What else is there - Seriously

[eskimoeskimo]

I’d like to add that many of us have had 24/7 (or nearly 24/7) pain that felt absolutely crippling. I couldn’t even grip my cell phone, per my cat, or feel my bed sheets. My limbs were turning purple and yellow from Raynaud’s, which I once posted (now deleted) photos of on these forums back in 2017. I had a nervous breakdown in the ER at University of Chicago and they debated sending me to the psych ward because I was in such despair, but they ended up telling me to go to Mayo Clinic - even they were puzzled by my skin.

And I was previously on a sports team in college where I had fast balls whipped at my face and scars on my knees that I carried around like trophies! My sister used to call me a “jock,” I was in the top percentile for leg strength, some college friends would ask to feel my stomach muscles at parties, etc. So pain and debilitation was a humiliating experience for me. I went from feeling powerful to weak and like I was going to lose everything. Also, I do have a structural condition - Ehlers-Danlos that causes dysautonomia and mast cell activation - and I could have totally just threw my hands up and said screw it.

I say this because people sometimes seem to think that it’s impossible to go on if your pain isn’t severe. People like Miffy who recovered from CRPS or Ozanich who was at one point dealing with a paralyzed limb have gone through hell and back, and made it out. You can do this even with nightmare pain.

But I’m living a fantastic life now. I am a normal human being and not every day is joyous, but I’m so glad I was born and continue to be alive.

One other thing to be careful with: constantly rereading posts or reaching out to experts like Ozanich, Schubiner, etc. Those of us who are obsessive reassurance seekers go beyond arming ourselves with knowledge. Balance is so important for us (and everyone, really).

I don't know why I can't wrap my head around this. I fully admit that my pain is never very bad. And I'm not physically limited in any way. There's a mild to moderate cramp in my neck all the time. That's it. And yet somehow this has become the end of the world for me, that it's there at all. It's confusing really. On the one hand I'm grateful that the pain isn't worse, on the other hand it's disorienting and actually makes me feel guilty to be so overcome, to wallow in, what is relatively speaking a minor symptom. My brain has just put all the eggs in this basket. I don't know if it's a distraction, or emblematic of all the suffering, or magnified by focus, or all of the above, or what. But I hate this sensation with the energy of a thousand suns.

And on your last point, I have a message from Schubiner right now that I haven't opened yet because I'm "saving" it ... hoping it will be reassuring and will pull me out of the darkness. And I can also see that his and my email chain is more than 150 messages long. And you won't be surprised to know that all of my messages have been essentially the same thing rewritten.

... sounds like OCD huh?

 

[tgirl]

I’d like to add that many of us have had 24/7 (or nearly 24/7) pain that felt absolutely crippling. I couldn’t even grip my cell phone, per my cat, or feel my bed sheets. My limbs were turning purple and yellow from Raynaud’s, which I once posted (now deleted) photos of on these forums back in 2017. I had a nervous breakdown in the ER at University of Chicago and they debated sending me to the psych ward because I was in such despair, but they ended up telling me to go to Mayo Clinic - even they were puzzled by my skin.

And I was previously on a sports team in college where I had fast balls whipped at my face and scars on my knees that I carried around like trophies! My sister used to call me a “jock,” I was in the top percentile for leg strength, some college friends would ask to feel my stomach muscles at parties, etc. So pain and debilitation was a humiliating experience for me. I went from feeling powerful to weak and like I was going to lose everything. Also, I do have a structural condition - Ehlers-Danlos that causes dysautonomia and mast cell activation - and I could have totally just threw my hands up and said screw it.

I say this because people sometimes seem to think that it’s impossible to go on if your pain isn’t severe. People like Miffy who recovered from CRPS or Ozanich who was at one point dealing with a paralyzed limb have gone through hell and back, and made it out. You can do this even with nightmare pain.

But I’m living a fantastic life now. I am a normal human being and not every day is joyous, but I’m so glad I was born and continue to be alive.

One other thing to be careful with: constantly rereading posts or reaching out to experts like Ozanich, Schubiner, etc. Those of us who are obsessive reassurance seekers go beyond arming ourselves with knowledge. Balance is so important for us (and everyone, really).

Dorado, I just want to ask you if you feel all the symptoms you mentioned in this post were mind/body? I know reassurance is something that can be counterproductive but hearing that they were TMS would be helpful to many. Thanks for all of your great posts.

 

[Balsa11]

I don't know why I can't wrap my head around this. I fully admit that my pain is never very bad. And I'm not physically limited in any way. There's a mild to moderate cramp in my neck all the time. That's it. And yet somehow this has become the end of the world for me, that it's there at all. It's confusing really. On the one hand I'm grateful that the pain isn't worse, on the other hand it's disorienting and actually makes me feel guilty to be so overcome, to wallow in, what is relatively speaking a minor symptom. My brain has just put all the eggs in this basket. I don't know if it's a distraction, or emblematic of all the suffering, or magnified by focus, or all of the above, or what. But I hate this sensation with the energy of a thousand suns.

And on your last point, I have a message from Schubiner right now that I haven't opened yet because I'm "saving" it ... hoping it will be reassuring and will pull me out of the darkness. And I can also see that his and my email chain is more than 150 messages long. And you won't be surprised to know that all of my messages have been essentially the same thing rewritten.

... sounds like OCD huh?

That sounds pretty mind-body. Is your mental suffering greater or your physical suffering? On an off-chance it could be ADHD but I would double check with Dr. Schubiner.

 

[Balsa11]

I don't know why I can't wrap my head around this. I fully admit that my pain is never very bad. And I'm not physically limited in any way. There's a mild to moderate cramp in my neck all the time. That's it. And yet somehow this has become the end of the world for me, that it's there at all. It's confusing really. On the one hand I'm grateful that the pain isn't worse, on the other hand it's disorienting and actually makes me feel guilty to be so overcome, to wallow in, what is relatively speaking a minor symptom. My brain has just put all the eggs in this basket. I don't know if it's a distraction, or emblematic of all the suffering, or magnified by focus, or all of the above, or what. But I hate this sensation with the energy of a thousand suns.

And on your last point, I have a message from Schubiner right now that I haven't opened yet because I'm "saving" it ... hoping it will be reassuring and will pull me out of the darkness. And I can also see that his and my email chain is more than 150 messages long. And you won't be surprised to know that all of my messages have been essentially the same thing rewritten.

... sounds like OCD huh?

When you move to the psychological it's common to feel emotionally overwhelmed from time to time. This is actually what "the work" feels like, like massaging a sore trigger point. First an uncomfortable sensation, then your mind having a million tabs open, then making a bunch of decisions to close tabs you don't need and physically calm down. It's a tiring puzzle every time. Plateus suck so much. Tell yourself that the fact your pain is low is a darn awesome thing (because it is!) , and empathize with how you feel! The sensations sort of turn into a burnout feeling when I pay less attention to them. Sometimes you feel the emotions bubble up out of nowhere.

 

[Balsa11]

I don't know why I can't wrap my head around this. I fully admit that my pain is never very bad. And I'm not physically limited in any way. There's a mild to moderate cramp in my neck all the time. That's it. And yet somehow this has become the end of the world for me, that it's there at all. It's confusing really. On the one hand I'm grateful that the pain isn't worse, on the other hand it's disorienting and actually makes me feel guilty to be so overcome, to wallow in, what is relatively speaking a minor symptom. My brain has just put all the eggs in this basket. I don't know if it's a distraction, or emblematic of all the suffering, or magnified by focus, or all of the above, or what. But I hate this sensation with the energy of a thousand suns.

And on your last point, I have a message from Schubiner right now that I haven't opened yet because I'm "saving" it ... hoping it will be reassuring and will pull me out of the darkness. And I can also see that his and my email chain is more than 150 messages long. And you won't be surprised to know that all of my messages have been essentially the same thing rewritten.

... sounds like OCD huh?

I have a really really strong feeling you're on the mend, you really are. You might not feel it in the middle of a mood swing or low mood, but I think this has opened up a new understanding. You're really going to be ok. You're making progress through these tough conversations, even if it isn't immediately obvious.

 

[plum]

Repetitive/obsessive thinking and reassurance seeking are why well-intended members who will respond to you for dozens upon dozens of pages need to be careful - they are amazing people, but don’t realize that some of us are hooked on it, even if we don’t want to be.

May I also add that this pandering to reassurance seeking is often a sign of co-dependency and is something that needs facing and healing. Co-dependency is essentially a loss of self (and identity) by caring more for others than you care for yourself. It’s all too easy to dismiss as simple people-pleasing but it can be much more complex and damaging than this. I learned the hard way so I hope that in flagging this that it’ll reach someone who will benefit from the insight.

 

[birdsetfree]

On a practical note, eskimoeskimo, I had a thought that maybe you could come on here and talk about anything other than your pain. Talk about your life instead, your goals, your plans and related highs and lows. Maybe talking to a bunch of fellow TMS'ers about normal life will help your brain to adjust to more mainstream common situations. When I was in the beginning of therapy for TMS my therapist refused to talk to me about the pain. I wasn't even allowed to say the word! It was extremely hard to do this and I wanted to yell at her but I noticed over the year of talking to her in this way my brain gradually switched focus from pain to life.

 

[Dorado]

May I also add that this pandering to reassurance seeking is often a sign of co-dependency and is something that needs facing and healing. Co-dependency is essentially a loss of self (and identity) by caring more for others than you care for yourself. It’s all too easy to dismiss as simple people-pleasing but it can be much more complex and damaging than this. I learned the hard way so I hope that in flagging this that it’ll reach someone who will benefit from the insight.

Agreed. I used to respond to people for pages and pages on end. The truth is, my success story post really is all there is for me to say in terms of “how” I healed.

Great therapists who get healing from anxiety and don’t frame it as “always a permanent mental illness” include: https://www.anxietycentre.com/anxiety-therapy-counseling-coaching.shtml (Anxietycentre.com Recommended Therapists, Psychotherapists, Counselors, Coaches)

 

[tgirl]

May I also add that this pandering to reassurance seeking is often a sign of co-dependency and is something that needs facing and healing. Co-dependency is essentially a loss of self (and identity) by caring more for others than you care for yourself. It’s all too easy to dismiss as simple people-pleasing but it can be much more complex and damaging than this. I learned the hard way so I hope that in flagging this that it’ll reach someone who will benefit from the insight.

Plum, I’ve been thinking about this post and believe I am a person who needs reassurance far more than is healthy. The issue with me is that I feel the TMS personality trait of people pleasing is one I definitely don’t possess. Maybe I’m the opposite, I stay away from situations that might require this. Hmmm. You seem like you’ve given this a lot of consideration, so I’m wondering if you might have another suggestion why a person might seek constant reassurance? It’s as though I don’t really trust myself. It’s certainly a thought provoking statement you’ve made.

On another note, I think finally I have shifted my thinking to being less reactionary and maybe for the first time see hope that my situation is turning around.

 

[RogueWave]

On a practical note, eskimoeskimo, I had a thought that maybe you could come on here and talk about anything other than your pain. Talk about your life instead, your goals, your plans and related highs and lows. Maybe talking to a bunch of fellow TMS'ers about normal life will help your brain to adjust to more mainstream common situations. When I was in the beginning of therapy for TMS my therapist refused to talk to me about the pain. I wasn't even allowed to say the word! It was extremely hard to do this and I wanted to yell at her but I noticed over the year of talking to her in this way my brain gradually switched focus from pain to life.

Excellent point. I was thinking about this recently, and I remember the first step in healing for me was making a firm decision that I wasn’t going to complain anymore. Ever. Not to myself or anyone else.

Man, was that difficult! But I understand it now as not much different as withdrawal from a drug. Biochemically it’s the same process. But the need/want to complain was so strong, that when a complaint would slip out, I noticed deep down I immediately got that ‘ahhh’ feeling that I’ve seen addicts get when they finally get their fix.

 

[RogueWave]

Great therapists who get healing from anxiety and don’t frame it as “always a permanent mental illness” include: https://www.anxietycentre.com/anxiety-therapy-counseling-coaching.shtml (Anxietycentre.com Recommended Therapists, Psychotherapists, Counselors, Coaches)

Thanks for bringing this up. This is also true in medicine in general. In most cases I tell patients my goal with them is ‘to fix your problem so you don’t have to keep coming back to see me.’ I often get this quizzical look, then a laugh, because they rarely hear that. I’m realistic about what’s possible, so this isn’t with all people, but definitely the majority.

But that’s how the treatment starts. Help them shift their mindset immediately, and keep that ball rolling until they are well, if that’s possible.

 

[Balsa11]

Excellent point. I was thinking about this recently, and I remember the first step in healing for me was making a firm decision that I wasn’t going to complain anymore. Ever. Not to myself or anyone else.

Man, was that difficult! But I understand it now as not much different as withdrawal from a drug. Biochemically it’s the same process. But the need/want to complain was so strong, that when a complaint would slip out, I noticed deep down I immediately got that ‘ahhh’ feeling that I’ve seen addicts get when they finally get their fix.

But we forget it's ok to slip up as long as we don't do it too often.

 

[Balsa11]

Plum, I’ve been thinking about this post and believe I am a person who needs reassurance far more than is healthy. The issue with me is that I feel the TMS personality trait of people pleasing is one I definitely don’t possess. Maybe I’m the opposite, I stay away from situations that might require this. Hmmm. You seem like you’ve given this a lot of consideration, so I’m wondering if you might have another suggestion why a person might seek constant reassurance? It’s as though I don’t really trust myself. It’s certainly a thought provoking statement you’ve made.

On another note, I think finally I have shifted my thinking to being less reactionary and maybe for the first time see hope that my situation is turning around.

Same here! I used to come here when I had flare ups but now I come here to make sure @eskimoeskimo and the others are doing at least ok.

 

[Balsa11]

On a practical note, eskimoeskimo, I had a thought that maybe you could come on here and talk about anything other than your pain. Talk about your life instead, your goals, your plans and related highs and lows. Maybe talking to a bunch of fellow TMS'ers about normal life will help your brain to adjust to more mainstream common situations. When I was in the beginning of therapy for TMS my therapist refused to talk to me about the pain. I wasn't even allowed to say the word! It was extremely hard to do this and I wanted to yell at her but I noticed over the year of talking to her in this way my brain gradually switched focus from pain to life.

Just curious, how would you not talk about the pain in TMS therapy if that's what you were there for? Do you mean not going over specific symptoms? It's easy to ignore them when they're mild, though.

Sometimes when it gets past a certain point in terms of what you can handle, talking about it can help you break out of the thought loop and see it in a new light.

 

[RogueWave]

But we forget it's ok to slip up as long as we don't do it too often.

Absolutely! Majority wins, and that goes for both ways.

 

[Dorado]

@tgirl, reassurance seeking can be a learned habit.

Nobody in my personal life, aside from my nuclear family and a few best friends, knows what I went through or how anxious I’ve gotten in the past. I’m constantly being told I always smile and am happy and polite. I have been recognized for this personally and professionally. Analysis and tailored strategies and solutions under insanely tight deadlines = my career. In college, I was picked to deliver bad news to students as part of my job because my manager thought I was “the most calming on the team.” I’ve been tapped for mentorship leadership opportunities for similar reasons today. Had I committed suicide, it would’ve been a major shock for everyone but my inner circle.

You don’t know what people are dealing with. More people are struggling than you know. The happy appearance for me, to some degree, also involves the desire to make everyone feel like everything is okay. There was a trend: If I hadn’t come to you for reassurance, I was probably your reassurer because I understand the pain of uncertainty. It’s a very, very strange cognitive dissonance I had to work through. “Am I the strong person and leader many people think I am, or the anxiety-ridden mess my mom, sister, best friend, etc. see?” I could resolve everyone else’s issues but not my own due to my attachment to my personal uncertainty. Saving someone else also made me believe once and for all that I could save myself, that I had the power within me. And I couldn’t convince another person that there was always an answer, what did that mean for my issues?

I can’t fix anyone and they can’t fix me - we can simply encourage each other and offer our own stories, until it’s no longer beneficial due to reasons such as reassurance seeking. Inner strength is something we can all develop and working toward being your own rock after you’ve been given the tools and support is critical.

 

[plum]

Plum, I’ve been thinking about this post and believe I am a person who needs reassurance far more than is healthy. The issue with me is that I feel the TMS personality trait of people pleasing is one I definitely don’t possess. Maybe I’m the opposite, I stay away from situations that might require this. Hmmm. You seem like you’ve given this a lot of consideration, so I’m wondering if you might have another suggestion why a person might seek constant reassurance? It’s as though I don’t really trust myself. It’s certainly a thought provoking statement you’ve made.

My guess is that constant reassurance seeking is something to do with anxiety and feeling safe. So much of TMS seems to boil down to feeling safe, be that in our own bodies, relationships, homes and lives. Maybe something happened to us that knocked this grounded surety out of whack. Maybe we’ve had bad relationships where we were betrayed and have never quite resolved this. Maybe we’ve never learned to hold strong boundaries and our sense of self bleeds out. Maybe it’s a way to try to corall our fears.

Whatever the origin, reassurance seeking and co-dependency are behaviours that can easily become toxic (and addictive or obsessive). In both instances we need to move towards independence, healthy self-esteem and good boundaries.

I did a quick google and there are a few interesting articles out there which might stir a bit of introspection.

Here’s one:

https://www.newharbinger.com/blog/why-sometimes-no-amount-reassurance-enough (Why Sometimes No Amount of Reassurance Is Enough)

On another note, I think finally I have shifted my thinking to being less reactionary and maybe for the first time see hope that my situation is turning around.

Beautiful. x

 

[Dorado]

My guess is that constant reassurance seeking is something to do with anxiety and feeling safe. So much of TMS seems to boil down to feeling safe, be that in our own bodies, relationships, homes and lives. Maybe something happened to us that knocked this grounded surety out of whack. Maybe we’ve had bad relationships where we were betrayed and have never quite resolved this. Maybe we’ve never learned to hold strong boundaries and our sense of self bleeds out. Maybe it’s a way to try to corall our fears.

Whatever the origin, reassurance seeking and co-dependency are behaviours that can easily become toxic (and addictive or obsessive). In both instances we need to move towards independence, healthy self-esteem and good boundaries.

I did a quick google and there are a few interesting articles out there which might stir a bit of introspection.

Here’s one:

https://www.newharbinger.com/blog/why-sometimes-no-amount-reassurance-enough (Why Sometimes No Amount of Reassurance Is Enough)



Beautiful. x

100% spot on. Safety is everything. Plum, you are truly a wonderful person.

 

[tgirl]

@tgirl, reassurance seeking can be a learned habit.

Nobody in my personal life, aside from my nuclear family and a few best friends, knows what I went through or how anxious I’ve gotten in the past. I’m constantly being told I always smile and am happy and polite. I have been recognized for this personally and professionally. Analysis and tailored strategies and solutions under insanely tight deadlines = my career. In college, I was picked to deliver bad news to students as part of my job because my manager thought I was “the most calming on the team.” I’ve been tapped for mentorship leadership opportunities for similar reasons today. Had I committed suicide, it would’ve been a major shock for everyone but my inner circle.

You don’t know what people are dealing with. More people are struggling than you know. Bragg happy appearance for me, to some degree, also involves the desire to make everyone feel like everything is okay. There was a trend: If I hadn’t come to you for reassurance, I was probably your reassurer because I understand the pain of uncertainty. It’s a very, very strange cognitive dissonance I had to work through. “Am I the strong person and leader many people think I am, or the anxiety-ridden mess my mom, sister, best friend, etc. see?” I could resolve everyone else’s issues but not my own due to my attachment to my personal uncertainty. Saving someone else also made me believe once and for all that I could save myself, that I had the power within me. Like when I dated that woman whose life I wanted to fix and then later I was completely infatuated in every way with that guy who was so stable and loved life - I was addicted to that. It can go both ways for one individual and be toxic.

I can’t fix anyone and they can’t fix me - we can simply encourage each other and offer our own stories, until it’s no longer beneficial due to reasons such as reassurance seeking. Inner strength is something we can all develop and working toward being your own rock after you’ve been given the tools and support is critical.

Dorado, you sound a bit like me in that people who don’t know me well think I’m the ‘most together person they’ve met, so in control’. When in my case, I’m dying inside for one reason or another. I think my anxiety level has hovered at a very uncomfortable level for sometime, if not for years, easing off at times. I’m aware of this now and think I am calming myself down, slowly. Even my family doctor feels I ruminate and obsess. Even he feels my sensations are my brain’s doing. Trusting in myself and knowing I’m okay has been an issue for me, but now I’m truly aware of this.

 

[tgirl]

My guess is that constant reassurance seeking is something to do with anxiety and feeling safe. So much of TMS seems to boil down to feeling safe, be that in our own bodies, relationships, homes and lives. Maybe something happened to us that knocked this grounded surety out of whack. Maybe we’ve had bad relationships where we were betrayed and have never quite resolved this. Maybe we’ve never learned to hold strong boundaries and our sense of self bleeds out. Maybe it’s a way to try to corall our fears.

Whatever the origin, reassurance seeking and co-dependency are behaviours that can easily become toxic (and addictive or obsessive). In both instances we need to move towards independence, healthy self-esteem and good boundaries.

I did a quick google and there are a few interesting articles out there which might stir a bit of introspection.

Here’s one:

https://www.newharbinger.com/blog/why-sometimes-no-amount-reassurance-enough (Why Sometimes No Amount of Reassurance Is Enough)



Beautiful. x

Plum, I had a look at this article and thank you for posting it. The crux of it seems to say ‘a profound intolerance of uncertainty’ can lead to reassurance seeking. It certainly rings true for me. The article is worth a read.