I Can't Feel Beneath My Weird, Painful Exoskeleton (semi-disembodied)

[Chava]

(not sure where this post fits)

I feel more like an invertebrate than a human.

First, I've made progress in the area of living somewhere closer to my own body. I'd say I used to live a few inches outside of myself, sometimes probably a couple feet. Now I just feel pain around outer muscles. It's a physical therapy fact that I don't use my stabilizer muscles but grip, hold myself up, and do everything with the outer muscles which are supposed to make me move, not hold me together. But maybe that's progress...I feel myself a couple millimeters in. It's not usually good, but I have feeling.

It feels like I have a hard shell and everything on the inside is empty or mush. Once in a while I can feel my breath, but not very well, or it's creepy. Tuning forks placed on certain bones seem to help me feel myself inside and out, like I'm connected. Very soothing. I wish I could have something like that just plugged in to me (I have a TENS machine but it is not at all the same).

I'm going to stick with physical therapy but it's hard because, damn it, I have to admit that I don't want to feel or access these deeper muscles. I honestly feel more normal the way I am, because I'm used to it. I want to feel my core and yet, it's very surreal. I'm working on it in manageable doses, I think, like trying to recover from anorexia without melting down and turning to purging. It's not that I want to suffer but I feel safer feeling myself just a couple millimeters in, very tense, and living sort of in this shell-like outer layer.

My therapist has some ideas about "internal stability" (the psych and physiological versions are totally connected...like not having or even wanting to have a "core"). I wear braces sometimes but I'm going to be a physically degenerated mess soon if I can't find a way to push myself without pushing myself over the edge.

Not sure if that's the most f*cked up thing you've read today or what. But I'd love to hear if others have challenges feeling themselves in their bodies and how it affects their health...or if anyone is very aware of having a protective (though maladaptive) shell. Or if you relate to a lack of inner support or core on both emotional and physiological or somatic levels. It's really like I don't have a backbone. I fight to hold myself up.

 

[Bookoffee]

I felt like you were talking to me and explaining to me why I continue to deny to face my phsycial limits. What is hiding in there?

You may be talking about something different but that is what I felt reading your message.

 

[Chava]

@Bookoffee I'm just amazed if my writing made any sense here. I'm totally open to relating on any level. Or interpretation. I maybe don't totally deny my physical limitations but I definitely limit myself (which I guess is the same thing). I feel my most normal if I'm not completely alive. A little pained and existing only a little on the periphery. But also, I don't know what's hiding in there either. Some creepy sea of maggots or something. But usually just nothing. This is my auto-pilot, but an improvement that I'm aware of it and I'm working on it.

 

[greenleaf]

Hi @Chava -- that is definitely progress, you are doing really difficult work and it is a very good thing; you deserve a smoothly working, pain-free body -- and "more free from pain" is good too, any progress is excellent.

I don't know, but is having the exact opposite problem related possibly? A lot of my core structural muscles like neck and upper back have been totally locked for years; I have been having a lot of very good PT to get the underlying joints mobilized again. Unfortunately this pattern seems to have damaged some joints as the alignment was pretty incorrect . I'm partially guessing here, there was no test directly connect these things but I have been feeling the tension slowly improve with mobilizations of joints and stretching, and emotions pop out from thin air sometimes, or sometimes later that day. So it's very good that you are working on this, and being kind to your body this way -- even if it's very difficult; you deserve to feel safe in your body.

It's very strange as it becomes more conscious; I have noticed myself go into protective positions with lots of tension a few times now, that match the patterns my PT has worked to get me out of. These things vaguely match the vague, emotion-free memories I have from how I was attacked for years (even if I never lost a limb or whatever so it "wasn't very bad" or whatever according to some family members.)

The tight underlying muscles have generally had no sensation; not numb, just "not there"; with massage, they started to itch, and this seems generally to proceed to a little more normal feeling. I didn't "follow" any muscles over days or anything, but my massage person noticed that a week after numbness with some work, an area itched and I said I could feel in it some. It's the muscles that give a sense of where I am in space, and my left side had areas of non-presence. I didn't notice this ever until massage made it clear that the two body sides didn't match.

I know that you had a bad experience with massage, @Chava; another option -- put a heating pad on a spot, massage it yourself with the heating pad, or just press lightly?

 

[Born to Run]

Nope it is not the most f*cked up thing I have read today :D

Or if you relate to a lack of inner support or core on both emotional and physiological or somatic levels. It's really like I don't have a backbone. I fight to hold myself up.

Yes, I totally relate to this. Since two weeks I have a spine now, so I know what you are talking about :meh: I also have had to put so much energy in holding myself up. I have never felt my back was like a shell though with an inner mushy consistence on the ventral side. I have always felt I had an inner core psychologically and even physically as I have a lot of power in my muscles, and I always feel everything, never numb. Abdominal muscles I have stripped down layer by layer in therapy, as each layer held different tensions and emotions. Actually not working directly on the muscles, but those were the effects I felt after specific emotions had been processed. I have not been able to sleep ventrally, because of the painful abdominal muscles for as long as I can remember. I have always had a very painful diaphragm and the tension in there is always the worst.
My lack of spine was related to a specific cause in the first year of life, as my mother did not allow me to stand up, and I had recently several therapy sessions in which I remembered being ferociously held down by my throat or actually they felt like killing attempts, and this became coupled with standing up. The enormous overwhelming feeling of being killed became a collapse state that I have carried in my chest area all my life. That is why I collapsed all the time the last months and I could barely stand before this topic could be dealt with in therapy. Since the session in which the collapse could be replaced by a different ending by me, I could stand up during the session. It took me a week to recalibrate my whole body, it was deep stuff. I know another layer is still hidden, but this one was the breakthrough one for me. I believe I am holding on to the deep rage that I have not let go.
Of course, without such a specific coupling I believe that the spine is a major concern if you received literally no support from primary caregivers.

@greenleaf I believe anything is possible according to your specific trauma and bodily disposition. I am sure you and Chava will make the necessary progress in this too.

 

[Chava]

The tight underlying muscles have generally had no sensation; not numb, just "not there";

Thank you @greenleaf this sounds familiar to me. I think some of my deep muscles are chronically tight too, seems to be what the PT says too, but I can't sort any of it out or feel any of it. My therapist was trying my lower tuning fork today and could feel it really far in her body and asked where I could feel it (little sound vibrations). Well, sort of in the 1/2 cm radius of where I set it, and a couple mm deep. But I find that to be a little helpful for "tuning in"...just can't physically reach the most messed up areas in my back. Chronic tightness, screaming at me, and yet feels like NOT ME.

Heat and all that helps mildly. I admit I want a real fix. And yet, I don't. I want to understand how to not need whatever these muscles are doing. When I can tolerate it and am feeling kind toward myself, just laying down with the right support and some music or something to hold my attention is helpful for short-term relief (right, no massage...you can't rub out locks muscles).

I also have had to put so much energy in holding myself up.

Yes. When it's much more exhausting than painful (I feel both) I really wonder if it's some manifestation of depression or just wanting to shut down but having to do my life. But it's confusing. When depleted from too many demands on my body (doesn't take too much sometimes), it's really hard to just hold myself up to walk to the living room or something really basic.

The enormous overwhelming feeling of being killed became a collapse state that I have carried in my chest area all my life.

That's what I feel too, not when super painful but when it's getting heavy and exhausting. Collapse.

It's helpful to hear someone else is working on stuff related to this theme. I have a hard time holding myself up in therapy. Nobody is pushing me too and I'm not trying...more like working on feeling safe where I'm at, tolerating little bits of feelings. On top of what I went in to therapy for I feel like just too much bad stuff has happened in the last year that I can't actually deal with but am managing to not actively self destruct.

 

[greenleaf]

As an aside, it's also weird as I'm slowly getting some of this feeling/deep muscle mobility back; well, I think these symptoms are from getting some of these area more "connected" -- it might be lots of myofascial stuff? -- itching, need for stretching but not like a normal muscle stretch... shivering too. I wish there were more info out there about this so I wouldn't feel like it can't be real.

I was reading a bit about fibromyalgia and myofascial pain stuff; I don't think I exactly have any of that, esp. as I've always exercised really regularly as a major coping strategy since maybe age 13... but I wonder if my brain/nervous system has done some of the things that can lead to those issues. (Exercise apparently really helps fibromyalgia, but is very hard to do once you have it full-blown.)

 

[Born to Run]

I have a hard time holding myself up in therapy. Nobody is pushing me too and I'm not trying...more like working on feeling safe where I'm at

Oh yes, in therapy! How do you sit? It is weird, but I can only sit on the edge of the chair completely folded together, like chest to legs. I have never used the back of the chair. The chair is actually too comfortable. Interesting again not using the support that is available from the chair, but sitting collapsed, or hiding my core. Also not using my own spine. It is very recently that I recovered my spine and now therapist is on holiday, so I have no good status update on how I would sit there today. Several times I thought I was out of this, but with the next layer I returned to sitting like a clam shell. You mention safe, but the thing is that I feel so safe with my therapist, he is a man, and a man has never really hurt me, so that helps tremendously. Still I sit there like all predators can turn loose any moment.
The collapse state was really tied to my core being in my chest, and even now this is gone my back is still not fully operational support wise.

it's really hard to just hold myself up to walk to the living room or something really basic.

Same here, but even more so the standing upright for a while, for example cooking is extremely difficult. I can hardly do it. I don't know if kitchen/food are related to the mother figure, and therefore extra difficult. How are you in the kitchen?

I really wonder if it's some manifestation of depression or just wanting to shut down but having to do my life.

The collapse state is actually the fourth F; the faint state, the state where freezing no longer works. We turn to flaccid immobility instead of tonic immobility and as a very young baby this stuff was so overwhelming and inescapable that freeze was skipped, and directly led to collapse. It is having given up totally, and it is so contrary to life in which movement is the basis, and energetically so consuming to override the collapse state every day and hold yourself in one piece physically with whatever muscles are able to do that, while we should move freely.

 

[Born to Run]

but I wonder if my brain/nervous system has done some of the things that can lead to those issues

I thought fibromyalgia is linked to ptsd, at least that is what my therapist told me. For example:

Link Removed

 

[Chava]

Oh yes, in therapy! How do you sit?

On the floor, against the couch, knees hugged into my chest, hands or arms usually holding my head up for me...or little ball child's pose with head curled way in, feet crossed, elbows even sucked in between my knees...like as compact as I can get. Something is always holding me up though. The few times I've wanted to move, I drag myself because my lower body is sort of non-functional.

The collapse state is actually the fourth F; the faint state, the state where freezing no longer works. We turn to flaccid immobility instead of tonic immobility and as a very young baby this stuff was so overwhelming and inescapable that freeze was skipped, and directly led to collapse. It is having given up totally, and it is so contrary to life in which movement is the basis, and energetically so consuming to override the collapse state every day and hold yourself in one piece physically with whatever muscles are able to do that, while we should move freely.

Thank you...I've never heard of this (flaccid immobility). Effing depressing, but I do relate so deeply to collapse. It would seem easily connected to chronic pain and also chronic fatigue (not saying every case). I get really sick of just being alive and doing stuff but nobody else can pay my bills or get groceries for me. I do my life. Very very few "fun" things, just sort of surviving. I want to branch out more but I'm really tired by the time I've just done what I need to do.

 

[Chava]

but I wonder if my brain/nervous system has done some of the things that can lead to those issues.

There is a higher incidence of past trauma in fibromyalgia and chronic pain...don't quote me because I don't remember the source (multiple...I've read a lot about chronic pain and how some people get it while others heal normally). That's not saying trauma causes the pain (though possible in some cases). But there is a connection between nervous system dysregulation and pain dyregulation. Also stuff like my body doesn't probably produce enough of its own feel-good chemicals...all the neuroendocrine stuff (research in connections between nervous system and endocrine system is relatively in baby stages).

 

[Chava]

p.s. @Born to Run I looked up flaccid immobility a bit (too depressing right now). Makes a lot of sense.

I've nearly fainted in therapy...everything went limp and probably something changed in my eyes, it was just a second but my therapist caught it right away and grabbed my feet and held onto them. This has also happened at the clinic and the doctor stopped and said my name a bunch of times and someone grabbed my hand...glad they noticed right away...so I think it's that my body fainted but I was on the very edge of loss of consciousness. The limpness was sudden and obvious. Timing was good so I didn't get sucked down.

Collapse very often, like I'm fighting it all the time. I can be really out of touch in therapy but probably more like tonic immobility (have this at home too). But the going dead and limp seems mostly limited to body parts in therapy, which helps me keep a sort of dual awareness for the most part (important to develop in body psychotherapy). My left arm has "gone to sleep" (just shutdown all info and whatever it was doing) but my right hand could hold it or try to revive it (weird, yeah). Now I'm sort of able to "wake up" my left hand with subtle sound vibrations (sounds and sound vibrations help me pull out of other forms of frozen states too...seems to work when nothing else does or I can't re-orient).

That being said I don't feel most of my body, except the place that is painful (and like I said above it's easiest to drag my legs behind me if I want to move anywhere in therapy). This all sounds pretty horrible, but there is some dual awareness...like I'm dragging myself but I am trying to reach a stuffed animal that my therapist offered to get for me...but I want to get myself (just can't move normally...better once I got the stuffed animal)