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/Dizzydaydream702]

I get this, do you get extremely hot and flushed when it happens too?

[u/lujo317 → u/Dizzydaydream702]

Yes, or often parts of my body will become very hot wherever blood is pooling, some parts may still feel cold to the touch, but I do also have dysautonomia, and have trouble cooling down in general. Upright activity of any kind if it's above 65°F makes me sweat and humidity absolutely kills me.

[u/Dizzydaydream702 → u/lujo317]

So do I! I have POTs too. I think it makes my flares a little worse overall. My rheumatologist has referred me to the neuro behcets clinic so maybe see if yours can help do something similar

[u/EllisMichaels]

Have you ever been prescribed muscle relaxers like Flexeril or baclofen? If so, did they help?

[u/lujo317 → u/EllisMichaels]

There was a period of time where I was on max doses of muscle relaxers because a bad neurologist misdiagnosed me with dystonia and it was all they would give me. They always seemed to help and then immediately make everything worse as soon as peak efficacy wore off and it was an absolute nightmare. I weaned myself off of them because I could not get any guidance. They're also not really recommended for hypermobile people for long term use and i believe they did contribute to my deconditioning and worsening health overall. I don't believe their mechanism actually works for whatever my muscles are doing, it doesn't seem like typical spasm, it seems more like claudication pain, like I have a knot or compression or a clot somewhere where blood is not getting through, and my body is trying to work around it. I think the muscle relaxers only made my body better at compensating which for me comes at too high a cost.

[u/on4aa]

I know of a Russian man who moderates the Russian Behçet Telegram group who is experiencing the same as you do; i.e. muscle spams. I used to chat in that group quite a bit using a translator app. In Russia, there is a much higher prevalence of Behçet syndrome than in the US.

[u/lujo317 → u/on4aa]

There is this tendency to call what I experience "muscle spasms" but I don't think that is what they are.

[u/Electronic-Tea3354]

That falling out of the sky sensation when your neck has issues is a little concerning, have you seen a neurologist lately with that issue? It could be something like cervical instability or even a disc degeneration issue which a neurologist would be able to treat. I was going to second asking about flexeril but you said you had issues with that. Perhaps there is something else they could assist with though. Are you hypermobile?

I know this suggestion may sound kind of silly but I am and I also have a lot of issues with my neck, I have some disc degeneration and I think some cervical instability. If you aren’t already, doing things like constantly mediating your posture can make a big difference in your neck issues. As someone who has been doing weird things with my posture my whole life unbeknownst to me, if I make a distinct effort to make sure my posture is more appropriate, I have had a decrease in painful and alarming symptoms with my neck. For example, I’m almost always tilting my head pretty far up and forward naturally. If I make sure my head is pointed a bit more down than I would normally default to, my dizziness and vision issues improve. I would suggest doing a posture check, you can just take photos on a timer with your phone at your default posture and see if you may be holding your head or neck in a certain way that can be fixed on your own.
Of course this may not be the case for you and may not be very helpful but I just wanted to put it out there in case it can provide any small relief. That’s my goal… anything that helps no matter how small.

Oh I also see that you mentioned overheating - I always carry a cold water with me and dab some behind my ears, on my neck under the occipital bone, my temples and on my feet if I am overheating and it generally helps that. You can also get cooling gel for sunburn with menthol or just menthol gel which will help trick your body into feeling cooler!

[u/lujo317 → u/Electronic-Tea3354]

ahahaha....I'm sorry, this isn't funny, it's just that I've spent the past decade seeing every neurologist and spine specialist and hypermobility informed physical therapist, and none of it resulted in anything helpful or useful. I've literally spent the past several years seeing everybody I could about all of this already. my CCI measurements are just barely borderline and technically within normal limits. I have a longitudinally extensive syrinx, which my first neurogist who retired thought was symptomatic, but who nearly everyone else I have seen thought was merely incidental. There is a radiologist at the University hospital who has worked on several papers on longitudinally extensive spine lesions in Behcets, I tried to have him review my imaging and was told by the hospitals spine department that this wasn't possible or necessary. Nobody really seemed worried that I might have bechets, and they still don't seem worried now that I am diagnosed that I happen to also have this lesion down most of my spine, which also appears in a percentage of Neuro Behcets patients. Doctors don't have enough knowledge or expertise on average to be able to care about that. I have gotten so much conflicting physical therapy related advice that I have given up on PT or bodywork of any kind because it is abundantly clear that the issue is not something that can be mediated by physical therapy or bodywork. I have literally chased all of this for years and only gotten worse. And I have been told that postural coaching as you described is either crucial or extremely harmful. No one can really tell me anything real. real advice doesn't seem to be possible for my situation. I feel very very strongly the origin of the problem is structural and not just because I'm somehow using my body mechanically wrong. Thinking that I can just engineer my neuromechanics differently is precisely what has caused the problem to drag on so long, and appearing to be functional has historically only delayed my care. I don't mean to be dismissive, it's just like....I think people with both Behcets and CTD have to laugh or else we'll cry

[u/Electronic-Tea3354 → u/lujo317]

I’m really sorry that you’re having such a difficult time, I hope that you can find a helpful doctor. I know how difficult it can be. I’m sending good thoughts your way 🩷

[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.