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[eskimoeskimo]

Eskimo,

I'm so sorry you're struggling and that this is so hard. I know you've worked on this for a long time in different ways. I can understand fearing the fact that pain is psychological (that it doesn't make it less scary than due to your back), i've heard others say that too. But the difference is this- brains are constantly changing and you have the power to change your brain through neuroplasticity. It may feel anxiety provoking to think that your brain changed because of it, but our brains are changing constantly with every experience we have, that is just how they work. This is NOT a permanent change, I promise...TMS never is. I don't have any specific suggestions for you except to take a deep breath and get your mind off all this for a bit with some distraction, then come back to it when you are ready.

Thanks MindBodyPT, I do appreciate your response. I don't share your confidence in the powers of neuroplasticity, however. I know it's a trendy topic, but I think this as yet still very very little understood phenomenon has given so many new-agey people the green light to say all sorts of far-fetched things about the power to change the brain. Some things can't be un-wired, re-wired, or unlearned. Try unlearning the word "chair" for example. You can spend the rest of your life practicing unraveling that circuit and it's not going to happen. Chronic pain causes permanent changes to the brain, like the way chronic alcoholism changes the brain. Alcoholics who stop drinking still have those brain changes, with very little restoration. This stuff terrifies me. I know that you're very confident about the tms-diagnosis and prognosis, and your confidence is infectious but at this point I can't seem to get any kick from assurances. I have lost faith. I don't even believe people who say this has worked for them anymore ... so many people saying "I'm still working on it and getting better all the time" ... for 15 years ... and they're still on this forum every day. I'm sorry for bringing so much negativity into this. I'm down in the dumps.

 

[EileenS]

Thanks MindBodyPT, I do appreciate your response. I don't share your confidence in the powers of neuroplasticity, however. I know it's a trendy topic, but I think this as yet still very very little understood phenomenon has given so many new-agey people the green light to say all sorts of far-fetched things about the power to change the brain. Some things can't be un-wired, re-wired, or unlearned. Try unlearning the word "chair" for example. You can spend the rest of your life practicing unraveling that circuit and it's not going to happen. Chronic pain causes permanent changes to the brain, like the way chronic alcoholism changes the brain. Alcoholics who stop drinking still have those brain changes, with very little restoration. This stuff terrifies me. I know that you're very confident about the tms-diagnosis and prognosis, and your confidence is infectious but at this point I can't seem to get any kick from assurances. I have lost faith. I don't even believe people who say this has worked for them anymore ... so many people saying "I'm still working on it and getting better all the time" ... for 15 years ... and they're still on this forum every day. I'm sorry for bringing so much negativity into this. I'm down in the dumps.

Hi EskimoEskimo, Could you list what your issues are, what your diagnoses have been by professionals, and what you have tried (other than the tmswiki forum suggestions) please? It would be helpful to know so that I (and others) could see if there's something more to suggest.
The details I have been able to figure out are: You are a 28 year old male, you started experiencing your issues at age 16, and you have been trying to overcome them for 7 years. 16 +7 = 23.
I don't know what happened when you were 16. From my observations of my sons' friends, that is an especially difficult time. My sons are 22 and 24 now, but when they were 15 to 17, we had two boys often staying at our house because they were having problems with their fathers. Strangely enough, they were both named Alex.

 

[MindBodyPT]

Thanks MindBodyPT, I do appreciate your response. I don't share your confidence in the powers of neuroplasticity, however. I know it's a trendy topic, but I think this as yet still very very little understood phenomenon has given so many new-agey people the green light to say all sorts of far-fetched things about the power to change the brain. Some things can't be un-wired, re-wired, or unlearned. Try unlearning the word "chair" for example. You can spend the rest of your life practicing unraveling that circuit and it's not going to happen. Chronic pain causes permanent changes to the brain, like the way chronic alcoholism changes the brain. Alcoholics who stop drinking still have those brain changes, with very little restoration. This stuff terrifies me. I know that you're very confident about the tms-diagnosis and prognosis, and your confidence is infectious but at this point I can't seem to get any kick from assurances. I have lost faith. I don't even believe people who say this has worked for them anymore ... so many people saying "I'm still working on it and getting better all the time" ... for 15 years ... and they're still on this forum every day. I'm sorry for bringing so much negativity into this. I'm down in the dumps.

It’s ok, give yourself space and accept you’re in a difficult place right now. There is lots of legitimate research around neuroplasticity across disciplines, I promise it's not new-agey magic that says literally anything is possible, of course there are limits. But I don't think a discussion of the details of the science is going to help right now. I know from my own experience that trying to logic something out when you are feeling anxious or depressed often doesn't help at all...I've always gotten panicky on airplanes and even though I know it is perfectly safe, the only thing that helps is to accept that i'm going to feel anxious for a bit and ride it out.

I know it can be tough to be in the spot you're in now. I hope you have some people to reach out to, don't feel bad if TMS methods aren't what you need at the moment. Take care of yourself however is best for you and give yourself some much needed self-compassion.

 

[plum]

I have lost faith. I don't even believe people who say this has worked for them anymore ... so many people saying "I'm still working on it and getting better all the time" ... for 15 years ... and they're still on this forum every day.

That's both hurtful and dispiriting. The giving and receiving of support is both a part of healing and community. For me, the beauty and miracle of recovering may be slow but it is sure and like others before me, I made a vow to pass it forward. Negativity such as this is not only an emotional sinkhole, it demonstrates TMS as emotional quicksand.

 

[eskimoeskimo]

Hi EskimoEskimo, Could you list what your issues are, what your diagnoses have been by professionals, and what you have tried (other than the tmswiki forum suggestions) please? It would be helpful to know so that I (and others) could see if there's something more to suggest.
The details I have been able to figure out are: You are a 28 year old male, you started experiencing your issues at age 16, and you have been trying to overcome them for 7 years. 16 +7 = 23.
I don't know what happened when you were 16. From my observations of my sons' friends, that is an especially difficult time. My sons are 22 and 24 now, but when they were 15 to 17, we had two boys often staying at our house because they were having problems with their fathers. Strangely enough, they were both named Alex.

- pain started at 17, when moving to another country for college
- few years of the typical stuff ... chiropractors, physical therapists, massage, acupuncture, X-rays, MRIs, two steroid shots, etc
- read HBP around age 21, and have been thinking in terms of tms primarily or exclusively since then
- read the books a million times and saw 3 different tms therapists
- was primarily upper back pain age 17-23 or 24, primarily neck pain since then
- no definitive findings on MRIs, no consistency across doctors... one mentioned thoracic arthritis, one mentioned degenerative disc disease, probably a few others I'm forgetting, none ever seemed remotely clear / convincing
- pain often diminishes with vigorous exercise, increases with sitting and correlates strongly with stress
- constant worry about damage, posture, effect on overall health and cognition, and long term prospects
- has sometimes diminished if another health concern manages to steal my attention
- has a few times spontaneously "dissolved"

It’s ok, give yourself space and accept you’re in a difficult place right now. There is lots of legitimate research around neuroplasticity across disciplines, I promise it's not new-agey magic that says literally anything is possible, of course there are limits. But I don't think a discussion of the details of the science is going to help right now. I know from my own experience that trying to logic something out when you are feeling anxious or depressed often doesn't help at all...I've always gotten panicky on airplanes and even though I know it is perfectly safe, the only thing that helps is to accept that i'm going to feel anxious for a bit and ride it out.

I know it can be tough to be in the spot you're in now. I hope you have some people to reach out to, don't feel bad if TMS methods aren't what you need at the moment. Take care of yourself however is best for you and give yourself some much needed self-compassion.

Thank you MindBodyPT

That's both hurtful and dispiriting. The giving and receiving of support is both a part of healing and community. For me, the beauty and miracle of recovering may be slow but it is sure and like others before me, I made a vow to pass it forward. Negativity such as this is not only an emotional sinkhole, it demonstrates TMS as emotional quicksand.

I'm not sure I'm reading your post right ... I hope you don't think that I was speaking to you or about you specifically. I was not. I was just expressing a general frustration and chronic doubt ... the longer this goes on without any positive progress, the harder it is for me to believe in anything really. It just seems like I've been told so many times by so many people that this or that will help. Sometimes I do worry that I'm only here because it's the only place that anyone will tell me that it's possible for this to resolve, and I'm desperate to hear that message ... and I worry that I'm allowing myself to believe it because I want it to be true. I'm worried that I'm deluding myself. Could you explain what you meant by your message?

 

[EileenS]

pain started at 17, when moving to another country for college
- few years of the typical stuff ... chiropractors, physical therapists, massage, acupuncture, X-rays, MRIs, two steroid shots, etc
- read HBP around age 21, and have been thinking in terms of tms primarily or exclusively since then
- read the books a million times and saw 3 different tms therapists
- was primarily upper back pain age 17-23 or 24, primarily neck pain since then
- no definitive findings on MRIs, no consistency across doctors... one mentioned thoracic arthritis, one mentioned degenerative disc disease, probably a few others I'm forgetting, none ever seemed remotely clear / convincing
- pain often diminishes with vigorous exercise, increases with sitting and correlates strongly with stress
- constant worry about damage, posture, effect on overall health and cognition, and long term prospects
- has sometimes diminished if another health concern manages to steal my attention
- has a few times spontaneously "dissolved"

EskimoEskimo, thank you for your quick reply. I also thank you for and appreciate the candor of your previous comment that prompted me to ask my questions. If you hadn't replied at all I would have thought you just liked to complain, but you replied quickly with what I asked for. I now understand your complete frustration with all this. Sugar coating how you feel would not have given me an accurate picture of how you feel right now.
I can see why you have been focusing on tms. There really is nothing physically wrong with you! You just carry all your tension in your upper back and neck. Like me, it's your tension barometer.
I understand why this started when you went to college. The only time in my past I can say I had tms before four years ago was when I went to university, and I was a half day bus trip away from home; same country, same province.

Since you were so honest and candid I will be honest with you: I didn't get all better by religiously following Dr Sarno's work. Plus I have often felt like you do. I'm a skeptical person and there's some Sarno beliefs I just can't buy into. I come back to this site and give back to its community because it is what gave me the foundation to believe and work on my pain being mind body linked. Keep in mind Sarno wrote his books before much was known about neuroplasticity though. As MindBodyPT has said, there is lots of real scientific evidence available for how the mind influences pain and the body. Sometimes you need to weed through the 'NewAge' stuff to find them.

Here's my advice:
- take the advice that MindBodyPT has given you.
- find an exercise you like and focus on doing it on a regular basis. Start off baby steps if you feel you must, but do it regularly. There's nothing physically wrong with you, but if you aren't already exercising regularly you need to build up the body and mind muscles. This will give you something else to focus on and it is beneficial in so many respects. I liked to run and lift weights when I was your age, but pick what you enjoy.
- Read and listen to books and podcasts that have real scientific info on the mind body connection. I read Dr Norman Doidge's 2 books because a friend recovering from a concussion was given the books by her neurosurgeon. I got mine off the local library download. Listen to the 'Adam ruins everything' podcast that was recently suggested on this forum.
- Don't only read and listen to things about the mind body. Play video games, play D & D, hang out with friends, whatever it is you love doing. Stop trying so hard. Focus on something else. If the pain is going to stick around, start living your life with it there.
- If and when you want to see a therapist again, they don't have to be a tms certified one. Pick one that you feel 'gets' you. At this point, hearing the word tms might turn you off.

Sometimes I do worry that I'm only here because it's the only place that anyone will tell me that it's possible for this to resolve, and I'm desperate to hear that message

This isn't the only place, but it may be the best forum to get this from. Come to this forum for this reason. There's nothing wrong with that.
Virtual hug to you.

 

[iwire]

I don't know what to say. While I'm extremely appreciative of all of your support, I am not getting anywhere. I don't see any way forward that I haven't already tried countless times. I feel hopeless.

I have been having a tough time too eskimo-- and I have decided that some of the problem is in my expectations-- there is a conflict that exists with the idea of "not caring" about symptoms but the goal being "eliminating symptoms." I am not sure how I am going to do this yet....but I am shifting my expectations to be more concrete and life focused instead of symptom focused. For example-- today I expect to go to a friend's Birthday party and enjoy spending time with people I care about-- symptoms or no symptoms. I can tell myself that I won't enjoy myself if I am not free of symptoms----I can lie down and rest until my symptoms go away-- but that won't likely happen-- so I am just going to go. I can't seem to control what the symptoms do.....but i can control what i do. . ,
Please know you are not alone..... I hope you can find some joy in the day......symptoms or no symptoms.

 

[JanAtheCPA]

you have the power to change your brain

I completely agree with MBPT, @eskimoeskimo.

You have the power, but you have to be willing to fight for it. You also have to feel that you deserve to take it.

Your brain will do everything in its power to keep you from believing this. You can take control, you can be in charge, and you CAN change the negativity. I'm not saying this is easy - I personally know that it's not. What's easy is to let your primitive fearful brain continue to take all the power away from you, and continue to keep you in fear.

Based on my own experiences, I believe that ultimately, it's a choice.

And another thing that I suspect might be really hard for you, but which I would add to the great advice you've received, is that that it may be high time for you to get out of your head, and to try feeling instead of intellectualizing.

And... perhaps take a look at your tendency to "yes, but..." "Yes, but..." is just another tricksy brain game to keep us stuck.

 

[Ellen]

I think there is an element of hope and optimism that is required to be successful at TMS healing techniques--or anything for that matter. Without it our primitive brain and habitual patterns of negative thinking will sabotage our efforts. Unfortunately, I don't know how to instill hope and maintain it sufficiently to carry one through this work. Reading Success Stories seems to do it for many of us, as well keeping an evidence sheet of our "proof" that we are actually able to change our symptoms simply by changing our mind. But that is not sufficient for everyone, so there are people who aren't successful at treating their pain with TMS techniques. Hopefully this aspect will get more attention as the TMS field expands and grows. This has occurred in other psychological treatment areas, such as the development of Motivational Interviewing to address poor outcomes in the treatment of substance abuse, where it was recognized that the area of motivation to improve had to be addressed.

 

[eskimoeskimo]

EskimoEskimo, thank you for your quick reply. I also thank you for and appreciate the candor of your previous comment that prompted me to ask my questions. If you hadn't replied at all I would have thought you just liked to complain, but you replied quickly with what I asked for. I now understand your complete frustration with all this. Sugar coating how you feel would not have given me an accurate picture of how you feel right now.
I can see why you have been focusing on tms. There really is nothing physically wrong with you! You just carry all your tension in your upper back and neck. Like me, it's your tension barometer.
I understand why this started when you went to college. The only time in my past I can say I had tms before four years ago was when I went to university, and I was a half day bus trip away from home; same country, same province.

Since you were so honest and candid I will be honest with you: I didn't get all better by religiously following Dr Sarno's work. Plus I have often felt like you do. I'm a skeptical person and there's some Sarno beliefs I just can't buy into. I come back to this site and give back to its community because it is what gave me the foundation to believe and work on my pain being mind body linked. Keep in mind Sarno wrote his books before much was known about neuroplasticity though. As MindBodyPT has said, there is lots of real scientific evidence available for how the mind influences pain and the body. Sometimes you need to weed through the 'NewAge' stuff to find them.

Here's my advice:
- take the advice that MindBodyPT has given you.
- find an exercise you like and focus on doing it on a regular basis. Start off baby steps if you feel you must, but do it regularly. There's nothing physically wrong with you, but if you aren't already exercising regularly you need to build up the body and mind muscles. This will give you something else to focus on and it is beneficial in so many respects. I liked to run and lift weights when I was your age, but pick what you enjoy.
- Read and listen to books and podcasts that have real scientific info on the mind body connection. I read Dr Norman Doidge's 2 books because a friend recovering from a concussion was given the books by her neurosurgeon. I got mine off the local library download. Listen to the 'Adam ruins everything' podcast that was recently suggested on this forum.
- Don't only read and listen to things about the mind body. Play video games, play D & D, hang out with friends, whatever it is you love doing. Stop trying so hard. Focus on something else. If the pain is going to stick around, start living your life with it there.
- If and when you want to see a therapist again, they don't have to be a tms certified one. Pick one that you feel 'gets' you. At this point, hearing the word tms might turn you off.

This isn't the only place, but it may be the best forum to get this from. Come to this forum for this reason. There's nothing wrong with that.
Virtual hug to you.

Thank you EileenS. I really appreciate your candor, and your very practical advice. You post reminds me that I am trying way too hard and making this too complicated. I will try to follow your recommendations - but not too hard ! Best regards, Eskimo

 

[eskimoeskimo]

I have been having a tough time too eskimo-- and I have decided that some of the problem is in my expectations-- there is a conflict that exists with the idea of "not caring" about symptoms but the goal being "eliminating symptoms." I am not sure how I am going to do this yet....but I am shifting my expectations to be more concrete and life focused instead of symptom focused. For example-- today I expect to go to a friend's Birthday party and enjoy spending time with people I care about-- symptoms or no symptoms. I can tell myself that I won't enjoy myself if I am not free of symptoms----I can lie down and rest until my symptoms go away-- but that won't likely happen-- so I am just going to go. I can't seem to control what the symptoms do.....but i can control what i do. . ,
Please know you are not alone..... I hope you can find some joy in the day......symptoms or no symptoms.

I'm really glad you wrote in iwire. I know all too well the conflict you're referring to. And I can certainly look back and see that I've had numerous "successes" when I've forced myself to go out and do something, when my inclination had been to burrow in a hole and solve this physical pain first. This is something concrete we can do, and may be the best tactic when the less concrete stuff is seeming frustrating. Wishing you well, Eskimo