Chronic fatigue syndrome advice, please

M

Mossy tree

Newcomer
I have chronic fatigue syndrome. I am going to recover using the techniques developed by Dr. Sarno. A practitioner in the field of mind-body medicine told me not to try to stay inside of an "energy envelope".

Many people feel that gradually increasing their "energy envelope" (zone of activity tolerance) will allow them to return to health. From past experience, when I've pushed the limits of the envelope, I've crashed, and sometimes hard.

The practitioner said that the envelope was just a fiction of my mind, and I need to push through it (or as he said, "retrain through it"), with the understanding that everything would be fine, and then my brain will learn that I am OK, and I will heal.

I'm reluctant to do this. I understand that chronic Fatigue Syndrome is caused by rage, etc., but is this all just PURELY neurological? Maybe my body IS kind of drained of energy. I think that if I "retrain through", it might not be a matter of just telling myself to keep going. I might have a real crash again.

If I had real confidence in doing this, I'd probably do it right now. Or, maybe the "energy envelope" theory is real, and I need to be careful.

Either way, I'm going to put the TMS skills into practice, and just be calm, and do the brain retraining exercises.

Do any of you have any experience with all of this?
 
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I don't have experience of CFS personally but I have worked with people with various mindbody symptoms including CFS (also a TMS practitioner) and recovered from several years of various symptoms.

First of all, it is so normal to have doubts. Having symptoms for extended periods of time is scary and we have been blindsided by them so often that we are understandably wary of have a flare-up. I remember having periods of confidence and doubts intermingled as I was recovering. I would stop doing certain activities because I was getting intense pain but as soon as I realised it was TMS the symptoms tended to disappear.

I rarely recommend people to 'push through it' -> mostly because often the person doesn't yet have the confidence needed to inhabit the understanding that their bodies are healthy and strong. In my experience, pushing through without confidence easily leads to resistance and greater levels of fear. And as fear creates pain/fatigue that leads us straight back into the TMS cycle. Here are the steps I took for myself and others:

The first step is getting confident that your CFS is TMS. In most cases it is and simple testing can rule out a structural problem.

The second step is practicing TMS skill and using Graded Exposure. This is a process of slowly increasing activity levels. Here is a breakdown of how to use graded exposure:
1. Imagine doing an activity that you want to do but haven't been able to because of the fatigue - use affirmations and breathing to let your brain know that it is fine
*Once you can imagine it without feeling anxiety or symptoms you move onto step 2.
2. Implement the activity at a small level - for example: walking for one extra minute a day - and use the affirmations and breathing that bring safety
3. Continue this process over time to build up your confidence in your ability to do the activities

Third step: Working through emotions such as rage, guilt, grief, despair using whatever technique works e.g. journaling

There is an important caveat to this: at some point we need to learn to trust that even with symptoms such as a crash that we are ok, healthy, and safe. The more we can do this the quicker the crash will pass and the less scary it becomes. Once the symptoms lose their ability to scare you (which takes time and practice) you have traveled the road to freedom.

This is a process of learning outcome independence: it does not matter if we have symptoms while doing an activity what matters is doing the activity with confidence and feelings of safety.

As Dr Schubiner says, "Hurt doesn't mean harm" - symptoms don't mean that we have structural damage.

Some questions arose:

What do you need to be confident that your body is healthy?

Where does your reluctance come from?
 
Thanks for responding to my post.

You are not only a mind body Counselor, but have also recovered from TMS?

My reluctance comes from having crashed before when doing activity outside of the "energy envelope".

what I would need for confidence going forward, is someone with experience letting me know that if I crash hard, I can just decide that this is all a product of my hypervigilant nervous system, and realize that by training through, I am not going to be incapacitated for a week or more. Instead,I can start doing things again as soon as my nervous system settles down. With practice, maybe in just half an hour or so.

it sounds like this might be what you're saying. You said that you don't have experience personally with chronic fatigue syndrome, but your work with others has caused you to realize that the "energy envelope" is a product of the imagination. Am I understanding this right?
 
Mossy tree said:
Thanks for responding to my post.

You are not only a mind body Counselor, but have also recovered from TMS?

it sounds like this might be what you're saying. You said that you don't have experience personally with chronic fatigue syndrome, but your work with others has caused you to realize that the "energy envelope" is a product of the imagination. Am I understanding this right?
Click to expand...

Yes - I recovered and now help others.

I understand that you need that reassurance for your confidence - that makes a lot of sense.

I have found that as I and others have worked through the TMS method the crashes/flare-ups tend to last less time especially as we have started regulating our nervous systems more. However, this is a practice and happens at each individuals speed. For instance, these days 3 years after finding and implementing this work any symptoms tends to last a day at most unless I am in a particularly emotionally intense period. However, a few months into the healing process, I would get blindsided by big symptoms for a few days. So, there is a great possibility that you can learn to reduce the time of having symptoms.

As I said in my previous answer a really key part of this is not fearing our symptoms. It happens with time and practice and we are all at different levels of this. But without fear your nervous system gets the chance to come out of fight/flight/freeze and heal.

I don't have personal experience with CFS but I have talked with many people with it. The energy envelope and pacing are not a product of the imagination -> there are tools to manage symptoms. However, these tools give our brains a really clear message: "Your body is fragile and these activities are dangerous." and paradoxically keep us in the pain-fear loop (this is what drives TMS). For recovery from CFS caused by TMS then gently pushing the energy envelope is a great idea -> it gives a powerful message that you are not afraid of the fatigue and more importantly the activities.

As Dr John Sarno said, “Losing one's fear and resuming normal physical activity is possibly the most important part of the therapeutic process.”

I hope that someone with CFS can chime in with their personal experience because that would be really helpful!
 
mrefreddyg said:
these days 3 years after finding and implementing this work any symptoms tends to last a day at most unless I am in a particularly emotionally intense period.
Click to expand...
This is an important point. And this is also my experience. Just because I have a setback doesn't mean I have failed - it's JUST a setback, that's all, and it is ALWAYS related to something which caused a stress reaction, which my primitive TMS brain interpreted as a threat to my survival (a hungry tiger!) and so it gives me symptoms to try to make me stay safely in bed.
mrefreddyg said:
there is a great possibility that you can learn to reduce the time of having symptoms.
Click to expand...
As soon as I identify the stress, I can sometimes even get rid of symptoms the same day, but they are always gone the next day.

The key is that I use my rational brain, and I refuse to accept that the flare is necessary.
 
JanAtheCPA said:
As soon as I identify the stress, I can sometimes even get rid of symptoms the same day, but they are always gone the next day.

The key is that I use my rational brain, and I refuse to accept that the flare is necessary.
Click to expand...
This has never happened for me, and it is so frustrating.
 
mrefreddyg said:
...The energy envelope and pacing are not a product of the imagination -> there are tools to manage symptoms. However, these tools give our brains a really clear message: "Your body is fragile and these activities are dangerous." and paradoxically keep us in the pain-fear loop (this is what drives TMS). For recovery from CFS caused by TMS then gently pushing the energy envelope is a great idea -> it gives a powerful message that you are not afraid of the fatigue and more importantly the activities.
Click to expand...

I have given this a lot of thought. I think I will go along with what the practitioner recommends. Thank you for this, and the other replies
 
Although I have to add that I'm finding maintenance "these days" to be very challenging, due to world dysfunction along with the realities of being well on the downward side of the inevitable.
 
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