What else is there - Seriously

[Idearealist]

Hi Idearealist,

I meant I'm worried that the tinnitus is evidence of damage which has already occurred, not that the tinnitus will do damage. I care a lot about music, so have a hard time tolerating the possibility of even minor hearing loss. I also worry about the tinnitus getting worse, and continuing to make me anxious and distract me. It's already become hard for me to tolerate quiet rooms and silence.

Do you view it as TMS or not? I mean in your case

Thanks

Heyo Eskimo

I'm tempted to say it was initially "physical," but I'm not 100% sure anymore.

The onset of my tinnitus coincided with a severe reaction to a drug that landed me in the hospital for over a week. But it was the culmination of months of EXTREME neurological side effects that brought me to death's doorstep. Once I got stabilized, most of the symptoms slowly faded and the tinnitus also got better. But it never totally resolved, and I have to think that it's more connected to being an anxiety-prone person.

It does sound like it's extremely common, and I would bet good money that it's more your OCD doing a number on you (and me!) than anything else. If it wasn't tinnitus, then it would be something else. See the pattern?

 

[RogueWave]

I'll leave it at that, because like other members say, I don't think it is good to allow reassurance-seeking, especially when we get overboard with it. But I'll leave with this poem, I think many of you already know it : http://www.phys.unm.edu/~tw/fas/yits/archive/oliver_wildgeese.html (Mary Oliver Wild Geese).

Ludmilla

Fantastic post! Thanks for sharing your story, and congratulations on your progress. I've never heard that poem before, but I appreciate you sharing it. Sounds a bit like Rumi's 'Guesthouse' poem.

It also reminds me a of the story of Liezi, who was the 3rd great Taoist master in history behind Laozi and Chuangzi. I've dabbled in Taosim, Buddhism, and Hinduism a bit, and have found that there are many commonalities between them, but Liezi's story is so relevant to TMS, it's worth sharing here. Again, as we've mentioned, there isn't just one way to heal. So I'm not posting this to be confusing, but rather to add another viewpoint/option to consider.

The state they refer to as 'being in accordance with the Tao' is like being 'in the zone.' Everything seems effortless, and the body feels like it requires no effort to move. I think most people have had some minor experience with this, but it's very difficult to stay in for very long (at least that has been my experience!). But Liezi was able to achieve this state permanently. People said when he walked it looked like he was floating just above the ground. Not the tiniest bit of tension anywhere to be found, physically or mentally. No opposition.

How did he achieve this? He found a master who lived in a small hut. Liezi sat outside the hut for almost a year, while the master paid no attention to him. Eventually he got frustrated and left, but eventually returned. So he sat outside of the hut every day, and tried to control his mind in such a way that he would not think of anything as good, bad, advantage, disadvantage, etc. He tried very hard for over 2 years to achieve this mental state of 'non-choosing.' The master would look at him occasional, but not say anything. After this 2 year period, the master finally invited him into his hut. It was at that moment Liezi suddenly decided to stop trying to control his mind. He put it like this: "I let my ears hear what they wanted to hear, I let my eyes see what they wanted to see, I let my feet move wherever they wanted to go, and I let my mind think whatever it wanted to think.' As soon as this happened, he said 'It was a very strange sensation, because all my bodily existence seemed to melt and become transparent, and to have no weight. And I didn't know if I was walking on the wind, or the wind was walking on me.' This is referred to as 'the fasting of the heart/mind.'

No resistance, and acceptance of everything. No analysis of the thoughts, feelings, the body, or anything else.....and everything changed.

 

[eskimoeskimo]

Hi Eskimo,

I'm still healing but these last days I've been seeing a lot of improvements and signs that I'm getting this under control. I've read the whole thread and I thank you for starting it, as I've found a lot of good advice, particularly in MiffyBunny and RogueWave's posts.

When reading your posts I feel like I know exactly what you mean - we're not really similar when it comes to symptoms, but I have OCD which manifests in many different ways, and has been since I was a kid. It's kind of under control now.

I say this because your whole thread screams OCD to me. I did the same constant reassurance-seeking, a bit on these forums and a lot, and I really mean a lot, with my family, especially my mother and my sister. Constantly telling them how I was hurting, why wasn't I getting better, etc. This was definitely the worst thing I could do. It's natural to want to connect with others and to share your struggles, but at some point it's getting too much.

You now seem to be OCD-ing with tinnitus, which, according to you, is mild - as is your neck pain. You say you've tried everything under the TMS-umbrella of healing and it didn't work. OK. Several members of this forum, members who have completely healed themselves, have pointed out to you why you could be wrong in that light. But as you don't agree with them, I'm gonna take this the other way round - because that is what worked for me.

Let's say this TMS stuff isn't doing much for you. Your doctors have assured you time and again that everything looks fine. You do not have broken bones, infections, or cancer. But you do have symptoms that cause you constant disconfort. So you're at a crossroads :
1/ you can let despair destroy you, posting from time to time on these forums to argue about TMS and the way to cure it ;
2/ you can go back on the medical merry-go-round, asking for more testing, more PT... but that would probably send you back to choice n°1 ;
3/ you can decide to be OK to live with this constant disconfort.

Needless to say, I'm rooting for solution n°3. That's what I did, and I'm getting better as a result. But you can't do it TO get better. You really, really have to accept your life as it is now. I have friends and family who are definitely struggling with TMS, too - only they're not aware it's TMS. Or, for some of them, they definitely have structural issues : one of my friends is a young woman born with a difformity (don't know what it's called in English) and has always walked completely crooked, with a crutch, and has trouble speaking. Well, she became a journalist, and is passionate about puppet-theater. We met at a qi gong and tai chi session - she had never done qi gong and tai chi before, and just decided to try and crossed the country by train and bus to do this session, with people she didn't know and who could have reacted badly to her handicap. She had to do the trainings sitting on a chair. And she enjoyed the session just like anyone else. She's a badass.

Another of my friends, whom I'm really close to, has 2 auto-immune conditions and multiple other health issues (I do believe these are psychogenic because she has a TMS-personality and faced some really bad stuff during her childhood). She has Hashimoto and Goujerot-Sjörgen syndroms. She had vaginismus (better now). She got hepatitis from an unknown cause ; frequent colds that would let her lying down in bed ; really bad gluten intolerance meaning she can't eat a lot of good stuff ; vertigo and dizziness... And there is still trouble within her family.
Well, guess what ? She's finishing her PhD (brilliantly), met a great guy and got married one year ago, got a full-time job, managed multiple moving-outs and moving-ins, goes out with friends (well, at least before covid !), has lots of things she's interested in and enjoys doing... Basically, she's a real badass too.

And so I said to myself : if these people can get through life, and not only get through it, but enjoy it, with all the difficulties they're facing and compared to which mine are just a speck of dust, then I can be a badass too. Just like you. We can decide to be like the people we admire, the ones who keep having really bad stuff happening to them and who keep on keeping on, and with a smile too. Even if we did have structural issues, which I don't think any of us have. We're not special. We're just wired to over-react to things. But wires can be cut, and new ones can replace them.

I'll leave it at that, because like other members say, I don't think it is good to allow reassurance-seeking, especially when we get overboard with it. But I'll leave with this poem, I think many of you already know it : http://www.phys.unm.edu/~tw/fas/yits/archive/oliver_wildgeese.html (Mary Oliver Wild Geese).

Ludmilla

Thank you, Ludmilla, for your encouragement and understanding. I do definitely see how much this all resembles (or maybe just is) OCD. And reassurance-seeking would be considered a maladaptive compulsion. For a while I was so convinced that this was all best seen through the lens of OCD that that's what I sought treatment for exclusively. I cut down on reassurance significantly for a while, but I admit it has crept back up in recent months. It's still not back up to previous levels ... but sometimes I just don't know what else to do but ask someone whom I trust "what is wrong with me? why won't this pain stop?"

I do find the 'learn to live well with it, whether the symptoms stay or go' approach appealing. I have one question though. If this is the way to get better from chronic pain (and I get that paradoxically for it to 'work' this can't be the aim), why do there seem to be so many people in chronic pain, and who aren't familiar with TMS, who move on with life regardless of symptoms and whose symptoms don't improve? I get that living well with symptoms is still better than living poorly with symptoms, but why do the symptoms persist?

In my own life too there have been stretches of living well, or at least much much much better than how I'm living now, and yet the symptoms were no different. I know that @miffybunny says that that's because there are other pieces to getting better, but for those of you who think the way out is primarily or exclusively behavioral - what is the explanation here?

Sincere thanks

PS your english is perfect

 

[eskimoeskimo]

Heyo Eskimo

I'm tempted to say it was initially "physical," but I'm not 100% sure anymore.

The onset of my tinnitus coincided with a severe reaction to a drug that landed me in the hospital for over a week. But it was the culmination of months of EXTREME neurological side effects that brought me to death's doorstep. Once I got stabilized, most of the symptoms slowly faded and the tinnitus also got better. But it never totally resolved, and I have to think that it's more connected to being an anxiety-prone person.

It does sound like it's extremely common, and I would bet good money that it's more your OCD doing a number on you (and me!) than anything else. If it wasn't tinnitus, then it would be something else. See the pattern?

Thanks for responding, @Idearealist. I'm sorry you went through that back then. Glad you're here to tell the tale.

The rational part of my brain does understand that it's highly likely that it's just another 'thing.' Everyone who knows me thinks it's nothing. Actually I was afraid of tinnitus for 10 years before I started to notice any. Frankly I'm surprised it didn't crop up sooner.

Unfortunately the rational bit holds little to no sway in my head

 

[Havehope]

Great post Ludmilla! I’ve had OCD pretty much my whole life but have only just realised it in the last few years, I’m 36 now and can’t believe it’s taken until now for me to find this out.

I like the idea of learning to accept and live well with the symptoms. This is what I’m trying to do now too. I’ve realised I’m always striving for perfection and it’s just not going to happen. There’s an OCD recovery page that I follow and it’s really helped me. I saw this video recently and it makes a lot of sense:

https://www.instagram.com/tv/CMXUBZoj4-x/?igshid=3x24zvmaedsm (Login • Instagram)

 

[Kozas]

I do find the 'learn to live well with it, whether the symptoms stay or go' approach appealing. I have one question though. If this is the way to get better from chronic pain (and I get that paradoxically for it to 'work' this can't be the aim), why do there seem to be so many people in chronic pain, and who aren't familiar with TMS, who move on with life regardless of symptoms and whose symptoms don't improve? I get that living well with symptoms is still better than living poorly with symptoms, but why do the symptoms persist?

You didn't asked me, but I think I can help you with that. We don't know if someone is living well with chronic pain or not. I mean, it can seems so on outside - in my case people that know I have chronic pain(only my closest family) think I handle my life rather good - yet I tormented myself endlessly in my head. You just never know. Maybe those people that seems so happy and living well, are really dying inside? There are tons of examples of famous people that seemed like happy and succesfull yet they were depressed inside, some of them killed themselves. Maybe some of them even had chronic pain, but nobody outside closest people knew that.
Not to mention that not all chronic pain is TMS, maybe people you talking about have real, diagnosable illnesses like I don't know Leśniewski-Crohn disease or arthritis or something different.
I don't think it's fair to compare your situation to someone else, unless you know really really well person you are comparing yourself too. But usually even closest to us, have some secrets.
I don't think that's style of life is that important(I mean it is important, but it's not number one factor). You can have very active life, yet still think about your pain 24/7 and still suffer from TMS, but on the other side you can sit on your couch all day watching movies, but if you're able to detach from your situation, from your pain, from your fears it means you progress more when it comes to TMS. Of course I'm not advocating sitting all day on the couch, as life itself is more than TMS(it's just important for those, that have moderate to severe symptoms) but what I want to say that in TMS case what is happening inside of us is so much more important than on the outside.
BTW I've said few weeks ago I will give everything I've got to detach myself from pain, and try to finally deal with TMS. My pain is still the same, although I observed sometimes it's worse, sometimes it's better. Although quite interesting is that my skin seems to be better

 

[eskimoeskimo]

Sheesh I just watched one of those Dan Buglio videos and then looked at the comments ... every single one of them sounds like me ... people who have read all the books and done the work and push on with life and try to believe the pain is temporary and yet the pain doesn’t go anywhere. On this video there must have been at least 20 comments that said essentially ‘it’s not working,’ many mentioned being at this for years, and not one comment that said ‘I’m getting better.’ As you all know I didn’t have much hope, but there what was goes out the window.

 

[eskimoeskimo]

You didn't asked me, but I think I can help you with that. We don't know if someone is living well with chronic pain or not. I mean, it can seems so on outside - in my case people that know I have chronic pain(only my closest family) think I handle my life rather good - yet I tormented myself endlessly in my head. You just never know. Maybe those people that seems so happy and living well, are really dying inside? There are tons of examples of famous people that seemed like happy and succesfull yet they were depressed inside, some of them killed themselves. Maybe some of them even had chronic pain, but nobody outside closest people knew that.
Not to mention that not all chronic pain is TMS, maybe people you talking about have real, diagnosable illnesses like I don't know Leśniewski-Crohn disease or arthritis or something different.
I don't think it's fair to compare your situation to someone else, unless you know really really well person you are comparing yourself too. But usually even closest to us, have some secrets.
I don't think that's style of life is that important(I mean it is important, but it's not number one factor). You can have very active life, yet still think about your pain 24/7 and still suffer from TMS, but on the other side you can sit on your couch all day watching movies, but if you're able to detach from your situation, from your pain, from your fears it means you progress more when it comes to TMS. Of course I'm not advocating sitting all day on the couch, as life itself is more than TMS(it's just important for those, that have moderate to severe symptoms) but what I want to say that in TMS case what is happening inside of us is so much more important than on the outside.
BTW I've said few weeks ago I will give everything I've got to detach myself from pain, and try to finally deal with TMS. My pain is still the same, although I observed sometimes it's worse, sometimes it's better. Although quite interesting is that my skin seems to be better

So are you saying it’s not what we do but what we think about?

 

[eskimoeskimo]

I’m in real trouble here. The only way out I can see is suicide.

 

[Kozas]

So are you saying it’s not what we do but what we think about?

Well, everyone I've read that got better atributed that to change in thinking. Most of those people changed what they do trough the day, but change in thinking always come first, if someone tried to change whe he/she is doing without change in thinking it almost never helped(not counting those book cures, that got better in week or two, I'm talking about people like you or me)

 

[eskimoeskimo]

Well, everyone I've read that got better atributed that to change in thinking. Most of those people changed what they do trough the day, but change in thinking always come first, if someone tried to change whe he/she is doing without change in thinking it almost never helped(not counting those book cures, that got better in week or two, I'm talking about people like you or me)

what change of thinking and how do you effect it?

 

[Miller]

@eskimoeskimo Hardly anyone is going to comment on a Dan Buglio video to say they are getting better, because they will be disengaged from the type of material he is sharing. @SteveO says there are two pillars in TMS healing - they are essential Knowledge and Action. He says spend as much time as you want gathering information but remember at some point you have to take the leap of faith and stop going back for more. I'm somewhere in the middle I'd say, which is better than where I have been. If I was "all the way" healed I probably wouldn't be here. But I only read this thread, and my messages as I am currently conversing with someone who is encouraging me. Why the hell would you decide to base your beliefs on everything negative you have seen? There are enough success stories on here to outweigh what you're reading on Facebook. But as a few people have been telling you, your brain is not interested in that information because it is seeking to reinforce the status quo, as that is the easy way to guarantee survival. Now that I have grasped THAT concept, things are so much easier to understand and let go of. Do you really understand that concept as it's been explained to you?

 

[Miller]

I tried to tag Steve Ozanich, maybe he's not on here anymore. Have you read his book or spoken to him?

 

[eskimoeskimo]

@eskimoeskimo Hardly anyone is going to comment on a Dan Buglio video to say they are getting better, because they will be disengaged from the type of material he is sharing. @SteveO says there are two pillars in TMS healing - they are essential Knowledge and Action. He says spend as much time as you want gathering information but remember at some point you have to take the leap of faith and stop going back for more. I'm somewhere in the middle I'd say, which is better than where I have been. If I was "all the way" healed I probably wouldn't be here. But I only read this thread, and my messages as I am currently conversing with someone who is encouraging me. Why the hell would you decide to base your beliefs on everything negative you have seen? There are enough success stories on here to outweigh what you're reading on Facebook. But as a few people have been telling you, your brain is not interested in that information because it is seeking to reinforce the status quo, as that is the easy way to guarantee survival. Now that I have grasped THAT concept, things are so much easier to understand and let go of. Do you really understand that concept as it's been explained to you?

Maybe this is negative bias but I see a lot more people not getting better than getting better. Success stories don’t seem to pop up often, and when they do they’re often along the lines of “I still have pains, but I’m not as afraid of them anymore and my life is improving.” (Which sounds like pain management to me)

Just to clarify, which concept are you referring to at the end there?

Thanks

 

[eskimoeskimo]

I tried to tag Steve Ozanich, maybe he's not on here anymore. Have you read his book or spoken to him?

Yes both

 

[tgirl]

@eskimoeskimo Hardly anyone is going to comment on a Dan Buglio video to say they are getting better, because they will be disengaged from the type of material he is sharing. @SteveO says there are two pillars in TMS healing - they are essential Knowledge and Action. He says spend as much time as you want gathering information but remember at some point you have to take the leap of faith and stop going back for more. I'm somewhere in the middle I'd say, which is better than where I have been. If I was "all the way" healed I probably wouldn't be here. But I only read this thread, and my messages as I am currently conversing with someone who is encouraging me. Why the hell would you decide to base your beliefs on everything negative you have seen? There are enough success stories on here to outweigh what you're reading on Facebook. But as a few people have been telling you, your brain is not interested in that information because it is seeking to reinforce the status quo, as that is the easy way to guarantee survival. Now that I have grasped THAT concept, things are so much easier to understand and let go of. Do you really understand that concept as it's been explained to you?

Miller, I’m probably still at the gathering info stage as well, but am getting a handle on the concepts now more than ever. Only recently have I really looked at how people have healed as opposed to what they’ve healed from. I figured if people weren’t suffering from what I was experiencing then how they got better was irrelevant. I see that was flawed thinking. Can you expand a bit on this statement please? “your brain is not interested in that information because it is seeking to reinforce the status quo, as that is the easy way to guarantee survival. “ I feel I’m a bit slow in this area, lol, , but I think I have a stumbling block with the idea that my pain allows me to to survive.

 

[Miller]

Maybe this is negative bias but I see a lot more people not getting better than getting better. Success stories don’t seem to pop up often, and when they do they’re often along the lines of “I still have pains, but I’m not as afraid of them anymore and my life is improving.” (Which sounds like pain management to me)

Just to clarify, which concept are you referring to at the end there?

Thanks

The concept that your brain is trying to maintain the status quo, whether that is pain, anxiety, stress, whatever...

Basically this from @RogueWave

"Perfectly stated, and I’ve always found neuroplasticity to be fascinating.

It’s important to note, however, that while the brain always has the capacity to shift, it is know that neurons in the brain that ‘fire together, wire together.’ So in other words, the more a concept/thought/emotional state is re-affirmed, the more locked-in it becomes.

That does NOT mean it can’t be changed. In fact, that’s the beauty of neuroplasticity in the first place! I’m mentioning it here in order to show that breaking the old patterns requires some work.

When a new idea or information is introduced, the brain produces a chemical that stimulates the neurons to start producing new connections (that’s the ‘ah ha’ feeling of new information). But if those new pathways are not reinforced, they will dwindle and die within a day. When that happens, the old pattern (and therefore all the feelings, thoughts, and physical sensations) re-assert themselves and you’re back to square 1.

And the most interesting thing is that once the cells become accustomed to a certain biochemical (and therefore emotional state), they will change their receptor sites to accommodate the change in their environment. In this way it becomes no different than any other substance addiction. But in this case, we unknowingly become addicted to substances our own body is producing.

This is why we get ‘stuck.’ And in all honestly, while most people generally don’t change, unless there is a crisis. The body/brain will constantly seek out the environment it has become accustomed to, and the drive to stay in that state influences quite literally everything you say, think, and do. All for the desire to maintain the biochemical state is has become addicted to.

So when you try to calm down and be rational, your brain will eventually start trying to find a reason to get more stress hormone release. So you will tend to start thinking ‘what if’s’, and overall more anxiety-producing (and therefore anxiety biochemical producing) thoughts so it can get its ‘fix.’"

 

[plum]

what change of thinking and how do you effect it?

Sweetheart, throughout this thread people have been talking about how imperative it is to change your thinking, and @miffybunny went into some detail about this.

Remember that pain (or whichever symptom) is not the TMS itself. TMS is the nest of thoughts, beliefs, emotions and behaviours we create around the pain. Once you recognise this you’re better able to challenge and overcome them.

 

[Kozas]

what change of thinking and how do you effect it?

It's not easy because if it was, then TMS wouldn't be an issue. I quess it's something like addiction? How to stop take drugs - just don't take them. Answer is simple but Jesus Christ, it's really hard when it comes to actually doing that minute by minute, hour by hour, day by day. Drug in our case is even harder to escape - you can lock yourself up in room and just don't have any opportunity to take drug, but thinking is something that is always with you. In my case, I just try to not engage with my pain thoughts, and it's hard but if that will not help, then I don't know what will. I've tried many things, but I never REALLY tried to changed myself on the inside...

 

[RogueWave]

Sheesh I just watched one of those Dan Buglio videos and then looked at the comments ... every single one of them sounds like me ... people who have read all the books and done the work and push on with life and try to believe the pain is temporary and yet the pain doesn’t go anywhere. On this video there must have been at least 20 comments that said essentially ‘it’s not working,’ many mentioned being at this for years, and not one comment that said ‘I’m getting better.’ As you all know I didn’t have much hope, but there what was goes out the window.

I think you will always find what you are looking for. I told this story before, but it bears repeating here. I had a patient, mid 60s female, who had chronic pain all over, but mostly in her back and neck. After a single visit it was quite obvious she was TMS-ing, but this was years ago and I wasn’t that good at explaining it. But if you’ve ever seen the ‘Debbie Downer’ on SNL, this patient was pretty close. So as she laid down on the table one visit, I thought ‘I wonder if there is something I could tell her that she wouldn’t find something negative about.’ So I looked out the window, and it was a crystal clear day. I said ‘wow, it’s gorgeous out! There isn’t a cloud in the sky!’ To which she sat up immediately, and said ‘oh no, that’s not true...I saw a cloud on the way in!!’

There is always something negative to look for, in yourself or the world. Whether to seek that is a choice.