Symtom Imperative/Extinction Burst???

Ashley A · Nov 17, 2021

fredb said: ↑

Hi Ashley. You may not remember me, but we had a few exchanges a while back now. I am glad you have posted your issues again on this forum, which like you I have been absent from for a while. It gives me the opportunity to make contact again. Our experieces are so alike. I fact identical! I did message you recently, to see how you were, but had no response.
I assumed you did not want to go over old and difficult experiences. I think it would be helpful for both of us to compare notes. It is always comforting to discuss this subject with s fellow struggling TMSers. Just to recap, I have also had this pain issue for three and s half years and mine is also in my upper back around my right scapula. Therefore I totally relate to you. If it helps, I can detail more by elaborating. It is pretty much constant with a few exceptional periods. It principally takes form of s deep dull ache on and around the inner edge of my right scapula, but more recently had spread on occasions to the left side and a bit lower on both sides. It can also feel very tight, tingly, sore after activity and sometimes a kind of stinging or may itch so it does change in its sensation. Maybe you can relate to this yourself?
Also I remember you had tried duloxetine and it helped a bit with the pain. I did too but weaned off, but now giving it another try at s higher dose , 60mg. It has not worked much so far though! Have you kept off the duloxetine? It is not a nice medication, but I had to try something! Also, I believe that TMS is really anxiety presenting with physical symptoms. Anxiety/ fear of the way you constantly feel and think about your symptoms is the driver of those symptoms. However, then the doubt kicks in again and again and the never ending cycle goes on and on. I know fore if I could accept the pain and other sensations and be indifferent, I would be cured, but in three and s half years I have not been able to achieve this? My anxiety physical symptoms are always highest when I first wake in the morning and I believe this is due to a normal peak in cortisol in the system. It would be good to pm with you to see how you are doing.
I have posted this hoping it gives you a bit of comfort knowing others have exactly the same symptoms as you, even though I have not yet found my way out of this complex problem. I hope you can resonate with my tale?
Best wishes Fred
Click to expand...

Hi Fred!

I’m so sorry that you too are still struggling. It can be quite a long road. I did really experience quite a lot of relief in 2019. Unfortunately 2020 brought a lot of trauma back into my life. Obviously the pandemic, which greatly effected my husband’s job but also in many areas of our lives with several medical emergencies and losing our home, just to name a few. I mention that not for pity but because I 100% believe that’s what pushed my progress back, otherwise I don’t believe that I’d be experiencing this flare-up right now. So I want you to still have hope - I made great strides in my healing journey and I believe that I still will, there’s just been a lot of set backs and stressful situations. That means that there is plenty of hope for you as well! It’s a tough journey but one that’s worth it.

I did end up tapering off of the Duloxetine and was off from it for 10 months. In that time I experienced some of my first pain free days ever! So that was a HUGE win for me. Due to the stressful events of 2020 I ended up going back on it in October of last year, however I am currently tapering off of it again (another contributing factor to this flare-up I believe.) It’s not a fun medication but one that I feel has been necessary as part of my journey.

I too believe that anxiety and fear and focus are what’s really behind all of this. I struggle with that a lot. It’s hands down the most difficult aspect of TMS for me.

Something I feel worth mentioning - I completely accept TMS as my diagnosis and I know that I have absolutely NO tissue damage. Have you been able to get there yet? If you can and can lose the fear and focus I think that’s the ticket! I’m half way there because I believe, but I struggle a TON with fear and focus and I think that’s what’s keeping me stuck.

I’d be happy to PM with you more whenever you’d like. Happy we’ve been able to reconnect, but wish it was under better circumstances for both of us.

Best wishes to you!

Ashley

Ashley A · Nov 18, 2021

Cactusflower said: ↑

Ashley, I have (mainly) right sided issues. It’s been 10 years on and off and has melded into a lot of whole body sensations. I totally get where you are coming from. Keeping up can be exhausting. The daily ups and downs.
My latest is challenging myself mentally and physically - so a lot of symptoms are coming up. My ‘regular’ ones plus a lot of old ones that I had not previously thought of as TMS or had forgotten about.
Do you note what your mindset is on the “better” days? Are better days only lack of pain days? Yesterday I had pain and symptoms - had to lay down a few times but man, I was in a super awesome mood! I was HAPPY! First time in a long time! What a great day - even better than the relatively pain free day I’d had a week before. I’m slowly beginning to “get” the mindset that many who have been symptom free for a long time say is the key to wellness.
Click to expand...

It can definitely be exhausting, that’s for sure! Like you said, just the daily ups and downs. Even if pains at a minimum it’s a lot. Mentally exhausting too.

I like your thought on mindset. I definitely need to look closer at mine. Yes and no that pain free days for me meant lack of pain days. It used to be that way - I set the bar so high and put so much pressure on myself. I’ve gotten a lot better recently, however I still really use the amount of pain as a gauge for a “good” day or “bad” day. I’m trying to cultivate more indifference and acceptance.

It’s like what came first, the chicken or the egg? Am I having a good day because I have little pain or do I have little pain because I am having a good day? It’s quite the conundrum. I think it’s a little bit of both.

Thank you for your insights, I will be taking these thoughts into my journaling. Are you familiar with Dan Buglio? He’s a TMS coach and has been dubbed the mindset guy. He’s pretty awesome. If you haven’t checked him out you should - he has a YouTube channel with lots of really great videos.

https://m.youtube.com/channel/UC_o_MGVac1_ijjIeig37zVQ

Best,

Ashley

fredb · Nov 18, 2021

Ashley A said: ↑

Hi Fred!

I’m so sorry that you too are still struggling. It can be quite a long road. I did really experience quite a lot of relief in 2019. Unfortunately 2020 brought a lot of trauma back into my life. Obviously the pandemic, which greatly effected my husband’s job but also in many areas of our lives with several medical emergencies and losing our home, just to name a few. I mention that not for pity but because I 100% believe that’s what pushed my progress back, otherwise I don’t believe that I’d be experiencing this flare-up right now. So I want you to still have hope - I made great strides in my healing journey and I believe that I still will, there’s just been a lot of set backs and stressful situations. That means that there is plenty of hope for you as well! It’s a tough journey but one that’s worth it.

I did end up tapering off of the Duloxetine and was off from it for 10 months. In that time I experienced some of my first pain free days ever! So that was a HUGE win for me. Due to the stressful events of 2020 I ended up going back on it in October of last year, however I am currently tapering off of it again (another contributing factor to this flare-up I believe.) It’s not a fun medication but one that I feel has been necessary as part of my journey.

I too believe that anxiety and fear and focus are what’s really behind all of this. I struggle with that a lot. It’s hands down the most difficult aspect of TMS for me.

Something I feel worth mentioning - I completely accept TMS as my diagnosis and I know that I have absolutely NO tissue damage. Have you been able to get there yet? If you can and can lose the fear and focus I think that’s the ticket! I’m half way there because I believe, but I struggle a TON with fear and focus and I think that’s what’s keeping me stuck.

I’d be happy to PM with you more whenever you’d like. Happy we’ve been able to reconnect, but wish it was under better circumstances for both of us.

Best wishes to you!

Ashley
Click to expand...

I hope so to Ashley. It is comforting to hear some of your successes, but not great to hear you still have troubles. Yes it is a long journey!
There is more I can say on this and I have a few questions for you if you don't mind.
I will PM you shortly if that is still ok.
Warm regards
Fred.

Bitzalel Brown · Nov 18, 2021

Duggit said: ↑

Ashley, I have read both of your posts today (this one and the one about the New York Times story regarding Sarno and modern pain science moving beyond him in some respects). That prompts me to write what follows.

I’ll begin with Sarno. In Healing Back Pain, he wrote (with emphasis by me):

“I remember a mother telling me proudly how she had stopped the temper tantrums in her little fifteen month old. The ‘wise’ family doctor suggested that she splash ice water in the child’s face when he started to have a tantrum. It worked beautifully—he never had another tantrum. At the ripe age of fifteen months he had learned the technique of repression. He had been programmed to repress anger because it produced very unpleasant consequences, and he would carry that dubious talent with him throughout his life. Now when confronted with the multitude of frustrating, annoying, sometimes enraging things that happen to people every day, this man automatically internalizes his natural anger, and when that anger collects and builds up, he will have TMS or some such physical reaction in response to it.”

In short, the man learned at a young age to associate experiencing anger with danger to his well-being, so he learned to repress it. And Sarno said he would carry that learning with him for the rest of his life.

You wrote: "the fact that your brain and nervous system can generate pain strictly off emotions is frightening for me. It feels as if I have no control over it." Anger at times toward family members, other people we are close to, people we work with, etc. is a normal human reaction. We have no control over the autonomic physiological response that leads to what we call anger, but we can learn the skill of being aware of the anger and deciding whether to express it and, if so, how to express it in a way that is not dangerous. Sarno said in a 1994 interview that the solution to TMS due to repressed anger was this: "Know about the anger, and know why it’s there. And if you do those two things, your pain will go away.” Once you know about the anger, i.e., quit repressing it, then you can figure out why it's there, and then you can cognitively assess how dangerous it really is. From a modern pain science perspective, repressed anger itself is not what causes chronic pain. Instead, the problem is the learned association of anger with danger to one's well-being.

This brings me to modern pain science. Alan Gordon’s Pain Recovery Program, which is available on this tms.wiki website, is based on that. I urge you to take a look at his Day 2 lesson. The essence of it is this: Pain = Danger. You brain will create pain when it concludes you are in danger. He explains this by noting two facts. Fact 1 is that if your brain determines you are in danger of tissue damage, it will create pain to protect you. He asks you to imagine you are out for a run and sprain your ankle. You now have tissue damage, but if you resume running, you are in danger of suffering more tissue damage. You brain protects you by creating pain that induces you to limp home so you do not cause more damage and then induces you to take it easy on your ankle for a while so you do not interrupt the healing process.

Fact 2 is that your brain is not perfect. The human central nervous system did not develop in a way that is able distinguish between danger to your physical well-being, e.g., tissue damage, and danger to your nonphysical well-being, e.g., very unpleasant emotional or psychological consequences. Your brain will create pain to protect you not only when the danger that you face is to your physical well-being but also when the danger is to your non-physical well-being. Your brain blunders in the latter case because its creation of pain does not protect your nonphysical well-being, but the problem is that the human brain in not perfect.

In recent years, Dr. Howard Schubiner and Alan Gordon have been emphasizing that danger in the form of fear of your chronic pain—e.g., you fear it will damage your social life or prevent you from holding a job and you fear you will never overcome it—can play a big role in perpetuating and increasing your pain. I think Sarno appreciated this way back in Healing Back Pain because two of his Twelve Daily Reminders were “Since my back is basically normal there is nothing to fear,” and “I will not be concerned or intimidated by the pain."

Recently Alan Gordon has modified his “Pain Recovery Program” a bit and calls his new approach “Pain Reprocessing Therapy.” His point is that to recover from chronic pain you need to change how you process your pain. Specifically, you need to (1) quit viewing your pain as an indication you have present or potential tissue damage and (2) quit fearing your pain. So how do you do that? His new book, titled The Way Out, is devoted to telling you how. I have a few quibbles about the book, mainly because of what is not in it. But I surmise from an interview of him I saw recently that the omissions were deliberate in order to make the book more user friendly. A clear strength of the book is that it is easy to read and user friendly.

The International Association for the Study of Pain, which has thousands of members worldwide, defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.” There is no denying that pain is an unpleasant sensory and emotional experience. But that does not necessarily mean it is associated with actual or potential tissue damage, and usually chronic pain is not so associated. To recover, you need to persuade yourself that your pain only resembles the unpleasant sensory and emotional experience associated with actual or potential tissue damage, and you need to develop hope and optimism that you will be able to overcome the pain. I detect a lack of optimism in your post above. I urge you to read The Way Out. I think it could help you reprocess your pain if you study it carefully, buy into it, and apply it to your day-to-day life.

The hardest part is buying into it. Alan Gordon and a former colleague at his Pain Psychology Center had tremendous success with pain reprocessing therapy as reported in the recently published Boulder Back Pain Study, which also involved neuroscientist Tor Wager who is quoted extensively in the New York Times article. Buying into pain reprocessing is one thing when you meet face-to-face multiple times with a pain therapy expert like Alan Gordon, whom you come to trust and who repeatedly tells you that your pain is not due to actual or potential tissue damage, gives you reasons why, and tells you that you will be able to fix your pain problem. Buying in is quite another thing when you have no personal interaction with an expert and you are only reading a book he wrote. But it can be done. I completely recovered from more than two decades of low back pain by reading, buying into, and applying Sarno's Healing Back Pain. That was shortly after the book was published in 1991. I have since gotten into modern pain science in a big way and have had complete success with other forms of chronic pain that I had previously thought impossible to get rid of, and I did this without having any interpersonal relationship with a professional. I did it by reading, digesting, and applying what I learned from scientific literature about pain biology.

Click to expand...

Duggit said: ↑

Ashley, I have read both of your posts today (this one and the one about the New York Times story regarding Sarno and modern pain science moving beyond him in some respects). That prompts me to write what follows.

I’ll begin with Sarno. In Healing Back Pain, he wrote (with emphasis by me):

“I remember a mother telling me proudly how she had stopped the temper tantrums in her little fifteen month old. The ‘wise’ family doctor suggested that she splash ice water in the child’s face when he started to have a tantrum. It worked beautifully—he never had another tantrum. At the ripe age of fifteen months he had learned the technique of repression. He had been programmed to repress anger because it produced very unpleasant consequences, and he would carry that dubious talent with him throughout his life. Now when confronted with the multitude of frustrating, annoying, sometimes enraging things that happen to people every day, this man automatically internalizes his natural anger, and when that anger collects and builds up, he will have TMS or some such physical reaction in response to it.”

In short, the man learned at a young age to associate experiencing anger with danger to his well-being, so he learned to repress it. And Sarno said he would carry that learning with him for the rest of his life.

You wrote: "the fact that your brain and nervous system can generate pain strictly off emotions is frightening for me. It feels as if I have no control over it." Anger at times toward family members, other people we are close to, people we work with, etc. is a normal human reaction. We have no control over the autonomic physiological response that leads to what we call anger, but we can learn the skill of being aware of the anger and deciding whether to express it and, if so, how to express it in a way that is not dangerous. Sarno said in a 1994 interview that the solution to TMS due to repressed anger was this: "Know about the anger, and know why it’s there. And if you do those two things, your pain will go away.” Once you know about the anger, i.e., quit repressing it, then you can figure out why it's there, and then you can cognitively assess how dangerous it really is. From a modern pain science perspective, repressed anger itself is not what causes chronic pain. Instead, the problem is the learned association of anger with danger to one's well-being.

This brings me to modern pain science. Alan Gordon’s Pain Recovery Program, which is available on this tms.wiki website, is based on that. I urge you to take a look at his Day 2 lesson. The essence of it is this: Pain = Danger. You brain will create pain when it concludes you are in danger. He explains this by noting two facts. Fact 1 is that if your brain determines you are in danger of tissue damage, it will create pain to protect you. He asks you to imagine you are out for a run and sprain your ankle. You now have tissue damage, but if you resume running, you are in danger of suffering more tissue damage. You brain protects you by creating pain that induces you to limp home so you do not cause more damage and then induces you to take it easy on your ankle for a while so you do not interrupt the healing process.

Fact 2 is that your brain is not perfect. The human central nervous system did not develop in a way that is able distinguish between danger to your physical well-being, e.g., tissue damage, and danger to your nonphysical well-being, e.g., very unpleasant emotional or psychological consequences. Your brain will create pain to protect you not only when the danger that you face is to your physical well-being but also when the danger is to your non-physical well-being. Your brain blunders in the latter case because its creation of pain does not protect your nonphysical well-being, but the problem is that the human brain in not perfect.

In recent years, Dr. Howard Schubiner and Alan Gordon have been emphasizing that danger in the form of fear of your chronic pain—e.g., you fear it will damage your social life or prevent you from holding a job and you fear you will never overcome it—can play a big role in perpetuating and increasing your pain. I think Sarno appreciated this way back in Healing Back Pain because two of his Twelve Daily Reminders were “Since my back is basically normal there is nothing to fear,” and “I will not be concerned or intimidated by the pain."

Recently Alan Gordon has modified his “Pain Recovery Program” a bit and calls his new approach “Pain Reprocessing Therapy.” His point is that to recover from chronic pain you need to change how you process your pain. Specifically, you need to (1) quit viewing your pain as an indication you have present or potential tissue damage and (2) quit fearing your pain. So how do you do that? His new book, titled The Way Out, is devoted to telling you how. I have a few quibbles about the book, mainly because of what is not in it. But I surmise from an interview of him I saw recently that the omissions were deliberate in order to make the book more user friendly. A clear strength of the book is that it is easy to read and user friendly.

The International Association for the Study of Pain, which has thousands of members worldwide, defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.” There is no denying that pain is an unpleasant sensory and emotional experience. But that does not necessarily mean it is associated with actual or potential tissue damage, and usually chronic pain is not so associated. To recover, you need to persuade yourself that your pain only resembles the unpleasant sensory and emotional experience associated with actual or potential tissue damage, and you need to develop hope and optimism that you will be able to overcome the pain. I detect a lack of optimism in your post above. I urge you to read The Way Out. I think it could help you reprocess your pain if you study it carefully, buy into it, and apply it to your day-to-day life.

The hardest part is buying into it. Alan Gordon and a former colleague at his Pain Psychology Center had tremendous success with pain reprocessing therapy as reported in the recently published Boulder Back Pain Study, which also involved neuroscientist Tor Wager who is quoted extensively in the New York Times article. Buying into pain reprocessing is one thing when you meet face-to-face multiple times with a pain therapy expert like Alan Gordon, whom you come to trust and who repeatedly tells you that your pain is not due to actual or potential tissue damage, gives you reasons why, and tells you that you will be able to fix your pain problem. Buying in is quite another thing when you have no personal interaction with an expert and you are only reading a book he wrote. But it can be done. I completely recovered from more than two decades of low back pain by reading, buying into, and applying Sarno's Healing Back Pain. That was shortly after the book was published in 1991. I have since gotten into modern pain science in a big way and have had complete success with other forms of chronic pain that I had previously thought impossible to get rid of, and I did this without having any interpersonal relationship with a professional. I did it by reading, digesting, and applying what I learned from scientific literature about pain biology.

Click to expand...

Dugit is right that the journey can be done on your own. Many of the people in this forum can attest to that but all humans can be blindsided by their own tunnel visioned view and have a mentor or guide can help you when thr going gets tough. Keep plowing foward our brain will ultimately "comply"

Ashley A · Dec 10, 2021

Bitzalel Brown said: ↑

Dugit is right that the journey can be done on your own. Many of the people in this forum can attest to that but all humans can be blindsided by their own tunnel visioned view and have a mentor or guide can help you when thr going gets tough. Keep plowing foward our brain will ultimately "comply"
Click to expand...

Thank you! I like how you write, “your brain will comply.” I’m going to turn that into an affirmation - my brain will comply. It’s just a matter of time with patience, determination, repetition, compassion, that my brain will get the message.

I’m thinking about getting a coach, as I struggle so much with confidence and compassion for myself.

Have you had any experience with a mentor or coach?

Thank you

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