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I'm not sure how to proceed from here

music321

Well known member
My particular manifestation of TMS is MECFS. My most notable problems with MECFS is a sensitivity to pain, lack of endurance, and delayed recovery after exercise.


A TMS doctor has told me that my lack of endurance and recovery is brain-based. This is to say, the muscles themselves are fine. It has taken a long time for me to arrive at this position, and come to a place of acceptance.


I think what helped me, is that last week, I was told to simply have faith that this outlook is correct, and decide that it is. I was told that regardless of how exhausted I feel, and how I feel that my body just does not have the strength to do something, I should just calm myself down, and do it. It's this simple.


I saw an interview with a psychologist who suffered from TMS that manifested in a way similar to mine, and she took this approach. Things worked out for her.


So, as of last week, I decided I would work on standing longer. This is a limitation in terms of my being able to live a more normal life. It's easier for me to walk, in some ways than it is to stand. Standing requires that the same muscles be used, without rest.


On Friday, eight days ago, I stood for 20 minutes. This was physically taxing, but it didn't drain me completely. I decided that I'm going to add three minutes every day until I get to an hour, and then add more time every day. The next day,, I stood for 23 minutes. This isn't standing at attention, but standing in a relaxed way, as opposed to being engaged in any real walking. I'm just sort of milling around doing whatever. As the days past, I added three minutes each day.


On Tuesday, I stood for 32 minutes. This was a big deal for me, because I've broken half an hour. I thought wow, I'm on my way. The next day, wednesday, my personal trainer drove me to the gym, and I purposely didn't exercise my legs, because I wanted to be able to continue with the Increases in standing.


When returning home from the gym, my trainer, driving around a curve at between 25 and 30 miles an hour, became distracted, and drove up the curb. The two passenger side tires were in somebody's lawn, and then she came back down the road. I was sitting in the passenger seat, and I immediately felt pain in my lower back. The pain wasn't terrible, but it was there. This was three days ago.


A TMS doctor told me once, that I should imagine walking along and twisting my ankle. He said that the type of person that successfully gets over TMS, is the type of person who is in this situation, and decides to go running two days later, after having rested it for two days . The type of person that sits around babying it, is the type of person that is not actively showing the brain that everything is fine.


He further said that the type of person that sits or lies around, repeating mantras to himself that everything is fine, doesn't get better. The people that get up, and start living life, are the ones that recover.


I'm wondering if I should essentially take this approach here. As for the pain going away, it hasn't. As for being an actual injury or TMS, it is or isn't. I doubt anyone can really say . The day after this all happened, I was actually remarkably calm, and didn't really care at all. I was surprised. I was genuinely able to accept this, and think to myself that things would be back to normal in a few days.


The next day, however, being in pain, I became pissed off. How do I feel about this? I don't know, it kind of sucks. I had just started to turn a page, and then something happened. So if I look at my emotions, yeah I'm pissed. The person who caused my problems didn't suffer worth a damn. Should I feel fine about this? Maybe I should even feel great about this? Well, that's not the case. If I'm being honest with myself, and feeling my emotions, has we are told to do, I'm upset about this. Whether I am upset or not might very well impact my pain levels, or not. As I say, this could be an injury, it could be TMS.


Am I focusing too much on the physical? I don't know, the car went partially off the road, and now I'm in pain. It seems like it might be appropriate to focus on the physical in a situation like this.


By the way, I don't have any visible bruising, the car did not bottom out, and I did not have any imaging studies. I mention this because the same doctor that I had quoted earlier, said that if there is no obvious sign of injury, I should treat it as though it is TMS. I told him that I didn't see this as a valid measure, as when I was in an auto accident many years ago, and my spine was torn, as was shown on imaging, I had no bruising or discoloration whatsoever. He said, that that was different, as the imaging showed something. Whatever. I'm Sure if I work to get imaging in relation to this, it would show absolutely nothing.


So, it's my hope to continue standing, and to start getting my life back. In light of this, I've taken it easy for a few days, which I gave myself permission to do, and feel OK about. It's not imperative that I stick to a strict schedule.


However, going forward from this point, to actually make progress building my endurance, so perhaps I can even go out to socialize on Halloween, I'd like to continue with my standing. Also, continued standing might be a good way to show my brain that everything's OK.


So, if you were in my position, with an achy back, would you stick to this three minute a day increase, or would you just relax a few weeks until everything is pain-free?


Thanks
 
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So, if you were in my position, with an achy back, would you stick to this three minute a day increase, or would you just relax a few weeks until everything is pain-free?
There are people on these forums who will advise you to do far more than add 3 minutes a day as that's what worked for them for their pain/discomfort.

I haven't been able to take that kind of advice and for it to work for me. Reading your story, is like reading about me (in my case even being in a car going very slowly over relatively low, compared to some, speed humps/road humps hurt my back!)... I have gone from being bedridden, unable to stand or walk, with 'fibromyalgia' and chronic fatigue/ME, to functioning pretty well by comparison by taking baby steps, see my posting here https://www.tmswiki.org/forum/threa...philosophy-of-kaizen-an-article-a-book.30108/
 
There is fierce surrounding this, and I think that the fear could be mitigated by knowing that it's safe to continue going at the pace I was going. If I think about being sent back, and so forth, I could see it as derailing me.

Thanks for your reply, I'll check out your link
 
I checked out your post regarding small steps. That is precisely what I was trying to do with the three minutes per day, and it would've gotten me somewhere too. This might not Be that biggest setback, but it certainly would've been easier psychologically if this hadn't happened.

At this point, I'm really looking for guidance as to how to deal with this physically. That is, if I should still keep trying to engage in endurance, exercise exercises, etc.
 
That is, if I should still keep trying to engage in endurance, exercise exercises, etc.
Sorry, perhaps I'm being a bit dense, but I don't understand the above.
However, to answer the original question you posed:
So, if you were in my position, with an achy back, would you stick to this three minute a day increase, or would you just relax a few weeks until everything is pain-free?
The way I dealt with set backs was to rest until my symptoms eased off a bit, then I'd start again... if I had to start with 1 minute of standing at a time and increase from there, then so be it.
 
Sorry, perhaps I'm being a bit dense, but I don't understand the above.
However, to answer the original question you posed:

The way I dealt with set backs was to rest until my symptoms eased off a bit, then I'd start again... if I had to start with 1 minute of standing at a time and increase from there, then so be it.
The endurance exercises refers simply to the standing. Thanks for your reply. by taking it slowly, and waiting until the pain eases, I've been stuck in the cycle for years. I'm fundamentally thinking that that's not the way out. Please don't misunderstand. This is my being ungrateful for your reply.

I guess I'm just wondering if it would be physiologically safe to continue standing (or even sitting) in spite of the pain, rather than lying down.
 
So, if you were in my position, with an achy back, would you stick to this three minute a day increase, or would you just relax a few weeks until everything is pain-free?


Thanks

If your pain is due to TMS, then we all know that just relaxing for a few weeks will have no impact. The cause is not physical, so rest is irrelevant. The underlying issue is psychological and requires work to uncover the emotional and thinking patterns that have led to having TMS. Your strategy of increasing 3 minutes of standing per day is also a primarily physical approach, though I understand the component of convincing yourself that nothing is wrong by challenging yourself physically. I'm just wondering if you wouldn't have more success with this approach if you picked something more enjoyable, meaningful or functional. Just standing longer seems boring and somewhat pointless. You mentioned wanting to socialize on Halloween. I think coming up with achievable goals around that might be more motivating and rewarding, where the goal is increasing time socializing rather than standing.
 
@music321,
I very much related to your story. My situation is similar; I’m slowly working on standing longer and longer. I’ve had setbacks, and they’re frustrating. I feel you!

Remember always that this is a psychological problem, not a physical problem. If you didn’t have TMS, you could easily stand. The recent incident hitting the curb didn’t set you back, your EMOTIONS about it did. Journal out your anger about it, then forgive your trainer for the accident. That way the tension about it being held in your body can subside.

Keep focusing on your emotions. That’s the way out—along with the graduated exposure you are successfully doing. ABSOLUTELY go out for Halloween. Live your life as fully as you can.

No one and nothing can take away your progress. Just get back up on your horse and ride. You’re doing great!
 
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I understand the component of convincing yourself that nothing is wrong by challenging yourself physically.
@music321 This was my strategy (as Ellen describes above), well, sort of... my 'baby steps' approach to standing and then walking and then doing exercises etc., was not to improve physically because I knew that there was nothing wrong with my muscles (but, of course, I did want to be able to physically stand again without any problems) it was to show my lizard brain that I had no doubt that standing wasn't dangerous and that I wasn't in a dangerous situation and I was safe.
by taking it slowly, and waiting until the pain eases, I've been stuck in the cycle for years.
At first I too was stuck in that cycle as you describe (for a long time) but what I know made the difference to my being able to recover to where I am now was when I truly, deep down, viscerally believed that my symptoms were caused by my brain and nothing else, period/full stop. From that time onwards, my baby steps approach worked.
I guess I'm just wondering if it would be physiologically safe to continue standing (or even sitting) in spite of the pain, rather than lying down.
This seems to suggest that you believe that your inability to stand or sit is, or may be, of a physical cause. When I didn't totally believe that my symptoms were caused by my brain - that kept me from recovering.

I had a lot of pain when I sat... tailbone pain, pudendal neuralgia-like pain, buttock pain and numbness (you name it, it was all going on). Through it all I continued to sit despite the pain. I would only stop sitting for a while when the pain was absolutely horrendous, but when it eased off somewhat, I was back sitting again. And I continue to sit, despite some residual pain that occurs when I sit on hard surfaces, but I know that will be ironed out and totally gone in due course. (I had been checked out medically for any medical condition that might be causing my symptoms and they couldn't find one - they diagnosed with me with so called 'fibromyalgia' and chronic fatigue/ME, which as Dr Sarno said in his books, is mind/body.)
I'm just wondering if you wouldn't have more success with this approach if you picked something more enjoyable, meaningful or functional. Just standing longer seems boring
I agree with Ellen about this. When I could only stand for a minute or two and built up from there, boredom didn't really come into it; however, once I could do more than that, then I found it was upliftingly important to practise my standing as part of doing something I wanted to do, for instance, by taking up and learning the movements of chi-gong... it became much more about the chi-gong, my focus was on that, rather than the standing involved.
 
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I also was bed bound, and unable to stand or sit.
I took the baby steps approach, and added time to my standing but nothing really concrete. My mindset was to break fears, and untrue beliefs. So I used tasks to increase my time standing. It started with peeling one carrot, while listening to music and with my hubby (because I was also having pseudo seizures so I needed to be physically safe). Then two potatoes… mentally I worked on not rushing and not worrying or thinking about my sensations that I did not like. Then I switched to washing dishes, and other difficult tasks (I could not stand with my arms in front of my, nor lean or bend).
Simultaneously, I worked on the free programs on this forum and learned to meditate. Eventually, my anxiety led me to some mental health help and we used the program here to help guide us a bit - (my therapist did not get TMS so the SEP was a framework we agreed on).
I worked very hard to stop judging “success” vs failure as some days I could stand 3 minutes, some days 10.. some none. It was random - and I just took the days as they came. Many setbacks sometimes days or weeks.. but there were clear improvements so I kept going.
Eventually I learned that I was absolutely repressing emotions because I was taught to do so as a child. I began to break those habits just as I broke the no standing habit. I saw and understood the fear, the untruths and things fell into place. I still have symptoms and am still working on things but life is much more wide open.
 
I worked very hard to stop judging “success” vs failure as some days I could stand 3 minutes, some days 10.. some none. It was random - and I just took the days as they came. Many setbacks sometimes days or weeks.. but there were clear improvements so I kept going.
This is very inspiring. Thank you, Cactus!
 
At first I too was stuck in that cycle as you describe (for a long time) but what I know made the difference to my being able to recover to where I am now was when I truly, deep down, viscerally believed that my symptoms were caused by my brain and nothing else, period/full stop. From that time onwards, my baby steps approach worked.

I think this is what is kind of problematic about the situation. I had finally reached a point of being able to look at this from a fully psychological standpoint, and then the curb incident introduced an element of the physical back in.
Your strategy of increasing 3 minutes of standing per day is also a primarily physical approach, though I understand the component of convincing yourself that nothing is wrong by challenging yourself physically. I'm just wondering if you wouldn't have more success with this approach if you picked something more enjoyable, meaningful or functional.

I definitely hear this, and have been in this situation before. I haven't simply stood in a very long time, and can understand that I would take the body a little while to simply get up the endurance to do so. Of course, a lot of the lack of endurance is because of the TMS. It's hard for me to tease out what is what. This is why I decided that standing for short periods would be the way to go. By doing this, I will now feel well that by increasing my expenditure by just a little bit every day, I am not physically exhausting myself.I am just reaching my psychological limitations.

as for doing something fun when I'm standing, I agree. There isn't that much that can be done. That's fun if I'm only standing for a short period of time, though. I'll try to poke around outside and just look at the beans and so 4000 standing, but also have a difficult time walking downward because of my neck, muscle strength, as well as a lack of hand strength. Bend over is especially difficult, and something that I was going to start adding into the equation after I was able to start standing for an hour per day. Aside from getting the occasional thing out of the refrigerator, it's hard to do much.

it's hard to know, extremely hard, where are the physical limitations, and as a result of simply having not done much of anything for a long time, and we're the psychological limitations begin. In light of your comment, perhaps I need to start kicking my physical activity up a few notches. I don't know.
I also was bed bound, and unable to stand or sit.
I took the baby steps approach, and added time to my standing but nothing really concrete. My mindset was to break fears, and untrue beliefs. So I used tasks to increase my time standing. It started with peeling one carrot, while listening to music and with my hubby (because I was also having pseudo seizures so I needed to be physically safe). Then two potatoes… mentally I worked on not rushing and not worrying or thinking about my sensations that I did not like. Then I switched to washing dishes, and other difficult tasks (I could not stand with my arms in front of my, nor lean or bend).
Simultaneously, I worked on the free programs on this forum and learned to meditate. Eventually, my anxiety led me to some mental health help and we used the program here to help guide us a bit - (my therapist did not get TMS so the SEP was a framework we agreed on).
I worked very hard to stop judging “success” vs failure as some days I could stand 3 minutes, some days 10.. some none. It was random - and I just took the days as they came. Many setbacks sometimes days or weeks.. but there were clear improvements so I kept going.
Eventually I learned that I was absolutely repressing emotions because I was taught to do so as a child. I began to break those habits just as I broke the no standing habit. I saw and understood the fear, the untruths and things fell into place. I still have symptoms and am still working on things but life is much more wide open.

where are you were, it's pretty much where I am now. It seems like you have a similar level of limitation. To me, at this point, peeling one carrot would be about all I could do, if I could even do it. I know what you mean about holding your arms out in front of you. It takes much less strength to hold them near you

as I mentioned above, it's very difficult for me to find the delineation between or the physical lack of endurance ends, and the psychological lack of endurance begins. In retrospect, what do you think of the limitations that you had when you first started doing these activities? Do you think there were any real limitations for you, as a result of a lack of endurance? Or do you think this was almost an entirely mind based?

I guess I'm wondering, at the time when you started peeling one carrot, washing a few dishes, etc., do you think for the perspective of physical endurance, that you could've done massively more, and essentially have functions normally in the kitchen, preparing a meal and cleaning up? or, at that point, do you think they're actually worth some real physiological limits to your endurance as a result of having been inactive for so long?

I ask because, as touched upon earlier, it might be worth kicking up my activity much higher than it is, if there's nothing truly wrong with doing so. And by truly wrong, I don't mean that I think I would be injured. It's more a question not wanting to have the life flat on my back for Two or more days afterwards, in order to recover. I'd like to work at a pace that I can replicate every day
 
I tried doing “more” and had sensations that made me stop, in fear. Yes, I could have done more.
Unlike most people, I use a PT method to conquer my movement fears and help my confidence overcoming my other symptoms. My fear had me so physically stuck that I was in “extension” basically felt like I was being pulled backwards - it’s a fight or flight response, and have had to train my brain and mind that it’s bending and reaching forward that will vanquish fear.
What have you been running from? What else in life were you trained to fear from a young age? What kind of reactions did you develop?
You are doing the work to change those reactions to responses. To choose to be with the thoughts, reactions and sensations by choosing a different way. This takes time to have the brain and mind feel safe with a choice and not a trained automatic reaction.
You have to begin trusting your body too - to learn to breathe in a more relaxed manner, to give yourself time to let go (meditate for long periods, which may also need baby steps to attain), to find fun or at least engage in interests (even if not so interesting right now). I enjoy body scans which help me recognize where I hold tension (without judgement) but you will find your own way to learn to rest.
As for learning to do (stand) and find distraction (this is the type of distraction that is ok!) .. play some music (I used meditation music) with your phone, listen to talking books (free from most libraries), engage where you “have” to (I had to walk into that library and stand to renew my card.. which I feared I could not do.. but I did!), peel that carrot, get yourself a drink of water.. If you have someone helping you, ask them to help you set up opportunities eg. Lay out foods so you make and carry your own sandwich etc. do things that have built in motivation for your mind.
 
it's very difficult for me to find the delineation between or the physical lack of endurance ends, and the psychological lack of endurance begins.
This! Somehow, I think it’s both. I have all your same limitations. Getting something out of the fridge is difficult. Just so you know you’re not alone. I take great comfort in the stories of healing from @BloodMoon and @Cactusflower —they just kept chugging. I say to myself: just keep going no matter what. What’s the alternative? I find one of my biggest obstacles is this sensation of hopelessness that waves over me all the time… I spend a lot of time fighting that. You have to stay determined that you will one day be better. Somehow you have to keep your hopes alive. Keep your spirits up.

I think a lot of it is caused by tension in the body. If something is stiff, it can’t move. You can’t balance. You get pain from being clenched. That’s what causes most of this in my opinion. I’ve had these moments randomly where things are looser— Maybe my TMS brain is letting go a little bit— And suddenly everything feels easier to do. This also gives me insight that if I can overcome this tension— Caused by whatever; anger, Habit, Fight or flight; fear— When this tension loosens, things will be so much better.
 
I had finally reached a point of being able to look at this from a fully psychological standpoint, and then the curb incident introduced an element of the physical back in.
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.
it's hard to know, extremely hard, where are the physical limitations, and as a result of simply having not done much of anything for a long time, and we're the psychological limitations begin
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).
 
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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.

do you think you were injured at all? Or, do you think this was just a TMS reaction?
 
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