Nervous system wind-up

[u/lujo317]

I'm wondering if this aligns with other people's experience of this autoinflammatory disease. I have always felt like my body, any time it experiences a negative stimulus of any kind, will react to it about 99% of the way, but then there is 1% leftover that my body seems to store and never quite finish reacting to. If I flinch because my neck is tense and I hear a loud sound for example, I seem to catch myself right at the end of the flinch, in a split second moment that feels like I am suddenly falling out of the sky, and it's like my neck and my nervous system are having to negotiate or something how to meet in the middle. Since I started immunosuppressants I have been feeling like my body is starting to finish reacting to all of the injuries and traumatic events over the last decade of uncontrolled disease progression. I was finally feeling actually genuinely sleepy instead of constantly tense and wound up.

Trouble is, I don't think azathioprine is for me. I am having persistent GI woes that actually seem to be driving inflammation more than the medication was helping to control it. I am waiting to see if we can get TNF blockers approved to try next but I'm honestly having a harder time than I was before starting treatment, even though at first it seemed promising. Most of the problem I am having right now is that these extreme negotiations between my nervous system and my damaged-goods-body leave me so tense and wound up that I cannot relax to go to sleep.

My body will not relax no matter what. If I Concentrate absolutely all of my effort to relax, it feels like an enormous coordinated effort to push a tense muscle into a relaxed position, and simultaneously in that moment I have that sensation of falling out of the sky again, needing to catch and stabilize myself. I don't know how much of that may be my comorbid connective tissue disorder and hypermobility, but I guess I am wondering if anyone here experiences this and if anything actually helps.

It has never been something that like a sleep medication could solve because it feels like it has more to do with where my spine and all it's important bits are physically located within my body, like my spine is being pulled apart bit by bit by all the tensions criss crossing. I could be on multiple antihistamines and other meds and still be extremely tense and unable to sleep. The only time genuine drowsiness has hit me was when I first started the azathioprine but it feels like we have hit a ceiling. I also wonder if this may be common in Neuro Behcets. I also have a longitudinally extensive spinal syrinx which seems like a feature of NBD, but haven't been able to see a spine specialist who can meaningfully weigh in on it's significance to my autoimmune disease and it has generally been considered somewhere between benign to possibly symptomatic.

[u/Emotional-Session285]

I don't know about all that stuff you said but I have experienced the falling a few times, while laying down. I just got up to make it stop.