What you've done is reverse-engineered the homunculus without the diagram. Perhaps you already know about this, but just in case you haven't come across it (I was only reading about this just the other day)...

The somatosensory homunculus is a representation of the human body in the brain’s somatosensory cortex. The term homunculus comes from the Latin word for “little man” and refers to a map of the human body that is laid across a portion of the cerebral cortex. Essentially our brains are maps. This mapping results from the way connections in the brain are ordered and arranged. The ordering of neural pathways between different parts of the brain and those going to and from our muscles and sensory organs produces specific patterns on the brain surface.

So, I think that is exactly why you've found your "thank you, jaw" approach is so effective—it targets the jaw's oversized "territory" on this cortical map (right next to lips and hands, which get huge real estate due to constant sensitivity and use in speech/eating). When you speak directly to it, you're focusing attention on that precise neural zone, strengthening sensory awareness while dialling down overactive fear/tension signals through the parasympathetic "rest" response.

Vague self-talk spreads thin, but it seems that your pinpoint gratitude is retraining the jaw's brain area to relax, letting speech flow smoother without bracing. As the brain naturally processes body parts as distinct, responsive regions—your intuition perfectly matches that wiring... Totally brilliant!

If you've never seen the homunculus diagram or the models representing it, you can see them here: https://learnsomatics.ie/how-your-brain-sees-your-body/ (How your Brain sees your Body - Learn Somatics)

Holy cow, thanks bloodmoon. No I’ve never heard of this. lol this kinda makes sense now why my jaw is so stubborn aside from being necessary to interact with the world. Our brains are naturally more engaged/focused on this area. This makes me feel more empathetic for my situation! I should doubly thank you, your recent threads played a big part in brain storming ways of how I should speak to myself. I shall stick with this and see where it leads!

 

[BloodMoon]

I should doubly thank you, your recent threads played a big part in brain storming ways of how I should speak to myself.

Glad they helped! And thanks to you I'm going start a practise of talking to my body parts

 

[Rabscuttle]

Thought I’d give an update! My jaw has pretty much no impact on my life these days. I still have mild levels of tension and pain, but there’s no more doubt and no more fear. So I imagine it will be gone fully someday. I still pop my ears too much, so that’s definitely not helping lol, but I’m working on that. I pretty much have no meaningful symptoms at this stage and they’re just overall way less ‘sticky’-a sensation that would’ve became a flare that lasted weeks is gone in an hour or so. Interesting stuff. i unfortunately have slipped a bit in the mental health department, which is the nature and cycle of TMS I imagine, as the physical symptoms go away old patterns can reemerge. I replay the past entirely too much and still have a tendency to put a lot of pressure on myself in terms of what I should be doing or how I should be living. But my brain clearly trusts me more, because it’s not reacting to these things with debilitating symptoms anymore. I’ve clearly earned myself some grace and a window to make changes. I am still learning and growing, and am just doing my best to be kind to myself. It’s a lifelong journey to make these changes. My goal isn’t to be pain free. My goal is to be happy and someone who is putting out good energy and vibes and that’s going to be a long process. I’m in for the long haul!

It crazy to think I’m pretty much a success story! I don’t feel like one too much! I think in my head I built up this moment to be grand and huge. But I guess in the absence of severe pain one of my main purposes is missing. I guess I’ll have to fill my life with new stuff. Having faith and optimism that I can fully rebuild this life that I kind of imploded.

I really want to do the podcast success story circuit lol, because I know getting over these symptoms will inspire some people, especially the vasectomy stuff. But it doesn’t really feel real yet, y’know, it still feels like it can come crashing down a bit, which is just me tendency to be biased towards the negative. Hopefully I’ll continue to grow and that will change soon!

your brain and body are not asking for perfection, they don’t need perfection. Just effort!