I have TMS. I want Surgery Anyway

[eightball776]

Dr. Sarno is pretty clear on his position – pinched nerves/bulging discs do not cause back pain.Yet these days I am struggling mightily to accept that my LBP pain is totally unrelated to anything mechanical. I’ve been reading experiences posted by patients who have undergone the kinds of operations often recommended to this crowd to treat all of the standard TMS-style diagnoses like Spinal Stenosis, Degenerative Disc Disease, etc. These patients have all been operated on by the surgeon I’ve consulted with, whose recommendation was for me to have L4-L5/L5-S1 fusion, but only after I can be off steroids for at least 6 months.

The main thing I’m looking for is a consensus from this community about these success stories. In these circles, we talk a lot about the horror stories – all the failed surgeries, etc., but I don’t see a lot of talk about the other folks that point to their surgery as the greatest decision they ever made.

I’m not sure if It’s OK to post links to the reviews & identify the doc, but if you have a special interest & would like to help I can PM that info.

I do believe TMS plays a role in many of these cases, and would not be at all surprised if a good chunk of them could blame 100% of their problem on TMS & could have achieved the same or even greater degree of success had they tried the mind-body approach 1st.

So here I am, a former patient (and success story) of Dr. Sarno’s able to acknowledge that repressed stress contributes to my back pain. I have all of the personality traits commonly found among patients suffering from MBS. I’ve even experienced what Dr. Sarno referred to as ‘the Symptom Imperative’, when I developed an anxiety disorder almost immediately following celebrating conquering the back pain. I overcame the anxiety through education. Once I learned exactly what was going on psychologically & physiologically, I stopped having the attacks.

The point is that despite all of this 1st-hand experience with TMS...all the knowledge, introspection, etc., I am still almost certainly headed for the operating table. I can’t help but shake the feeling that this time around, the stress, depression, anger, etc. are the result of the pain and not the cause.

 

[Timbercat]

Dr. Sarno is pretty clear on his position – pinched nerves/bulging discs do not cause back pain.Yet these days I am struggling mightily to accept that my LBP pain is totally unrelated to anything mechanical. I’ve been reading experiences posted by patients who have undergone the kinds of operations often recommended to this crowd to treat all of the standard TMS-style diagnoses like Spinal Stenosis, Degenerative Disc Disease, etc. These patients have all been operated on by the surgeon I’ve consulted with, whose recommendation was for me to have L4-L5/L5-S1 fusion, but only after I can be off steroids for at least 6 months.

The main thing I’m looking for is a consensus from this community about these success stories. In these circles, we talk a lot about the horror stories – all the failed surgeries, etc., but I don’t see a lot of talk about the other folks that point to their surgery as the greatest decision they ever made.

I’m not sure if It’s OK to post links to the reviews & identify the doc, but if you have a special interest & would like to help I can PM that info.

I do believe TMS plays a role in many of these cases, and would not be at all surprised if a good chunk of them could blame 100% of their problem on TMS & could have achieved the same or even greater degree of success had they tried the mind-body approach 1st.

So here I am, a former patient (and success story) of Dr. Sarno’s able to acknowledge that repressed stress contributes to my back pain. I have all of the personality traits commonly found among patients suffering from MBS. I’ve even experienced what Dr. Sarno referred to as ‘the Symptom Imperative’, when I developed an anxiety disorder almost immediately following celebrating conquering the back pain. I overcame the anxiety through education. Once I learned exactly what was going on psychologically & physiologically, I stopped having the attacks.

The point is that despite all of this 1st-hand experience with TMS...all the knowledge, introspection, etc., I am still almost certainly headed for the operating table. I can’t help but shake the feeling that this time around, the stress, depression, anger, etc. are the result of the pain and not the cause.

Eight ball
I actually understand what u just posted I think. I have TMS confirmed by a consultation with Dr Schubiner last summer. My LBP is getting nothing but worse slowly and steadily over the past 3 yr. As a matter of fact, I can hardly walk very far right now so I understand your desperation. I have been working on TMS approach for about 2 yr. I had L-4-5 fusion in 2001 and did well for 15 yr after a very complicated recovery. So I have been to that party once.
Do I understand correctly that u healed with Dr Sarno for LBP in the past ? And now you are in a relapse?

 

[lowella]

If I understand correctly from Sarno as well as friends who have been through surgery, once you have surgery you are more likely to need one adjacent to that one due to the immobility of it, in the future.
I don't see any evidence or claims from anyone anywhere that the emotions are a result of pain and not the cause. Still, no one can keep you from surgery otherwise, of course, that's your own decision.

 

[NicoleB34]

let me use my pudendal neuralgia as an example. If you dont know what this is, it's pain in the major nerve that affects the entire lower pelvis. it's a hideous thing to have, and i wont go into the gory details, but one of the "treatments" is surgery to release a nerve that might be entrapped. Problem is, there's no good way to know if the nerve is trapped, and since you have to sever a major ligament, it can cause problems in the future. I believe (and other PN sufferers here will attest) that 90+ percent of pelvic nerve pain is TMS. This excludes surgical mishaps or scar tissue of course, but like i said, severing a major ligament because it's supposedly "entrapping" the nerve, is very risky and has low success rates. And yet, i have heard of some people saying it helped a lot. Usually not pain free, but it helped.

Could it be placebo? maybe. However, i'm more inclined to think that it's a combo of a couple things. First of all, when you have TMS (or what some doctors like to call central sensitization), the painful area of your body "feels" more than an average person would feel. the brain is wound up and jacking up the sensitivity to a part of the body that it feels is under threat. It's a protective mechanism so that you stay off the part that the brain thinks is under attack. There are many reasons this can happen, whether it's repetitive stress, or emotional, or fear-based, but regardless, you're more sensitive. What feels like pressure to a non-TMS sufferer, can feel like pain to us. I had a doctor describe it like "imagine your brain controls a sensitivity dial. yours is turned up".
Pudendal neuralgia sufferers often struggle with sitting. In a normal person, the pressure of sitting doesnt hurt. For many of us, it does. any type of palpitating the problem area hurts more than it should. So in my opinion (i may be wrong) when you slice away a huge important ligament, your not untrapping the nerve, but you are removing a structure that simply "touches" the painful nerve. So yeah, MAYBE your pain goes down a couple notches because that's one less structure putting physical contact on a pissy sensitive area. However, most people who have this surgery still have some remaining pain, because it's coming from the brain.
I do happen to know a girl, young (30s), who just had back surgery for a disc issue and feels perfectly fine now. I guess do your research about how many people actually get significant relief from something risky. Like i said, you might have the type of TMS where taking pressure off a cranky area helps a bit, but the true problem is in the brain. I look at it like taking your clothes off if you have a sunburn. it wont heal the burn, it just might remove one irritating factor.
I have another odd TMS symptom where patches of my skin will burn. you cant see anything, but it feels like a bad abrasion. Since it's not an actual injury, the choice to remove clothing over the burning area isnt actually "healing" a physical injury, but yet, it's still highly unpleasant to have fabric brushing the burning area, so i remove the fabric. Hope that makes sense.
edit: i know some people might object to the "sensitive nerve" theory, since TMS has a heavy psychological component, but i am well aware that ALL pain comes from the brain. even if your foot hurts, it's still the brain that controls that level of hurt. Sometimes though, the brain over-sensitizes an area. The cause of this can be many reasons, but the brain is still the ultimate decider of how much you'll feel. I say this because TMS can make it seem like pain is imagined. You dont imagine pain...but your imagination can affect pain

 

[JanAtheCPA]

I don't see any evidence or claims from anyone anywhere that the emotions are a result of pain and not the cause.

Good pickup, lowella. I couldn't figure out how to tackle this one - this clues me in!

@eightball776 , it's all too easy for people who are in pain, and desperate, to turn it around like this. I say "people", but really, it's their fearful brains that are doing this, and they are in such bad shape that they don't have the strength to turn it back around and fight it.

The original TMS mechanism was designed for survival - to keep us in fear, worried, and on the alert. In the modern world, it too easily goes into overdrive or hyperdrive, if not completely off-the-rails haywire.

This is the best description I can offer to counteract the apparent logic that it's the pain that causes the stress. People often have early success with TMS, but don't really "do the work". If we haven't opened ourselves up to do the essential, deep emotional work, particularly to learn to listen to our inner unconscious messages, and learn to counteract those messages with self-acceptance and self-soothing, the original primitive TMS mechanism will gradually but eventually take over and overwhelm us with fear.

It's natural to be anxious, depressed, and angry about this, but those are the shallow and pointless reactions, they are NOT the deep and "dangerously" negative emotions that our brains want to repress. Our brains are happy to have us wallowing around in depression and anxiety and anger, but what is really needed is the emotional strength and the will to stand up for ourselves and fight back.

 

[JanAtheCPA]

And a good response from @NicoleB34.

Consumer Reports recently published a really comprehensive article about chronic pain, with a lot of different aspects covered, but there was a big emphasis on the low rate of success with back and knee surgeries. I can't remember the exact details, but they point to a survey of back, knee, and hip surgery patients 5-10 years after their surgeries, and only the hip surgery patients (presumably replacements?) reported a significantly high level of satisfaction that long after their surgeries.

I do think that the placebo effect, which is extremely powerful, has a huge effect on surgery satisfaction, given the huge commitment involved in surgery. It's essentially in the same realm as people who experience the "book cure" after reading Dr. Sarno, without committing to the long-term emotional work. Different people can make the "book knowledge" work for them longer than others, and I have no doubt that this is the same with the placebo effect of a surgery. I could see how a young back surgery patient who is also committed to a healthy lifestyle might do fine for many years - but we have plenty of stories from people who say that the real cause, which they later realize was TMS all along, catches up with them eventually, and they manage to achieve success in spite of the old surgery which was probably never needed.

PS - the CR article profiled Dr. David Hanscom! I see that as progress!

 

[JanAtheCPA]

For learning how to journal and learning how to recognize and accept our true repressed emotions, as opposed to what we think is bothering us, I recommend @Nicole J. Sachs LCSW .

 

[eightball776]

I don't know if I can call it a 'relapse'...but yes, Dr. Sarno 'cured' me about 25 years ago. Back then, the pain would migrate from the left side to the right & middle. It didn't 'act' like any normal injury. I even went to see Dr. Rashbaum a few years ago just to have someone in a white coat familiar with Dr. Sarno's teachings tell me that it's just TMS. He didn't give me any guarantees of course, but he pointed in that direction. How long was your recovery from the fusion? I'm pretty uneasy about that one...mainly because the stories I've heard about the recovery have been far too varied.

Eight ball
I actually understand what u just posted I think. I have TMS confirmed by a consultation with Dr Schubiner last summer. My LBP is getting nothing but worse slowly and steadily over the past 3 yr. As a matter of fact, I can hardly walk very far right now so I understand your desperation. I have been working on TMS approach for about 2 yr. I had L-4-5 fusion in 2001 and did well for 15 yr after a very complicated recovery. So I have been to that party once.
Do I understand correctly that u healed with Dr Sarno for LBP in the past ? And now you are in a relapse?

 

[eightball776]

Thanks everyone for your input. Apologies for the delayed response; I’ve been trying more of an avoidance-mode lately. It’s consuming so much of my life these days that I just don’t feel like talking/writing about it anymore. I think this feeling is why I never seem to be able to keep up with the journaling, and maybe even why I don’t find psychotherapy all that helpful. It just feels like more complaining, and I already do enough of that, even if it’s in my own mind. My story is complicated and long, and I’m a lousy editor, but I’ll try to do a little better in clarifying my point here…


The irony of it all is that I’m constantly diagnosing others with TMS. I can spot all the signs and play armchair psychologist all day…I don’t dare say anything though…it’d be like a chain smoker lecturing someone about maintaining a healthy lifestyle.


I really wasn’t one of those people who had a hard time accepting the original diagnosis when I first saw Dr. Sarno way back when. I saw my own personality traits on every page. I’m very aware of the kind of repressed rage that produces MBS. All too aware. Calling bullshit on all the doctors and the scary disorders they were throwing around actually wasn’t very difficult for me. The fact that all of the same techniques that produced a miracle back then are totally ineffective now isn’t even the main part that’s producing the doubt now. The efficacy of the steroids tells me there’s an inflammatory component. The standard blood tests that show inflammation and elevated disease activity shows the link to the autoimmune disorder. Is repressed stress responsible for kickstarting the autoimmune process? Maybe. But that’s not all of it by a long shot. It’s hard to explain, but I can feel the almost involuntary tightening of my back muscles when I’m concentrating on work or when I’m relaxing in front of the TV…when I’m conscious of it, I can relax it. It’s the same process that tightens my soaz & all of the muscles the physical therapists like to talk about. That’s the ‘chronic back pain’ that’s almost surely 100% rooted in the psychological. The difference now is when the muscles in my core become fatigued, my left leg shuts off. It’s hard to explain, because it’s not really a loss of motor function or anything because I can keep going, but then it’ll just go numb and the pain becomes just too much to bear – around my hip area just feels like it’s being crushed. The numbness & pins/needles are just annoying. But here’s the rub …. I had no idea what the common symptoms of an L5/S1 nerve root impingement. I ‘presented’ with the exact symptoms that are supposed to be associated with this issue. What unconscious psychological process could have conceived of this if my conscious brain never even took in the information? If the folks raving about the success of the surgery are all benefitting from a placebo effect – sign me up anyway. If the result is the same, who cares?! Though truth be told, I just can’t get there. I believe in how powerful the placebo effect can be, but I can’t get to a place where I can accept that every single one of them is having that kind of response. Why do all of the patients with this pathology experience the same symptoms? We can argue the cause all day – and what exactly is exacerbating the condition – inflammation/swelling from Crohn’s Disease, or oxygen deprivation from TMS, or a mechanical process where the nerve is just getting smushed when I put weigh on that leg (this is what it sure feels like)….it doesn’t really matter – I still must find a way to relieve the pressure on the nerve. If I woke up tomorrow and the pain was gone, my stress wouldn’t all disappear, but all of the emotional trauma of coping with the pain day in, day out would…

 

[Timbercat]

I don't know if I can call it a 'relapse'...but yes, Dr. Sarno 'cured' me about 25 years ago. Back then, the pain would migrate from the left side to the right & middle. It didn't 'act' like any normal injury. I even went to see Dr. Rashbaum a few years ago just to have someone in a white coat familiar with Dr. Sarno's teachings tell me that it's just TMS. He didn't give me any guarantees of course, but he pointed in that direction. How long was your recovery from the fusion? I'm pretty uneasy about that one...mainly because the stories I've heard about the recovery have been far too varied.

I don't know if I can call it a 'relapse'...but yes, Dr. Sarno 'cured' me about 25 years ago. Back then, the pain would migrate from the left side to the right & middle. It didn't 'act' like any normal injury. I even went to see Dr. Rashbaum a few years ago just to have someone in a white coat familiar with Dr. Sarno's teachings tell me that it's just TMS. He didn't give me any guarantees of course, but he pointed in that direction. How long was your recovery from the fusion? I'm pretty uneasy about that one...mainly because the stories I've heard about the recovery have been far too varied.

My recovery was quite prolonged. I went back to work within about 3 months, worked 3-4 months and then was back out on a 2nd LOA which eventually cost me my job. It was another 7 months before I became free of the pain and could even consider working. I went through a myelogram, a bone scan, EMG, consult for implanting a pain pump and then got referred to "failed back clinic." What finally gave me my life back was the Pain Management Program which included just a lot of group and individual counseling, exercise, PT. Daily all day for 4 weeks. The therapy in some ways overlapped what I have learned about TMS. I was able to see and change my thinking and behaviors that were trapping me. So post- op nothing physical was wrong with my back. I believe to this day it was psychological and fear based and lack of exercise. If I weren't the TMS personality that I am, maybe my recovery would have been different. I did not find Dr Sarno until many years after this back surgery. I don't know if I would have had the surgery anyway...if I had known of him. That's what I can tell you about my recovery.

 

[Timbercat]

Thanks everyone for your input. Apologies for the delayed response; I’ve been trying more of an avoidance-mode lately. It’s consuming so much of my life these days that I just don’t feel like talking/writing about it anymore. I think this feeling is why I never seem to be able to keep up with the journaling, and maybe even why I don’t find psychotherapy all that helpful. It just feels like more complaining, and I already do enough of that, even if it’s in my own mind. My story is complicated and long, and I’m a lousy editor, but I’ll try to do a little better in clarifying my point here…


The irony of it all is that I’m constantly diagnosing others with TMS. I can spot all the signs and play armchair psychologist all day…I don’t dare say anything though…it’d be like a chain smoker lecturing someone about maintaining a healthy lifestyle.


I really wasn’t one of those people who had a hard time accepting the original diagnosis when I first saw Dr. Sarno way back when. I saw my own personality traits on every page. I’m very aware of the kind of repressed rage that produces MBS. All too aware. Calling bullshit on all the doctors and the scary disorders they were throwing around actually wasn’t very difficult for me. The fact that all of the same techniques that produced a miracle back then are totally ineffective now isn’t even the main part that’s producing the doubt now. The efficacy of the steroids tells me there’s an inflammatory component. The standard blood tests that show inflammation and elevated disease activity shows the link to the autoimmune disorder. Is repressed stress responsible for kickstarting the autoimmune process? Maybe. But that’s not all of it by a long shot. It’s hard to explain, but I can feel the almost involuntary tightening of my back muscles when I’m concentrating on work or when I’m relaxing in front of the TV…when I’m conscious of it, I can relax it. It’s the same process that tightens my soaz & all of the muscles the physical therapists like to talk about. That’s the ‘chronic back pain’ that’s almost surely 100% rooted in the psychological. The difference now is when the muscles in my core become fatigued, my left leg shuts off. It’s hard to explain, because it’s not really a loss of motor function or anything because I can keep going, but then it’ll just go numb and the pain becomes just too much to bear – around my hip area just feels like it’s being crushed. The numbness & pins/needles are just annoying. But here’s the rub …. I had no idea what the common symptoms of an L5/S1 nerve root impingement. I ‘presented’ with the exact symptoms that are supposed to be associated with this issue. What unconscious psychological process could have conceived of this if my conscious brain never even took in the information? If the folks raving about the success of the surgery are all benefitting from a placebo effect – sign me up anyway. If the result is the same, who cares?! Though truth be told, I just can’t get there. I believe in how powerful the placebo effect can be, but I can’t get to a place where I can accept that every single one of them is having that kind of response. Why do all of the patients with this pathology experience the same symptoms? We can argue the cause all day – and what exactly is exacerbating the condition – inflammation/swelling from Crohn’s Disease, or oxygen deprivation from TMS, or a mechanical process where the nerve is just getting smushed when I put weigh on that leg (this is what it sure feels like)….it doesn’t really matter – I still must find a way to relieve the pressure on the nerve. If I woke up tomorrow and the pain was gone, my stress wouldn’t all disappear, but all of the emotional trauma of coping with the pain day in, day out would…

Ok eightball, I am going to try to respond to this post. You seem to be a very analytical person...almost "analysis paralysis." It takes one to know one. The most important point that I am getting from you is that you have a very strong ingrained image in your brain of a compressed nerve at L5S1 that is causing all the pain and tingling etc. I am basically in the same boat. And the only thing your brain is able to see that will help is if that pressure is taken off the nerve. The placebo that others are benefiting from after successful surgery is also something u cannot buy into 100% anymore than u can do that with TMs. So u are basically stuck which makes everything hurt more. No surgeon will guarantee you freedom from your symptoms. You could wake up better, worse or the same. I tend to feel that there is some emotional trauma contributing to this pain (not because of it) like anger or fear or something else. If I had to live with Crohns that would put me over the edge right there. I have no answers for you and would never tell you what to do or not do. For my part, I am a bit more receptive to continuing on with the TMS approach and listening to Nichole Sachs. Plus I clearly see the enormous stressors in my life again. I hope you find some ways to be calm and peaceful so you can do the next right thing for you. I wish you all the best and hope you update us on your decisions.

 

[eightball776]

Thanks again to everyone who's taken an interest! My journey has hit another unexpected fork. After a year+ of battling with the insurance company, I finally managed to get access to the next biologic medication my gastro had been wanting to try, as much for the back pain as for the CD, because there's quite a lot of agreement that they are one and the same. About 10 days later, I have a nasty reaction that's hard to describe, but basically it felt like every joint in my body was on fire & the slightest movement triggered the most ferocious pain like I haven't felt since I had an obstructed intestine. I couldn't scratch my nose without howling in agony. Accompanied by a 102 fever, they call it 'Serum Sickness'. Paramedics had to carry me into the ambulance. A few days in the hospital on IV steroids & I'm out & feeling better. The punchline? Little to no back pain at all. To me this is just more evidence that the pinched nerve is just a place in my body that's more susceptible to pain as a result of the runaway inflammation. That inflammation is the result of the autoimmune disease being uncontrolled.
If I could put a block of time together where my blood work is normal, am off steroids, and still have horrible back pain, then that might point more to the mechanical. Yet I don't see that happening. The emotional/stress factor is of course a big part of what makes autoimmune diseases tick...so are a hundred other lifestyle choices. There's really only one thing I know for certain after all these years ... once the 'flare' is rolling, there's no healthy diet or guided meditation that'll slow it down. Those are all maintenance tools for after the process is under control. Getting that under control requires more experimentation with dangerous, expensive drugs. That alone is enough to stress anybody out. It's really bizarre. I needed a wheelchair last week & now I feel like I could go for a bike ride & have no pain with walking at all. If only I could stay on this much Prednisone & not go crazy.

 

[Timbercat]

Thanks again to everyone who's taken an interest! My journey has hit another unexpected fork. After a year+ of battling with the insurance company, I finally managed to get access to the next biologic medication my gastro had been wanting to try, as much for the back pain as for the CD, because there's quite a lot of agreement that they are one and the same. About 10 days later, I have a nasty reaction that's hard to describe, but basically it felt like every joint in my body was on fire & the slightest movement triggered the most ferocious pain like I haven't felt since I had an obstructed intestine. I couldn't scratch my nose without howling in agony. Accompanied by a 102 fever, they call it 'Serum Sickness'. Paramedics had to carry me into the ambulance. A few days in the hospital on IV steroids & I'm out & feeling better. The punchline? Little to no back pain at all. To me this is just more evidence that the pinched nerve is just a place in my body that's more susceptible to pain as a result of the runaway inflammation. That inflammation is the result of the autoimmune disease being uncontrolled.
If I could put a block of time together where my blood work is normal, am off steroids, and still have horrible back pain, then that might point more to the mechanical. Yet I don't see that happening. The emotional/stress factor is of course a big part of what makes autoimmune diseases tick...so are a hundred other lifestyle choices. There's really only one thing I know for certain after all these years ... once the 'flare' is rolling, there's no healthy diet or guided meditation that'll slow it down. Those are all maintenance tools for after the process is under control. Getting that under control requires more experimentation with dangerous, expensive drugs. That alone is enough to stress anybody out. It's really bizarre. I needed a wheelchair last week & now I feel like I could go for a bike ride & have no pain with walking at all. If only I could stay on this much Prednisone & not go crazy.

Hello again,
After reading your update, I am speechless...and sorry to hear you went through all of this. Glad you are feeling better but it sounds like once they taper that prednisone, you won't feel like riding a bike. I don't know a lot about autoimmune diseases but I know they are treated with some wicked and expensive medications. You seem to have a lot of insight into the "emotional/stress factor" that you said is a big part of autoimmune disease. Have you found anyone or anything that helps you with that aspect? Why does the uncontrolled inflammation make its way to your spine and the nerves? I dont get that part? I guess I am just hopeful for you...that someone will be able to help you. I guess this last episode cured you of wanting surgery.

 

[eightball776]

Sure, it cured me from wanting surgery...for now. Like you said, I won't feel much like riding a bike once I taper off of the Prednisone...which I will naturally want to do as quickly as possible. I did start working with a psychologist specializing in chronic pain but I was having a lot of trouble paying for it and sorta put it on hold for a bit. I do have work to do on that front but I don't expect any revelations. I no doubt have all the ingredients - hyper-analgesia, overactive nerves, and all of the unnatural mechanisms that develop in the mind & body over years of living with chronic pain. While I've no doubt proven over the years that major emotional trauma has the ability to kick-start the process. I took a look back through my medical records & matched up hospitalizations with stressful events and there were distinct correlations...but there are also just as many that came out of the blue. I remember arguing with Dr. Sarno about why I started grinding my teeth as a toddler or about his insistence that I had enough repressed rage at age 7 to lead to the Crohn's diagnosis at age 7. It's probably the only thing he told me that I just couldn't agree with. By all accounts that age was one of the best ever ... but I really don't think there is a special button in my psyche that will make everything better if I could only find it & push it. Could my lifestyle choices be better? Who's couldn't. Do my perfectionist tendencies and overly critical mindset make things worse? Is it healthy to avoid depression by embracing anger also cause more pain? Of course they do. Do I rely on short-term fixes like procrastination/distraction, bad food, chemicals, whatever can temporarily free me from pain? All the time. I think one of the biggest hurdles this time around is that I am a victim of my own success. Had I never 'cured' my back pain so completely and so miraculously back in my early 20s, I wouldn't be so tortured this time around. I've already done 10X the psychological work than what was required back then but with zero result. Could I do 20X more? I guess, but that takes time away from the hundred other areas that require attention - the physical fitness, diet, rest, etc. When you live alone & are still needing to pay bills & take care of everything .. it gets harder every year. I mostly do a pretty good job of staying away from the 'why me's', but there is a recklessness I never had before. These days I think above all else I just try to stay out of depression. If I can keep myself in good spirits & retain some humor about it all, then, well, that's a victory worth celebrating right there. The main difference these days is the added stress of having medical costs tie the hands of every medical professional that might be able to help. How many months or even years have been lost to needless suffering while waiting for the next prior authorization to come through? How do you not get angry about that? I'll let you know when I figure that one out. End rant.

Hello again,
After reading your update, I am speechless...and sorry to hear you went through all of this. Glad you are feeling better but it sounds like once they taper that prednisone, you won't feel like riding a bike. I don't know a lot about autoimmune diseases but I know they are treated with some wicked and expensive medications. You seem to have a lot of insight into the "emotional/stress factor" that you said is a big part of autoimmune disease. Have you found anyone or anything that helps you with that aspect? Why does the uncontrolled inflammation make its way to your spine and the nerves? I dont get that part? I guess I am just hopeful for you...that someone will be able to help you. I guess this last episode cured you of wanting surgery.

 

[Timbercat]

Sure, it cured me from wanting surgery...for now. Like you said, I won't feel much like riding a bike once I taper off of the Prednisone...which I will naturally want to do as quickly as possible. I did start working with a psychologist specializing in chronic pain but I was having a lot of trouble paying for it and sorta put it on hold for a bit. I do have work to do on that front but I don't expect any revelations. I no doubt have all the ingredients - hyper-analgesia, overactive nerves, and all of the unnatural mechanisms that develop in the mind & body over years of living with chronic pain. While I've no doubt proven over the years that major emotional trauma has the ability to kick-start the process. I took a look back through my medical records & matched up hospitalizations with stressful events and there were distinct correlations...but there are also just as many that came out of the blue. I remember arguing with Dr. Sarno about why I started grinding my teeth as a toddler or about his insistence that I had enough repressed rage at age 7 to lead to the Crohn's diagnosis at age 7. It's probably the only thing he told me that I just couldn't agree with. By all accounts that age was one of the best ever ... but I really don't think there is a special button in my psyche that will make everything better if I could only find it & push it. Could my lifestyle choices be better? Who's couldn't. Do my perfectionist tendencies and overly critical mindset make things worse? Is it healthy to avoid depression by embracing anger also cause more pain? Of course they do. Do I rely on short-term fixes like procrastination/distraction, bad food, chemicals, whatever can temporarily free me from pain? All the time. I think one of the biggest hurdles this time around is that I am a victim of my own success. Had I never 'cured' my back pain so completely and so miraculously back in my early 20s, I wouldn't be so tortured this time around. I've already done 10X the psychological work than what was required back then but with zero result. Could I do 20X more? I guess, but that takes time away from the hundred other areas that require attention - the physical fitness, diet, rest, etc. When you live alone & are still needing to pay bills & take care of everything .. it gets harder every year. I mostly do a pretty good job of staying away from the 'why me's', but there is a recklessness I never had before. These days I think above all else I just try to stay out of depression. If I can keep myself in good spirits & retain some humor about it all, then, well, that's a victory worth celebrating right there. The main difference these days is the added stress of having medical costs tie the hands of every medical professional that might be able to help. How many months or even years have been lost to needless suffering while waiting for the next prior authorization to come through? How do you not get angry about that? I'll let you know when I figure that one out. End rant.

I surely can relate to living alone and paying the bills and how hard that has become because I am doing the same. I too cannot afford some of the professionals who might be able to help me - I am really at rock bottom financially trying to pay medical and other expenses. And I completely agree with you that staying out of depression and for me panic is a big accomplishment everyday. I am fighting the urge to go back to a neurosurgeon ... my back just seems to get nothing but worse and my stress levels are likewise getting worse. Anyway, I hope u don't mind if I stay in touch with you from time to time. I hope we both find some relief. Good luck to you.

 

[eightball776]

Of course anytime... I definitely get some strength from knowing there are others dealing with similar stuff.

I surely can relate to living alone and paying the bills and how hard that has become because I am doing the same. I too cannot afford some of the professionals who might be able to help me - I am really at rock bottom financially trying to pay medical and other expenses. And I completely agree with you that staying out of depression and for me panic is a big accomplishment everyday. I am fighting the urge to go back to a neurosurgeon ... my back just seems to get nothing but worse and my stress levels are likewise getting worse. Anyway, I hope u don't mind if I stay in touch with you from time to time. I hope we both find some relief. Good luck to you.

 

[eightball776]

Latest update... after reaching 25mg of Prednisone, the pain returned with a vengeance. I jacked it back up to 40mg & I'm 85% better. Rheumatologists are unable to give a definitive answer about the Crohn's Disease role in the back pain, but it is clear that as long as my immune system is in high gear & inflammatory markers are out of control, the pain is at its worst. I have to admit that all of my recent experiences are combining to diminish how I see the role of TMS in all of this. I can experience/identify such a direct link between the pain & my steroid intake, activity/fatigue level, but when it comes to the link to the psychological...sure, my back muscles are tighter when I'm anxious/stressed, and I definitely believe my nervous system is in a heightened state just as a result of all of this time spent dealing with chronic pain (the Hanscom position). I also think the steroid & pain killer dependencies combine to cause hyper-analgesia and a drastic change in how I experience pain. Yet if I can't get a clear picture of how much of this is mechanical/related to that impinged nerve root because I can't get to a place of reasonable stasis (where my blood test is somewhat close to normal), and no one will operate until I get off of the steroids (yet I can't walk if I do & it's probably another 16-month insurance battle before I can get my hands on another biologic medication), I'm just stuck with high-dose steroids & everything that comes along with it. The side effects are already driving me crazy but they are still better than not being able to walk. I am willing to continue the psychological treatment avenue, especially in psychotherapy, but all of the above has also combined to really make financial resources tight...so tight that even psychotherapy is unaffordable at the moment. All of this combines to produce a great deal of stress, I know...but I feel like I'm more convinced than ever that I won't be able to duplicate the same success I had all those years ago when I first discovered Dr. Sarno.

 

[Duggit]

Rheumatologists are unable to give a definitive answer about the Crohn's Disease role in the back pain, but it is clear that as long as my immune system is in high gear & inflammatory markers are out of control, the pain is at its worst.

The article below is not about Crohn's Disease and is not an easy read because of all the technical terms used, but it discusses cutting-edge research on the role of an increase in proinflammatory cytokines produced by immune-like glial cells of the central nervous system in causing chronic pain:

https://www.the-scientist.com/features/glial-ties-to-persistent-pain-30148 (Glial Ties to Persistent Pain)

 

[eightball776]

Thanks for sharing that insight....I did find some journal articles like this one that make the connection between Proinflammatory cytokines & Crohn's. It's also not an easy read! From what I was able to understand, the argument for putting most of my eggs in the basket of the next dangerous/expensive biologic immuno-suppressant to rely on to squash the underlying autoimmune process that seems to be the trigger for everything. We can debate how much of that process is exacerbated/sustained by repressed stress/emotions, but once the ball gets rolling, no lifestyle change or psychological awakening can right the ship. Living with this disease for 35+ years now has definitely taught me that. The main questions to answer - 1) How debilitating will the back/leg be when that elusive homeostasis is reached. 2) What is the contingency plan should that balance take a very long time or never to reach? and 3) If the pain remains disabling after the autoimmune disease is under control, does that mean the best next step is indeed surgical.

I have little doubt all of the personality traits & reasons people develop MBS played a major role in starting this whole process..it's just that the treatments for TMS are just not enough to roll it back even if they might be enough to prevent it from happening again should I manage to regain that part of my health. If I got a good indication that surgery would help even if the cause were more psychological than mechanical, to me that doesn't change the equation at all when making that decision. I hope this is easier to follow than I suspect it might be..these are not simple concepts and getting them across in writing is definitely a bit harder.

All of this combines to leave me ... still trapped in a box with no near-term answers. That is what makes me most often lean into the following revelation: I have to find a way to extract some joy out of life...some level of acceptance and modified existence that makes the right now not just tolerable, but enjoyable. What if this is as good as it gets? It's not a matter of being pessimistic I don't think, but just a pragmatic approach. The greatest threat day-to-day is depression, hands down. That is the demon chasing me every hour of every day, fed by the narcotics/Prednisone roller coaster. Succumbing to that results in a major setback - that's known. Yet the only way to avoid it (and prevent it from turning into RAGE) is to just try. Keep on trying to do the things I want to do. I've had a trip planned for September that involves getting on a dirtbike. I haven't done that in 2 years, but now that I know I can avoid the pain with the right cocktail of drugs, I un-cancelled the trip. If I pull it off, I'll have gone from wheelchair to motorcycle inside of 2 months. F*&k it...worst that can happen is I need a medevac after I pass out from hypoxia. At least I'll have tried. I think that might be the newest perspective ... and quite possibly the most dangerous ... the disappearance of fear. That could also be a sign of depression or worse an irresponsible attitude towards my own safety...and a sign that my life/health/safety is worth less because I see less value in the overall quality of my life. I also live hour-to-hour, day-to-day, which is why all of the warnings about the side effects of steroids (long term) do not phase me in the slightest. I just want to feel better now and I'll consume just about anything that has a chance to make that happen. OK, this is getting dark, so I'll end here..thanks for listening!

 

[Timbercat]

This is just my opinion but I dont think the disappearance of fear in this case is dangerous. You seem to actually want to go on this dirt bike trip. So go! And dont think about a medevac and hypoxia and terminal depression. That's all funny stuff that u wrote and no doubt comes from your long history of being in the medical system and having way too much shit happen to you. It's not like you're going to do an Evil Knievel over a bus or something, are you? You seem like a very introspective person. I think all that analysis and examination can be very healthy except when we turn it on ourselves negatively. You seem to go very quickly from a positive statement to a negative. Are u doing any biking to prepare for this trip or are u just going to go for it?