Has anyone experienced or heard of these neurological symptoms?

[Juliatwelve]

Hello,

I am new to this forum but not new to cPTSD. A few years ago I started experiencing extended bouts of neurological dysfunction related to cPTSD that at its most extreme is total physical freezing, particularly in my legs and sometimes accompanied by the inability to speak. It has evolved into extended – sometimes months – periods of time with having a difficult time walking, feeling as though glass has shattered under my skin, and struggling with finding everyday words when trying to speak. I've seen specialists, tried medication, yoga, mindfulness, somatic therapy etc. but the symptoms outsmart every form of management except long periods of bedrest and reducing sensory input. I've missed a lot of work and school because of this. The onset is sudden, and when I'm not symptomatic, its as though it never existed. I've been assured by doctors that I do not have a neurological disease and that this is the result of trauma.

If you have experienced anything like this or have heard of this happening and have resources for me, I would be so grateful to hear from you.

Thank you very much.

Julia

[ah]

Hi julia,

I've got no experience with these symptoms but they sound terrible! Especially not being able to predict them.
I'm glad your doctors realize it's the result of trauma and don't tell you it's "all just in your head", they sound like the good kind.

Welcome

[Three Roses]

Welcome! My physical symptoms are not anywhere close to yours and so I have no insight, but I'm glad you're here. Thanks for joining!

[sanmagic7]

hey, juliat,

i have symptoms such as yours, especially not being able to move well.  it's like my brain is sending out the messages, but my muscles aren't receiving.  i've experienced them anywhere from 3 days to 3 months.

they usually happen after an extremely stressful situation, or a culmination of same.  the stress can be mental, emotional, or physical.  onset is sudden - i'm ok going in, then my legs simply stop working.  my best bet for recovery has also been rest and reduced stimulation.

lately, i've discovered that when some type of stress occurs that would normally cause my legs to become wonky, if i get angry about it, my body doesn't react with 'the slows', as i call them.  it's led me to believe that it's an emotional repression that's causing such a reaction.

several times in the past few months (especially dealing with lots of docs and medical crap) i would just let my anger fly when hearing a diagnosis (i apologize afterwards, but it really feels good to just let it out), and i've been able to walk out of the office normally.  before that, i'd walk out on wobbly legs, bent over like an old crone, moving very slowly.  i've even been offered wheelchairs when personnel observed this.

now i'm thinking there is power in my anger, power that i haven't felt in my body for over 20 years - that's how long this has been going on for me.  i got an mri after a doc noticed this, but was told everything is normal.  they wouldn't schedule me for more than a routine mri, so i can only hold my own counsel on how 'normal' my brain/mind is.

just wanted you to know that you're not alone with this, and how i'm discovering there might be a connection between my emotions and my muscles.  i think it is 'all in my head', but now i can see it as a more positive thing.  this is something i have some control over, if i just allow myself to feel and express how i feel.  it's been quite an eye-opener. 

best to you with this, julia12.  big hug.

[Blueberry]

Hi Julia,
I've seen paralysis happen to somebody else in inpatient treatment. The docs / therapists said: this happens to her sometimes, no cause for worry. We other patients managed to get her onto a chair and a couple of stronger ones carried the chair out of the room to where she needed to be. Later that day, she was back on her feet. I don't know what it felt like to her, I wasn't that close to her so I didn't ask. She was willing to be carried on the chair, that's all I knew.

'In my travels' I have come across a few people with MS who've attributed it to trauma themselves, and somebody in a wheelchair who could no longer move her lower body, who also attributed it to her bad childhood (basically trauma IMHO). When I did a type of body therapy with her, my legs briefly took on paralysis, which was kind of interesting...

I used to get waves of weakness so bad I knew that if I didn't lie down, I'd fall down. It was terrible. But i've overcome that. Before that I used to get a lot of pain and/or weakness that hopped about, i.e. as soon as I took some drugs to clear it up, it went somewhere else in my body.

I also have had something that sounds a bit similar to what sanmagic describes: listening to instructions like "put your right knee on the ground and lift up your left leg" and only being able to follow really slowly or not at all. I was dealing with small Inner Children at that point, who couldn't differentiate right and left. I know it sounds really weird, if you're not used to working with Inner Children. But it was a bit as if the connection was missing between my brain and my body.

I've never had anything that sounds remotely as bad as what you have or as long as you've had it. Maybe some of what I've written can still be useful in some way.

[Blueberry]

Sorry for the hijack, Julia.

lately, i've discovered that when some type of stress occurs that would normally cause my legs to become wonky, if i get angry about it, my body doesn't react with 'the slows', as i call them.   ...

several times in the past few months (especially dealing with lots of docs and medical crap) i would just let my anger fly when hearing a diagnosis ... and i've been able to walk out of the office normally.  before that, i'd walk out on wobbly legs, bent over like an old crone, moving very slowly.   

now i'm thinking there is power in my anger, power that i haven't felt in my body for over 20 years

Wowser bowser, sanmagic! That sounds like real progress  Yay for letting loose with that anger!

[BlancaLap]

I don't have that problem (well, my legs start walking wierd when I see "special" people due to stress... and I have ticks and sometimes I'm unable to smile "normally" (why would I anyway, I have emotional numbness... I'm so dumb... because I force myself to smile)) I don't know what to recomend you... sorry. Good luck!

[BlancaLap]

Oh well, I didn't mention that the first week of uni, the friday, I felt like I couldn't fake a smile anymore (and still can't), and that's a shame because faking made me more confident, and now I act so insecure...

[Kat]

Wow, Juliatwelve, that sounds absolutely awful.  I'm so sorry to hear about your experiences.  You, too, Sanmagic. 

I've no medical training or any training in neuropsychology or anything like that, but what you've both described made me wonder if it isn't some type of extreme freeze response.  I'm sure you've read about the way prey animals will freeze and kind of give in to imminent death.  However, I think this is accompanied by a surge of endorphins which neither of you described. 

Could it be that expressing your rage, San, breaks this freeze response?  Is that even possible?  One thing I learned from my Somatic Experiencing therapist is to visualize running as fast and hard as I can when I'm feeling anxious or fearful.  I usually envision running up a mountain trail being chased by something like a mountain lion that I finally out run.  Then I visualize just flopping to the ground, safe atop the mountain.  It helps.  I can't see how it could hurt to try something similar. 

Best of luck.

[sanmagic7]

wow, kat, never thought of it as a freeze response, but that does make sense.  i would have week-long breakdowns where i could barely move after being overwhelmed by the stressful situation in our family.  i'd ask my ex to take over, tend to the kids, etc., and he was absolutely useless at that, so i'd have to do what needed to be done anyway.

the one thing i absolutely couldn't do was drive, cuz my reflexes were so slow.  i'd miss work cuz of this - also a stressful job (therapist to troubled adol. girls, and then i'd come home to my own troubled adol. girls.)  it was like i got overwhelmed with the stress that my body just shut down, gave itself a break so it could recharge. 

in those days i never felt anger.  i had 4 of these happen in a period of 5 yrs.  i was so tired, i had my d drive me to see my shrink to try to go inpatient in order to rest.  sitting in the waiting room while he filled out the paperwork, i suddenly realized that i wasn't crazy, but that the entire situation around me was. 

it was a spark of energy (still wasn't feeling emotions at the time) that rejuvenated me, and suddenly i could move normally.  i told my d that we were going home, that i didn't belong here.  within 2 days i quit my job and made my plans to run away to mexico to heal.

it's only lately, tho, that the anger connection has come into being.  i've finally discovered my anger, and it really gives me strength and energy.  being bereft of emotions for so long has been the basis of a lot of my physical problems.  that's what i believe anyway.

that's an interesting image of running up a mountain.  glad it works for you.  thanks for the idea.  hugs all around.

[Kat]

Holy, smoke, San!  That's a huge amount of emotional/psychic energy you were expending.  No wonder your body would shut down.  I went through a really stressful period similar to what you described in that it all felt nonstop and like I couldn't get a break to even come up for air.  For me, I would make it through the work week, but then I'd sleep pretty much all day Saturday and most of Sunday before it all started up again.  I was sleeping 15-plus hours regularly each weekend and still never felt rested.  When our bodies decide to say no, they mean it, don't they?

[sanmagic7]

they surely do.

[Phoebes]

This topic has had m thinking a lot. I came back to it, because I hadn't thought of some of my symptoms as neurological before. This kind of goes with a recent topic I wrote about, a low vagal response I found out I had after a small accident.

After the retraumatization that triggered this major CPTSD episode where I chose to go NC, I have felt like I have "shut down". At times almost to the point of not being able to speak. I have been embarrased by my "behavior" at times, especially at a weekly music class I go to. I went from peppy (partly an anxiety response, but also because I enjoy it), to flat affect. I know I have, but I feel powerless to be peppy when I am far from peppy on the inside.

It got me thinking- I've been outgoing, active and energetic in t he past, even through times of somatic illness and extreme anxiety about going home or holidays. I guess I just had accepted all of that as normal, and after an upsetting visit with my Nm, I would be able to block it out after a couple of days. I didn't feel in control of my life, but I had more fun and was able to laugh, emote and enjoy life more. (At the same time, subconsciously choosing the worse N relationships.)

Now, I just feel DONE. My body and mind have shut down a lot over the last couple of years. I'm the most concerned about how I feel my affect is flatter and I have less emotion. I don't have the range of feelings I used to. Things don't excite me anymore. I've seen it all through times of being abused, and now there's no newness to exciting things. In a way, I was innocent and naive before, enjoying life for the "first time" after an extremely over protective and controlled childhood. Life took on new meaning.

I thought it was just depression, but this topic has been on my mind, and I am concerned it IS neurological. I was an athlete most of my life, and now sometimes I find it physically difficult to walk the dog. My legs just go slow. It's hard to get excited, emote or feel. I'm tired. I feel "done."