MECFS as TMS

[Ellen]

You've gotten excellent advice from all those above, so I don't have a whole lot to add.

I had fibromyalgia for 20 years and was intermittently diagnosed with ME/CFS during that time. I was not as disabled as you, as I was able to work during that time (though not able to do much else). However, it was because I was taking the highest dose of tramadol daily. Tramadol did nothing for me physically, but it worked enough on my mental state to keep me semi-functional. I'm not recommending taking this drug or any drug, because once I recovered using TMS techniques, I had a massive addiction and the subsequent withdrawal from the medication was really rough. But I've been symptom-free and drug free for over 10 years now, though I've had several short relapses during that time. But taking the drug for 18 years helped me to realize that the underlying problem was psychological.

There are actually four stress/fear responses: fight, flight, freeze, and fawn. If CFS was a fight or flight response, we'd be moving as our response--fighting the fear or fleeing from it. What I learned is that CFS is the freeze response. We are like the animal playing dead out of fear, hoping the big, bad wolf walks away and leaves us alone. To get out of this response I had to begin to think about it psychologically, and only psychologically. I had to be completely honest with myself and face all the ugly truths I was hiding from. I had to face that I was seeing myself as a victim with no agency to change myself. It was difficult and painful work and it took me over a year to be symptom free. And the work has never stopped, as it is a lifelong process of learning to live my life as honestly with myself as I can.

You can read my Success Story by clicking on my profile. Perhaps there is something there that you will find helpful. Recovery is possible. You can do this.

 

[music321]

The reason I want to get better quickly is because doing nothing is very stressful. I have been lying in bed for years. Excepting this has been profoundly difficult. I finally, at long last, made it to the point where I could sit up for 13 hours each day. I thought this would make my life much better, but all that means is that I was sitting in a chair next to the bed watching TV instead of lying in bed, listening to it. my arms and hands are too weak to do much of anything. Being up for 13 hours was not the goal, it was just the start. I really want to get out into society and interact with people. Given my change of living situation, I’m going to be moving into a house and I will be alone better lying in bed all day. I will have less social interaction that I do now, and I’ve been in that situation before. As a result of being in that situation, I did where I needed to be spoon fed. I’ve had value on human interaction, and I should just be fine with the isolation. This is not realistic, Living in complete isolation is terrible for anyone.
You are correct about pushing through, however, pushing through only works if it’s done with the it is seen as a struggle, one gets nowhere. That has to be done with joy. I just wish my body were adapting more rapidly. It took half a year just to be able to sit in the chair next to my bed. I can’t imagine it years before I can go back to work and let us semi-normal life. It seems to me that there is no shortcut, and the body just put on strengthen endurance are very slow rate. Once the TMS is dealt with, that is just the start. I have sent the TMS intermission, and I think it would’ve lasted if I had been able to get some normalcy in my life at some point. But as the month dragged on. It was easy to go back into the old old way of thinking.
Thanks for your help. It really does mean a lot that you are taking time after your day to answer this post. I hope this didn’t come across as less than positive, but this is a realistic reflection of how feeling.

 

[music321]

You've gotten excellent advice from all those above, so I don't have a whole lot to add.

I had fibromyalgia for 20 years and was intermittently diagnosed with ME/CFS during that time. I was not as disabled as you, as I was able to work during that time (though not able to do much else). However, it was because I was taking the highest dose of tramadol daily. Tramadol did nothing for me physically, but it worked enough on my mental state to keep me semi-functional. I'm not recommending taking this drug or any drug, because once I recovered using TMS techniques, I had a massive addiction and the subsequent withdrawal from the medication was really rough. But I've been symptom-free and drug free for over 10 years now, though I've had several short relapses during that time. But taking the drug for 18 years helped me to realize that the underlying problem was psychological.

thanks for the reply. I will check out your success story. What helped you regain physical functioning, to the extent that you were lacking? Did you have to really push through any weakness at all, or did you just roll with what your body told you to do? I guess that once your body straightened itself out, psychologically, this would’ve been easy to do
There are actually four stress/fear responses: fight, flight, freeze, and fawn. If CFS was a fight or flight response, we'd be moving as our response--fighting the fear or fleeing from it. What I learned is that CFS is the freeze response. We are like the animal playing dead out of fear, hoping the big, bad wolf walks away and leaves us alone. To get out of this response I had to begin to think about it psychologically, and only psychologically. I had to be completely honest with myself and face all the ugly truths I was hiding from. I had to face that I was seeing myself as a victim with no agency to change myself. It was difficult and painful work and it took me over a year to be symptom free. And the work has never stopped, as it is a lifelong process of learning to live my life as honestly with myself as I can.

You can read my Success Story by clicking on my profile. Perhaps there is something there that you will find helpful. Recovery is possible. You can do this.

thanks for the reply, I will check out your success story. To the extent you overcame physical dysfunction, did you have to work through any sort of weakness, or did you just get yourself on track, psychologically, and then work within what felt to be your natural bounds? Thanks

 

[Booble]

But I digress. Here's the thing, @music321. I can't recall your story, but your commentary is 100% physically-focused and does not address emotional issues at all - there's no hint of emotional vulnerability that I can detect. In taking a quick look at your old posts I'm still not seeing it - just minimal mention of working on your lifelong anxiety and a throwaway comment about childhood adversity. I feel that's a key.

I get hit with waves of fear from life events, such as being hit with massive medical bills, having my living situation change without wanting it to, being denied benefits, etc. I know the reason for my fear to crash. Sometimes the fear of the symptoms, that is my neck will give out, I’ll find myself lying in bed, and this will frighten me. In all the cases, I try to feel the emotions associated with what is happening, provide myself as sense of safety, and move on. However, my brain doesn’t learn.

@music321 Fear is the wrong emotion to focus on. It can definitely help you take the edge off enough to help you make it through life -- but it is not the same as resolving TMS. It's polishing the surface, but not getting rid of the rot underneath.
As @Baseball65 says, re-read Sarno, again and again and again.



Rage ----> Anger ------> Physical sensations -------> Mistaken Beliefs ------> Fears

When you cut the head of the snake, rage and anger, the rest starts to dissolve away.
The snake is a sneaky buggah though. Like those planaria you learn about in biology class where it keeps growing back. The head of this snake can keep growing back too.

 

[Ellen]

thanks for the reply, I will check out your success story. To the extent you overcame physical dysfunction, did you have to work through any sort of weakness, or did you just get yourself on track, psychologically, and then work within what felt to be your natural bounds? Thanks

Psychological all the way. The mind controls the body.

Also, check out success story and posts from @Cap'n Spanky . He recovered from CFS. There are others, I just can't think of their names.

 

[music321]

@music321 Fear is the wrong emotion to focus on. It can definitely help you take the edge off enough to help you make it through life -- but it is not the same as resolving TMS. It's polishing the surface, but not getting rid of the rot underneath.
As @Baseball65 says, re-read Sarno, again and again and again.



Rage ----> Anger ------> Physical sensations -------> Mistaken Beliefs ------> Fears

When you cut the head of the snake, rage and anger, the rest starts to dissolve away.
The snake is a sneaky buggah though. Like those planaria you learn about in biology class where it keeps growing back. The head of this snake can keep growing back too.

in the analogy, rage is the head of the snake? It’s not just fear of physical symptoms, it’s fear of other life circumstances. I don’t know if rage under lies those fears or not

 

[Booble]

in the analogy, rage is the head of the snake? It’s not just fear of physical symptoms, it’s fear of other life circumstances. I don’t know if rage under lies those fears or not

If you are exploring TMS, the fundamental principle is repressed, unconscious rage/anger.
You may have fear but that is not the cause of your physical symptoms (according to TMS), it only seems that way.
If you want your physical problems to go away fully, rather than momentarily, then you must find and allow the feelings of rage that you don't know you have.
Otherwise, there is no point in hanging around a TMS forum. (Sorry, that's some tough love.)

Dealing with your fear will get you out of bed for an instant but dealing with your suppressed rage will get you out of bed for a lifetime.

For what it's worth, there are many of us that would never in a million years have believed we had rage inside of us. I know I sure didn't. I had nothing substantial to be rageful at.....but come to find out the little me inside of me still has some tantrums inside over seemingly trivial things to adult me.

 

[music321]

I posted another thread, and wish I had read your apply first. It seems helpful. It might be the case that all of these other behaviorism, tools, etc., or just Band-Aids on the problem. The rage needs to be accessed and dealt with I suppose. I just read this moments ago, and have to really reflect on it. Thank you very much, I appreciate it

 

[Booble]

I posted another thread, and wish I had read your apply first. It seems helpful. It might be the case that all of these other behaviorism, tools, etc., or just Band-Aids on the problem. The rage needs to be accessed and dealt with I suppose. I just read this moments ago, and have to really reflect on it. Thank you very much, I appreciate it

That's Sarno's theory anyways.

 

[music321]

Your post regarding rage gave me something to think about. I happened to speak with a medical doctor via phone earlier today who trained under Sarno. I asked him about the and fear issue. I’ll get to what he said in a second. First, I want to preface this with my saying That I’m not trying to call you out, etc. I very much appreciate the reply that you gave me, and appreciate the replies of all those who have answered anything I’ve ever posted. With every reply I get, I always feel touched that somebody would take time From their busy day to address a question I have to try to make my life better. I feel all the more so when the reply is lengthy, and obvious time has gone into it. This being said, the doctor I spoke with said that there need not be repressed rage. as he said, there is nothing special about rage. He said that what is not being addressed, could in fact, be fear, and that fear is actually the problem more often than is rage. I would guess that there could also be other emotions, besides rage and fear involved, for instance, any of those that we consider negative. This is to say, jealousy, frustration, etc. Who knows though, I’m not an expert.

 

[Booble]

nd that fear is actually the problem more often than is rage. I would guess that there could also be other emotions, besides rage and fear involved, for instance, any of those that we consider negative. This is to say, jealousy, frustration, etc.

No worries, @music321, I share what I know and my experiences without any strings attached.

My take on what your doctor said:
Yes, jealousy and frustration and other emotions. Absolutely -- but the important part your doctor is missing is that being jealous -- leads to internal RAGE. Being frustrated leads to RAGE. All these emotions -- make you angry and that is what you have to get out.
So yes, 100%, explore those things. Write about those things --- AND LET THE RAGE ABOUT THEM come out.
If you politely discuss with yourself or a therapist or in a journal how you were jealous of your momma loving your sister more than you and only discuss it intellectually, I posit that it will do nothing to help you.
If on the other hand you recognize that your little self was jealous of your momma loving your sister and let yourself have a big, messy, snarling tantrum about that -- and have a few minutes of HATING your sister for that and HATING your mother for that and get that all out -- then, my friend, you will see your symptoms start to fade away.

Do you see the difference?

 

[music321]

I do, thank you very much

 

[music321]

How are things these days?

 

[Diana-M]

How are things these days?

Music! How are you doing?!! (I’m not as improved as I’d hoped physically, but laying huge groundwork psychologically and spiritually for my healing one day soon.)

 

[music321]

I'm not anywhere near where I would like to be myself. When I first posted in this thread, I was in worse shape than I am now. I have recovered to some degree, but the underlying nature of my problem remains.


As I mentioned elsewhere, and perhaps earlier in this thread, there seem to be two schools of thought regarding dysfunction in relation to MECFS. One school is that our nervous system systems are shutting our bodies down, and there are no physiological abnormalities. The supporting evidence for this is when people are able to get massive burst of energy almost instantaneously. I have heard counts of people who have gotten off the phone with counselors, have looked at a life with a bright new perspective, and are unable to walk around far more than they were prior to getting onto the phone call. This isn't to say that such people don't have real limitations as a result of muscle atrophy, just that there seems to be a direct neuropsychological to muscle issue.


The other school of thought, is that, even though this is psychologically based at its core, there is some sort of physiological abnormality. This is evidenced by people, having recovered, to some degree, with methods that address physiological issues. Such methods are targeted at removing micro clots, etc. Of course, all of this evidence is not definitive. All of these treatments could simply be illicit to a placebo response.


The second bit of evidence is that there was a study done, and published in the journal nature last year, that shows muscle cell necrosis after heavy activity in approximately 36% of people with long Covid and MECFS. It seems that this is a far greater indicator that there's something physiological going on, as this evidence was provided with muscle biopsies. Even in the study, however, one has to wonder why it's only an issue with 36%, and not everyone. Even in this scenario, the major majority of people don't have this issue.


There are hypotheses regarding sodium and potassium imbalance in the muscles, as well. Sadly, such research seems to be going nowhere. Even in this scenario, one needs to wonder why there are sodium and potassium imbalances in the first place.


I find it extremely difficult to be at peace with this condition. People have said that once they have come to a place of peace of it and acceptance, they have recovered. As much as I would like to, I can't seem to maintain this. Sometimes I can go for a stretch of a few weeks in the state, But the limitations that MECFS imposes on my life makes maintaining such positivity and forward thinking very difficult. For somebody who is far less affected, and is, for instance, working a job, I would guess that that little boost would be enough to get them over the hump, to the point where they can resume their lives. For somebody in my position, it's difficult, because I would need to be for stronger, and have far more endurance before I'd be able to live in any sort of normal life.


Some have suggested pushing through the weakness. I have never had any luck doing this. I would guess that if I ever do have luck doing it, my first occurrence of having luck would be essentially the end of MECFS for me. I would be able to continue doing it from now on. Most people who try this approach, which is essentially what graded exercises, don't have good results. In fact, the vast majority of people who try to end up worse. However, one to 2% of people who try this end up markedly better. A TMS practitioner would probably say that the differences in the mindset. I don't know.


As for my specific situation, though I have put on some strength and more endurance, the two essential features of the condition remain. That is, a lack of recovery, and a lack of endurance. I've tried ignoring the problem, and just living my day-to-day life as best I can, Which has kept me out of a major crash. Still able to sit around and use the laptop to some degree, or watch TV. However, I haven't gotten my wife back. Simply training up my body hasn't been helpful either.


The whole things rather frustrating. I don't know if I should feel and embrace this frustration, or if I should try to push it aside and be positive. I've asked this question here before, and I've been told that I should feel the frustration, should feel all of the negativity associated with my condition, but just not get bogged down in it. Time is going by, and I feel like my life is just slipping further away. I've already lost the bulk of my adult life to this condition, and don't want to lose the rest of it. I really just want to get on with living again.


I'm saddened to hear that you are not in a better state. When I posted asking for a follow up, I was really hoping to hear that everything was back to normal with you. Well, best of luck. One of these days things are bound to turn around for both of us.

 

[Diana-M]

. I have recovered to some degree, but the underlying nature of my problem remains.

That’s fantastic you’re recovering! I noticed from your post that you are still slightly seduced by the medical “explanation” for your TMS. Western medicine is obliged to find a way to explain TMS, while it completely ignores the mind’s impact on the body. Just watch all the pharmaceutical commercials (if you’re in the US) that treat symptoms that we know are TMS and curable. They always come up with some seemingly justifiable reason to prescribe these medications.There are countless examples of healing we can turn to to prove TMS is caused by the mind. People on this forum have proven it. I’d maintain hope completely in your mind and body to heal.

As for me, I experienced serious weakness after having Covid. My doctor thought I was deconditioned (a fancy word for being out of shape). But I wasn’t sick that long. Only a couple weeks. At first I believed this and felt even weaker. Then after time, I realized it was part of my TMS. (As proof: on rare days, when I’d had a good journaling session, I could much more easily climb my stairs, whereas normally, I really struggled.)

Claire Weekes, the leading expert on anxiety, says it can cause weakness, in her book, Hope and Help for your Nerves. I believe this. All of my symptoms coincide with severe anxiety, which is slowly healing as I make life changes.

I just bet you could get the rest of the way healed if you could eliminate doubt in all the misinformation you’ve bought into from the medical “industry.” Until doctors take into account the whole person—including the brain and its vast unknowable subconscious—it will be operating on half the scientific data that it needs. John Sarno was the first to be brave enough to call things as he honestly could see them—come what may. And because of that, we all have a great chance of healing.

There are two women here who have been lights to me—both of whom were bed ridden with weakness at one point and are now almost fully healed. @Cactusflower and @BloodMoon. They did it with slow but steady effort—not pushing too hard.

 

[Diana-M]

I'm saddened to hear that you are not in a better state. When I posted asking for a follow up, I was really hoping to hear that everything was back to normal with you.

Thank you so much for the well wishes, my friend! But don’t worry. I believe I’ll get better. I have a very deep history and long life of TMS-inducing ways that need to be corrected. And this takes time. The internal changes I’ve made have astounded me. It’s also been slow wrapping my head around all of this. I think it takes a while to truly believe that TMS can do such extraordinary and scary things. And it can! Time is the healer. I know if you don’t give up, you can get there. It’s like breaking a fever. It’s raging right now, my TMS, but sooner or later, it will subside away.

 

[music321]

I can't seem to edit the above post. When I typed the word "wife" , it should've been "life".

i'll definitely check out the writings of those two posters.

thanks for the well wishes