New member - input welcome

[BaxterBean]

hi everyone - I'm new here and was hoping for some input from experts on what I suspect is likely a relapse of TMS affecting my low back.

Short history: I've had low-back pain intermittently for roughly 25 years. Mostly I'm fine but every so often it gets really bad. Imaging shows some moderate disc degeneration at L4-L5 and some mild disc protrusion in L3-L4 and L5-S1 but nothing dramatic and the MRI results haven't changed over time. I initially tried all the usual medical stuff - PT, chiropractic, etc - but nothing provided lasting results. I discovered Dr. Sarno's book about 7-8 years ago and concluded TMS is the most likely diagnosis. I definitely have a "Type T" personality! Since then, when my back started to act up, I would re-read several sections of the book, repeat the daily affirmations for a bit, and things would resolve. I had a pretty bad flare in 2024, probably related to work stress, and fell back on some conventional things for a bit but then got back on track with the TMS approach and got better.

Current situation: In mid-March, I had probably the most serious flare I've ever had - I was literally yelling, the pain was so bad. Reading the book and the affirmations did nothing. I happened to be seeing a PT for other reasons so I talked to her about my back and she diagnosed SI joint instability and gave me some exercises (very mild as the pain wouldn't allow much). I started getting better but then relapsed badly after about 10 days. Ended up on muscle relaxants and Aleve just to get through the day (and night).

My questions:
1. I accept that the disc issues aren't causing the pain - it doesn't make sense that they would be the cause since the disc changes are there all the time and my pain isn't. But that knowing isn't helping me deal with 10/10 pain from severe muscle spasms. I find myself having much more of a "fear" response to this pain than I have in the past, and I know that's counter-productive. When simple "education" isn't working, what are suggested next steps?
2. My understanding from Dr. Sarno is that the physical component of TMS is due to oxygen deprivation. He's pretty clear that there is no inflammatory process or other physiological changes. But the most helpful thing for me has been OTC anti-inflammatory meds. Furthermore, the PT and physicians who have examined me clearly find palpable muscle spasms, trigger points, and spinal instability, which suggests something physical is happening in my back even if something psychological/neural is the root cause. Has thinking around inflammation in TMS changed at all since the original work?

I just bought David Schechter's MindBody Workbook to try that approach and am looking to see if there are any TMS-focused therapists/counselors in my area who might help dive deeper into the emotional vs intellectual aspects. Any additional feedback or ideas welcome! Thanks all!

 

[Mani]

My understanding from Dr. Sarno is that the physical component of TMS is due to oxygen deprivation.

I’m pretty sure this is outdated.

I’m just gonna let the experts take care of ya.

Most likely the first tip will be to start the SEP

Good luck! Hope I’ll see you around

 

[Cactusflower]

Why else are you seeing a PT? Is that reason TMS or is it simply reinforcing the idea that something is "wrong" with you?

What else is going on in your life that causes you stress or anxiety? How are you feeling aside from the relapse?

"My understanding from Dr. Sarno is that the physical component of TMS is due to oxygen deprivation." No, this is not and never was the true reason...in a way. When people experience anxiety, their breath rate changes and we may either have a little lower C02 or have more (because we don't exhale fully) - it's simply part of the fight/flight mechanism.

My suggestion is to start going through Dr. Schecters book - and if you are struggling and need re-assurance, email him and see if you can book a call or Zoom. I'm not his patient, but I've seen him speak, and he is re-assuring. Personally, I think that if you are having relapses you might not attend to your emotions and your stress as much as you need to. You may have personality traits that tend to assist the build up of stress (interpersonal skills and understanding your traits and where they can help or hinder you can be very valuable). You may have some deeply held beliefs that (may be subconscious or unconscious) that keep you in certain patterns - especially perfection (since you mention "type T" personality).

I'd steer clear of focusing so much on the physical. Your focus on the physical is a pointer to the fact that you still believe on some level that there is "something wrong".

@Mani suggested the free SEP here, and Dr. Schecters book is very similar - there are differences but I don't think that matters much. As you are working through the book you might explore ways to move your nervous system from fight/flight to rest/digest - for some people that's sports, meditation, music, writing, walking in nature, creative hands on stuff: woodwork, art, craft - things that get you out of your head a little bit. You might also explore a little self-compassion if you tend to be hard on yourself (even in subtle ways) - relapses are tough, they suck!

I found that learning some interpersonal skills (that TMS work doesn't teach eg. boundary setting and keeping) and figuring out how to use things like perfectionism to my advantage (this is a method called Gallap, generally available for professionals. I just read up on some of the gysts of it and use them to my advantage!) and disengage where they don't serve me has gone a long way after doing the "meat and potatoes" work of TMS stuff.

You'll get this!

 

[Adam Coloretti (coach)]

Your focus on the physical is a pointer to the fact that you still believe on some level that there is "something wrong".

Agreed - TMS can cause real physiological changes, but if you agree that the psychological is the root cause, then that's the answer and you don't need to focus on what it's causing (unless it's medically dangerous, but 99% of the time it isn't). If the solution isn't in the physical then what TMS is producing physiologically isn't all that relevant for recovery.

 

[BloodMoon]

Hello, @BaxterBean

Personally, I think that mild hypoxia is one of the ways (i.e. ‘mechanisms’) that the brain employs when it causes symptoms. Two reasons, from my own experience, for why I think this is that with my own widespread muscle pain diagnosed by the medical profession as ‘fibromyalgia’ (which was actually mind/body/TMS) was temporarily relieved with hot packs and chiropractic treatment (chiropractors claim that their adjustments improve blood flow, which I didn't know about at the time of my treatments) and heat also improves blood flow. To me this explained the seemingly inexplicable regarding my symptoms and started me on my recovery ‘journey’ from being bedridden (for a total of over 18 months) and housebound (for many years) to now being able to function pretty normally by comparison.

Regarding inflammation, see my posting here: https://www.tmswiki.org/forum/threa...ood-as-the-action-you-take.33433/#post-170886

I find myself having much more of a "fear" response to this pain than I have in the past, and I know that's counter-productive. When simple "education" isn't working, what are suggested next steps?

First, I suggest for inspiration, take a look at Dan Buglio’s webpage here, in particular page down to see the photo of his skewed back and torso: https://www.danbuglio.com/11-years-of-pain. Dan recovered from mind/body back pain and spasms (after 13 years of suffering) using mind/body techniques and has a YouTube channel called ‘Pain Free You” where he uploads a video every day to encourage people on their ‘journey’ out of pain and other mind/body symptoms.

With regard to the aforementioned photo, that is how my own body contorted on numerous occasions (before I got into mind/body work). In my case, when the spasms torqued my pelvis out of line, the muscles then set like concrete keeping my pelvis painfully skewed in that position and rendered me unable stand or walk, hence bedridden due to the excruciating pain.

My bedridden period was quite a number of years ago now. However, I admit that the thought of the debilitation caused by such spasms still frightens me (this fear I will address below) so I understand only too well where you’re coming from.

The way I have kept spasms at bay is by taking ‘baby steps’ with my movements. From being bedridden I could only stand for a few minutes, which I gradually increased by adding just a minute at a time over days, to weeks, to months. I am now able to do moderate exercise, whilst standing in front of the TV, for two sessions of 35 to 40 minutes a day plus I walk about a kilometre a day and I potter about my house doing chores etc. Taking things in baby steps like this kind of goes ‘under the radar’ so as not to frighten your brain. I say this because that’s what goes on with some people with mind/body symptoms… their brain views certain movements (or even movement generally, like in my case) as being 'dangerous' and you have to teach it otherwise, i.e. that there’s no danger, you’re safe. And that is how Dan lost his symptoms and got better; he got his brain to feel safe.

With regard to the brain being fearful, in addition to Dr Sarno's pioneering work, Pain Reprocessing Therapy (PRT)—developed by Alan Gordon LCSW—builds on this foundation with evidence-based techniques to actively retrain the brain's pain pathways. PRT uses 'somatic tracking', safety reappraisal, and neuroplasticity insights to reinterpret pain signals as non-threatening, achieving clinical results like 66% pain reduction or elimination in studies. You can see about PRT here in The Pain Recovery Program at https://www.tmswiki.org/forum/painrecovery/—a resource created by Alan Gordon, which details PRT through 21 daily modules on 'somatic tracking', pain reprocessing, fear cycles, and brain retraining—building directly on to Sarno's TMS foundation.

I realise that it can be rather muddling, so for your information, I should advise that there are two main programs on this TMSWiki... there's Alan Gordon's (as per the link I've given above) and the Structural Educational Program (SEP)—@Mani has given the link to the latter in his posting above (just click on 'SEP' in his posting).

Most people new to the forum and mind/body work start with the SEP and then, if they need to, they go on to doing Alan Gordon's program, but you can do them the other way around; there are no rules about it.

• SEP: Focuses on Sarno basics and education.
  
  
• PRT (vis The Pain Recovery Program): Targets fear cycles and uses 'somatic tracking' which is explained in the program.

With our individual recovery journeys we may find that there's rage going on that we're not recognising (à la Dr Sarno) and/or fear cycles going on à la Gordon (and Dan Buglio).

With David Schechter I haven't tried his workbook myself, but I understand his approach is fundamentally Sarno-based. However, that said , I'm told that Schechter's guided daily journaling promotes emotional processing and "thinking psychologically", somewhat akin to PRT's safety relearning and pain reprocessing techniques. So it's likely to be a very good place for you to start.

Regarding tackling the fear of spasms, see @Adam Coloretti (coach)'s replies to me about my fear of spasms on this thread, starting with this posting: https://www.tmswiki.org/forum/threads/tms-is-the-perfect-excuse.33456/page-2#post-171117. As you will see, with me, I have recognised that my fear is more to do with the fear of the debilitation that the severe pain from muscle spasms cause, but I have, of course, in the past, feared/dreaded the pain itself (because it was obviously very far from pleasant!).

I trust the above is all clearer than mud - in reply to your seemingly simple questions there was actually quite a lot to unpack, hence the long response! Anyway, I hope that something I've said will be of help to you.

 

[BaxterBean]

WOW - you guys are amazing, thank you! All these comments are so helpful and you've given me a lot to think about. I was going to respond individually to each post but it might be simpler to share a couple overall thoughts here.

Reflecting on @Cactusflower's comments made me realize that I had omitted an important piece of my history (trying to be brief and focused - ha!). About 3 years ago I was diagnosed with rheumatoid arthritis (seropositive). Upon reflection, I realize that's when I completely fell off the "don't think physical" bandwagon. Suddenly I had a "real" physical pain condition (I have seen a few posts on autoimmunity in other subforums here, which is why I'm using the quotes until I learn more). So I not only started "thinking physical", I did so obsessively. I spent hours a day reading the research on RA (biology, causes, treatment guidelines, etc). I scientifically experimented with different dietary protocols, supplement regimens, and exercise approaches, tracking my symptoms daily to see if I could find something to reduce the symptoms. I really wanted to be able to manage the condition with lifestyle change but after 2 years, I gave into my rheumatologist's pleading and started methotrexate in December. It's not working great so far but it can apparently take up to 6 mo to know so I'm not there yet. So, now I'm managing medication side-effects on top of the autoimmune symptoms and, oh yeah, the stress of all that has made my blood pressure go up LOL.

So, in hindsight (and with a deliberate big dose of self-compassion), I realize it's no wonder I had a significant l0w-back/TMS flare!

As to how I ended up at the PT in the first place, I was having some significant shoulder pain and couldn't raise my right arm My rheumatologist doesn't think the shoulder pain is related to the RA and he suggested PT. Of course (again hindsight), I realize now the shoulder pain could have been a TMS manifestation, since I know that's a common "alternative" site to the back. That being said, the range-of-motion and stretching exercise from the PT have restored my ability to reach overhead without pain so I'm pretty happy about that. I do wonder (and this could be rationalization) whether there is a place for PT or exercise training if the focus is on "exercise for overall health" rather than "exercise to fix something that's broken" (since it isn't). Dr. Sarno seems to give some leeway for this approach in his book but I can also see that it could be a slippery slope.

The upshot of my thinking about your responses is that I now suspect the real challenge I'm facing is not only needing to take some additional steps to address the TMS/back pain (maybe PRT, maybe more emotional deep-dive stuff, etc) but that I need to figure out how to appropriately balance managing TMS, which requires taking the focus off the physical, with the reality of managing RA, which does require "physical" things like focused exercises to avoid muscle loss and mechanical joint damage. Not sure if this is necessarily the right place to get answers to that conundrum but y'all have been so amazing already, maybe you have some thoughts on that as well!

P.S. Love the suggestions about leveraging strength-based coaching @Cactusflower and the "baby steps" to work my out of the fear of the severe pain @BloodMoon. I'll also check into all the links you posted. Thanks again.

 

[Cactusflower]

@JanAtheCPA has experience with an RA diagnoses, so she can help you out there.
I found her advice on RA and her discussions on "Age Rage" very helpful. Myself, I am going through a diagnoses of "severe" osteoporosis - with the severe portions shown on imaging where I have the most chronic pain symptoms.
Yes, I have researched some treatments and stopped after feeling I have a good balance of what my options are and choices I can make (again, thanks @JanAtheCPA !) but don't know if I can even find support for my choices locally.
However, besides being a little scary, it's freakin' aggravating as hell. Look at the chronic pain I've been through, and my fight to feel and function well. I've been through hell and back again and now THIS. And THIS comes with age. Which leads right back to Sarno when he suggests we look at our rang and anger ratios (to living life fully, which I think was another way of saying make sure you do the fun stuff too!) when considering symptoms.
What can I control within this diagnoses?
Is the "stuff" associated with the diagnoses even 'real' meaning does the doom and gloom one reads about (because they never talk about the positive things) happen to EVERYONE, or can I do my best with it mentally, emotionally and physically and also life a life that is relatively chronic pain free associated with TMS? That's the balance, that's where I'm at so I hear you.
What can I do? take care of myself: eat well and meet nutritional needs of a human body, exercise and keep fit and strong, limit my stress by working on the TMS stuff and not creating more internal stress, rest when needed. Do fun stuff, hang out with friends get in some nature when you can. Have some compassion for where you are in life and do your best: not your most perfect, not exceeding all expectations and standards and doing it at 150%, but simply your best. The rest is the unknown adventure of life!

 

[BloodMoon]

I do wonder (and this could be rationalization) whether there is a place for PT or exercise training if the focus is on "exercise for overall health" rather than "exercise to fix something that's broken" (since it isn't). Dr. Sarno seems to give some leeway for this approach in his book but I can also see that it could be a slippery slope.

If you are prescribed exercises by a PT who isn't mind-body aware, they will more than tend to assess, talk about and describe your pain, stiffness and/or other symptoms in terms of a physical cause, e.g. as 'misalignment', 'muscle imbalance' etc. Those things may, of course, be going on in the body too, especially if we have been avoiding certain movements due to mind-body symptoms, but their words influence our brains and if we're not careful we can forget about the mind-body cause/aspect. So, in continuing with PT, you'd need to keep reminding yourself of the latter.

I was thinking that you might like this book Arthritis: Stop Suffering, Start Moving by Darlene Cohen (https://www.amazon.com/Arthritis-Stop-Suffering-Start-Moving/dp/0802774660). Cohen was certified movement therapist and Zen teacher. The book is about the movement therapy program—via small, mindful movements—that brought Cohen back to a fully functional life after being severely debilitated by rheumatoid arthritis at the age of thirty-five.

Another of her books, which also may perhaps interest you, is called Turning Suffering Inside Out which is mind-body orientated (https://www.amazon.com/Turning-Suffering-Inside-Darlene-Cohen/dp/1570628173).

I'd suggest considering regularly practising tai chi or qigong. My late father had late onset RA and was on methotrexate and hydroxychloroquine. It took a little while to sort out the appropriate dosages for him with regard to side effects and effectiveness, but once his doctors did, he led a full life (suffered little to no pain) and took up tai chi which was wonderful for his general health along with his mobility. He was still driving his car up to a few months before his death at the age of 94 from Covid, and only stopped driving his car due to the side effects of drugs for prostate cancer and not because of the RA.

 

[JanAtheCPA]

So, now I'm managing medication side-effects

Okay, so here's my RA story in short: I was diagnosed with sudden-onset, late-in-life, stress-induced RA in June 2020 (the year is significant) and I've been on methotrexate since then - with no side effects that I can discern. My CRP was over 7 when I started on 15mg of methx per week, and it fluctuated for the next six months as I went on and off steroids to handle flares. At the end of the year we upped the dose to 20 mg/week which has been working great ever since, with regular blood tests showing CRP hovering close to zero, and I never resorted to the prednisone again.

I now can relate occasional flares to stress, and they always go away in less than 24 hours because I don't worry about them. They usually build up during the day and are very painful by bedtime so sometimes I'll apply diclofenac gel to the affected wrist or hand, mostly as a visualization tool, and it will be fine in the morning. I have never used either the full amount or the full two weeks per the instructions, which my rheumatologist thinks is just fine. As I said, it's more like a tool to visualize calming the inflammation. I also take the recommended 1gr of daily folic acid to counter side-effects (my rheumatologist told me that a cancer patient might be on upwards of 500mg of methotrexate every week and they aren't allowed to take folic acid).

When I was diagnosed I did consult well-known TMS doc David Schecter, MD, who said he'd seen RA remission in TMS-aware patients, but that I really did have to take the methotrexate or risk serious physiological damage. I had to admit to myself that I didn't have it in me to commit to the amount of mindfulness practices it would take to do it on my own, partly because of the pandemic-related stresses I was dealing with, so I got over myself and decided that it wasn't the end of the world. Which was a good decision since neither the state of the world nor my extreme sensitivity to world affairs have improved since then.

A mammography technician told me a couple of years ago that her mother has been on methotrexate for 40 years.

So here's a question for you: is it possible that your perceived side effects are actually TMS? Never forget that your brain is fully in charge of all physiological sensations and processes. My favorite question for my TMS brain is: "Is this necessary?"

It's been my observation for years, even "before Sarno" (which for me was in 2011) that virtually every medication contains a list of non-alarming side effects which "might" be experienced - and that it's the same as any list of anxiety symptoms. My (ex-) husband and I have always laughed about how we don't get side effects from meds, because we don't believe in them - which I now understand is probably because we do our research, follow instructions, and don't give in to anxiety when agreeing for whatever reason to take a medication. The underlying condition alone is enough to provoke anxiety, after all.

 

[Sita]

...he led a full life (suffered little to no pain) and took up tai chi which was wonderful for his general health along with his mobility.

Good for him!

 

[BaxterBean]

I've been through hell and back again and now THIS.

I totally relate to this @Cactusflower! The "age rage" thing is real, especially when we've spent a long time getting to a positive place. Definitely one of the key emotions to work on for me.

 

[BaxterBean]

I was thinking that you might like this book Arthritis: Stop Suffering, Start Moving by Darlene Cohen

Thanks for the book suggestions @BloodMoon - they look like they would be very helpful. I also appreciate the story about your dad's experience with RA. It is unfortunately rare to hear positive stories of people effectively managing it and living full lives - all that gets posted/discussed are the horror stories (kinda like restaurant reviews...only the people who are unhappy/angry bother to write reviews LOL). I know there are lots of people doing really well - even when diagnosed at a young age. One of my renewed goals is to focus on living joyfully and leaning in to life despite the diagnosis - it's a turnaround because I was really starting to "shrink" my world and goals before this.

 

[BaxterBean]

Never forget that your brain is fully in charge of all physiological sensations and processes. My favorite question for my TMS brain is: "Is this necessary?"

Thanks @JanAtheCPA! Lots to unpack in your post. I attribute the onset of my RA to pandemic-related stressors and concurrent life stress as well. I started on a pretty low dose of methotrexate (7.5 mg/wk) in December. Now I've worked up to 15 mg/wk because things weren't improving and really hope I can level off there but we'll see. Interestingly, my inflammation markers (CRP, Sed rate) have never been high so I can only use symptoms as my gauge of whether the MTX is working. At this stage of acceptance, I admit I totally agree with Dr. Schechter's advice and your decision to stay on the medication AND work on the TMS stuff to avoid long-term damage.

And terrific points re applying the mindfulness and TMS approach to the side effects. So far, my experience has been pretty mild with side effects but I do have a "worry" about increasing the dose making things worse that I have to work on. As you say "Knowledge-Belief-Faith". Thanks for the thoughts and the reflection questions.