Doing the emotional work but feel totally out of control and lost

[Patty Cakes]

"I am so glad I could make you feel better in some way. The process is difficult; it still is for me. However, my main pain has improved, even though I have many more symptoms now. I guess my brain needs to confirm that we are safe. I must keep going, and I know things will still fluctuate and, at times, it will feel like it’s not working, but that is just how the process goes. I have to keep showing it—and so do you—that you are okay.
That is exactly how neuroplasticity works: just as your brain learned to be sensitive to everything and give you those false alarms in your body, it can learn to feel safe again, creating new connections and weakening old ones. You can do this. Keep moving forward as best as you can; you don't have to be perfect. Truth be told, I was never sure if I was responding the right way, I just did the best I could with my activities (reading, walking, watching success stories) which were the things that kept me moving forward. I wish you the best of luck."

I wish the best for you too. Sharing your story, your continued struggles, maybe can both help both of us. IT's awful scary when you feel like you're all alone in this. THere have been many days that I'm scared of looking at those deep emotional wounds and when I do, my body hurts worse. I"m trying to focus on good, positive memories, as Cactus Flower suggested, to balance it out. I have been so focused on this pain because it hurts. But I know I'm just fueling the fire, by doing so. Your words have been so important to me because you are so honest about this process. Like when u said your main pain improved but you have more symptoms now. I can totally relate to that. In doing this work, I'll have pain in my mid back, which I never had before. Before, I blamed my pain on something I did. it sounds ridiculous but I kept a pain journal for two entire years and I wrote down everything I did and so, if my shoulder hurt, I'd look at what I did that day or the day before and blame the pain on whatever (like my lifting a grocery bag). I never, ever thought it could be my emotional state causing the pain. BEcause when it hurts and you actually feel pain, of course it must be physical, something wrong with your body. Learning it's the mind-body connection was something totally foreign to me. So I hope that we can both learn and support each other. I thank you again and please keep in touch and let me know how your doing.

 

[Alouqua47]

Te deseo lo mejor también. Comparte tu historia, tus continuas dificultades, tal vez nos ayuden a ambos. Da mucho miedo sentirte solo en esto. Ha habido muchos días en los que me da miedo mirar esas profundas heridas emocionales y, cuando lo hago, me duele más el cuerpo. Estoy intentando centrarme en recuerdos buenos y positivos, como sugirió Cactus Flower, para equilibrarlo. He estado tan concentrada en este dolor porque duele. Pero sé que al hacerlo solo estoy echando leña al fuego. Tus palabras han sido muy importantes para mí porque eres muy honesta sobre este proceso. Como cuando dijiste que tu dolor principal mejoró, pero que ahora tienes más síntomas. Me identifico totalmente con eso. Al hacer este trabajo, tendré dolor en la parte media de la espalda, algo que nunca había tenido antes. Antes, culpaba a algo que había hecho de mi dolor. Suena ridículo, pero llevé un diario del dolor durante dos años enteros y anotaba todo lo que hacía, así que, si me dolía el hombro, miraba lo que había hecho ese día o el anterior y culpaba del dolor a cualquier cosa (como levantar una bolsa de la compra). Nunca pensé que mi estado emocional pudiera ser la causa del dolor. Porque cuando duele y realmente sientes dolor, por supuesto que tiene que ser físico, algo anda mal con tu cuerpo. Aprender que es la conexión mente-cuerpo fue algo totalmente ajeno a mí. Así que espero que ambos podamos aprender y apoyarnos. El uno al otro. Les agradezco nuevamente y por favor manténganse en contacto y háganme saber cómo están.

"That’s true. It also helped me a lot to learn about other people's personal experiences, to know what the process was like, and what to avoid. The videos and posts by @miffybunny and @TG957, as well as the contributions from people like @BloodMoon and other users, have been very helpful to me and helped me understand this.
I think your brain has created conditioning that you have unintentionally reinforced through fear, but it's not your fault. We have always believed that pain comes from the body and that something is wrong with it. Only when we learn about these concepts do we understand that this isn't always the case; it's not always due to tissue damage, but rather the learning process of a brain that has become sensitized.
This link is to a post that also helped me understand the process. I think your brain is afraid of feeling these repressed emotions, and that's why your symptoms increase afterward. Whenever this happens, stay neutral toward the symptoms or the emotions that arise. That teaches your brain that it is safe to feel them and that it shouldn't be afraid. Do the same with any conditioning you have regarding your symptoms."

 

[Alouqua47]

Thread 'Good info on extinction bursts and plateaus'

Dec 3, 2024

This is a long post, but if you need it, you’re going to love it! It’s from a book written by a forum member @TG957 – who recovered from a debilitating medical diagnosis of complex regional pain syndrome. But really she had TMS. I read her book often for inspiration, because many of my symptoms are like the ones she had. And because it’s easy to get discouraged.

from— Defying the Verdict, How I Defeated Chronic Pain, by Tamara Gurin, pp. 114-119

Non-Linear Recovery and Extinction Bursts

One of the most important things each TMS-er needs to learn and memorize well is...

• Diana-M
• crps extinction burst plateau
• Replies: 21
• Forum: General Discussion Subforum

• 

 

[Patty Cakes]

Thread 'Good info on extinction bursts and plateaus'

Dec 3, 2024

This is a long post, but if you need it, you’re going to love it! It’s from a book written by a forum member @TG957 – who recovered from a debilitating medical diagnosis of complex regional pain syndrome. But really she had TMS. I read her book often for inspiration, because many of my symptoms are like the ones she had. And because it’s easy to get discouraged.

from— Defying the Verdict, How I Defeated Chronic Pain, by Tamara Gurin, pp. 114-119

Non-Linear Recovery and Extinction Bursts

One of the most important things each TMS-er needs to learn and memorize well is...

• Diana-M
• crps extinction burst plateau
• Replies: 21
• Forum: General Discussion Subforum

• 

 

[Patty Cakes]

Thank you for that information on the extinction bursts. I"ll check that out and read the posts of the others who have been helpful for you. I think what's the most scary for me is the head pain that I feel, when my left side flares up. It causes me to feel off-balance. That's the scariest part of all of this for me. I don't know if you or others experienced the feeling of being afraid to leave your home. I can when I need to but I'm always fearful when I go out somewhere, is my head going to hurt, am I going to feel off balance, where is the pain going to be. I don't know if other people or yourself feel that way or have felt that way. I feel with all the pain that I've been dealing with that my world has shrunk. I'm an introverted person but I used to like to go out to the stores, to fairs, etc. The pain has just shrunk my life into just basically staying home. I remember reading "the way out" and when Alan talked about the two animals out in the field. There was one animal that roamed around happily and then there was another animal that ran in fear at a leaf rustling in the breeze. That struck me very hard because I used to be the one that was happy, joyful. But with all this pain that I've been having I feel like that other animal that was scared of a rustling leaf is me. I want to get back to the joyful person that I used to be. that's why it's so helpful for me to connect with people like yourself, that are doing the hard work, dealing with the ups and downs of this and learning to heal themselves, even when it's hard and it often feels like you take one step forward and two steps back. Thanks again for all the information.

 

[Cactusflower]

I wish the best for you too. Sharing your story, your continued struggles, maybe can both help both of us. IT's awful scary when you feel like you're all alone in this. THere have been many days that I'm scared of looking at those deep emotional wounds and when I do, my body hurts worse. I"m trying to focus on good, positive memories, as Cactus Flower suggested, to balance it out. I have been so focused on this pain because it hurts. But I know I'm just fueling the fire, by doing so. Your words have been so important to me because you are so honest about this process. Like when u said your main pain improved but you have more symptoms now. I can totally relate to that. In doing this work, I'll have pain in my mid back, which I never had before. Before, I blamed my pain on something I did. it sounds ridiculous but I kept a pain journal for two entire years and I wrote down everything I did and so, if my shoulder hurt, I'd look at what I did that day or the day before and blame the pain on whatever (like my lifting a grocery bag). I never, ever thought it could be my emotional state causing the pain. BEcause when it hurts and you actually feel pain, of course it must be physical, something wrong with your body. Learning it's the mind-body connection was something totally foreign to me. So I hope that we can both learn and support each other. I thank you again and please keep in touch and let me know how your doing.

Patty Cakes you hit on a wonderfully revealing topic "It's awful scary when you feel like you're all alone in this."
What is "this". I think that is a great place to look into. Loneliness, isolation - the fact you felt teased and tormented by others and family hints towards feeling like you didn't "fit in". Acceptance. Now turn that around on yourself and see how you've been influenced in accepting yourself just how you are.
Toss that pain journal in the trash.
I think you mentioned you are working through the Pain Reprocessing Therapy Workbook? If not, that is another great tool especially for you, crossing off the list of "REASONS" for the pain. You might need to do that repeatedly: I just list them on paper and cross them off daily. Let it sink in. You could even use the points that hit home for you as journaling topics.

Know that you are not alone, we are all here with you.
Know that in this place you absolutely fit in. We are all here for the same reason.
If you'd like to feel you fit in a little more, you can look at other people's entries on this forum and any of those you feel meaningful or want to support, just click the "LIKE" in the bottom right corner. It's a great way to start participating more without having to post if you don't want to. You are also free to post to support others anytime you are ready.

 

[Alouqua47]

Gracias por la información sobre los brotes de extinción. Voy a revisar eso y leer las publicaciones de los demás que te han ayudado. Creo que lo que más me asusta es el dolor de cabeza que siento cuando se me inflama el lado izquierdo. Me hace sentir desequilibrada. Esa es la parte más aterradora de todo esto para mí. No sé si tú u otros han experimentado la sensación de tener miedo de salir de casa. Puedo hacerlo cuando lo necesito, pero siempre tengo miedo cuando salgo a algún sitio: ¿me dolerá la cabeza?, ¿perderé el equilibrio?, ¿dónde estará el dolor? No sé si otras personas o tú se sienten así o se han sentido así. Siento que con todo el dolor con el que he estado lidiando, mi mundo se ha encogido. Soy una persona introvertida, pero antes me gustaba salir a las tiendas, a las ferias, etc. El dolor ha reducido mi vida a básicamente quedarme en casa. Recuerdo haber leído "La salida" y cuando Alan habló de los dos animales en el campo. Había un animal que vagaba felizmente por ahí. Y luego había otro animal que huía asustado al oír una hoja crujir con la brisa. Eso me impactó mucho porque antes yo era la persona feliz y alegre. Pero con todo este dolor que he estado sintiendo, siento que ese otro animal que se asustaba con el crujido de una hoja soy yo. Quiero volver a ser la persona alegre que era antes. Por eso me resulta tan útil conectar con personas como tú, que están haciendo el trabajo duro, lidiando con los altibajos de esto y aprendiendo a sanarse, incluso cuando es difícil y a menudo parece que das un paso adelante y dos atrás. Gracias de nuevo por toda la información.

«Look at this process as if it were a feedback loop that you have to break in order to heal. I recommend that you watch Dr. Schubiner's videos, but let me explain a bit how I understand it. Brain sensitization can happen for many reasons: childhood trauma, pressure, stress, self-imposed high standards, etc., accumulated over time. Or simply due to a very prolonged period of stress where you didn't give your nervous system time to recalibrate.
The brain creates symptoms, and these are perpetuated because the person remains in those same states, or due to the fear and worry about the symptoms themselves. Then, this vicious cycle continues and more symptoms can appear. Your brain makes silly associations and views everything as a danger.
For example, at the beginning I was so terrified of what was happening to me because my symptoms would shift, fluctuate, or change, that I had panic attacks. My world became smaller and smaller due to fear. My brain was afraid of many things, for instance, going out into the street or traveling on buses, because I thought the pain would worsen. My brain had even developed a fear of sleeping, since whenever I tried to relax, I experienced hypnic jerks and a constant feeling of anxiety. Currently, I have already overcome those conditioned responses.
Gradually expose yourself to what you stopped doing out of fear, tolerating it to a certain extent. At first, your brain might worsen the symptoms and that is normal, because it has learned that those are dangerous activities; but every time you expose yourself, you will realize they will become less intense until it stops doing it altogether. Remember, the brain learns through repetition.
I'm not going to tell you it's easy at first, because I went through what you're telling me too. Every time I had those hypnic jerks when trying to relax to sleep at night, I stayed calm. Little by little, over time, I felt those sensations getting milder until I don't have them anymore. Literally, my brain learned that it was safe, and that's how it went with many things».

 

[Patty Cakes]

Patty Cakes you hit on a wonderfully revealing topic "It's awful scary when you feel like you're all alone in this."
What is "this". I think that is a great place to look into. Loneliness, isolation - the fact you felt teased and tormented by others and family hints towards feeling like you didn't "fit in". Acceptance. Now turn that around on yourself and see how you've been influenced in accepting yourself just how you are.
Toss that pain journal in the trash.
I think you mentioned you are working through the Pain Reprocessing Therapy Workbook? If not, that is another great tool especially for you, crossing off the list of "REASONS" for the pain. You might need to do that repeatedly: I just list them on paper and cross them off daily. Let it sink in. You could even use the points that hit home for you as journaling topics.

Know that you are not alone, we are all here with you.
Know that in this place you absolutely fit in. We are all here for the same reason.
If you'd like to feel you fit in a little more, you can look at other people's entries on this forum and any of those you feel meaningful or want to support, just click the "LIKE" in the bottom right corner. It's a great way to start participating more without having to post if you don't want to. You are also free to post to support others anytime you are ready.

Thank u so much for your suggestions. IT made me cry when u wrote "that in this place u absolutely fit in. We are all here for the same reason." Those words struck at my core and my tears felt like healing tears. I do feel understood here. UNlike my father's words, when my mother told him to stop teasing me. He replied "I can tease other kids and they don't act like that. There's something wrong with her." But he never teased anyone like he teased me. It's really funny how we remember hurtful words like that, from years ago and often forget the kind words that are spoken to you throughout ur life.

 

[Patty Cakes]

«Look at this process as if it were a feedback loop that you have to break in order to heal. I recommend that you watch Dr. Schubiner's videos, but let me explain a bit how I understand it. Brain sensitization can happen for many reasons: childhood trauma, pressure, stress, self-imposed high standards, etc., accumulated over time. Or simply due to a very prolonged period of stress where you didn't give your nervous system time to recalibrate.
The brain creates symptoms, and these are perpetuated because the person remains in those same states, or due to the fear and worry about the symptoms themselves. Then, this vicious cycle continues and more symptoms can appear. Your brain makes silly associations and views everything as a danger.
For example, at the beginning I was so terrified of what was happening to me because my symptoms would shift, fluctuate, or change, that I had panic attacks. My world became smaller and smaller due to fear. My brain was afraid of many things, for instance, going out into the street or traveling on buses, because I thought the pain would worsen. My brain had even developed a fear of sleeping, since whenever I tried to relax, I experienced hypnic jerks and a constant feeling of anxiety. Currently, I have already overcome those conditioned responses.
Gradually expose yourself to what you stopped doing out of fear, tolerating it to a certain extent. At first, your brain might worsen the symptoms and that is normal, because it has learned that those are dangerous activities; but every time you expose yourself, you will realize they will become less intense until it stops doing it altogether. Remember, the brain learns through repetition.
I'm not going to tell you it's easy at first, because I went through what you're telling me too. Every time I had those hypnic jerks when trying to relax to sleep at night, I stayed calm. Little by little, over time, I felt those sensations getting milder until I don't have them anymore. Literally, my brain learned that it was safe, and that's how it went with many things».

That gives me so much hope. Thanks so much. I"ll watch Dr. schubiners videos. I did buy his book but haven't read it yet. I'm currently reading a book, suggested by cactus Flower, called Help for your nerves and also bought another one from Claire weekes called Peace from Nervous Suffering. SHe talks about some of the same things you spoke of. THe book, thus far, has been very helpful and resonates deeply with me. She also says it takes time.

 

[Alouqua47]

 

[Patty Cakes]

I"m beginning to see the shift in pain in real time. I woke up with pain on left side (as usual) then awhile later it shifted to the right side. I had a busy morning, putting away a lot of groceries. I sat down to relax and eat and boom, the pain shifted to my left side neck and hip. TWenty minutes later it's now back on my right side. I haven't gone into panic mode, like I would have. IS it trying to get my attention, by all this shifting from side to side? Can your brain remember the times I got stressed and fearful of the pain when I had to put away a very huge grocery order, like I have done in the past?

 

[Cactusflower]

I"m beginning to see the shift in pain in real time. I woke up with pain on left side (as usual) then awhile later it shifted to the right side. I had a busy morning, putting away a lot of groceries. I sat down to relax and eat and boom, the pain shifted to my left side neck and hip. TWenty minutes later it's now back on my right side. I haven't gone into panic mode, like I would have. IS it trying to get my attention, by all this shifting from side to side? Can your brain remember the times I got stressed and fearful of the pain when I had to put away a very huge grocery order, like I have done in the past?

Ah, yes. This is a "favorite" symptom of mine too. Makes no sense does it? I use this as a reminder "TMS" and that really helps quell worry.

 

[Adam Coloretti (coach)]

I haven't gone into panic mode, like I would have. IS it trying to get my attention, by all this shifting from side to side? Can your brain remember the times I got stressed and fearful of the pain when I had to put away a very huge grocery order, like I have done in the past?

That's great! I would say too though that sometimes the search for specific answers can create its own sort of pressure, so I want you to take that off of yourself if you can - I am glad you asked though and absolutely it can remember! If it is trying to get your attention, I think you have the message loud and clear as you're already engaging in all of this work. The fear and attention is fuelling it also, so if you can reduce that and give yourself the self-compassion that you don't need to have it all figured out in that moment, I think that will go a long way to lowering the danger