I'm not sure how to proceed from here

[Ellen]

I guess the point I'm trying to make here is that the goal in TMS recovery is to lead a more fulfilling life. I fear that coming up with arbitrary goals of standing longer, running further, etc is just putting a pointless, arbitrary physical goal on things. I know this gets confusing when practicing the technique of challenging one's physical limitations. There is a place for this. But I think it's important to keep in mind that it is a brief means to an end and not the end goal itself.

 

[music321]

It was a sudden, unexpected incident and your lizard brain reacted (probably with the bracing of your muscles) and certainly with fear and fright. My husband, when he was driving a car that was unfamiliar to him, misjudged the width of the vehicle and hit a kerb with the wheels on the passenger side of the car with me being in the front passenger seat and I felt pain for a while afterwards, so I had a similar experience. What I did was to talk to my brain to calm and soothe it and tell it everything was all right. In such circumstances I say to my brain, "thanks for looking out for me, but you're overreacting because I'm safe now" and these days I actually tell it how 'ridiculous' it's being in giving me pain or other symptoms (I experimented and found this works best of all for me). Also, regularly throughout the day focussing on my breath, slowing down my breathing by lengthening my out breaths has played a big part in my recovery, for calming down my lizard brain and nervous system.

I was bed bound for a total of over 18 months and housebound for many years and, during and over that time my body would have certainly experienced 'deconditioning', but that did not stop me from progressing to where I am now through taking baby steps. Essentially, I have got better, to where I am now, not knowing what the % split was between 'deconditioning' and mind/body symptoms. I didn't need to know because baby steps works for both; I am living proof of that. As with @Cactusflower, my baby steps were and still are very much about doing everyday tasks (and quite coincidentally, I too started off with peeling carrots, in my case from a tray that I got my husband to bring to me in bed when I was bed bound).

first off, I know perfectly well, but this is TMS. I'm just having such a hard time with all of this.
I have a question for you regarding recovery from MECFS, if you don't mind. The coach that I am involved with is telling me that mecfs is not an issue of mitochondrial dysfunction, energy production impairment, or anything wrong with me physiologically. He is saying that my experience with MECFS is simply the result of the part of my brain that controls muscle function, not functioning properly, as a result of fear.


By the way, I should mention that the primary symptoms of MECFS for me are lack of endurance, and long recovery after strenuous physical activity. I have had pretty much all of the symptoms that other people describe at one time or another, but they're not really an issue now, luckily.


My coach advises that I should simply calm myself down, and push through the feeling of being utterly drained of strength, and utterly worn out. He says that if I do this, without fear, and with the understanding that this is the proper approach, I will train my brain to be safe. And doing this, I will get back to normal pretty quickly.


If his framework is correct, I agree with his proposed solution. However, I can't help thinking that this is something physiological, of course brought on by psychological underpinnings, and that there is something wrong with energy production, the mitochondria, etc.


I know that I had said in my post that I had finally come to a position of accepting that I can push through this physically, but now I'm kind of doubting it again. Don't get me wrong, I know that this is TMS at the heart of it. It's just that, if this particular form of TMS does involve a fear response that results in muscle dysfunction, as a result of impaired energy, production, etc., the methods won't work that the coach has prescribed.


Do you think he's right? The reason I'm asking you, is because if you, somebody who has recovered, says that you think he's right, this would do a lot toward putting my mind at ease, and helping me get on with things.



Thanks

 

[Cactusflower]

Obsessing over the physical is part of TMzs. If you are unfamiliar with Dr. Sarno’s work, I suggest you read one of his books like the Divided Mind. You will see many stories (and recoveries) of people who’s minds distracted them with physical symptoms and “causes” so that they did not see the real reason for their fears and anxiety (which is subconscious rage). Your coach is about 95% right on target but hasn’t touched on the underlying emotional context that led to you having these symptoms. Their advice is sound, and adding the free Structured Educational Program found at TMSwiki (scroll down the page to find it) to do the emotional work, should help.
You may also get some assurance from Rebecca Tolin’s YouTube videos. She is recovered from MECFS -

 

[BloodMoon]

However, I can't help thinking that this is something physiological, of course brought on by psychological underpinnings, and that there is something wrong with energy production, the mitochondria, etc.

I am still a work in progress and not completely symptom free (but I almost am) and all I can say is that if there were something wrong with my mitochondria, how did I manage to go from bedridden to where I am now (functioning pretty normally) with radically improved levels of endurance and other profound improvements too? (When I was first diagnosed with 'fibromyalgia syndrome' and CFS/ME (years ago) I went down the taking supplements etc., route to improve mitochondria dysfunction and it made not one iota of improvement to my symptoms and I actually gradually got worse; I believe my fearful brain saw all the stuff that I was throwing down my neck etc., as being dangerous.)

if this particular form of TMS does involve a fear response that results in muscle dysfunction, as a result of impaired energy, production, etc., the methods won't work

I think that your TMSing fearful lizard brain is 'doing a number on you' making you think that you have a special case of TMS that's causing stuff to be going on that's not overcome-able because it wants to keep you exactly where you are. I proffer to you that you are likely to have 'everything to gain' and nothing to lose in choosing to consider and proceed like you do not have a special case of TMS, nothing to lose in gradually 'baby stepping' your way towards returning to normal life.

 

[Ellen]

If his framework is correct, I agree with his proposed solution. However, I can't help thinking that this is something physiological, of course brought on by psychological underpinnings, and that there is something wrong with energy production, the mitochondria, etc.

I think you're splitting hairs here. You have to address the "psychological underpinnings" whether the problem is primary or secondary.

My diagnosis was fibromyalgia and CFS and I've fully recovered for over 10 years now. Having TMS can wear you out--all that chronic muscle tension takes energy. But you have to treat the psychological to recover.

 

[music321]

I think you're splitting hairs here. You have to address the "psychological underpinnings" whether the problem is primary or secondary.

My diagnosis was fibromyalgia and CFS and I've fully recovered for over 10 years now. Having TMS can wear you out--all that chronic muscle tension takes energy. But you have to treat the psychological to recover.

I might actually be splitting hairs, but I feel that I might not be. That's why I'm posting this response. Please, don't get me wrong, I'm not taking issue with anything that any of you have said. Furthermore, I hope you don't interpret this post as my being contentious. I certainly don't mean to be. I very much appreciate the help you're giving me.


I have tried dealing with TMS for quite a while. It seems like other people are getting better, and I'm not. Clearly, there's something that I'm doing wrong. I'd mentioned what the coach said to me, which seems like it might be the missing piece.


[By the way, I very much hear what you're saying, regarding emotions, and have tried long and hard to get in touch with my emotions. I have gone through periods lasting months, during which I had panic attacks early in the morning, lasting for several hours. This was during a stressful time in my life, and I'm very grateful that they are long gone. I feel that if I was in touch with my fear to the degree that I was having hours-long panic attacks, I was pretty in touch with my emotions. During this period, my TMS only got worse, however.


My coach says, perhaps it's not really about getting in touch with our emotions, but more about resolving trauma, and feeling a sense of safety.]


If I am to proceed with physical activity, as was suggested, my body will have the sensation of being worn out, and left without any strength or endurance. I'm not saying this to be contrarian, or to create a self fulfilling prophecy, I'm just speaking from having done this many times before. I was told by the coach that if I proceed, it might very well happen again, but that I just need to keep going, and then these feelings of weakness will abate.


If he is right regarding the underlying framework of this problem, that it's my fear causing my brain to shut down muscle movement, then it seems like his approach is not only a great one, but maybe even the only one that will work. I need to really show my body and show my primitive brain that everything will be OK.


However, I really don't want to wear myself into the ground and end up back in the emergency room, completely unable to toilet myself or feed myself. I have been profoundly dysfunctional as a result of having pushed myself too hard before. I have fear that if I follow this recommendation, I will end up in the hospital again.


The following is what somebody said to me regarding the "lightning process". This process is basically a brain retraining technique, that convinces oneself that there is no problem, and people who succeed with this program often do so at between three days and two months. Here's what was said:


-----

Thank you for your message.

I continue to be a big believer in the LP. When I did it, my coach didn’t talk about pushing through as such, and Phil Parker’s various podcasts and books suggest “pushing through” isn’t always helpful.

My understanding of the LP is that is supposed that people have got stuck in an emergency response mode. This creates a number of physiological symptoms. Lack of endurance would be classic because your body is devoting its energies to the fight/flight response, not to “enduring”.

What the LP teaches you is how to turn off the fight/flight so that the body’s natural healing can kick in.

From what you’ve said, it sounds like it could be really valuable for you.

I hope this makes sense.

-----


So, from the above, the implication is that this is a physiological response. In other words, if I push myself too hard, I will feel like I'm being worn down, and I will, in fact, be wearing myself down.


However, the analysis of this person might be incorrect. He looks at things from the standpoint of calming down an overactive nervous system. I have gone through periods during which I have drunk a lot of caffeine, and periods during which I have abstained for months. This seems to have no effect whatsoever on my symptoms. I can tell that when consuming caffeine, my autonomic nervous system is more aroused. Either way, there doesn't seem to be an effect on my TMS symptoms. Furthermore, I have heard of people that have meditated for many months without improving. As has been mentioned above, with TMS, it really doesn't matter how long somebody relaxes.


So, I'm thinking this person might have recovered simply because by engaging in this program, he felt a sense of mastery over his condition, and felt that everything would be OK. In fact, this is probably what is actually going on, from my own personal viewpoint, anyway.


Sitting around the house is terrible. Looking back on all that I've lost over many years is terrible as well. I just want to start living again. If I can engage in some normalcy, that would do so much to improve my psychological well-being. I don't like sitting around being bored and lonely.


I also don't like pushing myself to do something fun, such as going out to get a cup of coffee, or some other little pleasure, and then having to lie down in bed for a day because I've overextended myself. Some people have said to me that the only way out of TMS is to start living my life 100% as if I am healthy. They've said that the way toward healing is to go out and get coffee, and do these other little things, and feel worn out. But then, the next day, or at most two days later, to pick myself up and do it again, regardless of how drained I feel. The caveat is, I've been told that if I engage in this path without believing 100% that it is the path, and I will be OK, it will not work.


This is the path that I really want to engage in. I really want to start living again. I'm just scared that it's not going to work. I've ended up in the hospital as a result of pushing too hard before. Just to reiterate, if this is purely a brain based, reaction, and I find myself lying down in my front lawn, unable to move, then I will know that I can simply call myself down, and concentrate on moving very slowly, even if it takes me an hour or two. And then, tell my brain that everything is OK, and get back to normal.


I just want to start having fun, and living life again.


I know quite a few people of commented already, but if you have anything else to add, just let me know.


Thanks again

 

[Diana-M]

Hi, @music321
Have you ever read Hope and Help for Your Nerves, by Clair Weekes? I think it might make you feel a little less hopeless. It’s a great book that explains so much.

My coach says, perhaps it's not really about getting in touch with our emotions, but more about resolving trauma, and feeling a sense of safety.

I think your coach is right. Have you checked out Dan Buglio? Painfreeyou.com He has a book, a support group and daily free videos all focused on this concept. Creating a sense of safety. I think he could give you some great encouragement. You will probably also need to explore emotions because they feed the anxiety. Different TMS camps believe this is more important than other camps. I’ve needed anxiety work and emotional work. Dan Buglio healed without journaling.

The trick is to soothe your nervous system and to challenge yourself to do things, but not too fast. Just find the sweet spot that your mind and body will tolerate. Some people advise to blast ahead and push yourself, but for some of us that doesn’t work. It only sets us back. Trust yourself. And don’t give up.

 

[Cactusflower]

"My coach says, perhaps it's not really about getting in touch with our emotions"

It's acknowledging you have a breadth of emotions and recognizing you haven't been allowing yourself to feel them all - I think a lot of people skirt this issue because frankly, it's easier not to deal with it. Dr. Sarno is right on with this theory. It doesn't mean this is the RESOLUTION to all of the things that make a cocktail of TMS - but it most certainly is a large part of it - and the emotions and the "trauma" - big or little "T" is all rolled into one. It's not separate.

 

[Diana-M]

@music321

Here are a few really good books for you that go into all of this whole topic.

Mind Your Body, Nicole Sachs

Pain Free You, Dan Buglio

The MindBody Prescription, by John Sarno, MD

 

[BloodMoon]

I also don't like pushing myself to do something fun, such as going out to get a cup of coffee, or some other little pleasure, and then having to lie down in bed for a day because I've overextended myself. Some people have said to me that the only way out of TMS is to start living my life 100% as if I am healthy. They've said that the way toward healing is to go out and get coffee, and do these other little things, and feel worn out. But then, the next day, or at most two days later, to pick myself up and do it again, regardless of how drained I feel.

As previously mentioned, there are some people on these forums who would advise to do the above because that's what worked for them, but it didn't work for me. Also as I've said before, my profound improvement from being bed ridden has been achieved by taking baby steps... teeny weeny baby steps towards getting back to normal life. This meant that I never exhausted myself to the extent you are describing.

Imo the trouble is that people (myself at one time included) are not open to thinking and doing small enough. They are not open to very gradually building up to doing what they would have considered (pre mind/body/TMS) to be an easy-peasy to do mere trifle (effort-wise) of an activity by practising individually the constituent parts of that activity... because one more than tends to think along the lines of 'What's become of my life, that I'm reduced to having to do this?' and it can feel like such an uphill struggle...

However, in practising the the constituent parts of that activity so that one's lizard brain isn't frightened of them anymore, those constituent parts are usually constituent parts involved in doing other activities too, which then makes other activities easier and less exhausting to do and from there improvement gradually snow balls.

My journey to feeling better and functioning well began with peeling a carrot and so did @Cactusflower's. Your journey could begin with a cup of coffee (or, of course, something else of your choosing)...

An Example of a Baby Steps Approach With Mindful Coffee Meditation...

With the advice to very gradually bring each element of the café journey into solo practice:

Part A: Home Practice – Mindful Coffee Meditation

From '101 Ways to Find Calm: How to use your body to soothe your mind' by Rebekah Ballagh...

1) Hold a cup or mug of coffee in your hands – or imagine you are holding one.
Notice the shape, weight, and temperature against your palms and fingers.

2) Slowly inhale through your nose, breathing in the rich aroma of the coffee.
Let this mindful breath anchor your focus on the present moment.

3) Exhale slowly through pursed lips, as if cooling the hot coffee before sipping.
Visualize the warmth and imagine the air gently passing over the surface.

4) Pay attention to the gentle warming feeling in your hands as it soothes and relaxes you.
Let this sensory comfort settle into your body, noticing any sense of safety or calm it brings.

Rinse and repeat 1) to 4) numerous times over the days and weeks.

Part B: Graduating to Outdoor Practice

• Practise the same mindful coffee ritual while sitting or lying semi-recumbently on a sun lounger in your garden or on a balcony. Experience the change in environment—soft breezes, outdoor sounds, natural light—while maintaining focus on sensation and comfort.

Part C: Building Towards Café Visit

Preparing and dressing at home with mindful pauses.

Moving into different rooms, then stepping outside your front door holding your coffee and repeating the ritual.

Taking a brief walk outside (driveway, patio, or garden), holding the cup as a “portable safety anchor.”

Visualizing yourself sitting inside a local café, calmly holding and sipping coffee, breathing in aroma, and noticing warmth in your hands.

When ready, practise ordering a takeaway coffee at a nearby café to stay for just a few minutes with your cup, introducing real-world cues while using meditation steps for comfort.

Part D: Café Visit

• Visit the café and savour your coffee at a quiet table, practising the meditation steps with real café sensations.
  
  
• Start with short stays and gradually lengthen each visit, listening to your body and using self-soothing skills.

Tip

• Repeat steps as needed before progressing, always with self-compassion.

Integrating these body-based, mindful techniques can help your nervous system re-learn safety and pleasure, making each step towards your having a coffee in a café goal easier and more enjoyable.

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With regard to needing to have 100% belief that the symptoms are all mind/body and not of a structural physical cause, it certainly more than helps. However, I didn't start off fully believing and I nevertheless started to gradually notice that I was experiencing improvements.

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Regarding the lightning process I wrote this on another thread in reply to someone else who was enquiring about it:

There were no success stories on the Success Stories Forum crediting their recovery to doing the lightning process when I researched it a while back. There are a few postings where people say that they tried it and it didn't help, with one saying that they felt it made them worse and a couple of postings where they said it helped them to believe in mind/body, but they needed to do other mind/body work. I found two postings elsewhere on the forums (not on the success stories forum) that said it worked for them but they didn't give much detail at all. I remember I contacted one of them with a question but they didn't respond. I understand it's an NLP based programme (I did NLP years ago to help me cope with issues regarding my then work - I'm retired now - and unfortunately it didn't help me at all with that, but I know of couple of people who said it helped them with work-related difficulties).