A year of wavering between TMS and physical! No improvement. Losing hope.

Kerrj74

Kerrj74

Well known member
Hi fellow chronic pain sufferers. I am 44 and suffering for the past year with 24/7 low back pain and now a touch of slight left leg sciatica (never had that before. Usually just a constant nagging ache in both sides of my lower back and waist area). Kills me to sit and stand for any amount of time. Only relief is laying down. I also had the same problem 24 years ago and had spinal fusion and was great for the next 20 years. I believe the surgery was a placebo though because a few times over the years I have had the same pain in the same location and it went away when I applied TMS theory! I have tried EVERY device, medication, and procedure known to mankind. I have been to multiple doctors of every discipline including U Penn Medicine, multiple acupuncturists, multiple physical therapists, multiple chiropractors, etc. I have read EVERY book and audiobook on TMS, chronic pain, neuroplasticity 5 times each. I committed myself for 5 months to believing in the TMS/MBS diagnosis because I truly believed it made 100% sense. Especially since I have suffered from so many unexplained chronic pains that would disappear for another pain to take its place! I also have chronic severe anxiety and have the TMS personality traits (worrier, people pleaser, overachiever, perfectionist). I saw zero improvement when committed fully to the TMS diagnosis, and so I waver back and forth now between physical and emotional as the cause. Every doctor has a different diagnosis. They all are 100% confident that their diagnosis is my problem from bulging discs, facet joint arthritis, soft tissue/muscle strain, pinched nerve, annular disc tear, weak and unbalanced muscle strength in core and hips, etc. It is amazing how every so called expert can be so different in their professional opinion, which is why I never have any confidence when they want me to get epidural injection, nerve ablation, more fusions! I have been to 3 pain/spine specialists who I have just wanted to give me nerve blocks and nerve ablations and epidural injections without barely even looking at my MRIs or examining me! Then a chiropractor said my discs are bulging and that is the cause- while 2 orthopedic surgeons and physiatrists said my discs are actually not that bad for 44. I feel like now the problem is just neurological in that my brain has strengthened pain pathways that keep telling me something is wrong when there is nothing physically hurt. I don't know how to undo that. It is impossible to ignore or get past when you hurt as soon as you get out of bed in the morning. I have tried medication, yoga, hypnosis, and lots of counseling/therapy. NOTHING ever helps! I am really losing hope. If I could just see a slight improvement then I could build some momentum and may be reverse the pattern of pain. One thing to note that I can't figure out is that in the spring I just sucked it up and spent a weekend doing yard work. I felt AMAZING for 5 days and had ZERO pain! I was convinced I was all better. Then it came back and hasn't stopped. I have tried to recreate that by exercising and doing physical work and I go to the gym, but never to find that relief again. What does that mean? If something were physically wrong, how could I have felt 100% better for 5 days! But why can't I get there again? Makes me think it must be psychological, but I can't figure out how to undo it. I struggle with the TMS diagnosis. I believe it makes complete sense, but then the analytical engineer in me overthinks things and applies logic and questions everything. I feel like I would probably have improved if I wasn't so analytical. Just looking for some suggestions and insights from anyone with similar experiences, thoughts, and results.

You can check out my detailed back pain story here (although it has a lot more that I could add to that since I wrote it 8 months ago!): http://www.tmswiki.org/forum/threads/25-years-chronic-pain-anxiety-fusion-tms-low-back-pain-again-after-20-years-pain-free.15862/ (***25 Years Chronic pain, anxiety, fusion, TMS. Low back pain again after 20 years pain-free!)
 
Hi Kerrj74,
Sorry to hear you are unable to find lasting relief. That sucks.
I am an engineer and a perfectionist, although I am getting better at it. When I skimmed thru your detailed story, the thing I am missing is if you ever talked to a TMS doctor or any person specialized in 'mind issues'?? If not, maybe you should. If you did, what did you gain from it?
The thing that stands out in your story is that you actually experienced a five day relief of pain. The thing with yard work is that it can be extremely relaxing and meditative, so I see logic in it. I love to ponder around in my garden when spring arrives and it usually helps me with any symptoms I might have had during winter. Maybe your brain decided that yard work is dangerous, because when your symptoms are gone, repressed emotions might start to surface. It can't allow that to happen.
 
I had the similar experience of being pain free for about a week after my new lawn was seeded and suddenly there was no rain for nine days. I had to move hose and sprinklers constantly for several days. I thought my pain would increase but at some point I noticed the only pain I felt was normal workout-type pain, not the chronic nerve and tissue pain that are some of my TMS symptoms. I thought "at last, I've gotten rid of it" but it returned and gradually I was back where I started. Clearly, I have more work to do.

Like you, I have been to many different doctors, chiropractors, acupuncturists, etc.

Please don't give up. I know how hard it is when you feel that you will never get better. For me, I think I just need to do some deeper psychological work. My continuing pain doesn't make sense any other way.

I hope you find some relief.
 
Hello Kerrj74,

I hope that you don't give up on the TMS path. The "experts," focusing on physical reasons for pain will have an endless parade of reasons and treatments for your pain. They are doing the best they can, within their training and knowledge. As Gigalos suggests, it would be great if you could see a TMS physician in person for a diagnosis. And/or get support with a therapist or coach if you can do that. Just know that for most folks, doubts remain, and the time required for the work to take effect is longer than we want! Sending you support!

Andy
 
Kerrj74
Don't give up! Maybe it is time to stop seeking the advice of medical experts and let your engineer's brain relax from the analytical journey it has taken your on these many years. You had the astounding and affirming results of NO PAIN after five days of working in your garden. This, in and of itself, seems the key to your answer as to whether or not you are suffering from TMS. I suspect you suspect that this is yes, but sometimes it is so difficult to believe. Cricket 313 suggests deeper psychological insight/work. Could this be something you should look into?
Good luck on your path to unlocking the TMS hold.
Kindly
Lainey
 
Another thing I might add, is what I’m dealing with now which is, what does not want to be felt? Is there a big elephant in the room, or a mouse, as Time2be would say, that is just too persistent? Really dig into your stresses, and what is bothering you now, being honest with yourself. I’ve come to the conclusion, it’s consistency, persistence, and patience. I’ve been dealing with this TMS crap for 20 years, and have been doing the TMS work for five years. There are times when I rarely have pain and I can move about doing whatever I want, and there are other days where I am totally incapacitated. It’s really hard to practice outcome independence, but I’m doing my best. Little goalscan be really helpful, as well as progress reports.

He was one clue that really helped me, and may help you. When I went to my company Christmas party, I danced for a half an hour solid, with no pain. So, if it was something structural, I would’ve made it much worse. So, how come I had no pain when I was dancing, but a ton of pain when I’m working on the computer? ;) Some food for thought.
 
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Kerrj74 said:
Hi fellow chronic pain sufferers. I am 44 and suffering for the past year with 24/7 low back pain and now a touch of slight left leg sciatica (never had that before. Usually just a constant nagging ache in both sides of my lower back and waist area). Kills me to sit and stand for any amount of time. Only relief is laying down. I also had the same problem 24 years ago and had spinal fusion and was great for the next 20 years. I believe the surgery was a placebo though because a few times over the years I have had the same pain in the same location and it went away when I applied TMS theory! I have tried EVERY device, medication, and procedure known to mankind. I have been to multiple doctors of every discipline including U Penn Medicine, multiple acupuncturists, multiple physical therapists, multiple chiropractors, etc. I have read EVERY book and audiobook on TMS, chronic pain, neuroplasticity 5 times each. I committed myself for 5 months to believing in the TMS/MBS diagnosis because I truly believed it made 100% sense. Especially since I have suffered from so many unexplained chronic pains that would disappear for another pain to take its place! I also have chronic severe anxiety and have the TMS personality traits (worrier, people pleaser, overachiever, perfectionist). I saw zero improvement when committed fully to the TMS diagnosis, and so I waver back and forth now between physical and emotional as the cause. Every doctor has a different diagnosis. They all are 100% confident that their diagnosis is my problem from bulging discs, facet joint arthritis, soft tissue/muscle strain, pinched nerve, annular disc tear, weak and unbalanced muscle strength in core and hips, etc. It is amazing how every so called expert can be so different in their professional opinion, which is why I never have any confidence when they want me to get epidural injection, nerve ablation, more fusions! I have been to 3 pain/spine specialists who I have just wanted to give me nerve blocks and nerve ablations and epidural injections without barely even looking at my MRIs or examining me! Then a chiropractor said my discs are bulging and that is the cause- while 2 orthopedic surgeons and physiatrists said my discs are actually not that bad for 44. I feel like now the problem is just neurological in that my brain has strengthened pain pathways that keep telling me something is wrong when there is nothing physically hurt. I don't know how to undo that. It is impossible to ignore or get past when you hurt as soon as you get out of bed in the morning. I have tried medication, yoga, hypnosis, and lots of counseling/therapy. NOTHING ever helps! I am really losing hope. If I could just see a slight improvement then I could build some momentum and may be reverse the pattern of pain. One thing to note that I can't figure out is that in the spring I just sucked it up and spent a weekend doing yard work. I felt AMAZING for 5 days and had ZERO pain! I was convinced I was all better. Then it came back and hasn't stopped. I have tried to recreate that by exercising and doing physical work and I go to the gym, but never to find that relief again. What does that mean? If something were physically wrong, how could I have felt 100% better for 5 days! But why can't I get there again? Makes me think it must be psychological, but I can't figure out how to undo it. I struggle with the TMS diagnosis. I believe it makes complete sense, but then the analytical engineer in me overthinks things and applies logic and questions everything. I feel like I would probably have improved if I wasn't so analytical. Just looking for some suggestions and insights from anyone with similar experiences, thoughts, and results.

You can check out my detailed back pain story here (although it has a lot more that I could add to that since I wrote it 8 months ago!): http://www.tmswiki.org/forum/threads/25-years-chronic-pain-anxiety-fusion-tms-low-back-pain-again-after-20-years-pain-free.15862/ (***25 Years Chronic pain, anxiety, fusion, TMS. Low back pain again after 20 years pain-free!)
Click to expand...
A 20 year old that got talked into a spinal fusion ? TMS makes sense to all of us, but from what I've read your heart (subconscious) has to take hold. Every doctor has a diagnosis because that is how they get paid. If you looked at a 85 years olds MRI you would see everything you've mentioned...like a train off the tracks and these elderly folks have NO PAIN. Many who had some kind of surgery and treatment. Read Claire Weekes or listen to her on youtube (she died in 1990) and she makes so much sense to people with anxiety. I think with most of us that damn white elephant is in the room and we can't see it. I suffered from TMS twice...once when I was 32 and again 42. It went away after months of not knowing what it was and all I heard was "it must be mechanical". Well at the age of 61 it came back and yes I am stuck too. Had a fusion that did nothing. KerrJ....do this...get it all out of your mind with the book reading etc other than what I think you might take a peek at. Suffer with it for a while and just go back to work. Sometimes you have to put it down and LET IT GO. If the pain is so bad get some pain meds for relief and say BS there is nothing wrong with me everyday to yourself and put one foot in front of the other. Odds are good it will slowly dissipate. I think we get so nerved up the tension in our muscles causes it all.
 
Jules said:
Another thing I might add, is what I’m dealing with now which is, what does not want to be felt? Is there a big elephant in the room, or a mouse, as Time2be would say, that is just too persistent? Really dig into your stresses, and what is bothering you now, being honest with yourself. I’ve come to the conclusion, it’s consistency, persistence, and patience. I’ve been dealing with this TMS crap for 20 years, and have been doing the TMS work for five years. There are times when I rarely have pain and I can move about doing whatever I want, and there are other days where I am totally incapacitated. It’s really hard to practice outcome independence, but I’m doing my best. Little goalscan be really helpful, as well as progress reports.

He was one clue that really helped me, and may help you. When I went to my company Christmas party, I danced for a half an hour solid, with no pain. So, if it was something structural, I would’ve made it much worse. So, how come I had no pain when I was dancing, but a ton of pain when I’m working on the computer? ;) Some food for thought.
Click to expand...
keep dancing lol...
 
I would have to guess that those 5 days your anxiety was lifted. You were in the moment, content with yourself, and you were enjoying what you were doing. I doubt it was physical activity curing anything. Remember, this is about emotions. For me, Alan Gordon's wiki page is the greatest.

http://www.tmswiki.org/ppd/TMS_Recovery_Program (TMS Recovery Program)

I keep thinking I've got it all figured out. Then I relapse or have some lingering pain. I read through that entire page and especially listen to the therapy sessions. I've made progress recognizing myself in what he describes in some sections. The more I read it and listen, the more I identify I actually do have those additional problems leading to pent up emotions. I may be turning that final corner now, and what happened to me was the most intense emotional feeling when I realized the root cause. I'm not an emotional person. It was intense. I believe that was the subconscious thoughts coming to consciousness.
 
Thanks Gigalos. Haven’t seen an actual TMS practitioner, but I imagine they would just tell me what all the TMS books are tellling me? I have had years of psychotherapy though.
 
Andy B said:
Hello Kerrj74,

I hope that you don't give up on the TMS path. The "experts," focusing on physical reasons for pain will have an endless parade of reasons and treatments for your pain. They are doing the best they can, within their training and knowledge. As Gigalos suggests, it would be great if you could see a TMS physician in person for a diagnosis. And/or get support with a therapist or coach if you can do that. Just know that for most folks, doubts remain, and the time required for the work to take effect is longer than we want! Sending you support!

Andy
Click to expand...


Thanks Andy!
 
Lainey said:
Kerrj74
Don't give up! Maybe it is time to stop seeking the advice of medical experts and let your engineer's brain relax from the analytical journey it has taken your on these many years. You had the astounding and affirming results of NO PAIN after five days of working in your garden. This, in and of itself, seems the key to your answer as to whether or not you are suffering from TMS. I suspect you suspect that this is yes, but sometimes it is so difficult to believe. Cricket 313 suggests deeper psychological insight/work. Could this be something you should look into?
Good luck on your path to unlocking the TMS hold.
Kindly
Lainey
Click to expand...

Thanks Lainey! I appreciate the observations and insight!
 
Jules said:
Another thing I might add, is what I’m dealing with now which is, what does not want to be felt? Is there a big elephant in the room, or a mouse, as Time2be would say, that is just too persistent? Really dig into your stresses, and what is bothering you now, being honest with yourself. I’ve come to the conclusion, it’s consistency, persistence, and patience. I’ve been dealing with this TMS crap for 20 years, and have been doing the TMS work for five years. There are times when I rarely have pain and I can move about doing whatever I want, and there are other days where I am totally incapacitated. It’s really hard to practice outcome independence, but I’m doing my best. Little goalscan be really helpful, as well as progress reports.

He was one clue that really helped me, and may help you. When I went to my company Christmas party, I danced for a half an hour solid, with no pain. So, if it was something structural, I would’ve made it much worse. So, how come I had no pain when I was dancing, but a ton of pain when I’m working on the computer? ;) Some food for thought.
Click to expand...


Great points Jules! Thank you
 
Tms_joe said:
I would have to guess that those 5 days your anxiety was lifted. You were in the moment, content with yourself, and you were enjoying what you were doing. I doubt it was physical activity curing anything. Remember, this is about emotions. For me, Alan Gordon's wiki page is the greatest.

http://www.tmswiki.org/ppd/TMS_Recovery_Program (TMS Recovery Program)

I keep thinking I've got it all figured out. Then I relapse or have some lingering pain. I read through that entire page and especially listen to the therapy sessions. I've made progress recognizing myself in what he describes in some sections. The more I read it and listen, the more I identify I actually do have those additional problems leading to pent up emotions. I may be turning that final corner now, and what happened to me was the most intense emotional feeling when I realized the root cause. I'm not an emotional person. It was intense. I believe that was the subconscious thoughts coming to consciousness.
Click to expand...

That is amazing Joe! Good for you.
Great point about the anxiety being lifted! Thanks. I need to find out how I was able to do that again. It shouldn’t be so elusive.
 
Click#7 said:
A 20 year old that got talked into a spinal fusion ? TMS makes sense to all of us, but from what I've read your heart (subconscious) has to take hold. Every doctor has a diagnosis because that is how they get paid. If you looked at a 85 years olds MRI you would see everything you've mentioned...like a train off the tracks and these elderly folks have NO PAIN. Many who had some kind of surgery and treatment. Read Claire Weekes or listen to her on youtube (she died in 1990) and she makes so much sense to people with anxiety. I think with most of us that damn white elephant is in the room and we can't see it. I suffered from TMS twice...once when I was 32 and again 42. It went away after months of not knowing what it was and all I heard was "it must be mechanical". Well at the age of 61 it came back and yes I am stuck too. Had a fusion that did nothing. KerrJ....do this...get it all out of your mind with the book reading etc other than what I think you might take a peek at. Suffer with it for a while and just go back to work. Sometimes you have to put it down and LET IT GO. If the pain is so bad get some pain meds for relief and say BS there is nothing wrong with me everyday to yourself and put one foot in front of the other. Odds are good it will slowly dissipate. I think we get so nerved up the tension in our muscles causes it all.
Click to expand...

Thanks Click! Great advice that I will take! I appreciate it.
Oh and yeah I got talked into it after 2 years of the same exact pain I am in today.
 
Kerrj74 said:
Thanks Click! Great advice that I will take! I appreciate it.
Oh and yeah I got talked into it after 2 years of the same exact pain I am in today.
Click to expand...
So did I. I really believe you have TMS just by reading your story. You are in the age bracket of high responsibility like Sarno says. Don't give up, but let go. I love this board because folks support each other. Hang in there and go fix something in your house or take a long airplane trip to Hawaii with your significant other, or exercise IF it makes you happy. Go see Dr. Schubiner or Stracks they are nicest doctors on the planet. PS there is an article in the NEW England Journal of Medicine about all the people with bulges, protrusions, etc on MRI...with NO pain. If you are an engineer this ought to send a message to your subconscious.
 
Click#7 said:
So did I. I really believe you have TMS just by reading your story. You are in the age bracket of high responsibility like Sarno says. Don't give up, but let go. I love this board because folks support each other. Hang in there and go fix something in your house or take a long airplane trip to Hawaii with your significant other, or exercise IF it makes you happy. Go see Dr. Schubiner or Stracks they are nicest doctors on the planet. PS there is an article in the NEW England Journal of Medicine about all the people with bulges, protrusions, etc on MRI...with NO pain. If you are an engineer this ought to send a message to your subconscious.
Click to expand...

Thanks! I have been 99% convinced of TMS, but I can’t get to 100% which I know is holding me back.
 
Kerrj74 said:
Haven’t seen an actual TMS practitioner, but I imagine they would just tell me what all the TMS books are tellling me?
Click to expand...

There is something very profound about a diagnosis Kerrj74, or working with a guide who can give you more confidence, through direct support. These things do have impact!

And, all the good advice you have received, including not focusing on the TMS approach so much ---all have validity. So much of this is about using your inner guidance and finding your own way, usually through various "hells" along the way (which I know you know about). Good luck!
 
Hi Kerrj, lots of things going on for you. My latest 'insights' might also help you (I hope they help me). For me the situation is similar: I am doing great for some time, then the pain comes back. In the beginning I am calm - or I think I am, but in reality I am in denial. There is a difference between staying calm and denying that there might be something you have to have a closer look at. That's my first insight. When the pain starts, you have to act. If the pain is allowed to stay too long then it also takes longer to get rid of it again. And there is a fine balance between dramatizing the pain and the possible emotional reason (like: there must be an elephant) and to focus on what is going on psychologically (like: there might be an elephant I am in denial of, but maybe not) . If you scrutinize yourself too hard you start to doubt everything. And that's not smart.


The next point has turned out to be even more important for me. A good friend who is a psychotherapist (though not my psychotherapist) told me that people usually get better when they address their underlying psychological problems (repressed emotions) AND doing something they enjoy! He said the best way to get rid of pain is to be together with friends and in nature. When he told me that I thought, okay, yes, you are right. But first I need to get better, then I can start rearranging my life and get a better balance between fun and work. Nope, it doesn't work like this and my friend is right. You can scrutinize your psyche as long as you want - and I guess you did that in psychotherapy! - but if there is nothing for you in your everyday life that gives you pleasure, if your life doesn't feel meaningful, then the pain will go on. That is at least my experience. In more theoretical terms: we often cling to a simple causal model, like here is the repressed emotion, now I feel it and that will make the pain go away. But life is more complicated and the body and the nerve system need to establish a new balance not in an abstract way, but is has to be lived. I think that is one reason why Sarno and the other TMS therapists highlight that you should not focus on symptoms, why it is not recommended to keep a pain diary etc. Because healing happens while you live - while you really live. Then the nerve system is able to reorganize, to calm down etc. My urologist, who is trained in psychosomatics, always tell me: go and have a life!
Well, maybe that helps you too. And by the way: I had 6 years of psychoanalysis and the pain was under control at that time, but it was just that, merely a continued placebo. Usually psychotherapy is too intellectual, not practical enough. And that's a huge problem for people who are very intellectual by nature (or for whatever reason).
 
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