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TMS on NPR

fern

fern

Well known member
YES! OMG, @fern, this is awesome for so many reasons, I am really excited! I am bookmarking this, and I think everyone should read or listen to it. EVERYONE.

Some highlights (my bolding):

Devyn was going to do physical workouts five to six hours a day, so it was absolutely going to hurt. But Fox explained they were going to studiously avoid talking about the hurt because, "the focus is not on pain in the program — therapists are going to ask you 'Are things easy, medium or hard?' "​

Easy, medium, hard. This bland neutral language was necessary because the whole point of the treatment was to draw attention away from pain. So Devyn, her mother, and even the physical therapists charged with putting Devyn in pain, should avoid speaking the word 'pain' aloud whenever they could.​

... they get them ready for the pain their child is about to suffer, explaining that there's a "difference between hurt and harm."​

"We try to tell families that is very real pain that they're experiencing. But it is not any longer a signal of ongoing tissue damage," ​

Devyn started fine but about 30 seconds in, began to have an asthma attack. Her breathing got more and more labored, until she was gasping, struggling to get the air she needed. She told the physical therapist that she probably should get her inhaler, but since inhalers are medicine, the therapist directed Devyn to simply walk around the gym and calm herself down.​

Later, when Devyn got a nosebleed, the therapist signaled her to continue with her workout. Again she did not want Devyn to linger over the problem, to give more attention to pain.​
 
My diagnosis was amplified pain syndrome and it’s definitely TMS! Love that there are more and more articles and information about this
 
So I just listened to this! I have some thoughts- first off, it's great that TMS ideas are going mainstream, especially for a podcast like Invisibilia that is so popular. I hadn't heard the diagnosis called amplified pain syndrome before, but clearly its another name for TMS that some mainstream MDs have picked up.

I was also really interested to hear about the program the girl went through- honestly, I had no idea that there were programs outside the TMS community treating chronic pain in this way! It was good to hear that they included the component of emotional expression and therapy and linked that to pain. It wasn't clear to me whether the girls were explicitly told that the pain was primarily caused by psychological factors, but it seemed that the medical team have a solid understanding that it was.

I really liked that the conclusion of the podcast was linking our pain epidemic to the very same mindset (increased focus/attention on pain) that Sarno discussed in his work! I wish they had got hold of Sarno's work and the TMS community. I'm wondering if these doctors who run the treatment program are linked up with the PPD Association at all, or the Curable app?

As much as I liked the podcast, I was a bit taken aback at the physical aspect of the program- they said it was 4-5 hours of very intense exercise per day (supervised by a PT) that frequently made the girls vomit or have other intense reactions. I know that the "go all out and push through the pain" approach works really well for some people with TMS- Steve O writes a lot about how he chose to do this. But I truly believe this is dependent on the person, it wouldn't have worked at all for me and certainly wouldn't for everyone with TMS. If someone had forced me to exercise until I vomited, regardless of the reason, I would have walked out. A lot of us need a gentler, more stepwise, self-care type approach to our TMS. Another note is that some people who have TMS also have a history of some disordered eating or over-exercise (myself included), and this approach might be triggering.

I think it's fine for some people to personally choose to self-treat their TMS this way if they want, but being told by authority figures to go through this kind of program might be traumatic for some. It seems in contrast to the way that clinicians like Alan Gordon treat the pain, or the way I speak about it to others- you must feel that you are safe for the pain to diminish. I'd be interested to hear how other girls felt about the program after going through it.

All that being said, I also noticed that they used the approach of not talking at all about the pain and avoiding conversation about pain at all, which I think is generally positive- a very similar approach to David Hanscom's method.

Glad we're having some dialogue about this here, and that TMS ideas are maybe starting to go mainstream!!
 
MindBodyPT said:
they said it was 4-5 hours of very intense exercise per day (supervised by a PT) that frequently made the girls vomit or have other intense reactions.
Click to expand...
MBPT, I didn't see this in the written story so it must be in the full audio program.
MindBodyPT said:
If someone had forced me to exercise until I vomited, regardless of the reason, I would have walked out.
Click to expand...

I love most of what you wrote about this program, MBPT, but I'm going to play devil's advocate a bit here. Mind you, I didn't listen to the podcast, I only read the article, which although it didn't mention vomiting, did talk about other intense reactions.

From the article, it's clear that the program directors know it's not for everyone. It's also clear that the only disorder they are treating is this amplified pain thing, and I'm sure that the participants are screened carefully.

For anyone with a mind-body pain disorder who has completely stopped exercising, exercising past their comfort level is known to be the best way to jump-start the brain reconditioning. This is not news to followers of Dr. Sarno, of course. And I'm reminded of Jerome Groopman's rehabilitation for back pain as he described in the last section of "The Anatomy of Hope", where he went to a pain clinic that made patients pick up piles of heavy blocks in order to eliminate their fear of back pain.

The designers of this program know that even supposedly alarming reactions to the activities, such as the asthma attack and the nosebleed experienced by the girl who was profiled, along with other intense reactions like vomiting - to say nothing of the pain that brought them to the program in the first place - are not, in and of themselves, harmful, and that they are stress-based. The program is teaching the participants that such reactions are not worthy of medical attention, only of "take a minute and calm down" attention, which is invaluable training. The participants will achieve lifelong benefits if they learn that these reactions can absolutely be controlled, if not eliminated, with mind-over-body training.

Just my take!

XOXO
~Jan
 
@MindBodyPT, I had a similar criticism of the article that I can write out now that I'm not on my phone. This was a profile of such an extreme treatment protocol, which I'm sure makes for an interesting news story. But if the author has any awareness of any TMS-like approaches to chronic pain of a less debilitating and extreme nature, she didn't refer to it at all. I think it was a missed opportunity to enlighten people about non-medication-based approaches to chronic pain that don't involve a three-week intensely painful inpatient experience. The connection was completely missed! WE here can be excited to see that physicians are starting to come around to TMS-like approaches to pain, but I think the general population would read/hear this and just think, "Wow, that sounds intense! Glad I don't have amplified pain syndrome!"

I had kind of forgotten about the issue of these being older kids who would still ultimately be submitting to their parents' authority. I was imagining these kids being fully informed of the process and choosing the protocol for themselves. But if a kid saw that her pain was really stressing her mother out, might she agree to the treatment protocol even if deep down she didn't really want to do it? I can see that, and that would be super problematic. And would a teenager be as willing as an adult to tell a physician they'd had enough? (Editing this part because I didn't like my wording about vomiting during training. I'm going to delete all of that and say that I hope kids are carefully screened for ED or over-exercising. I think vomiting from exertion can be a normal and not extreme side-effect of intensive training, but since it can absolutely be a trigger, I hope the screening is as robust as it should be.)

I do wonder if "force" is the right word. Assuming the families have consented and are informed about the intensity level and side effects and the physician acts more as a coach than as a torturer, I can see it feeling very different to have strong/extreme physical responses to the training. In fact, I can't see it working at all if the kids feel forced into the work. It certainly wouldn't work for me. Kind of like when I did internal PT for the pelvic floor. It hurt, and the pain would have felt scary and unwelcome and I would have quit immediately if I hadn't trusted my PT, her expertise, and her attentiveness to my experience. So whether or not these experiences are extreme or traumatic may depend on the attitude/attentiveness of the coach, and the expectations and boundaries set with the kids beforehand. I imagine it also helps that they are able to process the experiences with a psychologist throughout the program. But I don't know!

That said, I TOTALLY agree that this approach can't possibly be suitable or even safe for everyone. I am right there with you - grit your teeth and crush it through the pain may be good for some of us, but it's bad for others. I hope there is good screening for determining who might be a good match for the approach (and for those who may experience trauma as a result). And I hope research is being done to help treat those who need a less tooth-gritting approach or don't have three weeks to devote to an intensive like this.

With all those caveats, though, I'm really glad to see TMS-type approaches like this, with all the pieces of the treatment framework that we're familiar with, being discussed in broad-reaching media. I REALLY wish they would have connected it to less extreme conditions and treatments that fall under the TMS umbrella. But the fact that an article like this was written at all means that those days are coming soon enough!
 
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Glad to have some good dialogue around this article/podcast! A little healthy differing of opinions/criticism is always good. The podcast did go into the 4-5 hour per day exercise and spoke about the vomiting, it was a more in-depth look. I agree with you, @fern , that this was a more extreme variety of TMS and also the treatment and made for a good story. I'm also really glad TMS is being written about in mainstream media!

I think we're all going to have different feelings/reaction to the idea of exercising past comfort, as @JanAtheCPA mentioned. I actually agree with you that it can be the best method of getting past your TMS if you've stopped exercising! I think it's all about the attitude that the practitioner brings to the session, if one is working with a clinician, as @fern mentioned too. I've done this with some of my patients to a degree (but not to the level that this program did). I think making sure the client knows you have an empathetic attitude is key. I got the feeling from the podcast that it was a pretty boot-campy type attitude, which isn't my style at all, but maybe does work well for some people. "Force" probably isn't the right word...but I think there could be an element of pressure for some.

It would be interesting to look deeper into different methods of treating TMS, i'm sure different people would respond better to different approaches!
 
hmmm.... I read that article. It stinks to high hell of 'secondary gain theory'. And ultimately by the very name of the diagnosis it is elevating the role and rank of pain. Sarno was clear that he did not treat pain, except with an occasional dose of Pain killers, reminding the people to NOT expect to be in pain very long.

I love the end of the story where it just THUDS... "she's still a six... but they TELL HER THAT MOST PEOPLES PAIN DIMINISHES IN THE FIRST YEAR....and it does" That is called the placebo effect. I can give it to you for free.... and I won't even bill your insurance, no co-pay.

"Therapeutic eclecticism is synonymous with Diagnostic incompetence"
-J. Sarno
 
The article explains the core hypothesis as follows: “If you force the kids to push their bodies until they are in tons of pain, over time, their brains can learn to ignore it, according to Sherry's hypothesis.”

At least this recognizes a role for the brain, though it might fail to accept the foundational premises of modern pain theory regarding the role of the brain in pain, namely, that (1) pain is created by the brain not by the body tissue where it hurts, (2) the brain produces pain when it detects present or potential tissue damage, and (3) with chronic pain, the brain is erroneously detecting present or potential tissue damage when in fact there is no such danger. Alan Gordon in Day 2 of his new program has a nice name for all this: the blunderous brain.

The problem is what to do about the blunderous brain. Even if the approach of Sherry and like-minded physicians works, what an inhumane way to treat the problem. And I question whether it will work over the long term. Even if the teenager treated by Sherry overcomes her pelvic pain, will she be pain free over the many decades ahead of her? Dr. Sarno was well aware of the phenomenon of symptom substitution. Will she need to go through Sherry’s torturous treatment every time TMS returns? We (or at least those of us opposed to torture done for any reason) are years away from judging how successful Sherry’s approach is.

Within the last 20 years, researchers have discovered that it is interaction between the nervous system and the immune system that causes the brain to blunder and create chronic pain. Pain researchers freely acknowledge they still have much to learn about this. Early on, there was hope new drugs could be discovered to shut off this “amplified pain syndrome,” as Sherry calls it. One idea was to find a drug that would shut down the immune system reaction that would be more effective than opiates are and not have the adverse side-effects of opiates. Initially, research funded by major pharmacology companies seemed promising with lab rats and rabbits but so far the pharmacologic approach has gone nowhere with humans.

To me, Sherry’s nonpharmacologic approach smacks of “no pain, no gain.” I prefer Lorimer Moseley’s nonpharmacologic approach that he calls “know pain, gain.” His approach is to explain the neurology and immunology of how and why the brain blunders and also how to stop the blundering by using an introspective tool he calls the “protectometer.” This is not unlike Howard Schubiner’s neural pathway approach, except that Moseley goes into more detail about the neuroscience and adds immunology and the protectometer. (By the way, I think Moseley’s approach is compatible with Sarno’s attribution of most TMS to repressed anger, but I can't explain why without getting more nerdy and more speculative than I have already--so I won't do that.)

For anyone interested in the new and still-developing research on the neuroimunology of chronic pain, there is a recent article (albeit one that is hard to read because of all the technical terms, but I think the gist of it can be grasped without knowing all the terminology) by Moseley’s friend neuroimmunopharmacologist Mark Hutchinson available at the website link below (the article also contains interesting information on the futility of treating chronic pain with opiates):

https://www.the-scientist.com/features/glial-ties-to-persistent-pain-30148 (Glial Ties to Persistent Pain)
 
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MindBodyPT said:
It was good to hear that they included the component of emotional expression and therapy and linked that to pain. It wasn't clear to me whether the girls were explicitly told that the pain was primarily caused by psychological factors, but it seemed that the medical team have a solid understanding that it was.
Click to expand...
I need to go back and listen again, because I felt that they ignored the Emotional Awareness and Expression Therapy (Schubiner's term) that I feel is critical to treatment and recovery from TMS. Yes, they asked the participants to say how they felt, but what I heard was that they were asked to express how they felt about the pain during their exercise only. I didn't hear anything about exploring emotional issues from the past that may have triggered the start of the pain syndrome.

Yes, this program gets right the need to change our relationship to the pain and to realize that the pain isn't harmful and doesn't mean there is something wrong with our body. It is similar to the Graduated Exercise Training that was recommended for awhile for fibromyalgia. There is some benefit in this approach. But leaving out the psychological/emotional repression piece is, in my opinion, why the program didn't achieve recovery for the participants.

There are doctors who are finding their own techniques to treat chronic pain independently. This is how Sarno did it. But unfortunately this approach seems too draconian and incomplete to be effective.

The PPD Association is starting to do more outreach and marketing and hopefully will spread the word more effectively. They are offering an online training for practitioners soon. Hopefully someday teenagers (and adults) won't have to subject themselves to this type of program in the future.
 
All of this is very interesting - I got a very different picture and a much more positive feeling from reading the article. The psychological component is an important part of these programs, but it was only discussed in the last part of the article (naturally, as it's a piece of journalism, the high-news-value stuff is presented first). I was particularly taken by this section:

But while the program is premised on the idea that there are problems associated with the increasing amount of attention our society pays to pain, the answer, Wallace says, isn't to reinstate the puregrin-and-bear-it approach of decades ago.
Wallace believes that when you're unable to name and think about your emotions and don't have the tools to diffuse them, whatever stress you experience is directed at and absorbed by the body. That's an important part of the problem with these girls, Wallace says: They're not in touch with their feelings; they just plaster on what the program calls an "I'm fine" face.
So, Wallace says, one way to understand what's happening to them is that their nervous systems go haywire because they don't have the sophisticated emotional skills they need to manage in an increasingly stressful world.
"What the world expects today of everybody, but in particular coming down to our kids, is so much greater, so much faster, so much more all-day-long, that they are facing far more stress, more hours of the day," he says.
So in the treatment, when the kids are going through their exercises, before and after many of the activities, their trainers ask them for a word that describes how they are feeling. They also complete worksheets and diary entries so they can learn to better articulate their inner thoughts. They're taught breathing exercises, and the program gives the patients both individual and group therapy.
Wallace says kids should have the ability to explore and manage the thoughts and emotions that they need to struggle with, but should also know when — especially in the case of pain — it's going to serve them better to release those feelings and move on.
​
This is pure Sarno, IMHO. Harsh methods or not (and for some people, Steve O's "keep doing it no matter how much it hurts" method is the one that works) - at some point, people who are desperate enough will try anything, including dubious-to-dangerous surgery and medications.
 
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Baseball65 said:
I love the end of the story where it just THUDS... "she's still a six... but they TELL HER THAT MOST PEOPLES PAIN DIMINISHES IN THE FIRST YEAR....and it does" That is called the placebo effect.
Click to expand...

In that case, everything we do here is the result of the placebo effect.

The good news is that this is the case! Because, look: the placebo effect is the unconscious action of our minds on our physiology. Among the many tools we use to heal ourselves, one of them is to consciously harness this power. This is being seriously researched, which I think is very positive news. (Unfortunately, there is no money in it for Big Pharma, so it will be fought against).

In any case - whether these programs are using questionable methods or not, what they are doing is harnessing the power of patients to heal themselves. The programs call for patients to overcome fear of physical activity, reject medications and other tangible crutches, and and to retrain negative brain conditioning. I'll say it again - methods aside, this is pure Sarno.
 
My negative assessment of their methods was pointing out that the girl in the story got no real symptom recovery (she is still a six) and then after her parents check has cleared the bank dismissively ONLY handed the placebo effect. Meanwhile Neither her nor her helicopter Hellish stage Mom (I am around Dance a lot...Dance is little league X 100 ) have an inkling of the rage she harbors manifesting her Mom's failed ambitions... or whatever other dysfunction is present. Obviously something is not being dealt with to bring on such a gnarly symptom (My first thought was 'growing pains' e.g. Sarno Chapter One.)

What we do isn't the placebo effect BECauSE I have never even MET a TMS professional, bought more than a book (several copies to give away excepted) or done more than was suggested in the text. Nobody promised me anything. No Bedside manner. No drugs. Sarno went to pains to explain why not and used 'book cures' as his proof. He said the Placebo effect was something to avoid and that's why he went 'pure' and removed physical therapy at all.

Placebo effect is caused by the patients belief in treatment. When there is no 'treatment' something else is going on...perhaps similar, but not textbook. I believe we get results because we are actually going in and dealing with the real problem.

IMHO (I have never typed that before... I guess I lack Humility) lol
 
Great discussion. I'd add though that Ozanich really didn't think people needed to go through the "boot camp" he put himself through and regarded it as a mistake made in his recovery process. As with most things, there's probably a balance to be struck. Sometimes the soothing/calming/relaxing approach maybe isn't confrontational enough, and then there's the other extreme, where you're making kids puke. :) And as Baseball said, you might still be missing the core of the emotional issue.

One thing I really did like in what Jan quoted was when they mentioned the "I'm fine" face. When you say "I'm fine" and you're really not, then you are well experienced with repression. If they build on that, they'll have a hell of a program.
 
Ellen said:
I need to go back and listen again, because I felt that they ignored the Emotional Awareness and Expression Therapy (Schubiner's term) that I feel is critical to treatment and recovery from TMS. Yes, they asked the participants to say how they felt, but what I heard was that they were asked to express how they felt about the pain during their exercise only. I didn't hear anything about exploring emotional issues from the past that may have triggered the start of the pain syndrome.

Yes, this program gets right the need to change our relationship to the pain and to realize that the pain isn't harmful and doesn't mean there is something wrong with our body. It is similar to the Graduated Exercise Training that was recommended for awhile for fibromyalgia. There is some benefit in this approach. But leaving out the psychological/emotional repression piece is, in my opinion, why the program didn't achieve recovery for the participants.

There are doctors who are finding their own techniques to treat chronic pain independently. This is how Sarno did it. But unfortunately this approach seems too draconian and incomplete to be effective.

The PPD Association is starting to do more outreach and marketing and hopefully will spread the word more effectively. They are offering an online training for practitioners soon. Hopefully someday teenagers (and adults) won't have to subject themselves to this type of program in the future.
Click to expand...

I think they did give the kids individual psychotherapy, in addition to the more surface-level asking of their emotions during exercise. I don't know what the therapy consisted of (podcast didn't say) and if it was anything like Emotional Awareness and Expression therapy. So there seemed to be a grounding in the understanding the pain was caused by emotional repression, but we don't know exactly what went on.

I also agree with @AnonymousNick's assessment above- there is certainly a middle ground between tough love/boot camp style rehab and the soothing/calming approach, with different people responding to different places along this continuum. Its hard to know what went on for each kid in the program.

I came upon a posting about this article on my Facebook feed, and couldn't help but look at the comments (which I usually NEVER do!). There was a lot of dialogue, with a couple people who were parents that put their kids through the program. I recall one woman saying how much it helped her daughter, and one person who was very angry at the program for ignoring some of her daughter's pain that turned out to be an infection of some kind and spoke about how it was a terrible experience. I can see how something extreme like this would be so polarizing.
 
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