What else is there - Seriously

[miffybunny]

Perhaps you didn't notice, but this is my thread, which I started by asking if anybody has any ideas for something else to try. If the answer is 'no,' so be it. But the thread has been hijacked by people advocating the usual TMS stuff. My aim is not to spread negativity, it's to find help. There are plenty of other threads where you can explain your take on TMS, but I don't see how it applies here.

I did email admin multiple times asking for my account and all of my messages and threads to be deleted, but have received no response. I also turned off notifications but that didn't work, so I still get notified every time someone responds to one of my threads and, out of desperation, sometimes I check. It's frustrating to be told, in response to a plea for help and different ideas, that health and happiness are my birthright, that everyone is capable of healing, that I just need to discover my personal journey and live authentically. It seems to me like you're proselytizing rather than responding to the specific thread.

You are asking what else is there on the wiki which is dedicated to Dr. Sarno's approach. You could try drugs, surgery, chiropractors, pt, prayer, shamen in the jungle or join the circus.. The options are infinite. Or you could just stop trying period. If people respond to a thread it's not to hijack ( heaven forbid I inject any positivity or hope) or "proselytize". I was responding to Kozas who to commented on this thread. I tried numerous times to offer suggestions to you but there are others on this thread who my advice may resonate with. This is a public forum. If you believe this is a cult, then it's not the right place for you.

 

[eskimoeskimo]

You are asking what else is there on the wiki which is dedicated to Dr. Sarno's approach. You could try drugs, surgery, chiropractors, pt, prayer, shamen in the jungle or join the circus.. The options are infinite. Or you could just stop trying period. If people respond to a thread it's not to hijack or "proselytize". I tried numerous times to offer suggestions to you but there are others on this thread who my advice may resonate with. This is a public forum. If you believe this is a cult, then it's not the right place for you.

I was hoping for some sympathetic advice from people who are familiar with TMS and know what it's like to try for years without success. I can't stop you from responding, but I wish you'd respect me enough to keep responses relevant to the subject at hand. Yes, I do think the insistence from people to just keep trying TMS despite years without any success is a little cultish. But it wasn't the point of this thread to discuss that. It was to seek suggestions. Suggestions that are not just 'here is why I think TMS is the way.'

 

[miffybunny]

I was hoping for some sympathetic advice from people who are familiar with TMS and know what it's like to try for years without success. I can't stop you from responding, but I wish you'd respect me enough to keep responses relevant to the subject at hand. Yes, I do think the insistence from people to just keep trying TMS despite years without any success is a little cultish. But it wasn't the point of this thread to discuss that. It was to seek suggestions. Suggestions that are not just 'here is why I think TMS is the way.'

I suggest you contact Dan Buglio. He suffered for 13 years and has a channel on YT as well as a FB group. He's an amazing coach or you could find a therapist who may have a different approach to offer.

 

[eskimoeskimo]

I suggest you contact Dan Buglio. He suffered for 13 years and has a channel on YT as well as a FB group. He's an amazing coach or you could find a therapist who may have a different approach to offer.

Thanks. I have already worked with Dan Buglio for 6 months, and have watched all of his videos. But I do appreciate the suggestion.

 

[Balsa11]

Maybe try the following checklist: Thoughts, Nerves, Self Care
You can also shoot an email to any of the therapists or mentors you've worked with that you click with. Build and strengthen positive relationships with others and with yourself. Self love is a difficult thing to intellectualize but it can be felt. I've had this experience when thinking about the parts of my body that are working well (for example: my lungs are breathing, my heart is beating perfectly wall, I can walk/bend/jump/sit/balance on my tippy toes etc.) Body gratitude is difficult during a bad flareup but doable in the middle of a ho-hum day.

 

[RogueWave]

Hi @eskimoeskimo, I haven't posted here in awhile (I'm a doctor), but I have been receiving a lot of DMs here lately, so I happened to check over the threads, found yours, and felt inclined to respond.

I know you listed what you tried, but can you please give a history of your pain? I'm just curious about a few details before I provide any advice.

@miffybunny makes a good point about 'just living your life', but in my personal experience it took a lot of study (and talking with Dr. Sarno directly via email back in the day!) before I could make that leap. The advice is sound, but I understand the frustration in hearing it, considering how hard you've tried at all of this. Congrats on that, BTW, you obviously have a strong will. That will help you fix this.

Also, besides your pain history, could you please tell me exactly what TMS is, in YOUR words. And please, to anyone else reading this, don't try and correct eskimo. In helping people heal this, I've found it's usually best to start with what they understand TMS to be.

As I've said before, I believe Dr. Sarno was a genius, but IMO his theory was incomplete, and that is why not everyone recovers using his methods. If it were 'law', the effect rate would be 100% or very close to it.

So make it as long or as short as you'd like, but please let me know your pain history, and your understanding of TMS before I recommend anything else.

 

[miffybunny]

Hi @RogueWave ,

I'm not sure if you have had a chance to read through all the comments and pages of this thread, but I share your views and have stated that in different ways throughout. Just to clarify (lest all my efforts on the wiki for the past 6 years on the forum and in private, gets reduced to a tidbit or "soundbite" lol), a treatment bridge (from understanding to implementing), is required for the largest group of TMS sufferers that fall into the middle of the spectrum. On one end there are those who read a book and are fine the next day, and on the opposite end of the spectrum, more intensive, long term psychotherapy is required. I just want to ensure that one phrase is not taken out of context of an entire thread and communication history.

 

[RogueWave]

Hi @RogueWave ,

I'm not sure if you have had a chance to read through all the comments and pages of this thread, but I share your views and have stated that in different ways throughout. Just to clarify (lest all my efforts on the wiki for the past 6 years on the forum and in private, gets reduced to a tidbit or "soundbite" lol), a treatment bridge (from understanding to implementing), is required for the largest group of TMS sufferers that fall into the middle of the spectrum. On one end there are those who read a book and are fine the next day, and on the opposite end of the spectrum, more intensive, long term psychotherapy is required. I just want to ensure that one phrase is not taken out of context of an entire thread and communication history.

Absolutely, and thank you for the clarification!

My comment was meant more to validate Eskimo’s frustration, because I am sure there are more people out there, whether part of this forum, lurking, or just those who have read Dr. Sarno‘s books, who feel the same way.

There are several reasons for this, and unfortunately years ago follow up studies for a majority of TMS patients who eventually ended up in psychotherapy showed that they had very little benefit from it, i.e, their pains continued.

Part of the reason for this is Dr. Sarno didn’t give a very clear path for recovery, other than the basic ‘read/study, refute the structural diagnosis, and live live normally.’ Rather nebulous, to say the least, especially for those whom this approach doesn’t work.

Another part of this is because after curing myself of TMS twice, and talking with hundreds of patients over the years, I do believe Dr. Sarno’s theory is incomplete. Again, if it were 100% correct, there would be a 100% cure rate, or close to it. I believe the ‘distraction’ idea to be incorrect, or at least not the main reason for TMS.

How is it that reading/studying for TMS cures some people? Physiologically, what’s the mechanism?

I’m hoping to move the discussion in that direction, and hopefully help more people here in the process.

 

[miffybunny]

Hi again @RogueWave ,

One of the reasons traditional psychotherapy (like CBT, ACT, mindfulness etc) has not been proven effective with chronic pain sufferers (PPD, TMS, MBS) is because the premise is one of a "coping model", not a "curing model". If you refer to the work of Dr. Schubiner, Alan Gordon, Dr. Allan Abbass and many others listed here on the Wiki, they do address more effective strategies to reverse the pain mechanism. They have also offered a great deal more insight into the reasons behind physical symptoms, that extend far beyond the distraction theory. Much research has emerged just in the past few years and the above mentioned, as well as many others (Lorimer Mosley for ex) have conducted studies on the efficacy of other approaches and ways to bridge that gap between Sarno's theories and implementation . I'll try to link one such study here:


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5680092/ (Emotional awareness and expression therapy, cognitive-behavioral therapy, and education for fibromyalgia: a cluster-randomized controlled trial)

Another reason some patients do not respond to therapy for TMS is because they have co morbid mental illnesses or other underlying issues that need to be addressed first. TMS is a symptom and some patients are resistant to giving up that defense mechanism that the TMS has become. In terms of that group, more intensive therapy is needed (ISTDP, psychiatric meds etc. etc). As I mentioned earlier, the vast majority falls somewhere in between the "knowledge/book cure" and those that require more intensive intervention. For that middle group, there are many programs and TMS coaches and therapists who can fill that gap, even temporarily. I personally experienced the book cure with my first go around with TMS, but it did come back and I did need therapy, because I had not yet addressed the cause (thought patterns, repressed emotions, daily stressors etc. etc.)

 

[RogueWave]

Hi again @RogueWave ,

One of the reasons traditional psychotherapy (like CBT, ACT, mindfulness etc) has not been proven effective with chronic pain sufferers (PPD, TMS, MBS) is because the premise is one of a "coping model", not a "curing model". If you refer to the work of Dr. Schubiner, Alan Gordon, Dr. Allan Abbass and many others listed here on the Wiki, they do address more effective strategies to reverse the pain mechanism. They have also offered a great deal more insight into the reasons behind physical symptoms, that extend far beyond the distraction theory. Much research has emerged just in the past few years and the above mentioned, as well as many others (Lorimer Mosley for ex) have conducted studies on the efficacy of other approaches and ways to bridge that gap between Sarno's theories and implementation . I'll try to link one such study here:


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5680092/ (Emotional awareness and expression therapy, cognitive-behavioral therapy, and education for fibromyalgia: a cluster-randomized controlled trial)

Another reason some patients do not respond to therapy for TMS is because they have co morbid mental illnesses or other underlying issues that need to be addressed first. TMS is a symptom and some patients are resistant to giving up that defense mechanism that the TMS has become. In terms of that group, more intensive therapy is needed (ISTDP, psychiatric meds etc. etc). As I mentioned earlier, the vast majority falls somewhere in between the "knowledge/book cure" and those that require more intensive intervention. For that middle group, there are many programs and TMS coaches and therapists who can fill that gap, even temporarily. I personally experienced the book cure with my first go around with TMS, but it did come back and I did need therapy, because I had not yet addressed the cause (thought patterns, repressed emotions, daily stressors etc. etc.)

I appreciate the detailed response! I’m familiar with a few of those doctors, but some of that is new, so I’ll be checking that info out soon.

So I’m curious of your process the second time around. I’m mainly asking for people reading this thread, because I’ve found hearing success stories does seem to help some people heal.

How long after did your symptoms reoccur? At what point did you know reading wasn’t going to fix it the second time, and how did specifically go about healing it then?

 

[miffybunny]

Hi @RogueWave,


I linked my story below, but I'll insert my "book cure" prequel as well. Before my TMS saga with CRPS recounted in the link, I had a bizarre injury of the pelvis (this was related to an old bladder surgery from a traumatic childbirth but too long of a story). After that injury healed (as all injuries do), it morphed into chronic pain in my legs which went on for a year and a half and became debilitating (I was taking up to 8 Ultrams a day, numerous doctors and PT's). No one could give me an accurate diagnosis. One day somewhere in the recesses of my mind, the memory of Howard Stern ( I listened to his show every morning from 1982 into the 2000's) and his chapter in one of his books called "King of Mental Illness" popped into my head. I vaguely remembered him discussing a doctor but I couldn't for the life of me remember the name. I ordered Howard's book and looked at the dedication which was to Dr. Sarno. I immediately ordered "Healing Back Pain" and the day I read it (devoured it) was the day that changed my life. It made so much sense to me. It was revelation. Within 4 months I was totally better and even taking yoga classes. Unfortunately 5 months after I was completely back to normal, I noticed my sandal was tight and my big toe looked swollen. That is when TMS reared it's head again but I didn't know it yet. The reason being, I had not made certain life changes. I was still bombarded with daily stressors that would not allow my brain to get out of the fight or flight response. I go further into detail in my success story. It was a long, arduous road. There was almost no info. on CRPS in the TMS literature at the time, so after months of doubt ( I had swelling, color changes, temp changes etc), I called Dr. Schubiner and he was kind enough to return my call. He confirmed that CRPS was still stemming from the brain. That's when I knew I would get better. I had done it before and I would do it again. This go around was more work and a longer process. I was even going through a 2 year long divorce, but it's the journey, not the destination. That was my attitude. I struggled a lot with vanity issues as well, which delayed my progress (another source of preoccupation for my brain to latch on to) but at least I didn't put a time table on myself. Hopefully this can help others reading on this thread!


https://rsds.org/i-recovered-and-so-can-you/?fbclid=IwAR3sf6gCV6Vqu8Ac13ju5cVZP123pj2ZnLWfXvvv-I1uYIn9aUyC9frrjP8 (I Recovered and So Can You! - RSDSA)

 

[BloodMoon]

I’m mainly asking for people reading this thread, because I’ve found hearing success stories does seem to help some people heal.

I've stopped reading them on here though because so many report their success stories and then you see them pop up again on the forums with their symptoms having returned or with new symptoms. It reminds me of those product reviews on Amazon - where people write how wonderful an item is when they've only just received it, before they've really had a chance to test out the washing machine (or whatever the item might be) for its durability etc.

I believe the ‘distraction’ idea to be incorrect, or at least not the main reason for TMS.

What do you believe is the main reason - being in the fight or flight loop? (I've been waiting for eskimoeskimo to reply to you, as the suspense is killing me re the hope that you might have something new to offer/suggest! )

I've had a look at your past posts (posted last year) which were thoughtful and encouraging, but didn't seem to offer anything new for we TMS strugglers (the main point you made was that we're stuck in a fight or flight loop, addicted to the hormones etc., that being in that state produces and we need to try to get out of that loop/addiction by means of breathing exercises, EFT, meditation, listening to calming music and such like...which so many of us have already pursued to no avail). Your recommendation of the book 'Mental Health Through Will Training' by Dr Abraham Low, looks very interesting though, if the preview on Amazon is anything to go by.

 

[Marls]

Me too! I’m waiting on Eskimoeskimo’s reply as well, and the follow up.

 

[miffybunny]

Hi @BloodMoon ,

Some thoughts on Success Stories: I know for myself and many others who have mentioned it, we waited a very long time to post our stories. I was almost afraid to jinx myself and I wanted to feel absolutely better before I could declare it. It is true that as TMS'ers we do have reoccurrences or weird symptoms that pop up seemingly out of nowhere, but (and this is a big BUT!), when it happens, we are not afraid of it and it passes quickly because we know how to respond. It no longer haas control over our thoughts or lives. When people have more full fledged go arounds of TMS, it's because they never addressed the real root causes or their day to lives never changed. Another thing about Success Stories for me, was that they gave me hope and the knowing that if others could get better, so could I. I would have literally killed to see a CRPS success story. In the beginning, I only knew of one anecdote with very little info. but that gave me life tbh.

I also wanted to address the reasons for symptoms based on my understanding and experience. There are several: 1.). Emotions (fear, sadness, anger, guilt etc) that are somatized. The body is a messenger of those feelings that need to be felt. 2.). Stressful Situations (daily stressors, relationships, jobs, family etc) 3.). Triggers: Conditioned responses to innocuous stimuli....(weather, activities, positions, places, foods etc etc etc) and 4.). Learned Pathways: just the habit of the brain. Our brains will test us and subvert us many times over because it clings to habit.

Hope that helps!

 

[tgirl]

Hi @BloodMoon ,

Some thoughts on Success Stories: I know for myself and many others who have mentioned it, we waited a very long time to post our stories. I was almost afraid to jinx myself and I wanted to feel absolutely better before I could declare it. It is true that as TMS'ers we do have reoccurrences or weird symptoms that pop up seemingly out of nowhere, but (and this is a big BUT!), when it happens, we are not afraid of it and it passes quickly because we know how to respond. It no longer haas control over our thoughts or lives. When people have more full fledged go arounds of TMS, it's because they never addressed the real root causes or their day to lives never changed. Another thing about Success Stories for me, was that they gave me hope and the knowing that if others could get better, so could I. I would have literally killed to see a CRPS success story. In the beginning, I only knew of one anecdote with very little info. but that gave me life tbh.

I also wanted to address the reasons for symptoms based on my understanding and experience. There are several: 1.). Emotions (fear, sadness, anger, guilt etc) that are somatized. The body is a messenger of those feelings that need to be felt. 2.). Stressful Situations (daily stressors, relationships, jobs, family etc) 3.). Triggers: Conditioned responses to innocuous stimuli....(weather, activities, positions, places, foods etc etc etc) and 4.). Learned Pathways: just the habit of the brain. Our brains will test us and subvert us many times over because it clings to habit.

Hope that helps!

Miffybunny, that was a great succinct response. I think for me my brain has most likely gotten into some loop, a learned response, and I’m having a hell of a time breaking that.

 

[miffybunny]

Hi @tgirl ,
Yes it's totally normal and human because that is the way our brains are designed. The primitive part is very habitual and seeks patterns. We need to use our conscious mind (the prefrontal cortex) to instruct the brain . The input we give is the outcome we get. That's the beauty of neuroplasticity!

 

[birdsetfree]

Just to add more perspective to this thread. One of hope. I recovered in 2015 from 15 years of severe chronic back pain using tms methods. Every year that goes by I return to a more normal life with less and less pain and symptoms and a deeper, healthier relationship with myself and those around me. Relapses are now very infrequent and are more of a gentle reminder to slow down and look within. To breathe. To look outward with gratitude. I am so grateful to this community and Dr Sarno. Thanks also to Miffybunny for your dedication to helping others through this somewhat daunting journey.

 

[BloodMoon]

Some thoughts on Success Stories: I know for myself and many others who have mentioned it, we waited a very long time to post our stories. I was almost afraid to jinx myself and I wanted to feel absolutely better before I could declare it. It is true that as TMS'ers we do have reoccurrences or weird symptoms that pop up seemingly out of nowhere, but (and this is a big BUT!), when it happens, we are not afraid of it and it passes quickly because we know how to respond. It no longer haas control over our thoughts or lives. When people have more full fledged go arounds of TMS, it's because they never addressed the real root causes or their day to lives never changed. Another thing about Success Stories for me, was that they gave me hope and the knowing that if others could get better, so could I. I would have literally killed to see a CRPS success story. In the beginning, I only knew of one anecdote with very little info. but that gave me life tbh.

I don't doubt that there are a number of success stories on the success stories forum that weren't posted until the person was sure that they were recovered with only passing minor relapses, but there are plenty of others on there who speak too soon and are in the suffering "full fledged go arounds of TMS" category, so I prefer (a personal choice) not to read any of the success stories as when you read them, you don't necessarily know whether they are in the former or latter category...you often don't know until later on when you see those people pop up on the forum describing their relapses and for me personally that is very disheartening to hear. And tbh, when you've been using TMS methods for a number of years like I have, reading the success stories of those who have permanently recovered, can also be depressing and disheartening because one is left questioning why they recovered but you didn't when you too have been doing exactly as advised. RogueWave wrote: 'I’ve found hearing success stories does seem to help some people heal'...I would add emphasis on the 'some' - although at first inspired with reading success stories, it turns out that I'm just not one of them. I'm not trying to discourage others from reading success stories, but it might help some to know that, if they don't end up being inspired by them and/or helped to heal by them for the reasons I've described, they are not alone.

I also wanted to address the reasons for symptoms based on my understanding and experience. There are several: 1.). Emotions (fear, sadness, anger, guilt etc) that are somatized. The body is a messenger of those feelings that need to be felt. 2.). Stressful Situations (daily stressors, relationships, jobs, family etc) 3.). Triggers: Conditioned responses to innocuous stimuli....(weather, activities, positions, places, foods etc etc etc) and 4.). Learned Pathways: just the habit of the brain. Our brains will test us and subvert us many times over because it clings to habit.

Hope that helps!

I already understood the reasons you've listed as I've been following your advice for quite some time now - however, sadly for me, to no avail. Don't get me wrong, I think you're marvellously fantastic and kind, giving up your time to help people on the forums - and I'm sure you've helped and encouraged many people - but what worked for you and them, hasn't worked for me. I don't think I'm special, but I do think I need a fresh approach or some new insight - something that will 'click' with me personally. I continue to live in hope.

 

[miffybunny]

Hi @BloodMoon ,

Thank you for your kind words and I'll try to do justice to your comments and questions with my response, but hopefully others can add their insights. I don't think there is anything new under the sun, as they say, only different ways of saying the same thing and all one needs, is for just one to resonate. I know that my descriptions, explanations and advice may seem simplistic, but the truth is, recovery from TMS is not a complex or mystical process. One of the many reasons people struggle is because they intellectualize, search, analyze and approach the journey as a linear, logical, concrete exercise. It's anything but. It's not a journey of intellect or woo woo, it's a journey of the heart...and a deeply personal one that simply can't be compared to any others' journey. The reason meditation, breathing exercises, journaling and other mindful tools are employed (none of which appealed to me btw lol!) is because they take a person out of their head and bring them into the heart space. I had to do this simply through acceptance (of what is, myself, and things I couldn't change). I had to let go. I know these words can be quite annoying to those who want the "how", scientific explanations, graphs, delineated steps, and proof, but unfortunately the journey is an emotional/spiritual one. Things like love, connection, motivation, meaning, and joy can't be measured and there is no roadmap.

For what it's worth, I was a super resistant, negative person before my journey (which is ongoing and never ending!) so I agree with you that you aren't "different" in the sense that you can't get better. As Norman Cousins wrote, "Every patient carries his own doctor inside them". No one is excluded from that truth. Hopefully others can add to this thread in a way that may resonate for some better. This thread is valuable because it speaks to the core of "healing".

 

[tgirl]

Miffybunny, I’m wondering if you developed anxiety when you had your symptoms. I think I became so upset and obsessed about my sensations that I developed really bad anxiety in addition to the symptoms. It was probably underlying for years, but man it’s awful and it’s difficult to get rid of. It all becomes so much. People probably heal differently, but I’m not sure how I’m supposed to do it yet.