MECFS as TMS

It’s been quite a while since I’ve posted. I’ve actually lacked the ability to post, and I’ve been lying in bed for quite a while. Years, in fact.

I realize that MECFS is TMS. In my own mind, this is beyond dispute. My primary problem is one of weakness. There are two theories on this, one is that the nervous system is making my body feel like it has no endurance or strength, when in fact it does. The other, is that the nervous system causes cellular dysfunction, which results in the weakness and lack of endurance. The latter theory is referred to the cell response theory.

I wonder if anyone here has any opinions, one way or the other as to which is most likely to be valid. I asked many people with MS who try to push through simply getting worse. Succeed, however. Those are absolutely certain of their success seem to succeed.

I am beyond weary of dealing with MCS. People speak of acceptance, but I can only maintain acceptance for so long. When I very slowly and steadily build strength and endurance over six months, living with extreme limitation, and then having a major setback, it’s a lot to bear. people have said that until I reach a point where I can bear my situation indefinitely, until after years, I’m able to resume some normalcy in my life, I won’t get better. Maintain a healing mindset for half a year is one thing, maintaining it year after year in spite of setback is another.

furthermore, a renowned TMS doctor, whom many of you have likely heard of, has said that I most certainly have enough endurance to sit down all day long. A period of six months, I had built myself up to being able to sit in a chair for most of the day, as opposed to lying in bed. I went through periods of stress, that resulted in feelings of neck, weakness, primarily. I did not know if the danger response theory, or the weakness of illusion theory, so to speak, was the correct one. Airing on the side of caution, I lay down for a while. I was still up for a couple hours here and there, but was lying down for a long period of time. So you know what I’m talking about, I’ll spell this out. I don’t mean to bore you, I just want to let you know where I’m coming from. I had gotten to the point where I was able to sit in a chair for 14 hours, and would stand every half hours so for a couple minutes to help my circulation. Had a crash that left me more or less bedridden for 10 days. Over two or three days I worked my way back to being out of bed for 13 hours, and sat for 13 hours for two or three days. at that point I had another crash, that sent me back to bed for another week and a half. I was then out of bed for longer periods of time, I don’t know how many hours per day, for a few weeks. I was getting out of bed with brakes. at one point I was up for 13 hours in one day. I’ve been crashed for the better part of a week. For one day, I was up for 13 hours, and then was lying in bed for another week. I was up for nine hours and one day, 10 hours yesterday, and here I am today having only been up for a few hours, and feeling profound weakness.

it seems to me, that after lying in bed for this long, I would certainly have some real weakness that would prevent me from setting up. What do you think?

my living situation is about to change dramatically. There are activities of daily living that I simply cannot perform. In spite of this, I’m thinking perhaps I need to force myself into a situation of greater independence. Perhaps I need to go to a health resort, or something similar. perhaps being in such a situation would force me to adapt. Perhaps the TNS doctors is right, and that I actually do have more endurance than I think I do. Let me know what you think, thanks

 

I am so sorry to hear about your situation! I have been greatly weakened by sitting too long during the pandemic. Just sat. I was so depressed. Then over time, my weakness caused more weakness. Your muscles shrivel up. No matter what—You have to keep moving. I wish I had known. Even just standing up helps. I just started PT to gain my strength back, and even after a week, I see a huge improvement. This gives me hope. I also set a timer and try to stand longer and longer each day. I know you have the fatigue—but not moving makes it worse. I have also tried DDP Yoga. It’s a program designed by a former wrestler. He has a whole part of his program for bedridden people. It’s awesome. You might like it. I hope you feel better soon and heal from all this!

 

Thank you for commenting on this. Since in someways, you were coming from a similar position physically, I have a question for you, if you don’t mind. What was your physical functioning like at the start of the week, and how much of a change was there in just one week? I ask because if the change you experienced was profoundly more than what I am gaining, my limitations might, in fact be more psycho neurological. At the beginning of the week, how long were you able to stand at one time, and total during the day? How long can you stand at one time now, and total for the day now? Thank you

 

Hi Music,
I'm also on the ME/CFS board and now that I'm aware of TMS it's hard to watch everyone suffer so much.
I think you focusing too much on "trying to figure it out" (it doesn't really matter if the chicken came first or the egg) and monitoring yourself too closely.
People with ME/CFS tend to study and research it in minute detail. I don't blame them. It's a shitty way to feel all the time and it feels prudent to take charge of your health that way.
Here's a secret though. Our bodies don't need us to do that. Our bodies are autonomic systems that do the job for us. Lucky us! When we examine too much we get in the way.

My dog had TMS. I kid you not. If she had the slightest negative event while doing something. She would get it in her head that she absolutely no matter what could not do that thing again. It wasn't like she was afraid to do it. She believed she was incapable of doing it. Even her favorite thing like jumping into the pool. Or simply going down a few steps.
It's like when we are bed bound because of whatever, and then become certain that we can't be up.
We give it so much time, thought and attention. Instead of just....getting up and not thinking about it.

I once had a conversation with my unconscious while doing my "writing shit down" as @JanAtheCPA likes to call it.
My unconscious reminded me that IT was in charge and I was backseat driving.

The backseat driving isn't necessary. We take for granted that we don't have to think about our pupils becoming larger and smaller. Or our kidney doing whatever it does all day.

I'm not an expert but I think the trick is to stop monitoring ourselves. We don't have to take inventory each morning, noon and night at how we are feeling and then adjust our behavior accordingly. The challenging part is that it's hard to stop doing that. Our TMS part of our brain is doing that on purpose due to all the deeply hidden anger and rage inside we are trying to avoid. It seems pretty obvious when you get right down to it. There's no time and space to deal with the anger and rage when we are constantly hyper focused on how physically crappy we feel, especially if we are using our time to try and find answers to why we feel that way and/or trying various remedies and then further checking and monitoring.

When you say you can't get up -- and inside you are thinking -- there is no possible way, think about my sweet dog. Just like her, you have two legs -- well, wait a minute, she had 4 legs --- and you can get up. You can actually do anything once you get out of your own way.
Might you be tired at first when you do whatever? Sure, but so what? For non-TMS people, they don't give being tired a second thought. Yes, they might take a quick nap or go to bed early that night but they don't think, "OMG I'M TIRED. THIS IS NOT WORKING. I HAVE TO STOP. GET BACK IN BED. STAT!"

Anyway, those are some thoughts which may or may not be helpful to ponder.

Best of luck to you. I think you are on the right path.


Edited to add: I forgot the rest of my dog story. It was clear that she COULD do the things should felt she couldn't because when she stopped "thinking" about it, she could do them just fine. For example, if a chicken ran by and her subconscious instinct kicked in, she would run down those stairs like an Olympian where previously when she was thinking about it she just stared at them. Same with throwing a toy in the pool. If the toy was already in the pool and she wanted to get the toy, she would stand on the edge of the pool for an hour hoping the wind would bring her the toy. But if you threw the toy in while she was watching, she'd jump and fly through the air into the pool, grab it and swim out.

 

So, I hear what you’re saying. And I DO believe that my leg weakness and overall weakness is being caused by TMS. And that weakness led me to get so out of shape that I don’t have the basic strength to live life right now. I have kind of been searching for stories like this on here, and I’ve found quite a few. It’s like severe TMS finally just puts you in bed.

So to answer your question. In about 3 weeks I’ve improved my standing. I did this myself before the PT started. I went from being able to stand about 10 min. to 20 min. At one time. But the changes from PT are bigger. I’m more balanced. I can get right up out of a chair. I can do some dishes and cook something little. It has changed my whole outlook. And that little boost is feeding my optimism. I am doing some visualization each morning for about 20 min. Where I picture myself doing cool fun athletic things. Overall—hope changes everything. Even just a tiny bit of hope.

 

I agree! We get just like your dog. This fall I was walking across the living room and I was extra stressed out and I fell. My legs just sort of lock up. I go into freeze mode or something. Instead of TMS pain, I’m getting freeze. Anyway. I fell that one time and immediately got a cane. I just believed I couldn’t walk. Then 1 months later, I got a walker. What I fear is happening to me. Someone said on here: Everything you want is on the other side of fear.

 

You must have patience with your mind and body through this process. Focus less on your physical success and more on mindset success. This is the way to move forward.
I was 2 years pretty much bedridden and could not sit.
It took me about 6 months to be able to sit for a few hours but I get up and move every half hour or so. It took a year to be able to walk a mile, then a year of backsliding physically, but making leaps and bounds mentally. I have an excellent physio who has helped me immensely with slow determination and constantly points out how during hard times I can now take time and patience to move through it gently and this is creating mental progression. He also reminds me this is nervous system work, and if you are anxious or using self-pressure, your nervous system will ramp up again.

 

thanks for the reply. You’re right, my conditioning is exactly like that of your dog. A normal person would just do, and not think about their actions. However, a normal person would not have their brain telling them that they are weak when they are not, or that they are in pain when nothing is wrong with them. This is what makes TMS so challenging for me

 

thanks for the reply. This kind of gives me a timeline for the sort of progress so I can expect. Maybe I’ll be able to stand for about 20 minutes at a time in a month or so. It would certainly open a lot of doors if I could cook for myself in that period of time. Out of curiosity, how many times per day are you standing per day, and has the number of times you are standing per day increased as well, or just the duration? Thanks

 

thank you for your reply. Regarding your progress, that seems in many ways to be about the timeline I am experiencing. Do you think if your mindset were different, you would’ve progressed for more rapidly? Or, do you think that given your state of weakness as a result of being better written, you could’ve progressed no faster, given limitations, regarding how long it takes the body to rebuild itself, even under ideal circumstances?

 

Yes! Maybe you’ll cook even sooner! There’s a song by the Eagles (totally dating me! ) The lyrics go something like this—“Often times we live our lives in chains, never knowing we have the key.”

 

I’ve actually thought of that song in relation to my condition before. By the way, I added a question to my reply to your reply after you had posted the above.

 

It took me about two weeks to go from 10-20 min. I stood almost every day only once per day and increased the standing by 1 or two minutes at a time. It’s hard! Your body just wants to make you give up. I do it looking out the window so I have something to look at. And I imagine that one day I will be outside walking Again!

The PT exercises are super simple. And I do them 3 times a week. I mean, they would be simple to a normal person. They are hard for me.

 

Thanks, and best of luck with your progress

 

@music321
There’s a word for this weakness. It’s called deconditioning. I had never heard of it before. But you can look it up and learn about it. My PT told me that for every day in bed you lose X amount of muscle and it takes time to build it back.
But the truth is, this is a battle for your mind, soul, will and heart. You have to plow in deep to the psychological work involved in healing TMS. The physical problems are just the tip of the iceberg. But sheesh, it’s hard to think about anything else when you can’t stand up and brush your teeth!

 

So0000.......why do you think that is happening? Why is your brain telling you that your legs are weak? What is your brain trying to avoid? Who and what are you deep down, shoved way, way down, rageful at/about?

Get out a piece of paper and a pen and write that question down --- and then take a deep breath and start writing and answer that. Don't think about it, just write as if you are one of those (fictional) spiritual mediums and let it flow from your pen to the paper. You an rip it all up when you finish so don't worry about what you say, how you say, whether or not it's legible or not. Just let 'er rip.

And then tell your lizard brain to f-off and get out of bed.

 

YES! I figured out I needed to accept the anxiety and fear, and move on from being stuck there. Doesn’t mean it doesn’t like to try and try again. Each event is an opportunity to change reacting in fear, panic, frustration etc. and respond with kindness, patience and faith that it’s just a bump in the road!

 

Freeing myself from TMS has been a challenge that I’ve not been able to overcome. I have read everything there is to read on the subject, and consulted with the best TMS doctors. 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. It takes weeks for me to crash. Given all of the stress I’ve been under the past two months, I lost most of the benefits I’ve made during the previous six months. It’s hard for me to even sit here now, whereas two months ago, I couldn’t sit here for 14 hours straight.
Many in the MCS community feel that MCS is the bodies in ability to repair itself from normal wear and tear as a result of height and stress, and overactive fighter flight system. This is the cell dangerous response theory. As I mentioned, the renown, the doctor disagreed with this. The reason it mattered to me, is that I would’ve pushed through the weakness and gotten myself out of bed. After a few days, in spite of the feeling of tremendous weakness, I was confident it was just a neurological phenomenon. I am dealing with my bodies, inability to maintain itself as a result of being under constant stress, then the last thing I’d want to do is push further when I’m already feeling worn out.

i’ve dealt with the emotion I’ll aspect of this as best I can over the years, and I really don’t seem to be making any progress, despite all of the release techniques. Well, I guess I’ve made some progress. But all in all, I’m not getting any better physically, because I can’t avoid these crashes that set months of progress.

I don’t know what to do, and frankly, I’m getting pretty burned out. Thanks for your replies

 

What is “push”? What is the mindset behind this push? I sense there might be an urgency and a lot of pressure, due to these changes you face.
You are fearing the changes, the future. Perhaps the responsibility to self that the future entails, the heavy weight of feeling the need to get better fast.
What are you afraid of facing?
What makes you angry about it all?
You don’t have to dwell on these things, just consider them. Maybe write down a sentence about it and see if you can write more.
You can learn all about TMS and “think” you are doing the work. But sometimes we need to take a step back and see that we’ve done the work our brain is allowing us to do.. but like the peeling on an onion, there are more layers.
My favorite visualization is to put me mental/emotional consideration in the center of a circle. I take up a pen and write a bit about it from where I stand watching it. Then I walk a few feet away around the circle and look at it again. What has changed? Can I look at it from the side and see it in a different way? Sometimes I write more, sometimes just ponder but only for a minute or two, just enough for my brain to consider a new perspective. With TMS we often get stuck seeing things very black/white and judging them good or bad, cause and effect. What if you put that notion of judgement you have in the circle? Perhaps you could see the “Well, I guess I’ve made some progress.” as considerable progress mentally and or emotionally and value it. Progress is progress, and much of the time with TMS, it is the mental (mindset) and emotional victories that responsibility over to the program. All you have is commitment to yourself to finish it.
Do you need to push? Yes, if the pushing is seen not as fight, struggle, and resentment.
You have gumption, commitment to you, and check that you aren’t wallowing self-pity and self-victimization (which can be very subtle).

What if you take your graded exposure a little slower? You are taking what a doctor said as the definitive measurement of time you “need” to be up as the successful end goal. That’s perfectionism, it isn’t where you are at now and that’s OK!
You are creating massive pressure to live up to what you have felt is this Dr’s ideal.
Stop living for someone else! That Dr. meant the 13 hrs as an average guide for which you could slowly work up to and CHOOSE to use as guide, it’s not some kind of TMS rule (black/white legalistic thinking).
If you have not followed one of the TMS programs free here on this website, start to finish, do it. A few consultations and reading isn’t fully doing it for you. You aren’t committing, and I think you need to see how personality traits can feed into the emotional side and mental stuff. A program releases you from the responsibility to fix but reinforces your commitment to you.